(Ashley Stanford) Asperger Syndrome and Long-Term

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The document discusses Asperger Syndrome and challenges individuals may face in maintaining long-term relationships.

Asperger Syndrome is a type of autism characterized by difficulties in social interaction and restricted repetitive behaviors. Some characteristics include issues with social skills, focus on details over global meanings, intense interests, and sensory sensitivities.

Challenges in relationships for those with Asperger Syndrome can include issues with social reciprocity, theory of mind, sensory processing, and rigid routines which can impact intimacy. Trust, communication, and understanding each other's perspectives are also difficult.

Asperger Syndrome

and Long-Term Relationships


of related interest
Asperger’s Syndrome
A Guide for Parents and Professionals
Tony Attwood
ISBN 1 85302 577 1

Pretending to be Normal
Living with Asperger’s Syndrome
Liane Holliday Willey
ISBN 1 85302 749 9

Asperger Syndrome in the Family


Redefining Normal
Liane Holliday Willey
ISBN 1 85302 873 8

An Asperger Marriage
Gisela and Christopher Slater-Walker
ISBN 1 84310 017 7

Living and Loving with Asperger Syndrome


The McCabe Family
ISBN 1 84310 744 9

Freaks, Geeks and Asperger Syndrome


A User Guide to Adolescence
Luke Jackson
ISBN 1 84310 098 3
Asperger Syndrome
and Long-Term Relationships
Ashley Stanford
Foreword by Liane Holliday Willey

Jessica Kingsley Publishers


London and New York
All rights reserved. No part of this publication may be reproduced in any material form
(including photocopying or storing it in any medium by electronic means and whether or
not transiently or incidentally to some other use of this publication) without the written
permission of the copyright owner except in accordance with the provisions of the
Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the
Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1P
9HE. Applications for the copyright owner’s written permission to reproduce any part of
this publication should be addressed to the publisher.
Warning: The doing of an unauthorised act in relation to a copyright work may result in
both a civil claim for damages and criminal prosecution.

The right of Ashley Stanford to be identified as author of this work has been asserted by
her in accordance with the Copyright, Designs and Patents Act 1988.

First published in the United Kingdom in 2003


by Jessica Kingsley Publishers Ltd
116 Pentonville Road
London N1 9JB, England
and
29 West 35th Street, 10th fl.
New York, NY 10001-2299, USA

www.jkp.com

Copyright © Ashley Stanford 2003


Foreword © Liane Holliday Willey 2003

Library of Congress Cataloging in Publication Data


Stanford, Ashley, 1969-
Asperger syndrome and long-term relationships / Ashley Stanford.
p. cm.
Includes bibliographical references and index.
ISBN 1-84310-734-1 (alk. paper)
1. Asperger’s syndrome. 2. Asperger’s syndrome--Patients--Family relationships. I.
Title.

RC553.A88 S825 2002


362.1’968982--dc21
2002028653

British Library Cataloguing in Publication Data


A CIP catalogue record for this book is available from the British Library

ISBN 1 84310 734 1

Printed and Bound in Great Britain by


Athenaeum Press, Gateshead, Tyne and Wear
To my family

You are my breath of fresh air


When life becomes stale.
You are the twinkle in my eye
When I smile.
You are my straight path
When my world stretches out in all directions.
You are my past, my present, and my eternity.
I relish every day with you.
I write of him
who fights
and vanquishes his sins,
who struggles on
through weary years
against himself…
and wins.

Caroline Begelow LeRow,


Pieces for Every Occasion
Contents

FOREWORD BY LIANE HOLLIDAY WILLEY 13


ACKNOWLEDGMENTS 15
PREFACE 17

1. One Day I Woke Up 21


2. What does Asperger Syndrome Look Like 25
in an Adult?
What is Asperger Syndrome?
Diagnostic criteria
Is Asperger Syndrome prevalent?
The adult population
Misdiagnosing Asperger Syndrome
What causes Asperger Syndrome?
Is there a “cure”?
The adult Asperger long-term relationship
What it looks like – Written by a non-AS partner
What it feels like – Written by an AS partner
3. The Full Realization 47
The initial diagnosis
Reaction to the diagnosis
Denial
The hidden condition
Is it a “disability”?
People’s judgments
The ultimate tool
Kicking the “normalcy” habit
The flip side of the coin
A paradigm shift
4. First Diagnostic Criteria – Impaired
Social Interaction 69
What it may look like: Eye-to-eye gaze
Implications and solutions: Eye-to-eye gaze
Trust
What it may look like: Facial expression
Implications and solutions: Facial expression
Faceblindness
What it may look like: Body postures
Implications and solutions: Body postures
Clumsiness
Executive function and dyspraxia
The parent–child trap
What it may look like: Gestures
Implications and solutions: Gestures
Mindblindness
Reading people
What it may look like: Peer relationships
Implications and solutions: Peer relationships
Bullying/Teasing
Bonding
What it may look like: Sharing enjoyment
Implications and solutions: Sharing enjoyment
Sex
Babies
Children
What it may look like: Sharing interests
Implications and solutions: Sharing interests
Isolation
Intentional hurt
What it may look like: Sharing achievements
Implications and solutions: Sharing achievements
Appearance of withdrawal
What it may look like: Social reciprocity
Implications and solutions: Social reciprocity
Learning unimpaired social interaction
What it may look like: Emotional reciprocity
Implications and solutions: Emotional reciprocity
Give and take
Forgive and forget
The irony of codependency
5. Second Diagnostic Criteria – Peculiar,
Repetitive, or All-encompassing Behavior 135
What it may look like: Intense interest
Implications and solutions: Intense interest
Employment
What it may look like: Routines
Implications and solutions: Routines
Flexibility
Changing
What it may look like: Mannerisms
Implications and solutions: Mannerisms
What it may look like: Parts of objects
Implications and solutions: Parts of objects
Weak central coherence
6. Third Diagnostic Criteria – Disturbs
Occupational Functioning and other Areas 169
What it may look like: Social
Implications and solutions: Social
What it may look like: Occupational
Implications and solutions: Occupational
What it may look like: Sensory dysfunction
Implications and solutions: Sensory dysfunction
Meltdowns
7. Fourth Diagnostic Criteria – No Significant
Delay in Language 185
What it may look like: Language
Succinct speech
Little professors
Parroting/Echolalia
“I don’t know”
Metaphors, similes, and other evils
The hypothetical
Unwritten rules
Implications and solutions: Language
Successful communication
Breakdown of all communication
Literal thinking
Wording criticism
Couples communication as a learned skill
The rule book
8. Fifth Diagnostic Criteria – No Significant
Delay in General Development 217
What it may look like: Cognitive development
Implications and solutions: Cognitive development
Creativity
Unimodal behavior
What it may look like: Self-help skills/Adaptive behavior
Implications and solutions: Self-help skills/Adaptive behavior
Availability to help
Reactions to physical danger
Reactions to grief
What it may look like: Curiosity
Implications and solutions: Curiosity
Breathing life into the relationship
Endgame implications and solutions
Am I a support person?
Imbalance
A framework
Anger – Why?
9. Sixth Diagnostic Criteria – Not Pervasive
Developmental Disorder or Schizophrenia 243
Not a pervasive developmental disorder
Not schizophrenia
Not clinically shy or other diagnoses
Why the confusion?
Faces, personas, and characters
“It’s not normal, but it’s natural”
10. The AS-Linked Long-Term Relationship 249
Why did we marry?
When the veil comes off
Acquired Asperger’s – Becoming aspergated
The caustic mate versus the healing mate
Divorce
The ideal mate
11. Help! Where to Look 261
Books
Articles
Counselors
Organizations
Web
Support groups
Friends
Family
EPILOGUE 271
GLOSSARY 271
REFERENCES 277
SUBJECT INDEX 281
NAME INDEX 287
Foreword

When I speak to an audience interested in hearing about Asperger


Syndrome (AS), I underscore that a support system is crucial to a happy
way of life for everyone involved. I do not think this is an insult to my AS
community. I believe most human entities flourish best under the glow of
friendly empathetic support. The goal, we with AS might need, is just of a
different hue and wattage. We need altered kinds of support and most typi-
cally, longer support, than the normal population might need. Parents of
children with AS often ask me who would be the most likely to provide
such support.
They wonder, “Will it be me? A supervisor at a group home? A trusted
friend? Who?”
Of course, I cannot provide one distinct answer to that question.
However, I can help those who need to know how to explore possible sce-
narios that might unfold for their child with AS. Only one of my responses
is characteristically met with astonishment and disbelief, even though that
very response is the mainstay of my daily existence. The answer that
confuses so many, but comforts the soul most sweetly is simple – a spouse
or significant other.
They ask, “What? Marriage? My child in any kind of interpersonal
relationship? You must be kidding me. People with AS never form those
sorts of bonds. Right?” Wrong. I would never joke of such a thing. The
truth is, no one knows how many adults engaged in an interpersonal rela-
tionship have AS in their mix of souls. In fact, we may never know. There
are simply too many obstacles currently blocking the way between adults
with AS and an official diagnosis from a qualified professional.
I myself have thought about writing a book on AS and interpersonal
relationships for quite some time, because I am the AS half of a successful
Asperger Syndrome/Neurotypical marriage and because I enjoy writing

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14 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

about AS. But the task soon proved to be particularly daunting to me. I am
not at all sure why. I am just sure it is something I am ill prepared to write
about. Thankfully, Ashley Stanford came to the task more than prepared
to logically, empathetically, and whole-heartedly answer not only all the
questions I thought I had on the subject, but even far more than I had ever
imagined were possible.
When Ashley asked me to provide the foreword for her book, Asperger
Syndrome and Long-Term Relationships, I was a bit nervous. I was very worried
Ashley might have written things that would upset me. As my AS father is
wont to say, neurotypicals have a better press agent than Aspies. In other
words, I worried I might read a dozen or a hundred things that would
upset my heart. I hear, all too often, the complaints and confusions of the
partners without AS, the partners who want so badly to understand the
whys behind their AS spouse’s ways.
I do not mind telling you that I had nothing to worry about. While I
methodically made my way through Ashley’s book, I kept comparing
myself to that of a child happily digging through a big community sand
box that held trinket after trinket of lovelies. With every turn of the page,
Ashley’s book just kept pouring out the trinkets. More and more and more
goodies just kept surfacing.
I cannot possibly make a list of all the things Ashley’s book covers.
There are too many! Good idea, after well-researched concept, followed by
illustrative example and elaborated suggestions – pile one on top of the
other until a tower strong and solid enough to withstand all sorts of inter-
personal uproar – stands smack dab in front of the reader.
This book is a keeper. A must-have. It is the very book I would hand
any adult involved in an Asperger Syndrome/Neurotypical relationship. It
really is that good. And I do not say that lightly. As proof of my belief in
this book, I will close by saying the following: people often ask my
husband how he manages to remain happily married to me, his Aspie wife.
Next time they do, I am going to suggest he refer them to Ashley’s book.

Liane Holliday Willey, EdD


USA
Acknowledgments

As I am a private person, I will probably never meet the people to


whom I am most indebted – the researchers and writers who toil
to define and quantify the condition we now refer to as Asperger
Syndrome: Simon Baron-Cohen, Uta Frith, Lorna Wing, Ami
Klin, and so many others. They have been my source of
inspiration when words and platitudes became confusing. When
the final efforts were needed to pull this manuscript together, I
turned to the professionals at Jessica Kingsley Publishers. They
are heroes in the field of Asperger Syndrome awareness as they
build a continuously flowing source of information and support
for us all. Finally, I acknowledge the kind words of
encouragement from my family and friends. They never gave up
on me.

Note
The author of this work has chosen to use a pen name to guard the
privacy of her family. While some readers may grasp for a stronger
author voice, those who truly understand the intricacies of Asperger
Syndrome and the social difficulties it entails will recognize and
respect the need for privacy.

15
Preface

My background is in technical communication and curriculum develop-


ment. I thrive when I’m solving problems, both technical and educational.
When I discovered my husband had Asperger Syndrome (AS), I attacked
the “problem” as natural-born researchers often do: I looked on-line, in
bookstores, asked around the community nearby, and the world at large. I
found plenty of strategies that sounded helpful, but proved disastrous at
home.
As many of us do, I lost hope quickly. I found discouragement at every
corner: “People with AS shouldn’t marry” and “Most AS marriages end in
divorce.” I was looking for answers, not opposition. In my research I
noticed that there are constant breakthroughs and improvements in what is
available to children with Asperger Syndrome and their parents, but I
found precious little in the way of marital help. I began digging for what
worked and suffering through what didn’t work.
Back in my early married days, a good friend of mine (an airline
stewardess) advised me regularly to “Put your own air mask on first,
sweetie.” I have adopted this as a mantra for how I approach my AS-linked
marriage. By putting on my own air mask first, I make myself a stronger
person who is then capable of helping others around me. I am of no use to
anyone otherwise. This book is my air mask – a conglomeration of most of
the understandings and solutions that have helped me build a healthier,
happier marriage.
This book does not have answers for everyone. No one does. All I can
offer is an unquenched desire to determine what makes AS-linked adult
relationships work. I believe that the most reliable solutions for now
consist in wrapping our minds around the full extent of the diagnosis, then
brainstorming for solutions within that framework that will work for us

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18 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

personally. My goal as a writer was to organize insights and potential


solutions into one easy format. You never know when one chance thought
or story will give you the breath of fresh air you need.
Be forewarned: this book has no answers for how a person with AS can
be “cured” or “recover.” This book isn’t going to enlighten your AS partner
to his “errant ways” and it definitely isn’t going to change his behavior. It’s
going to change your understanding and, in turn, both you and your partner
will benefit. We can’t “improve” our partners directly; we can only improve
ourselves.
I am writing mainly to the partners of those with AS. It doesn’t matter
if you’re male or female, although I mainly use “him” since the statistics for
the diagnostic rate currently dictate that AS male/non-AS female relation-
ships are most common. I also make little differentiation between a
marriage and a long-term relationship. From what I’ve seen, the dynamics
are about the same. I hope that, as you read, you will be able to see beyond
the titles of “him” and “her,” “marriage” and “relationship.”
Choosing appropriate terminology for labeling people is the most
annoying problem when writing. No matter what terminology I choose, I
will offend someone. Are we NTs (neurotypicals)? Not quite. Few readers
will be neurologically typical. Are we non-AS or non-Aspies? Not really. I
don’t define myself through my husband’s diagnosis. What are we then? I
have chosen to use NT when discussing the distance between the AS and
NT realms. I use non-AS when considering matters related to the AS diag-
nostic criteria. The term “Aspie” is a softer, friendlier term and I prefer to
use it when showcasing the more advantageous AS traits.
It is equally awkward to label persons with AS. Is he a person with AS
(politically correct people-first terminology), an AS partner (a term that is
more visually pleasing), or an Aspie (a positive term similar to “genius,”
“artist,” or “intellectual”)? I have chosen to use the people-first, diagno-
sis-second terminology (a person with AS) when speaking of matters per-
taining to the AS diagnostic criteria. The term AS partner is used in more
casual situations where describing a particular behavior or an anecdotal
story. The word Aspie is used whenever possible, in the areas where the
person’s strengths shine.
The information in this book is useful for both AS/NT couples and
AS/AS couples due to the fact that there is significant carry-over between
PREFACE 19

the two. Even if you started out as an AS/NT relationship, you may end up
functioning like an AS/AS relationship at times. People who marry those
with AS begin to take on AS traits as time ticks by, becoming “aspergated”
as they live with their Aspie partner day after day, year after year. No
matter what combination of traits you combine within your relationship,
insights can be gained by familiarizing yourselves with the intricacies of
the diagnostic criteria and pondering the implications for long-term rela-
tionships.
Since this book is based on the very personal experiences of people
who are often in painful situations, all names and descriptive details have
been omitted. I have chosen to indicate only “a man” or “a woman.” All we
need is the essence of the experience – what has worked for them. Some
stories are specific examples from a few select couples that I know person-
ally, many are personal experiences of my husband and me, and some are
based on experiences that are so common that you’ll probably think I’m
writing about you.

Disclaimer
Please note that the common examples come from widely published information pertaining to
Asperger Syndrome. They are noted by: “For example…” These examples are fictitious and
are based on information that is classified as common knowledge. These can be verified easily
by reading about Asperger Syndrome (see the final chapter of this book). With the less
interesting facts, uncommon details are added to help bring life to the examples. The examples
cited as “One woman said…” or otherwise identified as belonging to a particular individual,
come from personal friends of the author or from the author’s personal experience. No real
quotes or example quotes were taken from any other source. The Internet was not used as a
source for quotes as there is no way to verify the validity behind these sources.
CHAPTER 1

One Day I Woke Up

One day I woke up to find that the man sleeping beside me was still a
stranger. I knew the rote information about his past – when he was born,
where he went to school, his favorite color – but I didn’t know him. I
didn’t know his hopes for the future, his regrets, his aspirations, nothing
personal.
He knew next to nothing about me. He had never asked. He only knew
what I offered. We had been married eight years.
This bothered me. I didn’t have any preconceived notions of wedded
bliss, but this seemed odd. We spent more hours together than most
couples. We communicated. Ask either of us any type of rote information
about the other and we would pass the test with flying colors. “What is her
blood type? Social security number? Driver’s license number? What were
his grades in college? What courses did he take?” We knew every technical
detail about each other but we knew nothing deeply personal. I had never
heard him say, “I feel…” or “I wish…” I had been patiently awaiting a
deeper level of bonding but it still hadn’t happened. Something was
missing. I suspected it had something to do with spirituality or repressed
emotional problems in one or both of us, but I was at a loss for answers.
I spent the next three years examining his childhood. Was it something
his mother did? Did he learn to repress everything? It seemed that his
heart was under some sort of elusive shield that I couldn’t lift. The more I

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22 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

searched for answers, the more frustrated I became. His mother was a saint.
His father was supportive and a superb role model. They did everything
possible to help their son develop into a strong man. There hadn’t been
any trauma in his childhood that would have caused the anomalies that I
was seeing in him and in our relationship.
I spent the next two years frustrated. I read nearly every marriage
therapy book I could get my hands on, each of them proving a disappoint-
ment. I went into therapy only to walk away with a sense that both my
husband and I were in a territory unfamiliar to the therapists. Everywhere I
turned, the answer was the same: “This is odd.”
During this time my husband’s sister discovered that her son was
autistic. With a diagnosis of high-functioning autism and hyperlexia, she
dove deep into the autism community and found the resources she needed
to help her child function and even thrive. After several years, she men-
tioned Asperger Syndrome. Did her brother (my husband) have it?
I surfed the web for information on Asperger Syndrome. The diagnos-
tic criteria were shockingly familiar – my mind whispered, “This is him.”
Everything made sense. Everything fell into place. I felt deep pangs of
regret for all the times I misspoke, for all the times I underestimated and
overestimated him. He was trying his best to be the husband I wanted and
needed but there were certain things about the way his brain works that
made life extremely difficult for both of us. I never understood why we
couldn’t just take off and spend the day in the city. Or go on a hike. Or have
a small change in plans. Why was everything so difficult? Now I was
flooded with all the reasons.
As many newly discovered Aspies and their partners do, my husband
and I followed the predictable path. I did full-time research about AS while
my husband continued with his life, interested, but not interested enough
to do anything about it. I read books by Tony Attwood, Liane Holliday
Willey, Uta Frith, Simon Baron-Cohen, Ami Klin, Lorna Wing, Temple
Grandin, and many others. I read into the wee hours of the night while he
snoozed beside me. As I read, I understood why he didn’t seem to care. He
already knew all this information. He was who he was and he was at peace
with it. I was the one banging my head against the wall in frustration over
my lack of understanding. He couldn’t share this information with me
because he couldn’t verbalize it. He only understood AS as “the” way of
ONE DAY I WOKE UP 23

being. He didn’t have anything else to compare it to because he literally


could not see other people’s way of seeing.
As I learned about AS, I kept extensive journals, notes, and documenta-
tion. I learned that there is a booming population of autistic individuals
who are frustrated by a lack of understanding on an adult level. I decided
to put my technical writing career on hold to pull together a book that may
possibly help others like me who are searching for understanding. People
with AS and their partners are beginning to form a community identity –
the main aspect of their identity is that they (myself included) are desperate
to find answers before they lose their significant other to the cold misun-
derstandings that shut out the best of us.
Finding answers has been exhausting but the benefits have been a
thousand-fold. In the process, we’ve found that our children also exhibit
AS tendencies and we’ve been able to restructure several parts of our lives
to better help them grow into their potential. As others in my situation
have also discovered, the journey is grueling but well worth the effort. This
journey has forced me to open my eyes.
I believe that someday we will wake up as a civilization and realize that
the Aspie traits that now confuse us are part of the core of human progress.
Geniuses throughout history who have been previously identified as
highly eccentric are now being recognized as having AS and are being
authoritatively diagnosed post-mortem. I believe that as we become more
sophisticated in our perceptions, we will realize some of the brilliance
behind the Aspie brain. When I first met my husband, I sensed in him an
intense ability to think differently. If I learn even a little about his Aspie
brilliance before I leave this mortal sphere, then I will have won.
CHAPTER 2

What does Asperger Syndrome


Look Like in an Adult?

Asperger Syndrome (AS) in an adult may be harder to detect than it is in a


child because adults have had decades to consciously restructure their
behaviors, hiding their more obvious symptoms. As you look at the diag-
nostic criteria, be aware that you often need to look underneath the adult
layers of self-preservation strategies and avoidance tactics. If at all possible,
get accurate information about the potential Aspie’s childhood. Informa-
tion about childhood is crucial because it shows whether or not the
apparent AS traits are consistent or if the apparent indicators are just a life
phase.

What is Asperger Syndrome?


Asperger Syndrome is a newly recognized condition that affects a person’s
ability to make and maintain relationships. In 1944 a man named Hans
Asperger, a Viennese pediatrician, defined this particular neurological con-
dition. It wasn’t until 50 years later, in 1994, that the American Psychiatric
Association recognized this syndrome as legitimate and included it in their
diagnostic manual. Many people still don’t know about Asperger
Syndrome, since knowledge of it has not permeated far enough yet for

25
26 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

many doctors, let alone the general population, to be sufficiently aware


of it.
Asperger Syndrome is said to be on the “autism spectrum;” i.e. there are
several types of autism and AS happens to be one of them. People with AS
are said to have “a dash of autism” (Asperger 1979, p.49). Contemporary
professionals all seem to have their own viewpoint of where AS lies on the
autism spectrum. The most common opinion at the time of writing is that
AS and high-functioning autism (HFA) are so similar that they can be used
synonymously for most purposes (Attwood 1998, p.150).
AS is difficult to identify because of the subtle nature of the symptoms.
There are no physical signs of the disorder: no wheelchair, no glasses, no
crutch. It takes a well-trained eye to see the lack of gestures, poor eye
contact, odd communication style, and other indicators that trigger recog-
nition of the condition. The lack of obvious outward signs can either be
considered a blessing or a curse. On the one hand it allows the person with
AS to hide the condition, sneaking through the normalcy detectors that
exist in the world, while on the other hand it leads to incorrect assump-
tions and misunderstandings. One minute your partner appears as normal
as can be, and the next minute he appears rude and callous, oblivious to the
accepted rules of social behavior. Because a person with AS can achieve
apparent normalcy, it can be hard to explain to friends and family that the
odd behavior is not deliberate.
The following list may trigger recognition of some outward manifesta-
tions of the condition. Keep in mind that not all symptoms apply to all
Aspies – not even close. Aspies can be as different as any of us can, but they
do share certain traits:
• socially awkward – may not make or keep friends
• preoccupation with a particular subject
• average to high IQ
• difficulty reading social cues, facial expressions, or body
language
• unable to fluently give and take in a conversation
• find emotions confusing, uninteresting, or nerve-wracking
• misread allowable body space between people
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 27

• naïve/gullible
• often unaware of others’ feelings
• easily upset by changes in routines and transitions
• may prefer to stay home
• imaginary play doesn’t come naturally – may not enjoy playing
with children
• probably prefer technical reading over fiction
• don’t make emotional connections with others
• may not make emotional connections with partner and children
• literal in speech and understanding
• stilted, formal manner of speaking
• may have difficulties with grammar, spelling, pragmatics,
semantics, etc.
• obsessive, repetitive routines
• tendency to rock, fidget, or pace
• a lack of hand gestures when speaking
• overly sensitive to certain sensations – sounds, lights, smells,
colors, etc.
• may not enjoy holding hands
• may be finicky about the softness of clothing or the taste of
foods
• physically awkward/clumsy
• unusually accurate memory for certain details.
When looking at this list, you probably found that many of the people you
know fit the AS traits in some fashion or another. Be careful – many
symptoms can be caused by environmental factors or may be a simple life
phase. AS is based in a person’s neurology, how his brain is wired, and is
generally consistent from childhood through adulthood. One of the most
accurate ways to know if someone has AS is to use the official diagnostic
criteria cited in this chapter.
28 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

It is hoped that this list has sparked some “so that’s what it is” recogni-
tion for you. Now, let’s get on to the core of AS – the diagnostic criteria.

Diagnostic criteria
There are many different sets of diagnostic criteria: ICD-10 (World Health
Organization 1993), DSM-IV (American Psychiatric Association 1994),
Gillberg Diagnostic Criteria (Gillberg and Gillberg 1989), the Australian
Scale for Asperger’s Syndrome (ASAS; Garnett and Attwood 1995), Diag-
nostic Criteria for Asperger’s Syndrome (Szatmari, Bremner and Nagy
1989). There are two sets of highly technically diagnostic tools: the
Autism Diagnostic Interview – Revised (ADI-R; Lord, Rutter and Le
Couteur 1994), and the Autism Diagnostic Observation Schedule –
Generic (ADOS-G; Lord, Rutter and DiLavore 1996). There are also two
sets of evaluation tools that are more appropriate for teachers and parents:
the Gilliam Asperger’s Disorder Scale (GADS) and the Asperger Syndrome
Diagnostic Scale (ASDS). Simple scales are being written for use by the
general public: the AQ Test (Simon Baron-Cohen in Wired 9.12, 2001) and
others.
Everyone chooses the set of diagnostic criteria and rating scale that
they prefer. I have chosen to build this book on the USA-based diagnostic
criteria, the DSM-IV, because my husband fits this set of criteria almost as
if they were written specifically for him. Following is the diagnostic
criteria for Asperger Syndrome (diagnostic code 299.80) as listed in the
Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV).
A. Qualitative impairment in social interaction, as manifested
by at least two of the following:
1. Marked impairments in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression, body
postures, and gestures to regulate social interaction.
2. Failure to develop peer relationships appropriate to
developmental level.
3. A lack of spontaneous seeking to share enjoyment,
interests, or achievements with other people (e.g. by a
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 29

lack of showing, bringing, or pointing out objects of


interest to other people).
4. Lack of social or emotional reciprocity.
B. Restricted repetitive and stereotyped patterns of behavior,
interests, and activities, as manifested by at least one of the
following:
1. Encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that is
abnormal either in intensity or focus.
2. Apparently inflexible adherence to specific,
nonfunctional routines or rituals.
3. Stereotyped and repetitive motor mannerisms (e.g. hand
or finger flapping or twisting, or complex whole-body
movements).
4. Persistent preoccupation with parts of objects.
C. The disturbance causes clinically significant impairment in
social, occupational, or other important areas of
functioning.
D. There is no clinically significant general delay in language
(e.g. single words used by age two years, communicative
phrases used by age three years).
E. There is no clinically significant delay in cognitive
development or in the development of age-appropriate
self-help skills, adaptive behavior (other than social
interaction), and curiosity about the environment in
childhood.
F. Criteria are not met for another specific Pervasive
Developmental Disorder or Schizophrenia.
Please note that the chapters in this book are based directly on the official
DSM-IV diagnostic criteria. It’s surprisingly easy to get lost in tangents
and areas of marriage and family life that aren’t directly related to the AS
diagnosis. Let’s stick to these six main diagnostic criteria as closely as
30 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

possible as we delve into the behaviors and patterns that expand from the
original root descriptions in the diagnosis.
There’s a good chance that if you’re new to AS, you will have a hard
time understanding all the intricacies of the diagnostic criteria. To help us
all, Simon Baron-Cohen made a simplified list of the key features of
Asperger Syndrome. This list is extremely helpful in that it condenses and
clarifies so many of the diagnostic issues into one easy format. For a person
to be considered as potentially having AS, all ten descriptions must apply
and the difficulties must be significantly interfering with daily life.
1. I find social situations confusing.
2. I find it hard to make small talk.
3. I did not enjoy imaginative story-writing at school.
4. I am good at picking up details and facts.
5. I find it hard to work out what other people are thinking and
feeling.
6. I can focus on certain things for very long periods.
7. People often say I was rude even when this was not intended.
8. I have unusually strong, narrow interests.
9. I do certain things in an inflexible, repetitive way.
10. I have always had difficulty making friends.
You may want to hand this list to your partner or you may want to ask him
verbally if he recognizes these traits in himself. If you have a good relation-
ship, and it happens to be a good day, both of you may gain life-changing
insights. There’s also the possibility that your partner, despite his best
intentions, may feel the need to lie, hide, or obfuscate the truth if he feels
his partner’s judgment is looming on the horizon. If your partner feels that
you will use this information against him later, he’s likely to duck and
dodge, maybe even start a fight to get you to drop it. If you think your
partner will be defensive and therefore not give you honest answers, it will
probably be quicker and easier to do an initial analysis through a therapist
or counselor. As you’ll see in later chapters, defensiveness is natural, and is a
common self-protection measure for Aspies.
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 31

There’s another pitfall that can occur with any diagnostic scale or list
of key questions. An Aspie partner may interpret the questions so literally
that it skews the meaning. For example:
The Simon Baron-Cohen test was so much easier for us to understand! I
read the list to my husband and he bellowed a resounding “Yes” or “Of
course!” to every single one except the one that says “People often say I
was rude…” He said, “No,” but I pointed out that currently there is no
one to say he was rude. His colleagues understand him, and the children
and I have learned that saying “You’re rude” doesn’t do a bit of good, so
no one points it out anymore. For us to determine if this feature fits my
husband, we looked in his past, back when he used to have to interact
with others who didn’t understand him as well. Sure enough, the
“You’re rude” comment was made often. He’s still just as rude as he
always was; he just doesn’t hear about it anymore.
Simon Baron-Cohen’s list of key features appears simple, but it is carefully
worded – take time to honestly answer “yes” or “no” to the specific criteria.
Misinterpreting the diagnostic criteria on any scale is a common hazard
because the person with AS may interpret the information too literally or
otherwise misread it. Here are other examples:
My husband [AS] answered that “No,” he does not find social situations
confusing [the first criterion]. I think he misunderstood. He doesn’t find
social situations confusing because he rarely tries to understand them
anymore. He has learned to ignore the horrible confusion he feels in
social situations – he shuts down. Whenever I have seen him think
about a particular social situation, he appears to be a in a confused fog.
Or:
She [AS] answered that she “likes social chitchat,” but her definition may
not be the world’s definition. She doesn’t mind being near it, but only if
it is at a certain volume level, if it is about certain topics, and if she is the
only one speaking. She doesn’t engage the listener in the conversation.
Or:
On the statement about friends…she [AS] considers everyone she ever
met a friend.
Simon Baron-Cohen and others are doing phenomenal research trying to
leap over the hurdles of helping both the general populace and the AS
community understand the AS diagnosis. It isn’t easy to write criteria that
32 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

will be interpreted identically by those with AS and those without. For this
reason, a third opinion, that of a professional, is highly valuable in making
sure that the diagnostic criteria are correctly understood.
It would be infinitely easier if there was a blood test, brain scan, or
other procedure that could detect AS, but there isn’t. The diagnosis is
based on the diagnostician’s observation of a person’s communication
skills, behavior, and development since childhood (Tantam 1991, p.148).
Even the most qualified, well-versed diagnostician may be baffled by your
partner’s combination of traits.
It’s possible that a person has several disorders, not just AS. A person
can have AS in combination with Attention Deficit Disorder (ADD), gen-
eralized anxiety disorder, or any number of combinations of diagnoses.
Distinguishing AS traits from the traits found in other diagnoses resembles
detective work.
Part of the confusion lies in the fact that the AS diagnosis is quite fuzzy
because professionals still disagree about critical factors such as early
language development and the severity of traits. Some diagnosticians have
a more liberal interpretation of the diagnosis and cast a wider net, while
other diagnosticians follow the strictest standards for diagnosis. Also, there
are plenty of professionals who haven’t fully acquainted themselves with
the diagnosis. Unfortunately, the following are common examples of mis-
identifying AS in an adult:
He can’t have Asperger Syndrome. He can converse with us just
fine.
Or:
She can’t have AS. She writes well and can maintain eye contact.
Or:
Since he has never been referred for medical help for this condition
before now, he cannot have AS.
As we’ll see later on, eye contact can be faked, writing quality is not indica-
tive of AS, and the ability to converse can be chalked up to the learned skill
of parroting back socially acceptable, memorized lines. These intelligent
souls can evade a diagnosis for years, even a lifetime.
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 33

It’s vital to find a diagnostician who is familiar with identifying AS in


adults. I found out the hard way that a quick “Have you worked with
Asperger Syndrome?” isn’t sufficient. I learned to ask: “How many adult
patients with AS have you treated?;” “What year did you treat your first
patient with AS?;” “How many of these adults with AS are functioning
effectively in society?” (some believe that AS is only debilitating); “How
would you define AS in a short sentence or two?” (to identify if your views
are compatible). Think about what you want to get out of the diagnosis
(marital counseling, validation, etc.) then ask as many pointed, specific
questions as you would ask of a pediatrician for your newborn or of a
surgeon who is preparing to operate on you.
As you read this book, some AS traits will jump off the pages at you and
some will sound foreign. Please read, or at least skim, all the traits, since
you may or may not recognize the traits until reading others’ personal
experiences with them. I found that I dismissed many traits that my
husband exhibited – I wasn’t able to see them until I learned more about
them. As you read, remember that all Aspies are different in their presenta-
tion of the AS traits.
Since there is such a wide variety in Aspie individuals, it is impossible
and inappropriate to offer generic advice designed to fit all AS-linked
couples. If, while reading this book, you see a bit of information that seems
to be off-base for your situation, skip it and move on to the next section.
There are hundreds of potential answers in this book. Even if only one
helps, it may be the solution that allows you to see clearly long enough to
fix things.

Is Asperger Syndrome prevalent?


Since AS has only recently been recognized, it is hard to gauge how many
Aspies are out there, undiagnosed and unaware that their difficulties may
stem from a neurological condition. There are plenty of current estimates
and much depends on where the diagnostician draws the line between AS
and normalcy. Patricia Romanowski Bashe and Barbara L. Kirby (2001) in
The OASIS Guide to Asperger Syndrome stated, “Most authorities place the
incidence of AS somewhere around 1 in 250 to 1 in 500 persons.
However, because AS is still an under-diagnosed condition, it may be more
prevalent” (p.12).
34 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

AS appears to be more prevalent in men than women. Currently, for


every ten males diagnosed with AS, a single female is diagnosed AS, thus a
10:1 male to female ratio (Wing 1981). Hans Asperger originally believed
that the condition he was observing occurred only in males but he later
changed that opinion. Currently, some researchers believe that the unusu-
ally high male to female diagnostic rate is due to women presenting differ-
ently than men, slipping past the radar for detecting AS (Attwood 1999). I
believe that AS traits are more quickly dismissed in women as them being
moody, disagreeable, or hormonal. Perhaps a female Aspie presents so dif-
ferently from a male Aspie that we can’t recognize it with our current diag-
nostic tools. This is an issue for researchers to solidify. For now, we’ll rec-
ognize the 10:1 male to female ratio.

The adult population


The number of adults who are recognizing their need for an AS diagnosis
is growing daily. A quick glance at this field reveals a harrowing need for
more research toward solutions for adults who have received no interven-
tions or support over the decades. It appears that the bulk of the research is
being conducted for children only. A common complaint:
How are we AS adults supposed to raise our AS children when we can’t
even function ourselves? Where’s the help for us? Do they think we just
outgrow it? I don’t think so!
It isn’t a matter of adults whining for help – even the top researchers in the
field are aware that “a great deal of the literature on autism and related con-
ditions spoke of children, almost as if children with autism did not grow
up to become adults” (Klin, Volkmar and Sparrow 2000, p.18). I’m thrilled
that efforts are being made to help children who are battling the negative
AS traits and I don’t begrudge children their right to the best treatment,
but I can’t help but wonder why there’s so little information for AS adults.
Upon further research I found that the reason that the focus is on
children is because of the intense pressure of dedicated parents working
hard to build support systems for their children as quickly as possible,
while the children still have the cognitive pliability to be receptive to inter-
vention methods. One of the secondary reasons is that there is public
funding (at least in the USA) for children in the public school system.
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 35

Adults don’t have state and federal dollars accessible to them for services
for non-debilitating disabilities. Even the cost of the diagnosis may be
prohibitive, let alone treatment, especially for adults who may lack health
care due to lack of employment or underemployment. Unfortunately,
funding is often at the nerve center of our ability to correctly identify our
human condition.
Besides lack of funding and a lesser desire to focus on adults, there are
many other factors contributing to under-diagnosis of our adult popula-
tion. For example:
I don’t need a diagnosis. What good would it do me?
Or:
I’ve looked everywhere and there doesn’t appear to be a single qualified
AS diagnostician in my state.
Or:
My insurance says, “It doesn’t do any good to diagnose an adult.”
Our AS adult population is under-diagnosed (Bashe and Kirby 2001, p.12;
Bauer 1996). Adults who suspect AS in themselves or their partner, and are
ready to seek a diagnosis, desperately need qualified professionals who can
give an accurate diagnosis along with suggestions for therapies, treatments,
or improvements.
We also need a better general awareness of the condition and how it
presents in other life stages besides childhood. Hans Asperger (1944)
explained:
Naturally, intelligence and personality develop and, in the course
of development, certain features predominate or recede, so that the
problems presented change considerably. Nevertheless, the essen-
tial aspects of the problem remain unchanged. In early childhood
there are the difficulties in learning simple practical skills and in
social adaptation. These difficulties arise out of the same distur-
bance which at school age cause learning and conduct problems, in
adolescence job and performance problems, and in adulthood
social and marital conflicts. (Trans. Frith 1991, pp.67–8)
There is a theory that, besides the children who are diagnosed AS and
grow up as Aspies, there are also children who have been diagnosed with a
36 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

form of autism in childhood and may be rediagnosed AS as adults. Temple


Grandin’s (1995) personal experience may be a case in point:
If I were two years old today, I would be diagnosed with classic
Kanner’s syndrome [classic autism], because I had delayed
abnormal speech development. However, as an adult I would
probably be diagnosed as having Asperger’s syndrome… I have
made progress by finding visual symbols to carry me beyond the
fixed and rigid worlds of other people with classic Kanner autism.
(p.60)
I believe this phenomenon is most easily explained by the basic definitions
of autism and AS. Autism is a developmental disorder, whereas AS may
possibly be classified as a stable personality trait (Asperger 1944). Perhaps
an autistic child, with appropriate intervention and support, can learn ways
to work around the more obvious autistic traits, thus recovering from
autism to a degree. Perhaps this recovered form of autism appears as AS in a
more mature, adult form.
Ironically, even the highest functioning person with AS will still need
significant support as an adult. Even though he may learn his way past the
more obvious traits, he may need increased support in order to attain a
level of balance and happiness in a demanding adult NT world. As Digby
Tantam (1991), renowned AS researcher, explains:
Asperger Syndrome is a developmental disorder with its origins in
infancy, but it may cause the greatest disablement in adolescence
and young adulthood, when successful social relationships are the
key to almost every achievement. Abnormalities that are mild
enough to be disregarded in childhood may become much more
conspicuous in adolescence. (p.148)
So far, we have few resources for adults who are seeking a better under-
standing of their more mature AS traits. Liane Holliday Willey showed
personal strength and eloquent insight when she published her ideas in
Asperger Syndrome in the Family in 2001. Another source of support came
from Maxine Aston who published The Other Half of Asperger Syndrome in
2001. In early 2002, a married set of voices spoke up: Christopher and
Gisela Slater-Walker with their personal account An Asperger Marriage.
Three books, all providing insight and answers. The only complaint I had
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 37

about these books is that they are too short. I need more information and I
need it now. I need volumes two, three and four of each of them.
I have learned to be selective in where I turn for answers. I used to
browse the bookstores, looking under the topics of divorce, co-depend-
ency, depression, and anger management (offshoots of what often happens
in an AS-linked marriage). At one point I counted nearly a hundred such
books in my personal library. Unfortunately, these books don’t and can’t
address the intricacies of AS. Using the common literature for marriages
and relationships makes you look whiney and needy on the one hand
while putting down the Aspie partner as uncaring and uncommitted.
Looking at your AS partner through an NT lens makes both of you appear
unattractive.
I think it’s sad that we are only now coming to an understanding of AS.
Why haven’t we noticed it before? Many of the reasons are deeply
embedded in our societal progression. We’re learning to recognize and
treat the less-debilitating disorders before they destroy lives. In times past,
societies used to brush over, ignore, or hide anyone who was socially dif-
ferent. As one woman explains:
My mother-in-law is a nice lady, but she refuses to see the AS in her son.
She keeps saying things like, “I know you have this great new idea for
what may be bothering him, but trust me, sweetie, he’s a normal man.”
She’ll cite how he learned to talk early and how he was so analytical,
even as a baby. She’ll brag about how he played on his own all day long.
She’ll say that he was “so focused on his studies that he never even took
time to date – now that’s dedication!” She never found out how scared,
confused, and miserable he was. She brushed off his depression and
suicide attempts as “normal teenage behavior.” From her vantage point,
he was normal. Even though he has discovered his Asperger Syndrome,
she refuses to consider the fact that there’s more to my husband than his
practiced surface exterior.
As we learn more about AS and other autistic disorders that appear to be
increasing at a drastic rate around the globe, we hope to find that society is
more accepting of these individuals who are in our world, but not of our
world.
38 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Misdiagnosing Asperger Syndrome


There are many different syndromes and disorders that can be mistaken for
AS because they are so similar; these are called differential diagnoses.
Without an official analysis you may think that your partner is narcissistic,
schizophrenic, egocentric, passive aggressive, etc. Of course, if your
partner has AS, then none of these labels cover the full scope. Being able to
wrap your mind around the correct diagnosis is crucial.
Asperger Syndrome is often confused with HFA (high-functioning
autism), PDD (pervasive development disorder), PDD-NOS (pervasive
developmental disorder – not otherwise specified), ADD (attention deficit
disorder) and all its cousins, NLD (nonverbal learning disorder), avoidant
personality disorder, hyperlexia, OCD (obsessive compulsive disorder),
ODD (oppositional defiance disorder), and many others. With all the con-
fusion, many couples end up with a diagnosis of DRC (don’t really care).
They throw up their hands in despair and separate or divorce.
In Barbara L. Kirby’s article, What Is Asperger Syndrome?, she states:
Because it was virtually unknown until a few years ago, many indi-
viduals either received an incorrect diagnosis or remained
undiagnosed. For example, it is not at all uncommon for a child
who was initially diagnosed with ADD or ADHD [to] be
re-diagnosed with AS. In addition, some individuals who were
originally diagnosed with HFA or PDD-NOS are now being
given the AS diagnosis and many individuals have a dual diagnosis
of Asperger Syndrome and high-functioning autism. (Posted and
updated on the OASIS website)
There are many conditions that can imitate AS. You may even have
“acquired AS” or “environmental AS” (be careful, I don’t think those are
official terms yet). One woman explains her environmental AS as follows:
Although I do not have the neurological condition of Asperger
Syndrome, there are diagnosticians who would easily diagnose me
AS. I’m socially awkward. I have one obsessive interest. I lack
friends. I often sound pedantic. Looking back, it’s revealed that I
don’t give eye contact because I was trained not to: both father and
mother were too busy to ever look at me. I followed the rules and
did not speak unless spoken to. Yet, I believe that I have the “cogni-
tive flexibility” of which the researchers speak.
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 39

As with any newly recognized condition there will be misdiagnoses and


overdiagnoses. A diagnosis can be a matter of opinion, making it tricky to
quantify what is AS and what shades into normalcy. Let’s look at what we
can exclude.
• AS symptoms may vary from day to day but they are consistent
over time. They aren’t part of a bad day or a phase.
• The AS person typically does not want to be different – he just
doesn’t understand how to fix the difficulties he experiences.
• AS is more than eccentricity or unconventional behavior.
• AS is not a character flaw. It is a neurobiological condition.
• Everybody has little activities they do (routines) to calm
themselves down and deal with stress. The difference is that an
Aspie has an exceptionally difficult time stopping these
behaviors when he wants to or needs to.
• AS isn’t a cold or the flu – it doesn’t go away. Coping
behaviors can be learned, but you don’t outgrow AS naturally.
There are many methods to train someone out of the more
obvious AS traits with the hope of rewiring their brain to be
more like an NT brain (called “recovery’), but this is a huge area
of debate.
It’s essential to stick to the basic diagnostic criteria and avoid the confus-
ing mish-mash of assumptions that occur when we assume that all Aspies
are alike. Some of the following contrasts help us see the variety:
My partner [AS] is an absolute clean freak. He can’t stand a mess in the
house. It drives him batty. My friend calls him a “neatnik.”
But an Aspie can also appear as follows:
She [AS] is so phenomenally messy. She has piles upon piles of stuff
throughout the house. She’s a pack rat and she has saved everything that
has come across her path for the last two decades. She knows where
stuff is, but nobody else does.
Another example of variation not related to the diagnosis:
She [AS] is an excellent writer. She may have problems in social situa-
tions, but put her in front of a keyboard and she is quite eloquent.
But a person with AS can also exhibit a lack of writing abilities:
40 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I doubt he [AS] could write a coherent paragraph if his life depended on


it. He can’t seem to string the words together.
Variation may also occur in speech:
He [AS] is nearly silent. I have to prod him to get anything more than a
yes or no answer [hypoverbal].
In contrast to:
I wish my partner [AS] wasn’t so talkative! She talks non-stop. She talks
during movies, she talks during church services, and she even needs to
talk herself to sleep [hyperverbal].
Another issue that is not part of the diagnosis is the issue of anger. For
example:
He [AS] is violently explosive…he is also abusive.
But compare this to an equally-AS male:
I don’t think I’ve ever seen him [AS] angry, let alone violent. Sure, he has
been peeved or annoyed, but not actually angry.
There are many secondary traits, i.e. traits that occur because of AS, but are
not part of the AS diagnosis. It’s vital to focus on the diagnostic criteria and
not get too entangled in tangents. Why is this so important? Focusing on
the core of the diagnosis allows us to accurately identify what our AS
partners can change and what they can’t change. It gives us a realistic
framework within which we can build our relationships.

What causes Asperger Syndrome?


Asperger Syndrome is a neurobiological condition that appears to be at
least partly hereditary. If dad’s an Aspie, it’s possible that his son or
daughter, grandson or granddaughter will show Aspie traits also. It’s
apparently related to how the brain develops. AS is often recognizable in
early childhood – right at the point at which the child is supposed to
emerge into the social world but doesn’t.
The central issue in AS is social impairment. There have been hordes of
studies discussing how the amygdala (part of the human brain) plays a role
(Klin, Volkmar and Sparrow 2000). Apparently, in a person with AS, the
wiring in the frontal and temporal lobes of the brain are a bit out of the
ordinary (Attwood 1998, p.143). There are many potential medical
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 41

reasons that may explain why our Aspies are the way they are, but the
medical explanations can only help us so much. We’re working with this
syndrome in our homes, and we need help today.
What causes AS? There is a flurry of allegations as to what causes
autism, and possibly AS too – everything from vaccines to certain environ-
mental poisons. Hereditary links appear to be strong (Asperger 1944;
Folstein and Santangelo 2000, pp.159–69). No one knows for sure. The
braver souls on this planet will keep fighting to discover what causes
autism spectrum conditions and some day we may know.

Is there a “cure”?
Hans Asperger (1944) noted that “a crucial point which makes clear that
the autistic personality type is a natural entity is its persistence over time”
(p.67). Studies following the revival of Hans Asperger’s writing proved
that AS traits were indeed stable over time (Tantam 1991, pp.164–5). If AS
is based in an individual’s basic personality, it won’t go away with time and
it should be respected, not “cured.” But how do we rest comfortably on this
fact when AS is classified as a “disability” due to the way it wreaks havoc on
the life of the “socially inflicted”? People with AS can end up in homes for
the disabled. They can experience clinical depression because of their
social difficulties (Tantam 1991, p.172).
Although we may wish for a “cure,” the consensus is that no, there is
none. There are drugs that can treat the side effects of the syndrome
(anxiety, depression, etc.), and there are all sorts of solutions that may lead
to living a life that could be considered “recovered” or otherwise healthy.
The aspiration of this book, and many other books and articles that have
been written in recent years, is to show potential solutions, work-arounds,
and “limping methodologies” for an incurable condition that is hurting
adults all over the world, making them wish they could curl into the fetal
position and make the rest of humanity “Go away!”
The only “cure” that we are currently aware of is: support people can help
the Aspie to survive and even thrive. Liane Holliday Willey has given many of
us insight and hope in her books. She shows how she developed into a
state of “residual AS” with the help of supportive family and friends. The
OASIS website also has some insight into dealing with this incurable con-
dition: “Many of the weaknesses can be remediated with specific types of
42 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

therapy aimed at teaching social and pragmatic skills. Anxiety leading to


significant rigidity can be also treated medically. Although it is harder,
adults with Asperger’s can have relationships, families, happy and produc-
tive lives.”
Actions and behaviors that come naturally to NTs need to be taught
through direct and specific instruction to those with AS. For example,
some people with AS don’t give eye contact naturally. They need to be
taught how to give eye contact, when to give eye contact, why we give eye
contact, etc. The specific behaviors can be taught, resulting in a person
who is capable of functioning nicely in society.

The adult Asperger long-term relationship


Researchers used to think that Aspies either couldn’t or didn’t marry due
to their social difficulties. Now we know better. We know that cells (large
groups) of Aspies reside in locations such as Silicon Valley in California,
the Silicon Forest in Washington state, the Silicon Hills in Austin, Texas,
nearly every university campus around the globe, any area with a high
density of techies, engineers, mathematicians, physicists – nearly all
sectors of technical advancement pull in people who tend to have AS traits
(Baron-Cohen 2001). Plenty of these Aspies are married, some even
happily married.
Preliminary research performed in Holland suggests that the divorce
rate for couples in which one partner has AS may be as high as 80 percent
(Relate leaflet). If you’re currently married to a person with AS, this is a
daunting, but probably understandable, statistic. Sure, the odds of divorce
are high for everyone in this era and AS marriages seem to be contributing
disproportionately to the high divorce rate. AS marriages seem to be more
susceptible to divorce based on the underlying social and emotional issues
outlined in the diagnosis.

What it looks like – written by a non-AS partner


Let’s look at marriage from an insider’s view, the non-AS viewpoint. Here’s
a glimpse into the life of a non-AS woman with an AS husband:
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 43

When we go out in public, he needs me to be near him or he gets sad,


distracted, and even depressed. He needs to have me walk a certain way,
with our feet in step with each other. If the cadence is off, it bugs him.
We need to hold hands whenever it’s at all possible. Our hands have to
interlock in a particular way or, well, I don’t know what will happen.
Something awful. Anything unexpected, loud, or confusing makes him
shut down.
When we’re at home, we’re kicked back and relaxed: pajamas at
noon, relaxing on the couch, on the floor, in the computer chair. My
husband is a homebody. He knows it’s safe here. Even though we’ve
had the opportunities for travel – fantastic, far-away, free travel – he’d
rather stay home. I travel by myself or with our children. When we’re at
home together it’s usually peaceful and calm, with us surrounded only
by the things we love. There is no tolerance for anything or anyone
invading our private space and time.
I have worked exceptionally hard to build a satisfying life around
me. I know there are many things he can’t provide so I find fulfillment
in my work, my friends, my children, and my hobbies. I’ve learned to be
more self-sufficient than most.
At first glance we look like a typical American couple living the
American dream, raising our children, working at jobs we love, and
swimming at the neighborhood pool. But the minute you hear us talk or
get even a few steps into our lives, you realize that our relationship is
different, very different. You’ll hear him say, “What’s your face saying?,”
or you’ll hear me say, “Please stand three inches closer to me.” I consider
our marriage a successful one but it’s recognizably different from the
norm.

What it feels like – written by an AS partner


This section was supposed to be eloquently written by a spouse with
Asperger Syndrome. Although many Aspies have phenomenal writing
talent, each one I asked said, “What do you mean – ‘feels like…’?” So, I
asked my most reliable resource, my husband, to give me a glimpse into
how an Aspie views marriage. Since writing is painful for him, I casually
turned to him as he sat at his computer and asked, “How does it feel to be
married?”
He responded with “You’re crazy” without turning from the glow of
his monitor. OK, wrong approach.
44 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

After several moments of silence I asked, “So, I need to fill out this
section for my book. I need to know how an Aspie views marriage. What
does it feel like to be married?”
My husband sincerely wants to “be there” for me, so he leaned back in
his black leather chair, folded his arms, closed his eyes, and after a moment
said, “Like two pieces of a puzzle that fit together.” Back to his keyboard.
Silence. Familiar silence.
I’ve learned that my husband is perfectly content leaving a conver-
sation unfinished or otherwise hanging so I prodded with another
question, this time more specific. “What do you expect out of this
marriage?”
“Nothing.”
Actually, I know for a fact that he expects nothing from me. He’s
thrilled just being by my side. As long as I’m in the marriage, he’s content.
Having such low expectations, actually non-existent expectations, can be
freeing, but we’ll talk about that more in a later chapter.
I needed more information. “So what do you anticipate in our future?”
“Nothing.”
“You mean you don’t see any future for us?” I immediately went on red
alert with that high-pitched tone of voice that he doesn’t seem to hear. He
is always this condensed with his speech, but his answer alarmed me.
He responded, “Of course we’ll be together forever, but I don’t expect
anything in particular.” Because of my persistently quizzical look (and
because I wasn’t going away) he responded with, “Things will continually
improve. Our fights will dwindle and our love will grow as we learn to live
with each other. Our marriage is sacred and I’m still thrilled to have you by
my side.” To the passerby, it might sound like he had a vision of marriage,
but I could tell from his phrasing that he was repeating words he’d heard in
the past.
Silence. I didn’t know whether to call his bluff on parroting words he’d
learned elsewhere or just accept it. This is a common dilemma for me. I
don’t want to squelch his attempts at communicating, but I also don’t want
to accept others’ words as his own. Again, he saw that I wasn’t going away
and he turned towards me. Direct eye contact – painful for him, but a
generous gesture toward me. He clarified with something I know was
WHAT DOES ASPERGER SYNDROME LOOK LIKE IN AN ADULT? 45

uniquely his idea, an honest insight into his views. He said, “You’ve
become a part of me,” and the conversation was over.
So that’s one Aspie’s view of marriage. He couldn’t write it down. It
was difficult for him to even think about it. It took several pointed
questions to extract even those few details from him. His response showed
that he is confident in his marital future, is content with “nothing,” and as
long as I support and respect him, I can “become a part” of his life and his
soul. He has definitely become a treasured part of mine.
CHAPTER 3

The Full Realization

Is an AS-linked relationship more difficult than a non-AS relationship?


Perhaps. One fact we know for sure is that AS changes the rules of the
game. One husband stated:
You’ve heard of Extreme Sports? Well, I have an Extreme Marriage. My
partner has AS and none of the “rules of the game” apply. It’s an extreme
experience, pushing both of us to our physical, emotional, and spiritual
limits.
Yes, it’s difficult for both partners. Here’s a common reaction:
Some days I want to throw the divorce papers in his face. It shouldn’t
have to be this hard. Every little change in plans is an “issue.”
In order to play this particular extreme sport, you either need to know the
rules or be frustrated by the penalties you receive daily – the ones that
make you crave divorce proceedings, as awful as they may be. Without a
full realization of the intricacies of AS you may be tempted to skip over
steps (I sure did) or dismiss the problems as being less severe than they
truly are (again, I’m guilty). A full realization comes only when you study
AS enough to realize where your starting point is. One woman explains
her full realization experience:
I didn’t realize how serious this was until I read several books on child-
hood development. I was skimming a few books, reading how young
children interact, and I realized that my husband wasn’t doing some of

47
48 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

the things that young children do. I backtracked in one of the books
until I found where he was on their developmental scales. I went over
the book with my husband and we both agreed that he was stuck some-
where between 12 months and 18 months of age in his emotional and
social development.
Although it may be an unpleasant realization, knowing where to begin
may be the most crucial step of all:
Without starting at the beginning and mastering the fundamental
elements of Experience Sharing, children with Autism [AS] are
unable to jump in at mid-level and grasp the intrinsic payoff of
interaction. Despite their perceived high-functioning abilities in
other areas of their life, not a single stage can be skipped without
the entire process turning into a house of cards. (Gutstein 2000,
p.53)
Depression is often mentioned in the literature regarding AS (Tantam
1991, p.172). It seems to me that the depression stems from two sources:
first, not realizing the full extent of the condition and trying to wiggle
your way around it; and second, getting so caught up in the full extent of
the diagnosis that you see only the negatives – the things you can’t have in
your relationship.
The diagnostic criteria, by their very nature, are negative. They only
point out the “lack of ” and the “impairment.” The diagnostic criteria don’t
point out the benefits of the AS condition. Perhaps the optimal balance is
to realize the full extent of what you’re dealing with and temper that real-
ization with a hearty dose of optimism.
Optimism will not only give you the strength to see the benefits within
the weighty diagnostic criteria but it will also make you a healthier person.
Optimism leads to better health, a more positive outlook on the future, and
a clearer ability to successfully problem-solve in difficult situations –
required skills for survival in our AS-linked relationships.
True optimism is based in reality. The reality comes from the diagnosis
and how your partner presents the different AS traits. Optimism comes
from looking at the gaping chasm between the two of you, recognizing it
for what it is, and beginning to build a bridge.
THE FULL REALIZATION 49

The initial diagnosis


There are so many issues when it comes to diagnosis. Where do we go for a
diagnosis? Who is qualified to give a diagnosis? What do we do with a
diagnosis? Do we really need a diagnosis?
One of the best ways to find an up-to-date list of professionals cur-
rently practicing is to check websites that are consistently updated:
• NAS (National Autistic Society) at www.nas.org.uk
• ASA (Autism Society of America) at www.autism-society.org
• OASIS (Online Asperger Syndrome Information and Support)
at www.udel.edu/bkirby/asperger
• FAAAS (Families of Adults Afflicted with Asperger’s Syndrome)
at www.faaas.org.
Next – who is qualified to give a diagnosis? Preferably a diagnostician who
has had significant experience identifying Asperger Syndrome. Good luck
finding one. Although AS was officially recognized in 1994, it is still con-
sidered “new” – it may prove difficult to find a qualified diagnostician in
your part of the world.
Not only do you need a diagnostician who is familiar with AS, you
need one who has seen the autism spectrum in its entirety. Diagnosing is an
art, not a science – the ability to accurately identify one diagnosis over
another takes significant experience and focused expertise. It has been said
that one person can go to five different diagnosticians and get five different
diagnoses. This is especially true for an Aspie who has learned to pretend
so well that different personas emerge in different situations.
As a matter of fairness to diagnosticians, arriving at a correct diagnosis
can be extremely difficult. As Liane Holliday Willey (2001) states in her
book Asperger Syndrome in the Family:
Others of us are not so different, at least on our surfaces… We can
find meaningful work, work at meaningful relationships, and play
hide and go seek with society. These are the folks who really
confuse the “experts.” These are the ones who end up with fright-
eningly erroneous diagnoses that run the chronic mental illness
gamut and can result, very unfortunately, in horribly inappropriate
therapies. Given our many colors, is it any wonder… (p.142)
50 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Since a correct diagnosis can be so elusive, seeing someone who is less than
qualified decreases your odds of receiving an accurate diagnosis and
increases your odds of an increased level of frustration. Before you dismiss
the importance of seeing someone qualified, please read Chapter 11,
“Help! Where to Look.”
What do you do with a diagnosis? There aren’t any medical benefits
that I know of for adults with AS other than identifying medications that
can deal with the side effects of AS (anxiety, depression, etc.). There isn’t a
financial benefit, since you probably won’t find any public services avail-
able to adults with non-debilitating AS. Perhaps the most significant
benefit is your own awareness and validation. A correct diagnosis may set
you on the path to marital recovery. It may help you focus your efforts, see
things more clearly, and may give you access to the few counselors, thera-
pists, and doctors who could be of help to you and your partner, especially
if medication is desired or is necessary for anxiety, depression, or other
common ailments that often occur when dealing with AS.
Before you begin the potentially arduous task of finding a qualified
diagnostician, ask your Aspie partner what he thinks about it. You may
find:
I don’t need a diagnosis at this point in my life. I have a good job. I’m
fine. I don’t see how having it in writing would change anything.
Do we need a diagnosis? This has been the quandary of many potential
Aspies and their partners. What good does a diagnosis do anyway, other
than confirm your fears? Of course, I recommend that you get a diagnosis
then push for treatment…in an ideal world. I don’t want readers walking
away from this book thinking that all their problems can be solved by
diagnosis and treatment. Wham, bam, it’s fixed. The diagnosis is only the
first rung on an incredibly tall ladder. Admittedly, it may be the most
important step, since an incorrect self-diagnosis could lead you in the
wrong direction.

Reaction to the diagnosis


If and when you get a diagnosis, be aware that you may feel anger that you
didn’t discover it earlier, heartache that it’s too late and too far gone to
THE FULL REALIZATION 51

patch up your marriage, or the sweet relief that many couples feel when
they finally find a reason for their problems. For example:
We had suspected something was wrong for quite a while. When the
doctor said “Asperger Syndrome” we both were so relieved. Our
problems had a name.
Or you may see it as a distinct turning point:
I feel like the first ten years of our marriage were one big unnecessary
fight. Near our ten year anniversary we found out about AS. I was
getting ready to leave the marriage and we found out about AS with a
counselor who was helping us with the “stay together or separate” issue.
Now that we know about AS we finally feel like we’re making progress,
finally finding answers. Getting clued into my husband’s diagnosis is
helping open doors for us that had been slammed shut. We’re finally
making visible progress.
Or it could have a negative effect:
I wasn’t surprised by the diagnosis but it did have a nasty side effect. My
husband [AS] now uses it as an excuse for poor behavior, saying, “It’s the
AS. I can’t help it.” It’s no use trying to convince him that he can’t blame
everything on AS.
Or it could be devastating:
The AS diagnosis felt like a life sentence. The doctor might as well have
said, “You are hereby sentenced to the next 40 years in emotional isola-
tion with no possibility of parole.”
Personally, my husband and I felt relief. Immense relief. My husband’s
bizarre traits had a name. I finally understood that he wears striped shorts,
t-shirts, shin-high black socks and sandals for a reason: they were all soft
and didn’t assault his senses. I was able to see that he really wasn’t dressing
so poorly to offend me (it really is visually offensive), but was trying to
self-comfort so he could be a better husband. I learned to buy soft clothes
in muted colors and the problem, along with all its related difficulties, was
solved. We’d still be fighting about his striped shorts to this day if it
weren’t for the diagnosis. What a relief ! Literally hundreds of small,
annoying issues were cleared up and wiped away with the revelation of my
husband’s condition. I felt relief that I had found the reasons and he felt
relief that someone (a book, a website, etc.) was able to explain these
reasons for him.
52 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Everyone responds to the AS diagnosis differently. Some are relieved;


some are distressed. Some rarely think about it; some are consumed by it.
No response is right; no response is wrong. It’s all part of the journey.

Denial
Some may reject a diagnosis even though “Asperger Syndrome” appears to
be tattooed on their foreheads. They cover themselves in a thick blanket of
denial. Why?
One reason may be related to the nature of the condition and how it is
presented. They may only hear the words “lifelong,” “disability,” and “dys-
functional.” In the Aspies’ mind this may be a huge insult, a condemnation,
or an ugly label that is trying to stick to them. Denial may be their only
option to protect themselves against something they perceive as a “death
sentence” to their former way of being.
Another possibility is that your Aspie partner may have difficulties
opening up to new possibilities. It may be an issue of “inflexibility.” Your
partner may have struggled hard to achieve the current state of being and
may be scared by someone rocking his view of self and future.
Another potential reason for denial may be in how they found out
about the condition. If they were confronted by it, blindsided with it, or
otherwise told about their AS without preparation for the information,
then the denial may be a knee-jerk reaction that never wears off. The
Aspies” first impression of new information is extremely important since
they tend to stick with their first belief (Attwood 1998, pp.117–8). The
Aspies may lack the cognitive flexibility to change the initial impression.
So, how do we present the AS diagnosis for a positive first impression?
Mentioning it verbally might not be a good idea since verbal communica-
tion tends to be the weakest modality for Aspies. Mentioning Asperger
“syndrome” might be a bad idea too.
Perhaps you could use an article such as “The Discovery of ‘Aspie’
Criteria” (Attwood and Gray 1999). This delightful article explores the
benefits of AS rather than listing the negative effects of the syndrome. The
article contains “discovery criteria”; the positive counterpart of diagnostic
criteria. I accessed this helpful article at www.tonyattwood.com, printed it,
and set it on the kitchen counter where I knew my husband would see it. I
turned it to the page where the discovery criteria were listed because he’ll
THE FULL REALIZATION 53

ignore text, but he’ll skim a list. Sure enough, when my husband read over
the discovery criteria, his face lit up and he muttered, “Now, that’s more
like it.”
The reason that the discovery criteria may be a better introduction to
AS is that the initial recognition is so vital. As Dr Attwood and Dr Gray
explain in the article, “Knowing that others recognize and acknowledge
personal strengths, could provide needed confidence to build and explore
personal talents and tackle challenges.”

The hidden condition


Asperger Syndrome is often called the “hidden condition” because many
Aspies, especially adults, have learned to hide their Aspie traits from the
scrutiny of others. For example:
To the casual observer I am intelligent, kind and clever, but inside I’m
dying. The pressure to perform in public is so powerful that it crushes
my spirit. I feel like I’m using every ounce of strength just to have a
four-minute conversation with someone.
Most of the AS traits occur internally, inside one’s head. For example, “lack
of eye contact” (under first criteria of the diagnosis) isn’t an obvious
behavioral issue – it is often due to the Aspie not expecting to see any
information in a person’s eyes. It is a cognitive condition of not being able
to interpret the nonverbal language of eye contact. Somewhere along the
line, the Aspie learns, Pavlovian style, that if he looks people “in the iris” for
the right amount of time they will respond to him better. He still doesn’t
understand why we need eye contact; he just knows that it works. He
doesn’t get the emotional payoff from the eye contact that most people do.
For example, when I look into a friend’s eyes, I get a sense of warmth,
caring, and some elusive emotional fulfillment that I can’t define. When
my Aspie husband looks into someone’s eyes, he’s giving fake eye contact
so as not to be rude. He has learned NT ways, but it resounds as a hollow
victory, reminding him that, no matter how hard he tries, he will never “get
it.”
AS may be a hidden condition, but when you marry someone, all cards
are laid out on the table, even the AS cards. You can’t hide it in a marriage –
the spouse and children are bound to find out the depth and magnitude of
54 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

the condition. Once revealed, family members will help hide the more
obvious and embarrassing situations:
One of the reasons he can blend into the background is because the kids
and I watch out for him, telling him to “Zip your pants” or “Don’t say
that.”
Aspies learn the art of hiding out of sheer necessity. It’s a given that they
have to survive in a world that isn’t designed for their senses and abilities.
It’s a given that they have to stretch, often far beyond their liking, just to
get a job or hold a conversation. As one Aspie puts it:
We [Aspies] not only bend over backwards – we do full body con-
tortions just to perform the act…we feel intense internal pain
when we are on stage. I can do it for only a short amount of time
before a meltdown begins or depression sinks in.
It makes sense that in order for an Aspie to lead a happy life, he must have a
soft place to fall, a home, a refuge, and a comfort zone where his Aspieness
is respected. How do we create that? How do we manage to balance our
needs with our Aspie’s needs? How do we build such a comforting envi-
ronment that even the most distressed Aspie can detox, unwind, and reju-
venate inside the walls of the home? First, we need to realize the full scale
of what we’re up against.

Is it a “disability”?
All of us face this question at some point. We can decide to see AS as a “dis-
ability” or as an “unusual ability.” Maybe we see it as both. This question is
one of those personal, introspective issues that you’ll need to answer for
yourself. Without analyzing your own view, you could easily give your
partner conflicting messages. For example:
My husband has AS and we’re always talking about how great it is that
he can set himself apart from the crowd. Even though we talk about it as
an ability, I have found that I truly see it as a “disability.” My comments
such as, “You can’t do this?” or “What’s wrong?” indicate that on a
deeper level, I believe that he’s “faulty” and “needs to be fixed.” He picks
up on my critical comments and is starting to internalize the fact that it’s
a “disability.” He’s starting to get depressed.
THE FULL REALIZATION 55

How you view AS may turn out to be a deciding factor in your relationship
and in your partner’s view of himself. For example:
If there’s one thing I’ve learned about my husband [AS] it’s that he takes
his cues from me. He watches what I do in public and he follows suit. He
has also picked up my attitude that his AS is an advantage to both of us. I
tell him how great it is that he can be so genuinely himself and not care
what other people think. He knows I enjoy the qualities that he brings
to the marriage.
My personal view is this: a pessimist can see anyone as “disabled.” An
optimist can see everyone as somehow “abled.” Each of us has been given
gifts, traits, and challenges. There is no such thing as perfect normalcy for
anyone, but there are guiding principles. My guiding principle that keeps
me going during the tough times is this: I can learn from him and he can
learn from me. Together, we will make each other better, stronger, and into
more skilled people.

People’s judgments
Never explain – your friends do not need it and your enemies will
not believe you anyway.
Elbert Hubbard, The Note Book of Elbert Hubbard

All too often, people will judge your AS partner as “rude,” “inconsiderate,”
“clueless,” “pig-headed,” you name it – the insults will come. A healthy
sense of “I don’t care what they think” attitude goes a long way to protect
both you and your partner.
My most recent experience with people’s judgments occurred at a
social event where our little family put on a skit. Although my husband
knew what he was supposed to do during the skit, he was overloaded by
the lights, noise, and attention of forty people staring at him. During a part
of the three-minute skit, we were supposed to stand together as a family.
Instead, he remained off to the side, staring into space, on complete
overload. It was obvious that he wasn’t participating. For a moment I
paused and saw the stares of others who didn’t know my husband. At that
moment I had the choice to side with the crowd and acknowledge his
56 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

“rudeness,” or I could be compassionate and inconspicuously direct the


attention from him.
People judge other people. Our judgments may be completely
off-base, but we still do it. Learning how to deal effectively and kindly
with the judgment of others is a crucial skill to your own well-being. One
woman explains:
We’ve moved five times in the last two years. Every time I get to know
my neighbors, within a few months they get to the comfort zone of
friendship and they start saying things like, “Does he always do that?”
or “Have you ever told him how rude he is?” It infuriates me no end and
we start considering another move. Now that we have children, we’re
going to have to stop running away from this problem. It wouldn’t be
good for the kids to keep moving like this.
Your AS partner is probably very familiar with people judging him. He has
probably felt more rejection, more confusion, and more social problems
than anyone else you know. Your partner may also be very good at
avoiding the full impact of hurt and disappointment. For example:
My husband [AS] never talks about his past. Even when I ask, he quickly
changes the subject. When something comes up, he’ll say that he’s for-
gotten about it or “doesn’t remember.” At first, I thought he had a bad
memory. Then for a while I thought he was lying to me. Now I’ve
realized that he’s buried all the horrible memories of confusion from his
childhood and most of his memories of adult life are gone too.
As you continue to read this book, you may be impressed with how much
pain is involved when an Aspie is thrown into the NT social blender. Most
likely, the pain won’t be on the surface – your partner has probably learned
not to be so raw. The pain is probably buried under many layers, coming
out as anger, hypercritical comments, hypersensitivity, or an inclination to
keep people at a distance. For example:
Every time we visit our therapist with a new problem, she points out that
my wife’s [AS] problems are related to a misunderstanding. My wife
doesn’t think the way most people do and the misunderstandings lead
to hurt feelings, avoidance, and deep anger. Every time we walk out of
the therapist’s office, the conclusion is the same: it’s a buried misunder-
standing of the world’s social rules.
THE FULL REALIZATION 57

There’s a possibility that people nearest and dearest to the person with AS
have judged him as being “mischievous,” “disobedient,” or “willfully argu-
mentative.” The strongest and most damaging judgments may have come
from the parents. As one woman with an AS husband describes:
[He was] raised in an over-achieving family and he had serious
self-esteem problems (being told he was “lazy,” he “just needs to apply
himself more,” and so on). His parents never dreamed there could be
something “wrong” with him. He “just needed to work harder,” like his
brothers.
The judgments from parents can be particularly damaging because these
begin when the child is small, before he has had a chance to develop the
critical thinking skills necessary to refute damaging feedback from others.
Without the natural ability to make and keep friends, a person with AS may
be left without means of forming other positive relationships to counteract
the damage that has been done by parents who are unaware or unaccepting
of the AS condition.
At some point in life, your AS partner may come to the painful
realization that social skills are at the foundation of most human
interactions. Without these social skills, he has no foundation. At best, it’s a
weak foundation based on guesses and rote learning. When this realization
sinks in, the person with AS may begin to feel utterly “worthless” and sink
into depression. The suicide rate for people with AS isn’t known for sure,
but researchers agree that it is high (Attwood 1998). We need to be
vigilant and seek professional help for our partners if depression sets in.
People’s judgments, especially the judgment of significant members of an
Aspie’s family, may be the final judgment.

The ultimate tool


AS children respond best to positive reinforcement (Attwood 1998).
Honest positive reinforcement is based in the recognition of real progress.
Comments such as “Good job” mean nothing to an Aspie. Comments such
as “That’s the roundest ‘O’ I’ve seen you write so far!” are most meaningful.
Tracking progress for children is as easy as saving their daily worksheets.
How do we track progress in an adult relationship?
58 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I believe one of the most effective tools for improvement is something


that:
• allows you to lay out your situation clearly
• shows progress
• allows you to compare and contrast past and present.
I propose that one of the most effective tools for solving marital woes is a
“relationship journal.” Who has time to write in a journal? You may want to
think of it as your own “research study,” “grad school assignment,” “per-
sonal progress documentation,” or “tracking the progress of a two
company merger;” whatever metaphor works for you. I called mine a
marriage journal. Personally, I didn’t have any extra chunks of time in the
day, so I had to trade one activity for the journal writing time. I worked on
my journal instead of arguing with my husband. I figured that our arguing
was rarely productive and could be sacrificed for something that might
prove more effective in the long run.
We had been married almost a decade at the time that I started the
journal. At that point in our marriage I could accurately predict how long
certain arguments would take: an argument about housework – 10
minutes; an argument about finances – 20 minutes; an argument about
something emotion-based – 45 minutes or longer. If a conversation turned
into an argument I would say, “Sorry, I don’t have time to discuss this right
now” and I would spend the time writing in my journal instead. It was time
well spent.
The underlying concept of the relationship journal is as follows:
• I need to improve myself in order to manage this relationship.
• I need to improve myself in order to give my partner the
rock-solid support he needs.
• I need to improve myself for the sake of improving myself.
So, the journal was focused on me: my faults, my problems, and my most
urgent dilemmas. In the first few days, I filled nearly half the journal. I had
more things to fix about myself than I had imagined. I had been neglected
for so long that focusing on myself was actually fun.
THE FULL REALIZATION 59

Here’s the structure of the relationship journal.

First page: State the purpose of your writing in a single sentence.


Refer to this often to ensure that the focus of the journal does not
alter.
Throughout the journal there are various types of pages: research pages,
issues pages, etc. Go with the flow of how your relationship is progressing
naturally. If you just read a good book, write a research page; if you just had
a nasty fight with your partner, write an issue page, etc.

Research pages: As you read and research, make note of information


you want to remember, e.g. Aston, The Other Half, “Home is a safer
place to express themselves…so they can save up an entire day’s
worth of anxiety and let it out in a fit of anger when they get home”
(2001, p.41). Record information that you want to mull over. You
can reread research pages later to see how your understanding has
shifted and deepened.

Issue pages: Deal with one issue at a time. The focus is on how you
deal with the issue, not a laundry list of what your partner is doing
wrong. Even if your partner is 99 percent of the problem, focus on
the 1 percent over which you have control, e.g. “Issue: Finances –
I’m out of touch with the family finances…”

Brainstorm pages: Scribble down all the ideas you can think of to
solve an issue, work through a problem, or identify areas that need
immediate attention. Don’t edit yourself as you write. Remember
your sense of humor when dealing with these heavy issues and
include the silly, off-the-wall ideas. Dealing with an Aspie is
outside of the realm of “normal” experience – the most unusual
ideas may prove to be the most effective solutions in the long run.
For example: “I don’t like to tell him the same things over and over
again. Maybe I could get a parrot that could repeat it for me… His
home computer can give him regular reminders for the routine
tasks so I don’t have to be my partner’s personal assistant.”
60 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Update pages: As you stay together as a couple, there will be


progress in one direction or another. Keep track of the state of your
relationship on the update pages. This will hopefully motivate
both you and your partner as you see your improvement. A rela-
tionship journal entry one year may state, “We had a 15-minute
conversation tonight and I think he actually heard me.” As you
look back at it a year later, you may realize that you’re now con-
versing for longer periods of time – you may be able to accurately
pinpoint real progress.
Without noting progress, we tend to either exaggerate the negatives or
delude ourselves into thinking that it isn’t so bad. Neither option is
healthy. Real progress is based in reality and it takes effort to focus on the
reality of the situation. By showing in a concrete, visual way that we’ve
made progress, we can make the hurt not quite so deep and the doubt not
quite so dark.
I used my marriage journal to help me see straight when anger
overtook my ability to think clearly. For example, one of my frequent issue
pages dealt with my husband working late. He is lucky to have attained
employment in a field that is directly in line with his intense interest and, as
with other Aspies, he dives so deeply into his intense interest that he loses
track of the world around him.
By tracking this issue within my marriage journal I found a distinct
pattern. When dinner was cold on the table and he still wasn’t home, I
started simmering. When the children went to bed without a kiss from
their father, the anger would well up in my stomach. When I went to bed
alone, the anger became fury. At first these pages were titled, “(Obscenity)
Husband Working Late Again,” but as the pages repeated themselves, I was
able to clarify the issue as “Anger Management,” which was something I
had control over.
The marriage journal helped me identify the pattern and identify what
I needed – I needed to find a way to stop my reaction from escalating to
such an intense level. Once I could see the pattern and identify the escala-
tion process, I was able to brainstorm for solutions.
On a brainstorm page I wrote:
• Read a good fiction book to distract myself.
THE FULL REALIZATION 61

• Look at how much work I still need to do.


• Go out to a movie with a friend and leave the kids with a
babysitter.
• Be grateful that I have peace and quiet for a night.
• Pretend I’m at a four-star hotel and draw a bubble bath,
candles, etc.
The list grew until I had nearly a hundred delicious alternatives that could
reroute the reaction. The escalations stopped, the nagging stopped, and
the evenings became much more peaceful. It wasn’t until after this issue
had been solved that my husband was able to verbalize that he didn’t know
how to deal with the anger so he purposefully worked late. Once the anger
issue was cleared up, he felt free to come home whenever he wished, which
was sometimes early enough to play with the children.
I usually worked on several concepts at a time. As I improved myself,
my husband improved in lockstep. He responded directly to having a
stronger wife. He grew stronger as I grew stronger. In hindsight, I realized
that we had both been weak and fearful. Improving myself was the best
thing I ever did for my husband.
Admittedly, it was extremely difficult to keep the focus on me through-
out the writing process. My pen seemed to have a mind of its own as it
began to drift to thoughts of how my husband’s behaviors were hurting
me. It took strenuous self-control to focus on healing myself. As I focused
on clarifying the problems as I saw them, then worked towards meeting
my own needs, I found I had little energy left to consider my partner’s
imperfections. I still studied AS, but my approach was different.
I knew that my efforts had been vastly successful when one day my
husband said, “You keep leaving Asperger articles around the house. Tell
me about them.” This was the first time he had requested information. I
didn’t mind discussing what I had learned because I knew that I was his
only resource – an information buffer between the hard, cold facts and his
nervous soul opening just a teeny crack. Through my self-improvement
efforts with the marriage journal, he saw strength in me and knew that I
was secure enough to resist lashing out with a “Finally!” or a “Duh!” or a
“Figure it out yourself.” We were able to talk about AS casually and took
another baby step on the road to marital recovery.
62 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Kicking the “normalcy” habit


The human brain is typically wired to interpret social interactions a certain
way. This is what gives the human race continuity and cohesion. As a
species we have made a huge list of rules regarding social behavior. This
generally accepted list of rules gives us the parameters of “normalcy.” If
you’re going to live with an Aspie partner, you may have to pencil in some
new rules and erase some incompatible rules. The brilliance of the Aspie
brain lies in its ability to disregard these rules. Einstein, diagnosed AS
post-mortem, was brilliant because he was able to look beyond the con-
ventional views of physics.
In order to fully accept the AS diagnosis, you’ll need to give up many
of your preconceived notions of “normal behavior.” You’ll need to kick the
“normalcy” habit. This is easier said than done. Once you do, you’ll be able
to see beyond the behavior to the intent and motivation. One woman
stated:
I believe that one of the most important skills in learning about AS is to
let go of all of our preconceived notions of… well, of everything. When
I first began learning about AS, it hit me hard that I would have to give
up many of my fundamental beliefs about “normal” human behavior. It
was on the level of a spiritual conversion where you sacrifice everything
in order to open up to the truths. You just can’t hold on to your social
belief system and empathize with an Aspie at the same time. At least, I
can’t do it.
Some may argue that it’s impossible for us to give up our ingrained notions
of “rational” human behavior. One woman shares her experience:
I know he [AS] can’t help most of the things he does, but I still find
myself getting angry. For example, I know he doesn’t recognize that I
need help when my arms are overflowing with groceries and I have a
toddler tugging on my leg and he just walks past. I know he can’t recog-
nize it and I can even identify it as “lack of emotional reciprocity,” but I
still have a natural surge of anger when this happens.
Some neurologists claim that humans are hard-wired to interpret certain
actions a certain way, and we can’t change our natural reactions. I believe
our minds are more powerful than that. We can learn to identify our
physical and psychological reaction to a situation and, in that precious split
second between realization and reaction, we can change our behavior to
THE FULL REALIZATION 63

produce a positive, desired outcome. For example, using the previous


instance of the lady whose AS husband walks past her:
Once I recognize the anger building up, I visualize it as acid in my
stomach (probably what it really is medically) and then I’m motivated to
stop it. Erupting in anger (which is what I really want to do) will only
make the acid in my stomach hurt worse. Instead, I look for healthy
options, such as saying, “Honey, please take these groceries inside for
me,” or I drop everything, pick up my toddler, and walk away for a few
minutes until the acid is gone. There are healthy solutions – I just need
to consciously choose one.
The strong man is one who is able to intercept at will the commu-
nication between the senses and the mind.
Napoleon Bonaparte, Napoleon in His Own Words

The flip side of the coin


Hans Asperger recognized that the individuals he was observing had
certain “disabilities” that were counterbalanced by certain skills:
A good professional attitude involves single-mindedness as well as
the decision to give up a large number of other interests. Many
people find this a very unpleasant decision. Quite a number of
young people choose the wrong job because, being equally
talented in different areas, they cannot muster the dedication nec-
essary to focus on a single career. With the autistic individual, on
the other hand, the matter is entirely different. With collected
energy and obvious confidence and, yes, with a blinkered attitude
towards life’s rich rewards, they go their own way, the way to
which their talents have directed them from childhood. Thus, the
truth of the old adage is proved again: good and bad in every char-
acter are just two sides of the same coin. It is simply not possible to
separate them, to opt for the positive and get rid of the negative.
Asperger 1944, p.89 in Frith 1991

The coin analogy may prove to be a highly useful tool as you consider your
partner’s AS condition. Much of the research is focused on the “negative”
aspects of AS. It may take a keen eye and a hearty dose of optimism to
identify the flip side of the coin. For example:
64 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

It feels like I’ve been through years of emotional neglect. My husband


[AS] doesn’t pay attention to me. He doesn’t even see me.
In this particular situation, the negative side of the coin is labeled “emo-
tional neglect.” Perhaps the positive side of the coin could be labeled “free-
dom.” She never had to ask him if something was “OK,” and she rarely had
to coordinate with him. He was happy just to have her by his side.
Another example:
I went into this marriage thinking that it was all about compromise.
Wrong. I learned quickly that it was always her [AS] way or no way. I
thought we could talk about these things rationally, but no, she is as
stubborn as cement.
If one side of the coin is labeled “stubborn,” what’s on the other side?
Like I said, my wife is stubborn about everything, including our
marriage vows. At one particularly low point in our marriage (I had lost
my job, money was tight, and there were health problems) she was the
strong one for us. I wanted a divorce. Looking back, I can see that I just
wanted out of the situation; I didn’t want out of my marriage. I’m
grateful that she held it together. I know that she’ll always be loyal, pro-
tective, and devoted to me and our kids.
When faced with a particularly distasteful side of a coin, it may take will-
power to flip it over and look at the other side, but you may be delighted at
what you find.

A paradigm shift
Feed your faith and your doubts will starve to death.
Anon

The currently “acceptable” view of adult relationships is that two people


meet each other halfway, they share and they compromise. One woman
explained how her view of marriage changed when she learned of her hus-
band’s AS diagnosis. She discovered that her personal view of their rela-
tionship was not only inaccurate, but it was destroying any loving feelings
she had for her partner.
I used to see marriage like this:
THE FULL REALIZATION 65

The husband and wife walk side-by-side and in the same direction, in
sync with each other. I visualize the people growing taller as they
achieve more in their lives. But in my mind I was growing to be a big,
successful person since I was doing so well
socially and career-wise. If I continued my growth
without him achieving at the same rate, then I’d
end up being this monstrously large tower, and
he’d be a little “peon” down below. I don’t want to
be married to a “peon.” But here’s the tricky part: I
want to be married to him more than I want to
aggressively develop my skills, so I stayed put as a
little-timer, not really accomplishing much. My
view of marriage was based on the assumption
that I was married to my equal. One day, while I
was in the car commuting to work, it hit me – he isn’t my equal and
never will be. We’re very, very different people.
On my daily commute, I kept pondering this topic: how do my
husband and I interrelate? Are we bookends as Liane Holliday Willey
suggests in her book, Pretending to be Normal (1999)? Are we two pieces
of a two-piece puzzle as my parents said? Are we a cypress and an oak
tree as Kahlil Gibran suggests? How do we relate as a married couple?
Here’s what I came up with as a way I could view “us” without
seeing my husband as “lesser” than me. I know that sounds awful, but
the world bases its views of personal worth on social success. It’s hard
not to fall into the trap of seeing people as better because they are good
at friendshipping, schmoozing, or networking. My husband has had
very few social successes; in fact people have commented before that
he’s “almost invisible.” I don’t want to be married to a “nearly invisible
peon.”
So here’s my new visual image of us. This is the only way I can
visualize us that removes the competitive part of our relationship. I got
the idea for this simple visual image
from the sign on a restroom door. It
looked like this:

When I sat down to eat lunch that day,


I recreated the image on a scrap of
paper, then I scribbled words inside
each of the outlines. Inside of mine I
wrote: ambitious, kind, friendly,
loving, eager, happy, bubbly, and
66 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

many other words that describe me. On my husband’s I wrote: reserved,


wise, good heart, literate, loves his computer, tender, and other words
that describe him. Although I was sorely tempted to write all the nasty
words, such as: “mean,” “cruel,” and “heartless,” I resisted the temptation
and recorded only our positive qualities. Within a few minutes of brain-
storming, my figure was filled with words; his was half-full. I took this
as a sign that I just didn’t know him well enough to fill in all of his
“being.”
I taped this paper to the dashboard of my car and stared at it for
weeks. At stoplights, I gazed at that image while thinking of all sorts of
words that could still fit inside both my husband and me. During these
weeks, I came up with several other words that fit my husband well and
scribbled them in. I visualized us as vessels that each contained all sorts
of talents, skills, and hidden potential. I visualized what both of us “con-
tained” rather than what height we’d climbed on the social ladder of
success.
It took a few months and I noticed a shift in how I treated my
husband. I started to respect him. I have to confess that I hadn’t shown
him much respect since the day we married. Literally on the second day
of our marriage, I had noticed his AS-related traits and had begun the
awful habit of “looking down on him.” By using the world’s yardstick
whereby social success equals worth, I had nearly emasculated him. I’m
so glad I consciously realized what I was doing before I did too much
damage, not only to our relationship, but also to him personally.
Now I view my husband as the rugged, respectable man that he is.
He’s a strong man and has so much inside him. I’m so glad that I took
the time to analyze my views.

Before we dive into the specifics of the AS diagnosis, take a minute to close
your eyes and find your own visual of your relationship – free up your
mind to visualize you and your partner. Is one of you bigger? Are you
smiling or scowling? Does one of you have fangs? Is one of you bleeding?
Are you skipping through a field of daisies? If you have difficulty visualiz-
ing you and your partner, it could possibly mean that either you’re not a
visual thinker or that you haven’t thought about your relationship in
depth. Those are just possibilities and it is only a simple visualization
exercise. It could mean a thousand different things, but it may be revealing
enough to give you helpful insights.
THE FULL REALIZATION 67

Of course, you may want to follow this up under the care of an experi-
enced counselor or therapist. Check out the final chapter of this book:
“Help! Where to Look.”
CHAPTER 4

First Diagnostic Criteria


Impaired Social Interaction

A. Qualitative impairment in social interaction, as manifested


by at least two of the following:
1. Marked impairments in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression, body
postures, and gestures to regulate social interaction.
2. Failure to develop peer relationships appropriate to
developmental level.
3. A lack of spontaneous seeking to share enjoyment,
interests, or achievements with other people (e.g. by a
lack of showing, bringing, or pointing out objects of
interest to other people).
4. Lack of social or emotional reciprocity.
This first criterion of the diagnosis deals with the most obvious outward
AS traits: eye contact, body posture, not sharing or reciprocating – all the
casual components of social interaction that come naturally to most
people. Let’s explore the implications of these nonverbal signals and look
for ways to work around the difficulties that can occur when nonverbal
language isn’t natural.

69
70 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Since my husband has learned to hide his lack of social skills, I asked
another similar soul what she had observed about her AS partner’s social
abilities. Here’s her response to: “How can you tell that your husband is
‘socially impaired’ as the diagnosis says?”
Want to know about “social impairment”? I’m still steaming about the
other night…we went to a party for my work. All of my colleagues were
there. He talked too loudly. He’d only talk to people about the new
handheld device he’s working on, then he walked away when people
tried to talk back to him. He complained about the catered food, saying
it was “gross!” He complained loudly about the temperature of the
room. He stood so closely to people that one woman thought he was
making an advance on her and, the worst, he passed gas loudly while
talking to my boss. Now that’s social impairment.
The above scenario contains many examples of the less “attractive” Aspie
traits in full force: sensory issues regarding food and temperature, voice
modulation difficulties, poor gauging of personal space, lack of recogni-
tion over publicly “appropriate” actions, and others. Here’s a milder
example of difficulty in social interaction:

My husband is well known in his field as one of the “Gods of High


Tech.” He has companies calling him at least once a week to see if he’ll
work for them. They even call me at home and ask me, “What can we do
to entice him to work for us?” I have always considered him to be a suc-
cessful man in his chosen profession.
Once, he had to go out to a dinner with his boss and a few col-
leagues (an extremely rare occurrence). Partners were invited so I gladly
jumped at the chance to mingle with my husband’s colleagues. I was
shocked to see how bizarre he acted. He was rude, didn’t answer them
when they spoke to him, and he misunderstood several portions of the
conversation. It’s such a contradiction that someone who is so highly
marketable in this field can be so inept at a simple dinner meeting.

As you look at how your partner acts in social settings, take a step back, a
big step back, maybe even a step out the door, and analyze what is happen-
ing. Can he act politely in a social setting? How does he communicate with
others? Is it different than how he communicates with you? Once you
objectively analyze the situation, you’ll be able to focus your social endeav-
ors better with or without your partner. The analysis may show that traits
FIRST DIAGNOSTIC CRITERIA 71

you previously saw as “negative” are actually beneficial. One woman


explains:
My husband [AS] is extremely shy. He never speaks unless spoken
to and, even then, it’s often one to two word answers. At family
reunions, if he says something, everybody will burst out with, “He
spoke!,” teasing him for his shy tendencies. I used to think that his
quiet nature was a negative trait until I started reading about all the
social gaffes that people can make when they have AS. Now I’m
thankful that my husband is so shy. It saves us a lot of embarrass-
ment.
This woman was able to recognize that her partner had developed a unique
and mutually beneficial strategy to deal with his AS-related communica-
tion difficulties. He had learned to keep quiet. With knowledge of the AS
condition, she learned how to appreciate his coping strategy as the life-
saver it truly was.
The first section of the diagnosis contains concepts that directly
threaten an adult relationship, such as a “lack of social or emotional reci-
procity.” Let’s simplify this first part of the diagnosis into two main catego-
ries: first, nonverbal behaviors, and second, failure to reach out.
Let’s look at the first general section: what does nonverbal behavior
look like in an adult relationship? There are a thousand possible examples:
My wife [AS] and I are great in the romance department, but it’s
unusual. She doesn’t seem to notice any of my advances and only takes
notice of me sexually when I’m very forward and ask directly.
Your Aspie partner may be aware of his inability to catch the nonverbal
signals that you’re sending his way:
I [AS] know that I’m missing out on all the signals she’s sending my way,
but I can’t figure it out. All I have is an awful blank awareness that I’m
missing something.
If a person is hard-wired to miss nonverbal cues, then of course they will
miss the nonverbal cues of romance: a certain look with the eyes, an arm
around your waist, a nudge and a wink. Nonverbal cues are a key element
of romantic gestures.
You may have already read the various studies that state that roughly
anywhere from 75 percent to 93 percent of human communication is
nonverbal (let’s assume 85 percent). While it is a shocking fact, it often
72 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

loses its meaning because it is cited so often. If we’re truly going to under-
stand AS, we need to wrap our minds around this statistic once and for all.
Here’s the mental exercise I used to help me appreciate the amount of
communication my husband was missing. I refer to it as “Cell Static.”
Imagine you are talking with your partner on a cell phone, but the phones
have a bad connection, lots of static, and you can only hear 15 percent of
the words. Would you understand each other? “…gr…bl…au…” Would
you repeat yourself ? Would it do any good to repeat yourself ? The odds
are the same for an Aspie trying to hear someone else’s communication. It’s
a bad cell phone connection.
What’s the solution? Get off the cell phone.
Find ways to communicate that are out of the ordinary, not in your
typical realm of communication methods. Anything but the cell phone.
Find ways to compensate for the massive 85 percent that your partner is
missing. Stop underestimating the power of nonverbal communication:
the look in your eyes, the tilt of your head, the position of your eyebrows,
the sighs, the pauses, and all the other nuances that make up the majority
of your messages. As you read this book, you’ll explore the different parts
of nonverbal communication that your AS partner is not hearing, seeing,
or feeling. In each chapter there are explanations and suggestions for
specific, outside-the-box communication ideas that may work for you
both. The bottom line is that we must find a way to get off that cell phone
and make a clear connection.
Let’s look at the second generalization for this portion of the diagnos-
tic criteria: what does it look like when a partner doesn’t reach out? This is
an expansive part of the diagnosis because it covers so many areas: how the
Aspie partner doesn’t make friends, doesn’t share things with others, and
doesn’t even respond to contact you’ve initiated. For example:
Every weekend I reach out to my boyfriend. I try to make conversation
with him and try to get him interested in something. I try to do some-
thing fun and new with him but it doesn’t always work. He doesn’t like
to try new things and I swear he’d rather that I left him alone even
though he says he likes being near me. I think he likes being near me,
but not doing things with me.
Surprising? Not really. The key lies in understanding the what and the why
behind the diagnostic criteria. The official diagnosis breaks it down nicely.
Let’s explore number one: “…eye-to-eye gaze…”
FIRST DIAGNOSTIC CRITERIA 73

What it may look like: Eye-to-eye gaze


Marked impairments in the use of multiple nonverbal
behaviors such as eye-to-eye gaze…
Have you noticed how people look at each other in the eyes when convers-
ing? Looking away can signal dishonesty, but a gaze that’s unflinching can
cause tension. There’s a fine balance achieved when you gaze into each
other’s eyes with interest and meaning. Some Aspies don’t do this. Why?
Among other reasons, they don’t see any reason to give eye contact
because they don’t gain any information from eye contact.
When I first learned about the eye-to-eye gaze issue, it sounded fishy
to me so I asked my Aspie husband:
Me: Why do you look at me?
Aspie: Because I have to.
Me: You have to? What makes you think you have to?
Aspie: Because you’ll get mad at me if I don’t.
Me: Oh.
Later that day I tried again:
Me: What do you see when you look at me?
Aspie: You.
Me: What about me? What details?
Aspie: Nothing. Just you.
Me: Come on, you must see something.
Aspie: Nope. Just you.
I knew he was being honest so I tried to compare it to what I see. When I
look at him I see his mouth curved up at the edges, showing his basic opti-
mistic nature, his eyes relaxed and tired, a bit red. I see his deep golden hair
a little messy but, oh, so sexy. I see the tan on his skin and the rosy color in
his cheeks from going swimming with our children. I see the worry lines
carved in his face from the stresses of work and family. I see the two deep
wrinkle lines in-between his eyebrows that come from furrowing his brow
when I confuse him. I see his history contained in the lines and curves of
his face.
74 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I tried looking at his face the same way he looks at mine – blank. I
couldn’t do it. There’s too much detail, too much information in his face to
not see it all. Using a mirror, I tried looking at my own face the way he sees
me. I couldn’t do that either. Through this exercise I gained empathy and a
little sorrow for the details he may never see.
I sat down with him and told him what I saw in his face and also told
him what he might see if he could see my face as others do. I told him that
he’d see that my big golden-green eyes widen when I’m scared and soften
when I’m comfortable. He’d see sorrow, pain, and wisdom in my eyes,
although I can’t tell him logically why those emotions are visible. He’d see
spontaneity in my mouth curving up, curving down, and constantly
wiggling in-between. He’d see cheeks that are smooth and rosy, peachy
from a healthy childhood. He’d see eyebrows raised to show concern or
compassion and he would see eager openness in the tilt of my head.
Behind my eyes he’d see my rock-solid, don’t-mess-with-me belief system
that tells people I’m steady and strong.
When I told him all he couldn’t see, he just said, “Wow.” It was a matter
of curiosity, a strange human insight he thought was odd, but only vaguely
interesting. It’s highly likely that he thought I was making it all up.
Reading information in a person’s eyes and face is as foreign to him as his
programming code is to me.
While I have only a smidgeon of hope that my husband will someday
see the beauty in my eyes and face, at least now I realize that he isn’t receiv-
ing the many messages my eyes are sending. I can’t be angry with him for
not receiving messages that he cannot see.

Implications and solutions: Eye-to-eye gaze


“Marked impairments in the use of multiple nonverbal
behaviors such as eye-to-eye gaze…”
It’s written somewhere in the ethereal book of “Codes for Human
Conduct” that a person must give specifically choreographed eye contact
that is appropriate to the situation. Unfortunate news stories highlight the
times that Aspies are picked up by police as being “suspicious” because of
their darting lack of eye contact. Aspies may use their peripheral vision to
view the world around them rather than looking directly at objects and
FIRST DIAGNOSTIC CRITERIA 75

people (Asperger 1944, p.42 and 49 in Frith 1991). NTs interpret this
type of peripheral glance as “disinterest” at best, “dishonesty” at worst.
For many Aspies, learning to give appropriate eye contact is necessary
for social survival. It’s a basic skill and it needs to be learned, even if it is
only fake eye contact. To learn about eye contact and other human
behavior an Aspie may turn to books, TV, magazines, or other highly fic-
tionalized sources. One woman experienced the following:
One time, we received in the mail a trashy female magazine with articles
such as “How to Seduce Your Lover.” Out of curiosity, my husband [AS]
glanced through the magazine, thinking he could learn more about the
female mystique and me. One of the many bizarre situations that came
from him reading this magazine was that he would stare at me for five
full minutes at a time, trying not to blink. An article said that gazing into
your partner’s eyes heightens the sexual tension. Unfortunately, it was
just creepy.
Even if the Aspie learns to give eye contact and can interpret information
from that contact, the visual information may be too much, too fast, too
overwhelming. An early marriage journal entry helped me see this issue
play out in real life:
We have been fighting constantly… Last night the power went out. I lit
a few candles, but it was a new moon so it was particularly dark. It was
one of the most romantic nights we’d had in a long time. We were able
to talk, laugh, and play together. Next time we have a long night ahead
of us, I plan on faking a power outage by shutting off the power switch
on the house’s breaker box.
Short of living in a dark house, maybe your Aspie partner can communi-
cate important concepts with his eyes closed. Since eye-to-eye gaze is
problematic for many Aspies, you may want to eliminate the need for it
during really important conversations that deal with life-changing situa-
tions such as moving, kids, cars, finances, etc. Maybe the following will
work:
• Candlelight – if the room is dimly lit, it will be harder for you
to read his facial expression and you’ll be a little closer to
having a level playing field.
76 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

• Monitor-light – we have found that working on the computers


at night, with only the light of the monitors to illuminate the
room, creates an atmosphere that is conducive to “chatting”
(something I adore).
• Talk while back-to-back – lie down with your backs touching.
Neither of you can see each other to read facial information but
the body positioning may put your Aspie partner at ease.
• Talk while walking. Talk while waiting at a stoplight. Talk
while making dinner. If your Aspie has an excuse for not
looking at you, it will take a little pressure off the conversation.
(This only works if your AS partner can manage two things at a
time.)
• Cell phones, e-mail, letters, and other forms of long-distance
communication can sometimes work better than in-person
communication.
Probably the most important thing you can do is remember that your Aspie
isn’t trying to hurt you by the lack of eye contact. For many NTs, eye
contact is a reaffirmation of caring. Recognize that this reaffirmation is
what you’re missing, and then find a substitute for it, such as holding
hands, touching toes, communicating with little notes, or otherwise con-
necting on a meaningful level. Brainstorm with your partner for ways he
can reaffirm his honest intentions without having to remember to give
appropriate eye contact all the time. He should be able to relax around you.
Give options.
Within our family, at least, we Aspies can hopefully be who we
need and want to be.
Liane Holliday Willey, Asperger Syndrome in the Family

TRUST
Why is it that so much of our trust is wrapped up in eye contact? Appar-
ently, lack of eye contact is the number one indicator of lying. When
policemen, lawyers, or bosses question you, they’re probably watching
your eyes, testing if you can maintain casual, honest eye contact. If you
can’t, they’ll probably think you are lying.
FIRST DIAGNOSTIC CRITERIA 77

If eye contact is overwhelming or painful for the person with AS, then
it will be nearly impossible to maintain honest eye contact for an extended
period of time. Even if your partner truly wants to please you, he may or
may not be able to give it. You can explain, “It helps me trust you when you
look me in the eyes while we’re talking,” but it may or may not make sense
to your partner. You can’t force eye contact, but you can change how you
deal with the lack of it.
First, recognize the eye contact for what it is. If you dismiss eye contact
as something your partner can’t give and you don’t need, you may gloss
over the fact that lack of eye contact is digging deep holes in your trust in
each other. When you fully recognize eye contact as an important factor,
you’ll be able to assess the problems honestly when they occur. Especially
if the AS traits are mild, you may find yourself saying:
We have been getting along so well, but for some reason, we don’t trust
each other – not even a little.
Instead of staying in a world of wonderment, analyze what is missing and
recognize it for what it is. Once you’ve identified the problem, you’ll at
least be out of the frustrating stage of wondering what’s wrong.
Second, find ways to work around the lack of eye contact. Eye contact
is a perk that brings you two in sync with each other. Moving in sync with
each other is vital and there may be other methods beside eye contact that
can provide the same effect:
To help us communicate better, we work off a strict schedule. We write
up what we want to do and when we want to do it so we’re working
towards a common goal.
Or:
Instead of eye contact, I ask him [AS] to put his arm around me
whenever he can. For me, it actually communicates far more warmth
and closeness than eye contact ever has.
Or:
So that we don’t get “off-beat” with each other, we communicate about
every little thing in the most minute detail. We don’t assume anything.
We talk; we discuss; we agonize over even the simplest matters.
There’s something about eye contact that helps two people flow together.
If you can’t get that flow through eye contact, try to find it in other actions
78 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

such as increased communication, touching, written messages, or other


actions. It takes creativity to find options that work.
As a final suggestion, don’t berate yourself for not being able to
overlook the lack of eye contact. When we underestimate the power of eye
contact, we begin to think “I shouldn’t really need this,” placing blame on
ourselves when blame is inappropriate.
Despite the work-arounds my husband and I have for the lack of eye
contact, I have found that there are certain times when my NT eyes need
eye contact. Most often, it occurs when my partner is looking at his
computer screen and I’m trying to tell him something important. I’ll ask
him to look at me because “I need to see your eyes” and the message usually
gets through to him. As long as I present it as my need – which it truly is –
then we can work in sync. If I try to force him to give eye contact as NTs do,
the pressure is too great, and he’ll turn his head towards me with his eyes
still on his trustworthy computer screen.
It takes a full realization of the purpose of eye contact for us to identify
the origin of our “mistrust.” Books such as Mindblindness by Simon
Baron-Cohen (1995) explain in great detail the technical reasons for the
lack of eye contact and what it does to human interactions. Perhaps you’ll
need a more in-depth explanation of this phenomenon before you can
forgive yourself for your natural NT tendency to need eye contact. If your
partner experiences mindblindness, you may need this additional informa-
tion to build a solid foundation of trust.

What it may look like: Facial expression


“Marked impairments in the use of multiple nonverbal
behaviors such as…facial expression…”
Studies of the AS brain have shown that Aspies use a different part of the
brain to interpret faces than most people use (Baron-Cohen 1995,
pp.90–91). Due to many different factors, Aspies often misinterpret the
standardized, unwritten rules of facial expression.
It may sound like a simple fact that many Aspies don’t interpret facial
expressions, but let’s not fall prey to underestimating this huge part of
human interaction. Facial expressions are a crucial part of communication.
FIRST DIAGNOSTIC CRITERIA 79

There are two parts to this particular difficulty: not seeing and not express-
ing. The aspie may not express appropriate facial expressions himself; in
fact, “There may be little facial expression except with strong emotions
such as anger or misery” (Wing 1981). An aspie’s facial expressions are
often described as “wooden” or, a more general descriptor, “inappropri-
ate.” A few examples:
We were at our child’s school, watching our child receive an award, but
my husband [AS] just clapped. No ear-to-ear smile like other parents
showing pride in his child.
Or:
I can never tell when he’s angry or happy. He looks so blank.
Or:
I fell down the stairs and broke my ankle. I looked up to see that my wife
[AS] was smiling like some devious sort of Cheshire cat.
You will most likely misread your partner if he is showing facial expres-
sions that are mismatched to his feelings. When a person doesn’t show the
correct facial expression in relation to the situation, it can lead to all sorts
of misunderstandings that can derail even the strongest relationship. For
example:
NT: Verbally explaining a serious close-to-the-heart concern.
AS: Facially expressing a careless attitude with a blank expression.
NT: Perceives this facial expression as a clear signal of uncaring,
perhaps even as an insult.
The second issue is that the person with AS may misread or not notice the
facial expressions of another. For example:
Our marriage is dead. I’ve been giving my husband [AS] icy stares for
two decades now and he doesn’t even seem to notice.

Implications and solutions: Facial expression


“Marked impairments in the use of multiple nonverbal
behaviors such as…facial expression…”
Not being able to read someone’s face can lead to devastating
consequences. Facial expressions are a vital part of our communication
80 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

with one another. You may be giving the facial cues, body language cues,
all sorts of nonverbal cues to indicate “I’m mad,” “I need help,” even “I hate
you,” and your partner may miss them entirely. Here’s an off-the-wall
solution that one couple found successful:
I was desperate last Saturday morning so I told my husband that I was
doing an experiment for a project (he didn’t question me) and that I
needed to explain everything to him throughout the day as if he was
blind. I explained, “I’m carrying all the groceries in the house by myself
and I need you to carry half the bags into the house with me.” Later it
was things like, “The garbage is overflowing. Could you take it out?”
Later that night, while watching TV, I said, “Please put your arm around
me while we watch TV.” At first, I felt like I was being bossy, but he
appreciated the clear directions. I was so thrilled at his responses that it
turned out to be one of the best weekends we’d had together in years.
The “experiment” still hasn’t stopped.
This woman shifted her nonverbal communication to direct verbal com-
munication and it solved many problems. She stopped assuming her AS
partner could see things that were obvious to her. It became a
marriage-saving habit for her to explain things clearly to her husband.
You may try to show your partner what “happy,” “mad,” and “loving”
look like in pictures from a book or magazine, but the frowning face in a
book may not be equated with your frowning face. Due to weak central
coherence (the inability to relate one concept to another), he may not gen-
eralize from the picture to your face. If facial expressions are baffling for
your AS partner, make absolutely sure he at least learns how to interpret
you specifically.
For my husband, I was able to tell him, “This is my mad face. This is my
furious face. This is my relaxed face,” and so on. That’s all he needed to
know. For a partner with more severe AS, you may want to make “face
photos” as a visual tool. It may sound silly at first, but it will probably pay
off better than you expect. Face photos are simply photos of you making
your most common natural facial expressions. You may even want to label
the pictures with instructions. For example: Upset-Please talk with me;
Angry – Please stay away; Romantic – Please touch me; Furious – Run for
cover!
You could post the pictures in a private corner of your closet where no
visitors would ever see them. You may be surprised to find your partner
FIRST DIAGNOSTIC CRITERIA 81

referring to the photos and looking at the photos in an effort to decode


you. If he can’t figure you out, he can always ask for a translation of your
facial expression. The only rule is that you need to be 100 percent honest
in your expression of emotion.
One woman, whose AS husband was a bit too defensive to handle
direct information, was able to couch the face photos inconspicuously in a
children’s book. She had made many small booklets for her children that
had photos of grandma and grandpa and other family members in them.
She made a booklet titled “Emotions” with photos of her own face and
captions such as “Happy” or “Annoyed: Please stop what you are doing.”
The booklet dealt with 12 of the most common facial expressions along
with a few desired reactions: happy, sad, angry, proud, sweet (wants a kiss!),
bored, annoyed (please stop what you’re doing), needy (say, “Can I help
you?’), calm, depressed (please hug me), tired, and confused (please try to
answer my questions). She set it out as the bedtime story book for her
husband to read to the children every night before bed. Interestingly, after
making the booklet, she noticed her husband giving more eye contact –
staring into her face as if searching for meaning. He was finally learning to
decode her.
FACEBLINDNESS
If your AS partner has extreme difficulties with facial expression, it may be
based in a neurological condition known as prosopagnosia (PPG), or
“faceblindness,” where the person has difficulties differentiating one face
from another.
Faceblindness is a condition that I easily dismissed as too abnormal for
our little family to experience, but as I learned about it, I realized a mild
form of faceblindness had crippled both my husband and my son’s abilities
to recognize other people. My first realization with faceblindness was
when I noticed that my pre-teen son still wasn’t drawing faces on people. If
I required him to, he would draw dots for eyes, a smudge of a nose and a U
for a smile. All of his natural drawings contained no faces, just a round,
blank circle for a head. A child typically learns how to draw faces accu-
rately between the ages of four and six. My pre-teen son still wasn’t
showing any facial features that would differentiate certain people from
others. The blank heads were haunting to me but were a natural part of his
82 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

perception. He saw no reason to draw in a face because it was a meaning-


less element to him.
Armed with this knowledge, I approached my husband to see if he
experienced anything similar. Through his life, he has learned, in a clinical
manner, to recognize and read faces. He suspects that this information did
not come naturally to him but, through diligent study, he can usually dis-
tinguish Bob from Joe and Sally from Sue. He has become skilled enough
to have only minor difficulties in this area, but not be classified as
faceblind.
Although a person with faceblindness may have learned to compen-
sate and is probably blending into the population just like the rest of us,
true faceblindness can lead to all sorts of difficulties at work, home, and in
any setting where people are involved. For example:
I hate going to office parties because I can never remember who is who,
no matter how hard I try.
Or:
I’ll make a friend, but then the next time I see that person, I fail to recog-
nize her and she is offended.
Or:
I’ve seen that person dozens of times, but I still don’t recognize him
when I see him. He has to introduce himself first.

Or:
I recognize people by the types of clothes they wear. I can recognize
people at work during the day, but when they change clothes the next
day, I have to start over reidentifying them.
As with many other areas of Asperger Syndrome, the person with AS may
or may not be aware of the cause of confusion. If the faceblindness is the
only experience he has had, then he may not know of any other way of
seeing people around him. The realization that most people intrinsically
understand the complexities and nuances in the human face may be quite
depressing.
FIRST DIAGNOSTIC CRITERIA 83

What it may look like: Body postures


“Marked impairments in the use of multiple nonverbal behaviors
such as…body postures…”
There are hundreds of complex gestures that humans make to help each
other understand their messages. For example, if you are talking to
someone and that person opens his eyes a little wider, moves his body a
little closer, leans in a bit, puts his hand near you, and stays relatively still,
you know that he is listening to you intently. If that same person takes a
step back, slits his eyes, crosses his arms, taps his toe, fidgets, and turns his
body as if to leave, you know that he’s ready to end the conversation.
Body postures can be amazingly complex and explaining them all in
their various combinations could fill volumes. Crossing your arms means
you’re not too friendly. Crossing your legs means you’re sexy. Hands on
your hips means you’re aggressive. Feet spread apart means you’re strong.
Understanding the language of another person’s body posture comes nat-
urally to me; to my Aspie husband, it may as well be Latin.
Without an understanding of body posture, your partner may use “in-
appropriate” body postures, i.e. body postures that communicate an incon-
gruous message to an NT audience. For example:
When he [AS] goes for a job interview, he sits far back in the chair with
his arms folded, his teeth clenched, his legs tight together, and his eyes
downcast. He looks tense and withdrawn. We’re working on the appro-
priate body posture: leaning forward slightly, arms open, eyes up, feet
apart, and whole body sitting upright but relaxed.
Or:
She [AS] stood so close to her boss that her boss got the idea that she
was attracted to him.
Or:
She [AS] stood so far away from me that I thought she didn’t want to
talk.
Or:
Even when we’re in the heat of an argument, he [AS] looks so relaxed,
leaning back on the couch like nothing had happened. It makes me
furious!
84 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

It’s easy to see the number of difficulties that can arise when a person’s
body posture does not match the situation.

Implications and solutions: Body postures


“Marked impairments in the use of multiple nonverbal
behaviors such as…body postures…”
When a person with AS uses a body posture that doesn’t match the
situation or is incongruous with what he is trying to communicate, he gets
a double-slam. Not only is his message misunderstood, but also he
probably doesn’t understand the repercussions of the miscommunication.
For example:
AS: …but I’m trying to talk with you.
NT: All I can see are your crossed arms, your furrowed brow, and your
tense stance. I can’t talk with you until you relax and open up a bit.
AS: What?
Although body posture seems like a simple part of communication, it can
lead to all sorts of trouble. Without an intuitive understanding of body
postures, the person with AS may misread another’s intentions. For
example:
We ran into some friends when we were out the other day. They were
talkative and wanted to catch up with us, but my husband [AS] hurried
us on our way and rudely cut the conversation short. I asked why and he
said, “Because they were carrying heavy bags.” He couldn’t see all the
other indicators that showed that this couple wanted to talk with us for
a minute. I pointed out the indicators: their arms were open, their bodies
relaxed, their heads leaned forward slightly, they stood a little closer to
us than normal body spacing, and they focused their visual attention on
us. I showed my husband the contrast: if they didn’t want to talk then
they would have held their bags in front of their bodies, stood a little
further away, and would have looked around anxiously. Once he could
see the difference in body postures, he understood that the body
posture was a more accurate indicator than the pure logic of his interpre-
tation. True to his engineer-style, he said, “It appears that 89 percent of
the indicators pointed to desired conversation, but only 11 percent of
the indicators pointed to desired departure.”
FIRST DIAGNOSTIC CRITERIA 85

Body posture communicates volumes and, unless the Aspie is with


someone who truly understands him, any “inappropriate” body posture
will be misunderstood. Hopefully, around you and other safe people, your
Aspie partner won’t have to make the extra cognitive and physical effort of
calculating “appropriate” body posture.
Body postures are often a part of romantic overtones and may or may
not have been an issue for you and your partner when you were first getting
together. One woman explains:
When I first met him [AS], I sent him so many cues. We met in college... I
would sit next to him in class and lean ever so gently in his direction,
brushing my arm against his. I would always sit a little bit closer to him
than I needed to. I would brush my hair to the side in a sexy way. I would
do all sorts of things unconsciously and consciously that said, “I’m
attracted to you.” After about three months of this with no response, I
felt rejected. I wondered if he was gay.
If body postures are a problem for your Aspie partner, you may want to
give yourself a constant mental reminder that his body postures are not a
part of the message he intends to send. For example, if he indicates
friendly, compassionate feelings, but his body says otherwise, it might be
best to trust his words first and disregard the other nonverbal messages he’s
sending.
Of course, a person can learn about appropriate body postures. An NT
knows them intuitively; an Aspie can learn them methodically. As my
husband learns about appropriate body postures and the messages they
convey, it becomes easier for him to match his body to his words and
emotions. Once, when I commented that body posture must be like Latin
to him, he said, “It’s pig Latin. I don’t understand it immediately, but I can
figure it out if I want to.”
CLUMSINESS
Clumsiness is often associated with Asperger Syndrome (Attwood 1998,
p.103; Tantam 1991, pp.162–4). It’s often called “global motor delay,”
indicating that fine motor skills, e.g. small refined movements such as
handwriting, are often as delayed as the large motor skills, e.g. large muscle
groups used for running or dancing.
These motor skills are so much more important than they appear to be
on the surface. A person’s sense of clumsiness, although it’s based in a
86 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

physical dysfunction, can carry over into self-esteem issues. The adult
Aspie may withdraw or mask his poor coordination by not participating in
athletic activities. For example:
My husband [AS] is an expert at sidestepping situations that would
showcase his athletic inabilities. He has even been able to portray an
image of ability while adeptly avoiding any situation that might reveal
his lack of coordination.
The Aspie may be able to effectively hide the clumsiness from view but
nearly all traditional courting requires coordination. Despite his best
efforts, the lack of coordination may become evident as you two become
intimate. For example:
I adore him [AS] but he is such an awkward kisser. I wish he could
somehow relax.
Or:
We can’t just hold hands – the hands must be interlocked a certain way
with a certain tension. He’s even picky about the temperature of my
hands.
Or:
I love it when he puts his arm around me but he almost never does it…
It’s so stressful for him that it isn’t worth it.
An Aspie’s over-reliance on visual information may contribute to the clum-
siness. For example, ask a person with AS to hop on one leg in a straight
line and he may hop just fine, but ask him to hop in a straight line with his
eyes closed, and he may not stay standing. Try a few activities with your
Aspie partner to see if he relies heavily on visual input. Ask him to walk a
straight line, turn around and walk back, this time with his eyes closed.
What happens? Make up a few of your own ideas to see if this is the case. If
you find that your Aspie relies on visual input, use that information to your
advantage. The realization that your partner is a visual thinker may open
up your eyes to issues that have previously been problematic. For example:
I have learned that if I use visuals with my partner, she [AS] responds so
much better. Instead of explaining something to her, I show her what it
looks like.
FIRST DIAGNOSTIC CRITERIA 87

Or:
Once we started talking about my wife’s [AS] sensory issues, we found
that she is deeply affected by visual stimuli. We have spent some time
and money making our home visually comforting to her. We had the
inside of the house repainted and we took down the bright mauve
drapes… It soothes her to have a calm environment.
Or:
I [AS] get dizzy easily. Sometimes when I close my eyes, it feels like I’m
falling into bottomless black space. I’ll keep my eyes open just to keep
the dizziness under control. If I can see something solid, it helps
reassure me that I’m not really falling.
There are all sorts of compensating measures that a person can take to
increase coordination and body awareness: physical therapy, a healthy
diet, staying physically fit, or pinpointing the most difficult tasks, then
finding exercises that help build muscle and refine coordination. Of
course, these may only help, not “cure” the condition and they all require a
willing AS partner and a kindhearted, supportive you. My Aspie husband
and I are egged on by our children begging us to go swimming, play tennis,
ride bikes, go on walks, and other activities that practice coordinated body
movement.
People with AS are typically not athletic while growing up (Attwood
1998, pp.104–5). Maybe your AS partner was able to participate in
semi-solitary sports, such as karate, gymnastics, skiing, or golf. Team
sports, such as football, basketball, soccer, hockey, and baseball, are partic-
ularly difficult for a person with AS because they involve a high level of
coordination, plus a high level of communication between team members.
Your partner may not have had the same amount of experience, and thus
the same amount of hard-earned skill, that you have in being a solid team
player. One couple explain:
I played football in high school. We all had to cooperate as a team or
we’d get clobbered. Now that my wife [AS] and I have kids, I’ve tried to
explain to her that we need to work as a team, but she just doesn’t get it.
I feel like I’m the quarterback and I’m getting sacked several times a day.
So, maybe the athletic comparisons won’t mean much to your partner. It
may go in one ear and out the other when you say, “We need to work
88 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

together” or “We’re a team.” The concept of teamwork may be something


that you build slowly and conscientiously within your relationship.
EXECUTIVE FUNCTION AND DYSPRAXIA
Executive function describes a person’s ability to plan and execute tasks.
For example:
During the week he [AS] has a highly structured work schedule. On the
weekends the schedule isn’t there and he can’t plan the day or even what
to do next. If I don’t give him a schedule, he goes into zombie mode and
doesn’t do anything except walk slowly around the house.
Dyspraxia is the impairment of the organization of movement. It affects
how the person plans what to do and how to do it. It can be something as
simple as getting dressed in the morning to something as difficult as a
romantic encounter. Here are two examples:
My wife [AS] often spills food on her shirt when she eats. She tries hard,
but somehow she can’t manage a meal without getting a few stains on
her shirt.
Or:
Have you ever seen a movie that shows two young teenagers kissing for
the first time? They try to get close to each other, but their motions are
tentative and awkward. That’s my boyfriend [AS]. If I wasn’t so careful,
we’d get knocked teeth or bloody noses from his poorly coordinated
kissing.
If your partner has dyspraxia or difficulties with executive function, you
may find it is at the base of thousands of misunderstandings. You may
wonder why your partner “doesn’t care enough to help you plan the kid’s
birthday parties” or “can’t clean up after himself.” The lack of success with
small daily matters may carry over to so many aspects of your lives together
that you have a hard time identifying it and can only be angry at the times
when the negative consequences flare up in front of you.
Once, based on some poor advice given in a marital book that didn’t
recognize AS, I made a “Won’t Do” list. The list contained tasks that my
husband wouldn’t attempt, even though he knew that I needed his partici-
pation. Based on this list, I wondered why I was still married to this man
who apparently was not participating in the marriage. Some of the items
on the “Won’t Do” list were:
FIRST DIAGNOSTIC CRITERIA 89

• Won’t help me figure out the children’s schooling issues.


• Won’t help with the tougher cleaning tasks.
• Won’t help me schedule our work hours around the kids.
• Won’t make phone calls or write appointments on the calendar.
This list grew quickly to 40 items. In retrospect, I could see that every item
required significant skill in planning and executing tasks. My husband’s
difficulties with executive function made it nearly impossible for him to
attempt such tasks. For example, “Won’t help me figure out the children’s
schooling issues” is a task that takes a tremendous amount of organization,
brainstorming, critical thinking and other skills that he is lacking. He has
his unique strengths, but troubleshooting issues such as these are about as
complicated as asking him to physically move the children’s school closer
to our home. It’s a fantastical request.
If I were to make a comparable “Will Do” list, it would contain items
such as:
• Will keep home computer network functioning.
• Will vacuum the whole house (even the corners) every
Saturday.
• Will pay bills on time.
• Will participate in regularly scheduled activities with the
children.
The “Will Do” tasks are predictable, linear, and routine – they don’t require
planning. Knowledge of my partner’s strengths (predictability) and weak-
nesses (novelty) shed light on otherwise dark, angry parts of the marriage.
Personally, I have often wondered if dyspraxia or difficulties with
executive function are what cause my husband to slow down and even
freeze sometimes. I received much-needed insights from Dr. George T.
Lynn’s (1999) article, “Five Survival Strategies to Help Children with
Asperger’s Syndrome Overcome Inertia.” When I first saw this article, I
nearly hyperventilated at seeing that there might be a reason for my
husband’s apparent inertia. It was the first time I had seen “Asperger
Syndrome” and “inertia” in the same sentence. Here are several examples of
inertia:
90 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

He is a young, healthy male, but when he is stressed, he climbs the stairs


as slowly as a 90-year-old granny with a broken hip. Sometimes I can
barely detect movement.
Or:
If he [AS] walks past a TV screen, computer monitor, or anything with
moving pictures on it, he freezes. He’s in a sort of coma until someone
can engage him in something else. It’s far more than just being a couch
potato.
It can actually be dangerous, as in the following scenario:
The baby was crawling towards the half-dozen electrical cords plugged
into the surge protector. He [AS] was sitting right beside them, but he
moved so slowly that his movement to stop the baby couldn’t keep up
with the clumsy, slow movement of our infant son. He couldn’t move
fast enough.
Dr Lynn (1999) explains the apparent inertia and why it may occur in
those with AS:
This lack of ability to initiate activity probably relates to the fact
that Asperger’s kids may be deeply apraxic when it comes to affec-
tive, cognitive, and behavioral tasks. That is, they do not automati-
cally visualize what movements look like, what conversation with
others might sound like, or generally what will happen in the
future. Having no way of seeing the potential future, the child
cannot plan his present action and so does nothing. Normal
people continually feed themselves flashes of images of the next
movement a split second before the movement happens. The child
with Asperger’s syndrome may lack this awareness. As a result he is
slowed in movement to the point of not moving at all.

THE PARENT–CHILD TRAP


Without several of the crucial elements of basic human social interaction –
gestures, body posture, facial expressions, eye-to-eye gaze – you may find
yourself falling into a nasty trap: you may treat your partner like a child,
and/or you may fall into the role of parent or teacher.
You may find yourself saying, “Look at me when I’m talking to you” or
“Sit up straight” or “Wipe that smile off your face.” All of these smack of a
mother talking to her naughty child. While we want to do whatever it
takes to help our partners to be functional, this is a slippery slope. It
FIRST DIAGNOSTIC CRITERIA 91

appears to be wrapped up in attitude. There’s a difference between “Eat


your peas, honey” and helping your partner past the obstacles that often
occur at a dinner table. Listen in to one couple’s journey through this issue:

My wife [AS] hates it when I speak to her like she’s a child. It seems like
she’s always complaining, “Don’t talk to me as if I’m two! Just leave me
alone.” I hear the words “Leave me alone” several times a day and, to be
honest, it does remind me of a child.
She is partly right; I am talking down to her. I don’t know how to
say what I need to say without it sounding parental. The content of
what I’m saying is so elementary. For example, I’ll say, “Honey, you
really need to put down that spoon and move on to the next thing you
want to do tonight.” She gets stuck in ruts and needs help going from
one thing to the next. She appreciates my help and doesn’t function ef-
fectively without it, but she resents the way I give it.
One day she said, “Why don’t you treat me like you do all your
friends from work?” It occurred to me that I didn’t treat her like an adult
and maybe I should give it a try. For several days I tried to catch myself
before I talked down to her, but I just couldn’t do it. She was still doing
all the silly things she always does and I responded the same way I
always do.
One Sunday she wore a professional looking dress and, for the first
time in ages, I found it easy to speak with her eloquently and respect-
fully. She loved it! I still gave advice, timely nudges, and redirected her
efforts but the words had changed. Instead of, “Put down that spoon” it
was “Hey, let’s go for a walk.”
In hindsight, I realized that I needed a visual. I needed to see her
look like an adult before I could treat her like one. It’s embarrassing to
admit; it seems so shallow. I guess we both have our faults. When I need
help treating her like an adult, we go out to dinner at a nice restaurant
and she wears a tailored outfit. It works every time.

As we struggle with the difficulties that AS presents daily, some of us throw


tradition to the wind and adopt a “whatever works” attitude. The couple
mentioned above found a small but meaningful way to circumvent several
significant problems. They managed to achieve the desirable end result –
mutual respect without too much personal sacrifice. We all have to resort to
odd tactics at times, and if both people are truly committed to the relation-
ship, they’ll do unusual things to make it work.
92 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

What it may look like: Gestures


“Marked impairments in the use of multiple nonverbal
behaviors such as…gestures to regulate social interaction”
Some people talk with their hands; some people keep them relatively still,
but these small gestures create the nuances that change the tone and direc-
tion of conversations. Gestures can indicate anger, aggression, pride,
friendship, love, and many other emotions nonverbally. One woman
shows her Aspie husband’s use of gestures:
My husband [AS] is very still. He doesn’t fidget and he doesn’t move
unless he has to. He doesn’t do any of the natural wiggly things that
many people do. When he is talking about computers to someone, he’ll
point his fingers in the weirdest way. I’ve never seen anybody point like
that and it’s impossible to describe, but several people have commented
to me how weird it looks.
Since the gestures don’t come naturally, it’s possible that an Aspie may try
to imitate the gestures he sees others make. The gestures don’t feel natural
to him and therefore look odd. To an Aspie, learning appropriate gestures
can equate to learning a foreign language or sport. Liane Holliday Willey
(1999), an adult Aspie, explains her own “uncanny…ability to copy
accents, vocal inflections, facial expressions, hand movements, gaits, and
tiny gestures” (p.27). Some Aspies can copy motions as accurately as a
trained professional actor, while others can only fake the gesture on an
amateur level.
There are two components to this portion of the diagnostic criteria: the
Aspie may not be able to successfully communicate using common
gestures and/or may not be able to read the gestures made by another
person.

Implications and solutions: Gestures


“Marked impairments in the use of multiple nonverbal
behaviors such as…gestures to regulate social interaction”
Gestures are at the heart of movie-screen romance. Watch any romantic
drama and you’ll notice that gestures are part of what leads to the romantic
encounter. Of course, there are also the cues from the eyes, the sensual
FIRST DIAGNOSTIC CRITERIA 93

body postures, and the delicately crafted conversation, but the gestures are
an important component. Watch the man’s arm go near or gently around
the woman’s shoulder, the woman’s hand touch her face softly in a
come-hither way or both of them make small, smooth, sexy motions with
their hands. Birds aren’t the only ones who do a mating dance.
If your Aspie partner wishes to learn the art of romantic gestures, one
easy way is to watch films together. Actors spend many hours learning how
to make their gestures match their speech and character. The hand motions
will most likely be well rehearsed and accurate. A full-length film will give
your partner a chance to analyze a full range of gestures for one particular
character or several characters.
Although your AS partner may be able to learn the appropriate
gestures for a given situation, it’s only speculation that leads us to believe
that a person with AS can put the learned behavior to good use consis-
tently over time. He may use the gestures awkwardly or inappropriately.
The gestures may appear practiced or phony. There’s also the chance that
even though the gestures can be executed correctly and fluidly, they will be
performed at inappropriate times: e.g. gestures that indicate flirting per-
formed in front of a boss or co-worker.
It’s possible that your AS partner doesn’t wish to learn the gestures
used by NTs. It may be a language that he doesn’t care to learn. In this case,
pointing it out does no good and only increases the obvious distance
between you and your partner. Personally, my AS spouse doesn’t care to
learn appropriate hand gestures. He’d rather keep his hands still and not
bother with such complicated and frivolous matters. I respect that.
MINDBLINDNESS
Simon Baron-Cohen points out in his intriguing essay Mindblindness
(1995) that our ability to determine another person’s state of mind is
crucial to our social success. For example, if approached by a stranger, how
do you verify if the stranger is friendly or threatening? There are clues that
a person gives and we need to pick up these clues in order to stay safe and
move around effectively in our social world.
For NTs, mindreading is as natural as walking or talking. NTs know
others have intentions and motivations that are different from their own.
We look for clues to tell us whether or not someone is going to be a friend
94 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

or foe. For example, if a stranger approaches you and your AS partner, you
may determine that the person is aggressive and harmful by his gestures,
speech, physical appearance, and body positioning. Your AS partner may
not realize that the stranger has harmful intent and therefore may act inap-
propriately.
One of the first studies done to show mindblindness consisted of
telling a child a scenario and seeing if he could correctly interpret it.
Researchers quizzed the children about a scenario in which a little girl
named Sally places a marble in a covered basket then leaves the room.
While Sally is gone from the room, her friend Anne moves the marble from
the basket to a covered box nearby. When the children are asked where
Sally would look for her marble, even mentally retarded children knew she
would expect to find it where she’d left it, but some of the brightest autistic
children thought Sally would look in the box where Anne hid the marble.
They had “mindblindness;” they couldn’t see the world through Sally’s
eyes.
I tried this experiment with my own children and my husband. I made
up an example using their friends” names and the current handheld game
system. If I had used details that were unfamiliar to them, they may not
have been able to answer at all. We may not have gotten past the questions
of “Who is Sally?” and “Why do you want to know?” and “Why are you
asking me?” and “Can I go now?” I’ve learned that the most successful
interactions between us occur when we are discussing specifics from their
world.
The example I used was the same as Sally and her marble, but with
elements my children and husband could see. I thought that they would
easily understand the experiment, but to my surprise they all showed
mindblindness in the example of Zach and his Gameboy®. With each of
®
them, I explained that Zach didn’t know his Gameboy had been moved
and they quickly said, “Oh yeah, oh yeah, I know, you just said it wrong.”
Their frustration with the exercise was apparent. They were conscious of a
painful sensation – not being able to read the thoughts and behaviors of
other people. They quickly asked for another example and were able to
predict the pattern once they had been given the rule: “a person won’t see
it’s moved if he’s out of the room.” But knowing the rule to this exercise
does not explain away the fact that they couldn’t answer correctly without
FIRST DIAGNOSTIC CRITERIA 95

the rule. Although I tested my AS children and my AS husband separately,


they all followed the same pattern – complete misbelief over their inability
to understand the problem the first time followed by a desire to master it
the second time. Once they had the rule and knew that I was testing them,
they were on the defensive and I couldn’t “trick” them anymore. They
were still mindblind, but now they were equipped with the rule.
Simon Baron-Cohen completed many other studies showing an
Aspie’s inability to read other’s intentions. One study showed how Aspies
have a hard time reading facial expressions. Even the most brilliant AS
adults can be stumped with some of these questions. In my husband’s case,
early in his career he was drawn to a project that developed one of the first
lip-syncing software packages. Many months of intense study went into
calculating the exact positions of different parts of the mouth, eyes, and
other facial features to show particular sounds and emotions. It was a
clinical, logical, extremely thorough breakdown of the positioning of
facial features to indicate human emotion. The entire time he was on this
lip-syncing project, he was intrigued by the new revelations of facial
expression. He would come home bubbling over with information about
the human face. I marveled at his naivety; he didn’t seem to notice that
other people already knew how to read faces without such intensive study.
Because of this experience, my husband can now accurately, albeit
clinically, determine the mood of a person by the expression on their face.
For Aspies who don’t have months to dedicate to the intricate study of
facial expressions, they may be left out in the cold during times when facial
expressions are part of the nonverbal dialogue. If an Aspie can’t perceive
the mental state of another person, he won’t be able to show empathy or
identify deceit. One example:
People say I’m gullible. They tell jokes just to laugh at me. They tease,
taunt, and torture me because they know that I can’t tell the difference
between a joke and a factual statement.
It seems cruel to take advantage of someone who cannot perceive these
nuances. Maxine Aston (2001), a counselor specializing in AS couples
therapy, elaborates: “To expect a person with Asperger Syndrome to know
what someone is thinking, no matter how intimate they are, would be like
expecting a blind person to guess what someone is holding in their hand
without giving them any clues” (p.45).
96 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I realized this aspect of mindblindness in a personal way several


months ago when I was limping across the family room in our home. I was
carrying several heavy objects and obviously needed help. Typically, my
husband does not see me unless I request his attention, but this time he
stood in the kitchen, looking at me – just looking. He said, “I can see you
but I can’t understand it.” I know he is making a conscious effort to verbal-
ize what is going on internally. In this situation, he could not figure out a
correct reaction, but he could identify that something was wrong. All I had
to do was say, “Come here” and a quick solution was put into action, but
the situation needed to be recognized for what it was – a cognitive blind-
ness.
READING PEOPLE
There are many crucial elements involved in reading the nonverbal signals
that people send. It may help your Aspie partner to study people’s nonver-
bal signals in a clinical, detached manner. A casual, non-confrontational
way to explore (and teach) is to spend a lazy afternoon sitting on a park
bench, watching people go by. You might say, “I think that couple looks
like they are in love. Look at how they are holding hands and walking in
sync. Their heads are leaning toward each other.” This approach may or
may not work, depending on how you and your partner communicate
verbally. You may end up arguing over a ridiculously irrelevant point such
as “That man looks stressed.” – “No, he just looks concerned…”
An excellent resource for learning to decode human behavior is the
book Reading People: How to Understand People and Predict Their Behavior –
Anytime, Anyplace by Jo-Ellan Dimitrius and Mark Mazzarella (1998).
Jo-Ellan Dimitrius explains how, as a lawyer, she had to perfect the art of
reading people so that she could effectively choose jurors. For her client,
her choice could mean the difference between life and death. She carefully
and logically defines human nature and discusses stereotypes. Most people
pick up this information naturally and fluidly, but Aspies may need direct
and specific instruction. Studying the basics of human behavior may give
an Aspie a social advantage.
Appendix B in Reading People is particularly helpful because it outlines
“Body language and what it reveals.” It outlines exactly which body
postures are linked to which mental states, such as embarrassment, defen-
FIRST DIAGNOSTIC CRITERIA 97

siveness, or romantic interest, explaining exactly what a person’s body


does to communicate a particular mental state. The person with AS does
not naturally attribute mental states to others (Baron-Cohen 1995) so this
direct, explicit information may be highly valuable to a motivated Aspie
who wishes to learn more about which mental states are communicated by
certain body language, gestures, and the like.
At times, Aspies may strive to define and classify human behaviors in
an effort to make their interactions more predictable. While my Aspie
husband was reading the book, he grasped many of the rules but he could
not grasp the generalities – they frustrated him. He couldn’t understand
why a certain body posture could mean 20 different things. He wanted
concrete, unchanging rules that applied to all people. On a good day, my
husband could skim a few pages of Reading People, pick up a few tips and
apply them successfully in daily life. On a bad day, he couldn’t even touch
the book. He has been most comforted by Liane Holliday Willey’s (2001)
explanation of how to learn NT behavior:
As difficult as it is for me to interpret NT behaviors when I am on
the outside looking in, I have learned that, provided I have enough
time, I can usually get to the bottom of the pile when I am trying to
figure someone out… I analyze my way through people… I put
them under microscopes and take note of the things they do with
their hands, their eyes, their legs, their entire body. I listen to their
voices for changes in their pitch and tone and cadence. I compare
how they are acting to how they have acted under different condi-
tions. I can tell when they are lying by noting changes in these
behaviors, even though I won’t know why they are lying. (p.85)

What it may look like: Peer relationships


“Failure to develop peer relationships appropriate to devel-
opmental level”
Although it’s possible, it is unlikely that your Aspie partner has formed
many solid friendships in his life (Attwood 1998, pp.50–1). One or more
of the following scenarios may sound familiar:
He [AS] has one friend on the east coast that he talks to once or twice a
year, and he says that’s plenty.
98 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Or:
On one of the AS questionnaires, he [AS] responded that yes, he has
friends. I asked him about it and found that he thinks that mere acquain-
tances are his friends. Everyone he has ever met (and not offended) qual-
ifies as a friend.
Or:
He [AS] doesn’t have any friends of his own and doesn’t see why I
should have any. Even having one of my friends over to the house for
dinner is distressing for him.
Or:
Whenever someone tries to get close to her [AS], she has a misunder-
standing with the person and any chance for friendship is cut off. I
don’t think she’s ever actually had a “friend” in the traditional sense of
the word for more than a few weeks at a time.
Or:
She [AS] has used the moms of our children’s friends as her source for
making friends. I don’t think they are genuine friends since they only
arrange play-dates and occasionally chat about the children, but it’s the
only source of friendship that she has found as an adult.
Or:
I don’t think she [AS] likes having or maintaining friends at all. It seems
more like a burden or a chore. To survive as a socially acceptable
creature at work and in the neighborhood, she picks someone who is
socially well-placed and does the friendship dance as a matter of
survival.
It seems as if every Aspie has a different approach to friendship. Author
Liane Holliday Willey (1999) appreciated her few friends over the years as
a source of strength. Other Aspies see friends as a source of confusion. The
level of friendship, desire for friendship, and type of friendship are all
personal preferences. If your AS partner fits this part of the diagnostic
criteria, then the general categorization is that the Aspie’s friendshipping
abilities are “[in]appropriate to developmental level.” It’s a subjective,
fuzzy measurement, but significant nonetheless.
FIRST DIAGNOSTIC CRITERIA 99

Implications and solutions: Peer relationships


“Failure to develop peer relationships appropriate to devel-
opmental level”
Some Aspies may not be able to pretend well enough to make and maintain
a real friendship. They may want a friendship or notice a need for a friend-
ship, but they can’t dance fast enough to make a friend or maintain that
friend over time. It’s possible that you are your partner’s first true,
long-term friend.
What if you are the first real friend? From what I have read and
observed, the first long-term friendship is the learning friendship, where
the children learn what to do and what not to do while maintaining their
play together. Observe young children at play to see the nascent friendship
skills emerge. The two children make all sorts of mistakes within their
developing friendship until they learn enough lessons to survive each
other’s company. One will take the other’s toy, say something mean, or pull
the other’s pigtails. A reaction is solicited and both children fight until they
find a common ground. Watching two children form their first friendship
is akin to watching puppies rumbling and tumbling together. They tug on
each other, make each other mad and (usually) forgive quickly and get
back to playing.
If you are your AS partner’s first long-term friend, you may find both
you and your partner are constantly at odds. Perhaps it may help to recog-
nize the differential between you two; you have probably had a hundred
gratifying friendships over the years while your partner has had none. Your
partner is at a distinct disadvantage.
Why is friendship so important in a marriage? Because the rules of
friendship provide a phenomenally solid foundation for a marriage. Unless
the Aspie has learned and practiced the rules of friendship, he can’t be
expected to know them naturally, especially in a relationship as complex as
a marriage. As a child, the rules of friendship are: “Don’t take other’s toys,”
“Don’t hit,” “Share secrets,” and other sorts of simple friendship rules that
you learned in your backyard, on the playground, and during sleepovers.
The same rules apply for marriage, but on a much more sophisticated level:
“Respect privacy and personal space,” “Comfort her when she is hurt,”
“Share your deepest thoughts and aspirations,” etc. These rules are decid-
100 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

edly more complex than they appear to be, especially for someone whose
main source of confusion is interpersonal relations.
The starting point appears to be recognition of the friendshipping dif-
ferential between you and your partner – only then can appropriate com-
pensation strategies be applied. Typically, Aspies respond well to reason-
able, logical, clear, and consistent rules (Asperger 1944, p.58). Lay out the
rules of the relationship and you may have conquered a significant portion
of your marital problems. For example:
I told him [AS], “In this marriage we do not hit. You hit me once, even a
tap, and I divorce you immediately.” He hasn’t hit me since.
Or, a less severe example:
She [AS] doesn’t talk to me unless I initiate the conversation, so I told
her that she needs to tell me at least three things about her day before we
go to bed at night. I don’t care what she tells me about, as long as I feel
like she’s making an effort to connect.
This book can only give a glimpse into the complexity and depth of
friendshipping skills needed to maintain a healthy adult relationship. I
have one simple solution that works for us: when I can identify that the
current problem between my husband and me is due to a lack of under-
standing about the basic rules of friendship, then I take a step back,
remember what it was like on the playground and say, “Honey, you’re
pulling my pigtails again.” I grin, he grins, and the root of the problem is
recognized.
BULLYING/TEASING
A bully is someone who:
• shows malicious intent in either words or actions
• is more powerful than the victim
• hurts the victim, whether it is felt immediately or not.
Aspies are more likely than any other children to be bullied in their
younger years (Tantam 2000, p.393). Why? Because they miss the social
cues that lead up to the bullying. They don’t know how to deflect the
teasing and may unwittingly inflame the situation. On all fronts, the Aspie
is an easy target:
FIRST DIAGNOSTIC CRITERIA 101

It is very important to stress that although individuals with AS


often present with maladaptive and disruptive behaviors in social
settings, these are often a result of their narrow and overly concrete
understanding of social phenomena, and the resultant overwhelm-
ing puzzlement they experience when required to meet the
demands of interpersonal life. Therefore, the social problems
exhibited by individuals with AS should be addressed in the
context of a thoughtful and comprehensive intervention needed
to address their social disability…rather than punishable, willful
behavior deserving…reprimands that in fact mean very little to
them, and only exacerbate their already poor self-esteem.
Klin and Volkmar in “The case of the ‘perfect misplacement’”

What does bullying do to the Aspie? The Aspie may become distrusting of
other people. Without the ability to escape the bullying, the Aspie learns
that others act irrationally, cruelly, and without respect. The Aspie either
lashes out or retreats. This behavior may become so frequent and the
distrust so widespread that the Aspie becomes suspicious and fearful of
people in general (Aston 2001, p.41).
Bullies can smell fear. They are drawn to victims who are alone, on the
social periphery – Aspies. The adult Aspie may find bullies in managerial
positions at work, as colleagues, or as neighbors. The more sophisticated
adult bullying can be verbal, physical, or written, appearing as gossip,
setting someone up, excluding someone, making personal information
public, or as direct, cutting comments.
It may be helpful for your Aspie partner to pick up a copy of the book
Adult Bullying: Perpetrators and Victims by Peter Randell (1997) and study
the bullying phenomenon from a safe armchair. Being able to objectively
study bullying behavior may give your Aspie partner the background
knowledge he needs to stand up for himself or otherwise put an end to
bullying behavior he may be experiencing at work or elsewhere. In our
experience, my Aspie husband cannot read these books himself – the
information is too raw and personal to see visually. Instead, I read the
books when I have time and I sift out the important information for him.
My Aspie husband was also the perfect victim, but he managed to learn
and even master some of the most important avoidance techniques. His
most successful technique was to align himself with one of the popular
102 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

kids who wouldn’t force him into the spotlight, but would allow him
entrance into the safe periphery of the crowd of accepted people. As long
as he had good alliances within the social sphere of the school, he was rel-
atively safe. He also developed a type of persona that faked bullies into
believing he was more able than he really was. Despite my husband’s best
techniques, he still didn’t escape episodes of bullying. To this day, his only
nightmare is “the bully nightmare” where he is running away from the big,
bad bully but never quite escaping. In his chosen profession, he still con-
sciously aligns himself with the “protectors,” i.e. the people who will
respect and shelter him.
According to the literature, it’s highly likely that your AS partner has
also experienced bullying growing up (Bashe and Kirby 2001,
pp.338–41). It seems to come with the diagnosis and is an unfortunate part
of Aspie life. Because your partner has experienced bullying, he may be
hypersensitive to it. For example:
No matter what I say, no matter what I do, he thinks that I’m attacking
him. Even a polite little comment is a “stab.” He says it’s like I’m
stabbing him with a dagger. How can “please take out the trash” be an
attack?
One gift you can give your Aspie partner is the vocabulary to help you
recognize anything that may bring up memories or feelings associated
with bullying. Perhaps phrases such as “I need you to stop” or “That hurts”
can signal that old, familiar feelings are welling up. You probably won’t be
able to see when your partner is feeling bullied and probably won’t be able
to see when he’s withdrawing from you. You also won’t be able to identify
the bullying since, to your ears, your comments sound like neutral remarks.
For example:
My wife [AS] is hypersensitive to the Nth degree about teasing. She
thinks I’m the world’s biggest teaser and I think she’s hypersensitive.
One day, we decided that she would tell me directly when she felt
teased. For the next few days, she said, “Stop teasing me” at least 20
times a day, several times an hour. Nearly everything I said sounded like
a tease to her. No wonder she was defensive! I slowly eliminated most of
the teasing, but she still interpreted my comments as teasing. We talked
about it and she was finally able to see that I was just being funny and
light-hearted. I changed my speech; she changed her attitude.
FIRST DIAGNOSTIC CRITERIA 103

Developing a defensive nature appears to be a common side effect of


Aspieness. As an AS counselor explains: “The bullying was probably quite
severe, and so, as an adult, he may be very sensitive to any form of per-
ceived ridicule or put-down, especially from you. This could instantly
anger him and he may react to the situation as if he were suddenly back on
the playground, placing you on the outside, as a foe” (Aston 2001, p.41).
The defensiveness grows in the fertile soil of an Aspie who has no
language or skills to act as armor against the bully. For example:
One time my husband [AS] opened up to me about the bullies he had
dealt with in his high school days. They sounded horrific. They blind-
folded him and made him do embarrassing things, took his clothes
while he was in gym, taped him to the flag pole, everything. After he
finished explaining to me some of the horrible things they did, I asked
him how he responded to it. (I know that I would have done something
about it. I would have sought protection.) He looked confused and said,
“What do you mean?” Apparently, he never thought to get help. It all
just compounded inside him so that now he’s permanently on the
defensive, always on the lookout for anything that even vaguely resem-
bles bully-like behavior. He’s paranoid about it.
Defensiveness may be on overdrive from a lifetime of believing that others
are out to get him, trick him, tease him, make fun of him, and make him
look stupid. The defensiveness comes from “a lack of an insider’s view into
the surrounding social world [which] makes that world quite inaccessible
and sometimes hostile” (Klin, Volkmar and Sparrow 2000, p.10). Bullying
makes a permanent impression on a child and the impression may not only
be remembered, but may greatly affect his personality and future life
choices.
There’s also a possibility that your AS partner, in an effort to master
this aspect of human interaction, has become a teaser or bully himself. He
may fall into the natural human tendency to work towards imitating
human behaviors he sees around him in an effort to master a behavior that
he may perceive as acceptable. He may not realize that teasing is not a
behavior that should be imitated. If an Aspie does attempt to master the
skill of teasing and bullying, it may be done poorly, on an immature, child-
like level. For example:
104 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

My husband [AS] tries to tease me, but it comes out as a juvenile jab. It
reminds me so much of fourth grade that I just laugh… If he were good
at teasing it would hurt, but he’s not.
There is a possibility that in his naive social innocence, he may be led to
believe that bullying is an acceptable behavior and that the bigger, cooler
kids do it. He may have actually missed the point that bullying is an inten-
tionally hurtful act. As you and your partner try to end the cycle of teasing
and hurt, you may run into a circular argument of “That hurts my feelings”
and “Why? I didn’t mean to hurt your feelings.” Due to theory of mind
issues, your AS partner may not understand the difference in intent. If your
AS partner tries to tease or bully you, it may be helpful to look at the logic
and reasoning behind it to see why your partner is doing something that
appears, in the NT realm, to be purposefully hurtful.
BONDING
This particular section of the diagnosis explores the “failure to develop
peer relationships.” Common sense dictates: if my Aspie partner never
learned to develop deep, meaningful relationships with a friend in the past,
how could he develop one now, in his adult years, especially within the
bonds of a relationship so highly emotive as a marriage? You may find
moments in your life together that are reminiscent of children or awkward
teenagers, learning how to interact with each other. One woman explains:
It’s like we’re starting from scratch. He’s learning the basics of making a
friendship. I’ve been his “first” in so many areas… I’m his first real
friend.
Although my husband and I were able to form a friendship, I often worried
that he wasn’t as bonded to me as married couples should be. I thought of
bonding as an emotional connection and an intricate union that linked us
together as one. I looked at other couples for this role model and our
marriage didn’t seem to fit. This notion came from the lack of communica-
tion that to my NT mind indicated commitment.
His way of experiencing life together with me was on a different level.
I began to see what this was like for him when I read the following: “Once
a child realizes that people have their own minds – containing unique
thoughts, impressions and viewpoints – he understands that sharing
physical proximity is not the same as sharing his experiences with them”
FIRST DIAGNOSTIC CRITERIA 105

(Gutstein 2000, p.28). Perhaps my husband sees commitment as just


“being there” and sharing a house. He doesn’t show his commitment
through words. He shows it through actions. Perhaps our different forms
of dedication to each other balance out.
Perhaps Aspies experience bonding in a different sort of way than NTs
do. For NTs, bonding in a marriage or long-term relationship means shared
experiences, shared insights, and soft, tender moments that are remem-
bered for a lifetime. Perhaps your AS partner sees bonding differently.
In my own experience, I also found that my spouse was extremely
committed to our relationship. Many times, I have been ready to throw in
the towel, call it quits, and give up on it all. Every time, I have been pleas-
antly surprised to find that he is far more dedicated to the marriage than I
have ever been. Experts often say that Aspies tend to be extremely loyal
and I found that to be true. I found that he has bonded to me in his Aspie
way, not in the normal, recognizable way, but in his own Aspie way that I
will probably still be seeking to understand when I’m an old lady.

What it may look like: Sharing enjoyment


“A lack of spontaneous seeking to share enjoyment…”
Before we delve into the different types of non-sharing, let’s look at the
overall, “lack of spontaneous… [sharing].” This particular lack creates a
sneaky little path to the defensiveness that we find is a prevalent emotion
for Aspies.
NTs tend to point out objects of interest: “Hey, did you see that guy
with the green hair?” or “Did you see how slowly that car is driving?” The
AS partner may or may not spontaneously share observations such as this.
If the NT partner points out objects of interest and the AS partner does not
point out objects of interest, there is a significant discrepancy. For example,
if the AS partner and the NT partner attend a festival and the AS partner is
quiet all day while the NT partner talks about what she sees and hears, the
day will end with an amazingly long one-sided conversation still hanging
in the air. One-sided conversations may or may not be all that bad, but
what if resentment starts to sink in? From the NT partner’s point of view, it
106 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

has been an emotionally blank day with little to no contribution from the
AS partner.
Why speak unless something needs to be said?
Adult Aspie

From an AS partner’s point of view, the NT partner has babbled all day
long. Some Aspies find it enjoyable to have a verbal partner; some don’t.
Some Aspies hear the chattering as unnecessary and sometimes insulting.
On a deeply subconscious level they may be thinking, “Duh, I can see that
the sky is clear today. Do you think I’m blind?” They see no need to state
the obvious. They may receive no pleasure from the mere act of speaking
and responding. To them, spontaneously sharing an observation may
appear as an attack on their intelligence.
See how this simple trait can affect relationships? This sneaky little
discrepancy may push us down the path which leads directly to the divorce
lawyer’s office.

Implications and solutions: Sharing enjoyment


“A lack of spontaneous seeking to share enjoyment…”
There are three things that an Aspie may not share spontaneously. The first
one listed in the portion of the diagnostic criteria is “enjoyment.” Here are
a few examples:
Every Sunday night, we go on a walk as a family. My children point out
the bugs on the sidewalk, the birds in the sky, and the warmth of the
breeze. I chatter about the fun things we did during the day, what I’d
like to do tomorrow, and what I’d like to make for dinner. My husband
[AS] walks in silence. For some reason, he doesn’t share anything unless
he is asked a direct question.
Or:
Since we both work, we take turns making dinner. I always call every-
body to the table when dinner is ready. When she [AS] makes dinner, she
will sometimes just sit down and eat, forgetting to share it with the rest
of the family. We’ll wander in and she’ll remember the script that says
FIRST DIAGNOSTIC CRITERIA 107

“Call everybody to dinner when it is ready.” It just doesn’t come natu-


rally to her to think of sharing it with us.
Or:
Sometimes I wish he [AS] would talk with me about what he likes, the
pleasures of his day, but he doesn’t. He answers my questions, but he
doesn’t instinctively share.
If the AS partner does not spontaneously share, the NT partner can easily
misinterpret the lack of sharing as a lack of caring. For example:
I am always telling him [AS] about my day but he never responds in
kind. I often wonder if he cares enough about me to let me into his
world a bit. How hard is it to say what you did during the day?
There may also be the assumption that if an Aspie doesn’t spontaneously
share, there is no enjoyment. The NT logic goes like this – without
verbalizing or otherwise giving recognition to the enjoyment, there is no
enjoyment. Yet Aspies don’t conform to this logic. They do experience a
range of enjoyment – it is simply different. For example:
When he [AS] makes dinner, we all compliment him on how wonderful
it tastes and we make a big deal over him having cooked for us. When I
make dinner, he just eats it and the kids follow suit. I know he enjoys it
because when I ask him directly, he’ll tell me exactly how well he liked
it, but he won’t offer a compliment and he doesn’t understand why he
should.
Or:
Every now and then I make an attempt to please him, but he rarely ever
gives me any reaction as to whether he likes it or not. How am I
supposed to know if he appreciates my efforts?
Solutions? It seems obvious: Ask. Ask your partner, “Did you like dinner?,”
“Did you like the movie?,” “Did you enjoy the walk?” Blatant honesty is a
common Aspie trait (Attwood 1998, p.32). Accessing the truth may be as
simple as asking straightforward questions, then encouraging your partner
to expand on the one-word answers.
SEX
Although sex is a delicate and controversial topic, it must at least be
mentioned in a book about long-term relationships. None of the AS
108 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

diagnostic scales discuss matters of sexuality, but an awareness of the AS


traits (sensory dysfunction, emotional issues, etc.) may enlighten us in our
own relations with our AS partners. Comments about sex in an AS-linked
relationship can range from:
The rest of our lives are falling apart, but our sex life is fantastic.
To:
We haven’t been physically intimate in years. He [AS] doesn’t like it
when I touch him. I can’t even remember how long it has been since the
last time.
The variety is enormous and no generalizations can be drawn, but an
awareness of AS traits may lead us to a personalized understanding of why
our Aspie partner perceives sex in the particular way he does. For example,
if an Aspie doesn’t read body language or value the illogical emotional
aspects, then the act of sex may be more utilitarian to him. He may com-
pletely miss the romantic aspects of the act. For example:
Whenever I tell him [AS] that I am too tired for an “encounter,” he tries
to convince me that I don’t need to do anything. He says, “You can even
go to sleep,” as if that would make it easier. Usually I’m too tired to
explain to him why this reasoning makes me sick to my stomach.
There is also the tendency to view sex as a disconnected act, as something
that is entirely separate from other events of the day. This is due to “weak
central coherence” (not seeing things as interconnected) and a tendency to
misunderstand body language. A common example:
Non-AS female: Angry over comment or action from earlier in the day.
AS male: Initiating sex but not getting anywhere and not understanding
why.
If the non-AS partner sees life as interconnected, then issues from earlier in
the day will carry over into the bedroom. If the Aspie partner sees portions
of the day as disconnected, he will see sex as an entirely separate act and
may not even respond to explanations or reasoning (NT reasoning) why
one issue affects another.
A solid understanding of how your partner presents the various AS
traits will most likely help you understand and solve potential problems
related to this vital area of a long-term relationship. Of course, this is an
FIRST DIAGNOSTIC CRITERIA 109

issue that is most appropriately dealt with through a doctor, therapist,


counselor, or other AS-aware professional if help is needed.
BABIES
For an Aspie whose difficulties lie in strict routines, bonding with others,
and sensory difficulties, a baby may be an unwelcome addition. A baby can
be a highly emotional and unpredictable little bundle. Your partner may
respond to the birth of a baby inappropriately:
I was in labor… He [AS] dropped me off at the hospital and told me to
call him when I wanted to be picked up.
Or:
While I was giving birth, he [AS] talked with the doctor about sports
scores and wouldn’t stop talking about it even though the doctor told
him to shut up.
Or:
At least he [AS] stayed for the birth, but I doubt he’ll ever stop telling me
how disgusting it was (the blood, the meconium, the afterbirth, etc.).
If we try to minimize the difficulties related to AS factors, it may be worth
the effort. One woman explains how she restructured the experience as
much as possible to allow her AS husband to be physically and emotion-
ally present at the birth:
The birth of our first child was horrible because we were still unaware of
my husband’s AS. I didn’t know better and scheduled the birth for a
large hospital and allowed family and friends to come. My husband was
a detached outsider, extremely uncomfortable, and was on maximum
overload the entire time. For the birth of our second child, I knew better.
I went to a small hospital, scheduled us for late at night when the
hospital would be dark and quiet (they made an exception for us based
on my husband’s disability). Only my husband and I went. We didn’t
inform anyone else except the babysitter that we were leaving for
delivery, so no one could possibly come visit us. For good measure, we
also told the nurse to disallow visitors under any circumstances. The
birth was quiet (I had asked for extra painkillers) and my husband was
gently at my side the entire time. In the dim quiet of our room, he was
able to keep the overload at bay and experience the birth with me. When
he saw his son being born, he was open to the impact of the miracle of
birth. He cried (I had never seen him cry before). It was the beautiful
110 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

experience that I’d always dreamed of and we had it because we struc-


tured it around our understanding of his AS needs.
Of course, the birthing experience is a highly unpredictable event and you
may prefer to rely on the back-up support of a doula, midwife, etc. As in
other aspects of adult life, we can make as many accommodations as
possible that allow both partners to enjoy the experience.
CHILDREN
Sometimes AS parents bond beautifully with their children and sometimes
they don’t. Here’s our own personal example of an AS parent bonding
with his children:
When he [AS] comes home after a long day of work, he wrestles with
the kids. He lets them climb all over him and he particularly loves it
when they dog pile on top of him (deep body pressure). He plays games
on the computer with them for hours on end. My husband’s face is
usually expressionless, except for when he sees the kids. Of course, he
didn’t naturally do this on his own. It took many years of tentative trials,
failed attempts, and worthless arguments. We both worked diligently to
find ways around the big problems such as noise level, touching, and
energy level.
I suspect that without intense efforts from all parties, the AS parent may
have a difficult time bonding with children. For example:
Nope. He [AS] doesn’t have any sort of working relationship with the
kids. They don’t talk and they don’t do anything together. They’ll sit at
the same table for dinner and, of course, we all share the same house, but
that’s it.
Or:
I don’t think he has ever actually played with the children.
Or:
I see other dads have such a natural, carefree relationship with their kids.
They hoist their toddler on their shoulders, give piggyback rides, talk,
and play. My husband’s [AS] relationship with the children seems stilted
and practiced, almost staged.
Researchers have noted that “imaginative pretend play is noticeably
absent” in people with AS (Frith 1991, p.3). Perhaps this is a big strike
against the AS parent. To bond with a newborn, a parent must spontane-
FIRST DIAGNOSTIC CRITERIA 111

ously talk with the baby, pretending the baby can talk back in order to
keep the conversation going. To bond with a toddler, the parent must
pretend that inanimate objects have live properties, e.g. a puppet can talk.
To bond with a school-age child, the parent must put into motion a whim-
sical sort of imagination that can soar through the solar system and dig for
dinosaur bones. To bond with an older child, the parent must have a more
sophisticated level of imagination that can enter into the capricious emo-
tional life of a teenager. Without the ability to pretend play, the Aspie
parent may be at a distinct disadvantage.
As with nearly all other Aspie traits, there are ways to train a person
how to play with children by providing scripts, guides, instructions, etc. In
some situations it may prove impossible if the problems run too deep. In
more optimistic situations, there’s a chance that a child is the perfect
impetus that helps your Aspie partner grow into a stronger individual. We
have found that our children are my husband’s best therapy.
I was thrilled to read Digby Tantam’s work ‘Adolescence and Adult-
hood of Individuals with AS’ (2000). The best part can be found in the
closing paragraph, as with a cherry on the top of a proverbial sundae.
Others may have stated it before, but this was the first time I had read that
being in a long-term adult relationship with a friend/partner may be good
for my Aspie husband:
The primary impairment in AS does not seem to worsen and may
improve…greater expressiveness over the years…growing
intersubjectivity and empathy…social contact with peers was
associated with good prognosis…a long-standing sexual relation-
ship does reduce impairment. The key element may be the social
demand that is associated with peer interaction: Peers do not make
explicit demands, but they also make few allowances. (p.397)
The children and I are my husband’s peers. We are the ones he talks with
and interacts with. We are the ones who “make few allowances.” Digby
Tantam’s insights have helped me take some personal joy in my husband’s
successes; we may have contributed to a better prognosis for him as we
encouraged him through his occupational difficulties, sensory obstacles
and – in my view the most important issue – his responsibilities as a parent.
I believe the first step in encouraging Aspie parenting is to be extraor-
dinarily cautious not to correct, put down, or otherwise reject the Aspie
parent’s attempts until we fully understand the AS dimension of the situa-
112 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

tion. The following personal story explains how a simple observation can
hinder or even halt the delicate bonding process:

When my husband first started wrestling with the kids, I videotaped


them playing because they were so funny. They went at it with all their
energy, throwing each other around, struggling against each other, and
otherwise pushing, pulling, and twisting. As I videotaped, I noticed that
my husband gave up quickly and lay relatively still, taking their blows,
always at the bottom, receiving the bulk of the impact. I worried that
the kids were learning to hit their dad and I was standing by encourag-
ing it. I presented my concerns to my husband and he couldn’t explain
why he encouraged the wrestling to become one-sided, but he made a
token effort to balance it out. Within a few days, he stopped initiating
contact with the kids. My small comment was perceived as criticism and
shut down the father/child bonding process.
After I read Temple Grandin’s (1986, 1995) books and learned
about the calming effect of deep body pressure, I looked back at the
home videos. My husband was so happy when the kids dog-piled on
top of him! He was always in a more good-natured, relaxed, and
peaceful mood after the wrestling. I explained to him that what was
occurring was a biological, physical reaction to deep body pressure and
that his Aspie children probably needed it too. This was the logical ex-
planation he needed. Now they take turns in one rolling dog-pile that
looks like big puppies at play.

You could also encourage a relationship between your AS partner and your
children by providing visuals. One wife explains how she encouraged the
bond:
I did all sorts of gentle encouragements with him at home to show him
how to relate to the kids, how to talk with them, how to care for them,
coping skills, etc. but one of the best things I ever did was to make a
Daddy Book “for the kids” (it was really for my husband’s benefit). I
took a few dozen photos of him with the kids and put them together in
a little 20-page book with captions like: Daddy takes us to the movies;
Daddy plays with us; Daddy puts us to bed at night; Daddy shows us
how things work. He read the Daddy Book to the kids and they loved it
but he showed only a mild interest in it. (What did I expect? A gushy
“Oh how cute!” reaction from him? I don’t think so!) He read it to the
kids every time they asked for it and it gave my husband the visual
images he needed to see that he is their dad and to see that he does things
FIRST DIAGNOSTIC CRITERIA 113

for his kids even though at the time it wasn’t much. I had to be quick
with the camera. I was so proud of myself. I took the small seed of par-
enthood and planted it. Now it has grown into a loving relationship
with his children who are about to enter their teen years… My husband
has grown into a stronger man and our children have a father in the
home.
As you encourage your partner to develop as a better parent, you’ll want to
consider his parenting abilities within the framework of AS. What does an
Aspie typically respond to best? Logic. Children are rarely logical creatures
(thus the parenting difficulties for an Aspie), but techniques and strategies
for effective parenting can be explained in a linear, logical fashion that will
provide a solid lead-in for Aspie parenting. Books such as Parenting with
Love and Logic by Foster Cline and Jim Fay (1990) may provide your AS
partner with the foundation knowledge he needs to begin the journey as
an active parent. Your partner may also benefit from prepackaged
parenting strategies that won’t require him to mindread his child. Books
such as Teaching Your Children Responsibility (1982), along with others in the
series by Richard and Jane Eyre, may provide your Aspie partner the unam-
biguous strategies and explicit details he needs.

What it may look like: Sharing interests


“A lack of spontaneous seeking to share…interests…with
other people”
It is the mind which creates the world about us, and even though
we stand side by side in the same meadow, my eyes will never see
what is beheld by yours, my heart will never stir to the emotions
with which yours is touched.
George Gissing, The Private Papers of Henry Ryecraft

Let’s see what it looks like when someone doesn’t share interests spontane-
ously:
Normally, when I’m walking down the street with a friend, we chat
about what we did last night, what we’ve been reading lately, or how
things are going at work. We share our interests and our experiences.
When I walk with my husband [AS], we are silent. Sometimes I’ll share
114 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

something interesting with him and he’ll always respond pleasantly,


but the conversation soon dies out.
Another example:
He [AS] so rarely shares his insights into the world that I often assume
that he feels no pleasure, no interest, and no satisfaction in his life or in
the people around him.
I believe our understanding of this particular aspect of AS lies in what is
called “instrumental” interaction. In the second chapter of his book
Autism/Asperger’s: Solving the Relationship Puzzle, Steven Gutstein (2000)
outlines the differences between instrumental interaction, i.e. connecting
with someone in order to gain a specific objective, and experience sharing,
i.e. connecting with someone for the emotive benefits of human interac-
tion (pp.7–11). Instrumental interactions are the necessary, common
exchanges that keep the gears churning in everyday life. The following
examples describe instrumental interactions:
He [AS] knows that if he cleans the dishes, then I will leave him alone
for the night. He does them to get me off his back, not because he
believes that doing dishes is part of his contribution to running the
household or to please me.
Or:
I can’t always tell, but I think she [AS] participates in sex only for the
sake of the act itself. There doesn’t seem to be an emotional connection.
It seems to be a physical, medical need rather than the hugging, talking
type of closeness that my previous girlfriends enjoyed.
Or:
He [AS] buys me chocolates and flowers every Valentine’s Day, but it’s
so strange. He doesn’t seem to notice that I enjoy them. One year I told
him that “Husbands buy chocolates and flowers for their wives on Val-
entine’s Day.” He took it as a rule and doesn’t seem to notice my reaction
to them.
There are many motivations behind people’s actions, but an action is con-
sidered instrumental if it fits the five criteria Gutstein (2000) outlines: the
end result is predictable, the partner is not necessary to achieving the goal,
the partner is interchangeable, there are scripts for the interaction, and
emotional communication is not necessary to achieve the goal (p.9).
FIRST DIAGNOSTIC CRITERIA 115

The third criterion struck me the hardest: that the partner is inter-
changeable. Perhaps this is why some partners of Aspies wonder, “Does my
partner really need me? Or does he just need someone? A warm body?
Would he notice if I left?” Perhaps the level of interaction between the two
partners occurs on an instrumental level for such a large portion of the day
that the essence of the “interchangeability of partners” begins to seep in on
a subconscious level.
All of us engage in instrumental interactions throughout the day.
Problems arise when the Aspie experiences life only on an instrumental
level. There is a whole other level of interaction – experience sharing is
intentionally interacting with another human being for the sake of inter-
acting, for the sheer joy of social human contact. I doubt that many Aspies
would equate the word “joy” with “social human contact.” Let’s look into
what excessive or exclusive instrumental interaction does to a relationship.

Implications and solutions: Sharing interests


“A lack of spontaneous seeking to share…interests…with
other people”
When you don’t share interests spontaneously and freely with another
person, it appears as a deficiency in the relationship. I quickly overlooked
this trait, realizing that, yes, my husband does not spontaneously share his
interests, but that I didn’t necessarily need such sharing. Here’s an early
marriage journal entry when I realized that he wasn’t sharing spontane-
ously with me:
It seems like I have to dig for information. I have to dig, prod, and pry,
asking just the right question in order to get any information out of him.
Sure, he’ll give me relevant, timely information, but anything that isn’t
immediately necessary is deemed pointless.
A few years later, I convinced myself that I didn’t need him to share with
me spontaneously:
He still doesn’t initiate talking with me, but it doesn’t really matter
anymore. We don’t have much time to talk and, when we do have a spare
minute, we’re too busy discussing kids, money, or emergencies.
116 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

During the busier times in life, casual communication skills didn’t seem
important, but in the back of my mind was a nagging little voice: “You’ll
want him to learn this now, so that when you’re older, you’ll be able to
enjoy each other’s company.” Even though I didn’t have time to think
about, or even care about, our more frivolous communications, I looked at
it as an insurance policy for our future marital happiness. I kept looking for
ways to open up channels of communication between us. Whether by luck
or persistence on both our parts, he began communicating for the sake of
communicating. A relatively recent journal entry explains:
Lately, I’ve been telling him specifically what I need to know about. I
can’t say, “Talk to me.” Instead I have been saying, “Please tell me what
you did at work today” (he can almost always talk about this) or “Did
you hear anything interesting on the news?” Somehow, somewhere
along the line he finally got the idea that frivolous chitchat can be fun.
He’ll say, “Guess what?” or “Wanna hear something?” He is spontaneously
sharing, unprompted and unrehearsed.
I knew that my better half had finally tasted the joys of experience sharing
when he started making comments such as “I miss talking with you” and
“Let’s spend some time together.” He had come to feel the sweet pleasures
of interacting with someone. He didn’t have a specific goal in mind and he
wanted to speak with me, not just anyone.
This particular diagnostic trait, lack of sharing interests, may appear to
be a small, frivolous issue but it is the problem that, if unaddressed, leads
quickly to a depressing sense of isolation that is common among partners
of Aspies. A large portion of the human experience consists in our sharing
with others:
Memories of shared experiences with a particular person greatly
enhance the pleasure of Experience Sharing. Our relationships are
strengthened by the perception of a shared past and potential common
future. In addition, we learn that partners who are aware of each other’s
unique ways of relating have an easier time maintaining the relation-
ship. (Gutstein 2000, p.9)
Without spontaneously sharing parts of our lives with each other, one or
both partners can sense that they are very much alone in the relationship.
One woman married to an AS husband summed it up as:
It’s not the easiest marriage. Rather lonely…
FIRST DIAGNOSTIC CRITERIA 117

ISOLATION
Solitude vivifies; isolation kills.
Joseph Roux, Meditations of a Parish Priest

Why is it so common for the non-AS partner to feel isolated? I believe that,
in an AS-linked relationship, isolation comes from various sources, provid-
ing a multi-pronged attack on our sense of social inclusion.
The diagnostic criteria show us the first reason for isolation … lack of
sharing. When the most significant relationship in your life is enveloped in
a silent shell of non-sharing, you may begin to feel emotionally alone, not
only in your marital relationship, but in the entire scope of your life. A
person’s relationship with a significant other tends to set the tone for the
household, work life, family life, and so many other areas. The sense of
loneliness between you and your partner may spread to feeling isolated in
general.
Second, your Aspie partner probably needs far less social contact than
you do and may even be “aggressive in ensuring [his] solitude” (Attwood
1998, p.31). For example, he may have a few hours of social communica-
tion during the day and consider it more than enough. You may wish for a
full day’s worth of social contact. The differential may cause problems as
you match your partner’s social needs and drop your own. You may find
yourself with fewer friends than you need in order to stay emotionally
healthy.
Third, on a functional level, your Aspie partner may actually require a
socially toned-down environment to keep sensory issues at bay. You may
find it nearly impossible to invite friends over for dinner, have social
evenings in your own home, or otherwise bring social experiences into
your life.
Finally, your Aspie partner may naturally gravitate toward more
solitary, isolated activities, as these are the most familiar and most enjoy-
able for him. For example, he may prefer to spend the day at the library
rather than go to an event. He may prefer to stay home for lunch rather
than have a picnic with friends.
When you recognize the problems for what they are – a difference in
levels of needed socialization – you’re on your way to finding solutions.
Without the realization of the root causes of the isolation, you may be
118 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

flooded with resentment so deep and so pervasive that you can only see the
dark loneliness around you.
Even with the realization of root causes, you may still have a voice in
the back of your mind saying, “Why?” Why does my Aspie partner need so
much less social interaction than I do? As a counselor for AS couples
explains: “They seem to have never had any friends, and do not appear to
have really needed any” (Aston 2001, p.21). People with AS don’t have the
strong pull that NTs do to socialize and mingle with others. Your partner
may not be getting the satisfaction you do from social interaction. No
wonder he doesn’t enjoy it – it must be similar to eating without tasting.
INTENTIONAL HURT
Over and over again I read in the literature that, despite appearances,
Aspies don’t intend to inflict hurt on others. I latched onto an Aspie motto
from Liane Holliday Willey (2001), “I would never intentionally hurt any
person I care about. I do not think any decent person would” (p.91).
There are a few ground rules that should never be broken. One of them
is intentionally hurting your partner. If you and your partner are intention-
ally hurting each other then you probably knew a long time ago that your
marriage was doomed – you’re just getting up your courage to get out. But
beware! A telltale sign of someone with AS is that he appears to be hurting
you when it is completely unintentional. As Uta Frith (1991) stated,
“Hurting another person’s feelings is a behaviour [sic] that presupposes an
active theory of mind, something which autistic people conspicuously
lack” (p.25). It is possible that your partner is cognitively incapable of
hurting you intentionally. Ironically, he may have learned enough NT
behavior to make his actions appear obviously intentional. The very
behaviors he thought would help him survive in the everyday world are
the behaviors that may prohibit long-term intimate relations.
One wife came to an awareness of the importance of weighing
intentionality over appearance:
FIRST DIAGNOSTIC CRITERIA 119

My husband is on the severe side of the Asperger spectrum. People


quickly comment, “What’s wrong with him?” My husband can’t hide it
like other AS people can. We’ve found little in the way of support and
no one has been able to address our marital problems. There are so many
issues that counselors and doctors don’t understand.
The most troublesome problem is how he hurts me; he says horrible
things to me, he ignores me, he embarrasses me in public, he shows little
to no affection unless I tell him exactly what to do. My marriage has
been a painful ordeal.
One Sunday several years ago, I took off in the car, promising
myself I’d never go back to him. I spent the day wandering around a
lake near where we lived. I finally came up with the one all-encompass-
ing question I needed him to answer once and for all: do you want to
hurt me?
I went home and got my husband, and drove back to the lake. I took
him to a secluded spot and both of us sat down on two big rocks.
Although I know he can’t look at me while we’re talking, I gently made
sure that we were facing each other so at least he was facing my
direction. I asked him my question slowly and directly, “I need to know:
do you want to hurt me?” He looked at me with a scared and confused
expression and said, “Of course not!” I started to cry; he started to cry. It
was the turn-around moment in our marriage.
Now, when he says something horrible, I say, “That hurt me. Please
say it differently.” Often he’ll ask why it was hurtful and he’ll even ask
me what to say specifically. It has become a learning process.

This wife needed to clarify her own personal ground rule: “We will never
hurt each other intentionally.” Once she recognized and verbalized the
ground rules, she was able to respond to her husband cognitively instead
of emotionally, a strategy that works well with individuals who have AS
(Asperger 1944, p.47 in Frith 1991). In the past, she responded to his
hurtful comments as most people would – by being emotionally hurt.
Once she understood that the emotional hurt was not intentional, she went
from emotional victim to a supportive partner for her husband, giving him
the life lessons he sincerely needed in interpersonal relations.
120 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

What it may look like: Sharing achievements


“A lack of spontaneous seeking to share… achievements with
other people”
There is a certain part of the German folk song “Edelweiss” that strikes a
chord for our little family:
Blossom of snow may you bloom and grow…
The flower edelweiss comes from the smallest speck of a seed that grows
under the snow in the Alps. The small seed produces vibrant, strong
flowers, even in the most frigid conditions.
My husband often comes across as cold. The first criterion of the diag-
nosis explains why: he doesn’t see any purpose in sharing his life with
others. His words (when we were younger): “Why would I tell you about
my day? It happened. So what?” His words and his actions were so cold
that I felt a polar chill in our home. As most newlyweds do, I hoped that he
had a little seed in his heart that could bloom into a loving relationship
between us. He could keep his snowy, chilly AS homeland. I wouldn’t
transplant him to my world … it would kill him. I felt that if I respected his
need to stay in his snowy homeland, he would “bloom and grow.” Sure
enough, he did.
If we were an NT/NT couple, we would probably share our achieve-
ments naturally, spontaneously sharing that he received a promotion and I
landed a new contract. We would see each other grow as adults and as pro-
fessionals. We wouldn’t have to make such a monumental effort to see the
blooming process.
If your AS partner fits this part of the diagnosis and doesn’t share his
achievements naturally, it may impact on your relationship. What does it
look like when a partner doesn’t share his achievements?
He [AS] will listen to me talk about my day, but he doesn’t share
anything about himself unless I ask him questions. It’s like a kid coming
home from school: the mother says, “What did you do at school today?”
to which the child says, “Nothing.”
FIRST DIAGNOSTIC CRITERIA 121

Implications and solutions: Sharing achievements


“A lack of spontaneous seeking to share…achievements with
other people”
If we are accustomed to people spontaneously sharing their achievements
with us, we expect it, assuming that if our partner doesn’t speak up, then
there is nothing to share. We may assume that his day has been uneventful
when in reality it was packed with small victories. The implications of this
lack of sharing are that we can’t recognize our partner’s strengths, accom-
plishments, and struggles if we don’t know about them. Without this infor-
mation, we may assume that our partner is lazy or boring.
Ironically, our Aspie partners have a huge undercurrent of achieve-
ments every day: surviving sensory overload, managing a conversation,
smiling at a crucial moment even though it feels horribly unnatural,
figuring out a new social rule, etc. Perhaps the undercurrent is too large to
contemplate. Here’s a personal example of what my Aspie husband used to
share at the end of the day:

Shares: Today was “fine.”


Reality: He went out to lunch with a group from work so he has
already had more than enough social contact for the day. He found out
that he might receive a significant bonus soon. One of his co-workers
pointed out a huge flaw in his work and he’ll need to work overtime for
the next few weeks to fix it. He has been feeling sick to his stomach and
may be getting the flu again. On the way home, he managed to avoid
hitting a deer (dyspraxia makes this quite a feat).

The difference between what your AS partner shares at the end of the day
and what really happened during the day may be big enough to cause sig-
nificant communication problems. With us, it eroded trust. I thought it dis-
honest for my husband to withhold significant information when, in
reality, he never thought to share it. This was one of those crucial areas
where an awareness of the AS diagnosis helped me see past my NT
knee-jerk reaction of distrust to the real issue of “a lack of seeking to share
achievements with other people.”
122 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

APPEARANCE OF WITHDRAWAL
The end result of all the different “Lack of sharing…” issues is that the
Aspie develops an appearance of withdrawal; he appears to have purpose-
fully distanced himself from others. Some may call the Aspie a loner,
outsider, outcast, or even a foreigner.
The appearance of withdrawal may be just that – an appearance. Aspies
typically want to be socially active (Attwood 1998, p.50) but don’t know
how to get into the inner circle of social acceptance, let alone survive in
that inner circle for long. Focusing on the withdrawal shifts our focus away
from our Aspie partner’s strengths and directs our focus to the negative
comparisons of how an Aspie falls short in the NT world.
When we see the appearance of withdrawal, it is vital that we
remember the causes. The causes are found in the diagnostic criteria and in
the AS literature. When we rely on our assumptions, we assume NT
reasoning that applies in the NT world. For example: if a person is
withdrawn, it is because he wants to be. He is capable of participating, but
chooses not to. What a horrible burden to carry! “If only I tried harder, I
could fit into the group and make lifelong friends…” Even the most con-
scientious Aspie may fall prey to these assumptions. The appearance of
withdrawal is only an appearance – an appearance based on the NT
yardstick of “normal” human behavior.

What it may look like: Social reciprocity


“Lack of social…reciprocity”
There are so many social rules that it makes my head spin to think about
them consciously. Here’s a sampling:
• If someone gives you a gift, you must return in kind.
• If someone smiles at you politely in passing, you must politely
smile back.
• If someone shares an appropriate secret with you, you should
share a similar secret.
• If someone is generous with you, you should be generous back
in an equivalent but not identical fashion.
FIRST DIAGNOSTIC CRITERIA 123

Determining what is appropriate in each situation is a matter of highly


sophisticated judgment. Let’s use the last example to see how intricate
social reciprocity can be. “If someone is generous with you, you should be
generous back in an equivalent but not identical fashion.” How? Why?
Let’s imagine that you were generous with your partner, making him an
extra special dinner on your anniversary night. You may, in the back of
your mind, wish that he would perform a similarly generous act sometime
in the next month or so. You may be surprised when your generosity is
appreciated but unreciprocated.

Implications and solutions: Social reciprocity


“Lack of social…reciprocity”
While there may be concrete, logical reasons for why your partner does not
reciprocate, it still may cause resentment in you. You may stop reciprocat-
ing entirely, causing even the potential of reciprocity in the relationship to
die. Or you may continue the one-way giving and entrench yourself in a
martyr complex. Or, as many others have done, you may leave.
There have to be solutions to this dilemma. The one most frequently
mentioned in the AS literature is to tell your partner exactly what you want.
Instead of wishing he would bring you roses for your birthday, tell him to
bring you roses for your birthday. If your relationship is still solid, he’ll
probably appreciate the suggestion. Take the guesswork out of difficult
social situations. By telling your partner what you need, you are in essence
teaching him what is appropriate. Maybe on your next birthday, he’ll auto-
matically bring you roses. Of course, they may be the exact same type of
roses for the next 25 years, but at least you’ll get what you originally
wanted, even if in excess.
Also realize that appropriate reciprocity is a common problem for all
couples, AS or not. We all tend to take each other for granted and not pitch
in as we should. Common problems can range from “I do all the house-
work” to “He never compliments me.” Here is one situation where compar-
ing your AS relationship to an NT relationship may actually be a good
idea. In an NT relationship, the partners may actually be uncaring and
insensitive, but at least your Aspie partner has a real excuse!
124 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

LEARNING UNIMPAIRED SOCIAL INTERACTION


Aspie children can be taught appropriate social interaction. One of the
most popular and successful methods currently being used to teach appro-
priate social interaction is called “social stories” as developed by Carol
Gray. The technique helps children read social situations and behave
appropriately. The child learns to identify four aspects of a given scenario:
descriptive (what people do), directive (desired response), perspective
(other’s perceptions of the story), and control (how to follow through on
the desired response). For young aspie children, the process of interpreting
social situations doesn’t come naturally as it does in most children, but it
can be taught through this direct, enjoyable approach.
Can we use social stories with our partners? Probably not. Adults are
typically set in their ways and don’t take kindly to being treated as school-
children. Yet, the truth is that the social stories still need to be taught. How
can we possibly help our partners understand social situations without
destroying the relationship? Personally, I have found that explaining the
consequences in a logical single sentence usually helps my husband
survive a situation. For example, if we are at a party and my husband is
standing on the periphery, I’ll whisper to him: “If you want to be polite,
you should walk over to Joan, thank her for inviting us, and compliment
her on the decorations.” Of course, he makes his own decisions whether or
not to put on an act or be his Aspie self and ignore the social niceties.
Over the next decade or two, more methods will be developed that will
help an adult Aspie to navigate social situations. For now, we’re left to
develop our own methods based on our own best understanding.
One piece of information helped me narrow down the scope of the
problem. I was looking at social interactions as one big, unpleasant whole.
It was so large that it overwhelmed me. When I read Steven Gutstein’s
(2000, pp.34–5) definition of static versus fluid systems, it cut our
perceived load in half. In a nutshell:
• Static systems – Predictable social situations where the dialogue
is pre-scripted and people are expected to perform a certain
way, e.g. in line at the post office, at the checkout stand at the
grocery store, or picking up the children from school.
• Fluid systems – unpredictable social situations where the
participants determine the outcome of the interaction, e.g. a
FIRST DIAGNOSTIC CRITERIA 125

social chat between friends, an emotional encounter with your


partner, playing with your child, or an impromptu meeting
with the boss.
I realized that my Aspie partner did exceptionally well in static systems –
he rarely made an obvious mistake. It was the fluid systems that caused him
to float out of control. We only needed to focus on managing and repairing
the fluid interactions, which occurred much less frequently.
Despite our die-hard optimism, the weight of the difficulties found
within fluid systems was often crushing because “…people with Autism
perceive normal Fluid Systems not as potential sources of joy and excite-
ment, but as overwhelming foreign environments” (Gutstein 2000, p.35).
So an NT might see a holiday get-together (a fluid situation) as an enjoy-
able, rewarding treat, a time to relax, laugh, and enjoy the company of
friends. In contrast, an Aspie would see a get-together as a confusing,
uncomfortable ordeal.
Because the fluid situations are unpleasant, the Aspie may try to turn a
fluid situation into a static situation. He may grasp for parts of the situation
that he can control. For example, he may dominate the conversation in an
effort to keep it static – scripted. He may try to achieve predictability in an
unpredictable situation. This comes across as controlling. One couple
explains:
He [AS] has been trying to control our home life, telling us what we can
and cannot do even though it’s not his business.
It wasn’t just us; other couples in our situation were under the same burden,
looking for ways to manage the difficulties that occur when an Aspie
flounders in a fluid interaction.

What it may look like: Emotional reciprocity


“Lack of…emotional reciprocity”
Emotional reciprocity is the give and take, the yin and yang, the love and
be loved. Without emotional reciprocity, you feel like you’re married to a
stranger, or even worse, a picky roommate.
Maxine Aston (2001), a Relate counselor specializing in adult AS rela-
tionships, explains emotional reciprocity:
126 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Reciprocity means to feel or give in return for the same. Most rela-
tionships depend on reciprocity to make them work – there has to
be give and take. Some women I contacted felt that they gave and
their partners took.
However, no amount of nagging, emotional blackmail or ultima-
tums will make any difference. These will just put your partner
under tremendous pressure, because he will not know how to
show or express this thing you call empathy.
For the relationship to continue less stressfully, you need to
maintain a realistic view of the situation and not strive for the im-
possible. Your partner cannot give you something he does not
have, but he can protect you, care, show concern and give comfort
if he is made aware that this is required of him. (pp.69–70)
Emotional reciprocity describes the common assumption that if Partner A
gives something, then Partner B will give something in return of equal
value. Although NTs function successfully on this assumption every day, it
may come as a bit of a surprise to your AS partner. Even when the AS
partner is aware that there should be some level of give and take, he
probably won’t agree with the assumption, or know how to reciprocate.
There are all sorts of hidden obstacles for the AS partner in this regard.
We often hear, “The key to a happy marriage is meeting each other
halfway.” Have you tried it in your relationship? Doesn’t work, does it? In
an AS-linked relationship, there is no halfway, there isn’t even a “way.” It’s a
completely new experience and we must forge our own paths. Some of us
can simply say, “Please help me with __” and some of us have a defensive
barrier in front of us.

Implications and solutions: Emotional reciprocity


“Lack of…emotional reciprocity”
With a diagnosis and solid awareness, you’ll be able to recognize that your
partner is reciprocating far more than he appears to be. For example:

NT: Eye contact is personally rewarding.


AS: Eye contact is a gift – it requires conscious effort with little or no
payback.
FIRST DIAGNOSTIC CRITERIA 127

NT: Sharing information is easy and fun.


AS: Sharing takes effort – it’s a strenuous task.

NT: Using creative speech (metaphors, sarcasm, gentle teasing) to add


interest to the conversation.
AS: Performing mental detective work to figure out what is real and
what is part of NT-speak.
Perhaps our AS partners are making a much larger effort than we recog-
nize, performing mental loopdy-loops in an effort to figure out our emo-
tional NT ways. Perhaps they work harder and more diligently than we
ever realized just to meet with us on a basic emotional level. Perhaps emo-
tional reciprocity will look different in our AS-linked relationships than it
does in the other relationships we see around us.
It may be depressing to realize that our partners may never meet us on
an NT emotional playing field. As Gisela Slater-Walker (2002), an NT
female married to Chris, an AS male, points out in An Asperger Marriage, “I
am never going to have those ‘romantic’ moments where he is reading my
mind” (p.94). Throughout the book, Gisela points out the many things she
will not experience in her marriage to an AS partner. Her awareness is
insightful. Both Chris and Gisela explain the difficulties in the relationship
and explain how they still have not been able to find effective counseling
services that might improve their situation: “There seems to be little
prospect of this situation changing in the foreseeable future” (Chris, p.41).
The finality and consistent nature of Asperger Syndrome is counterbal-
anced by the realization that it is a developmental disorder. Developmental
disorders are those that improve over time, as the person learns and grows.
A person with AS will learn the nuances of reciprocity as he grows, perhaps
at a much slower rate than his peers, but it will occur (Attwood 1998,
p.176 and 184). Sooner or later, your AS partner may learn and eventually
feel the sweet joys of emotional reciprocity. One woman explains her per-
ception of this life experience:
I find it thrilling to see my husband [AS] explore issues that others find
intuitive. It’s like watching someone discover the taste of chocolate – he
may hate it, he may love it, but I get to be there for the first taste… Some
people would be frustrated and angry that “He’s finally learning to act
128 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

like an adult!” But I relish those sweet little pleasures in life and I don’t
have many set notions of what is appropriate for him – he is who he is.

GIVE AND TAKE


As a person with AS progresses through school and develops into an adult,
he will pick up a basic notion of social interaction, enough to get by and
enough to become linked with you. Yet, there is still a large void of misun-
derstanding that comes when he doesn’t understand the intricate
give-and-take nature of an adult long-term relationship. Here are a few
examples along with how they might be derailed by AS:

Give: You make the meal.


Take: Your partner does the dishes.
Complication: Your partner may not be able to handle the complexity of
the many steps in the dishwashing process: where to put the dishes, how
to scrub a rarely used pan, determining the exact level of cleanliness
required for an old pot, etc.

Give: You take care of the garden.


Take: Your partner mows the lawn.
Complication: Sensory issues may make mowing the lawn impossible.

Give: You express your love.


Take: Your partner expresses love in a similar fashion.
Complication: Your partner may not know the language for how to
respond in a unique way but with a matching level of affection.

Give: You cry.


Take: Your partner puts his arm around you to console you.
Complication: Your crying is extremely disturbing to his senses
(auditory sensory dysfunction).
Once you see the different types of effort that you both put into the simple
daily situations in life, you can better appreciate your partner’s efforts. For
you, buying groceries may be simple, but for your AS partner, it may be a
nightmare. Here are a few examples of reciprocity by an Aspie that may go
unnoticed due to the fact that they are typically classified as relatively easy
tasks in the NT realm:
FIRST DIAGNOSTIC CRITERIA 129

Example: He [AS] took the kids to soccer.


Level of effort: He endured a noisy car, aggravating traffic, and with-
stood the pressures of an inevitable meltdown for several hours, all for
the sake of acting like a normal dad driving the soccer carpool.
Example: She [AS] went with me to my yearly employee Christmas
party. She talked with my colleagues and introduced herself to my boss.
Level of effort: She spent days silently agonizing over the event and
weeks recovering from it. She was bombarded with sensory offenses,
she endured mind-numbing voices and she held off the impending
meltdown with every ounce of effort she could muster.
I have seen how both partners in a happy relationship, AS or not, bend over
backward to make their partner comfortable. Listen in on one woman’s
experience:
We went out shopping the other day, just one stop, but it was so over-
whelming that when I told him we needed to go to another store next,
he literally crumbled. “It’s killing me!” Certain tasks are so phenom-
enally difficult for him, and from what I can see, he can be crushed
under a load that I don’t even recognize as a load.
Perhaps the heavy burden of the give-and-take issue can be partly lifted by
an awareness of how the AS traits raise the difficulty level of daily activi-
ties. In order to see if a particular activity is difficult for my husband, we use
a rating scale of 1 to 10. If an activity is easy and enjoyable, it is a 1; an
activity that takes significant effort but won’t do permanent damage is a 5;
an activity that is worse than walking on razor blades is a 10. I’ll ask, “Who
goes to the store for groceries?” He’ll say, “2,” I’ll say “4,” and he’s off to the
store for groceries. The rating indicates how much we’ll have to stretch in
order to accommodate a certain task that needs to be done. A few times,
we’ve both been in the 9s or 10s and we’ve decided to skip the task. The
rating scale helps us communicate our emotional, mental, and physical
state in a highly efficient manner.
The heavy burden of the give-and-take issue may also be lifted, if only
slightly, by encouraging your AS partner to imitate the actions that you
need to see in order to realize a preliminary emotional satisfaction in the
relationship. One woman explains:
130 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

My husband [AS] and I enjoy watching movies together. The whole


concept of good acting is an ever-present issue for us. We poke fun at the
level of acting required to look like a normal couple. Our solution is for
me to script for him as if I was a movie scriptwriter creating our relation-
ship on the spot. I say things like: “This is the part where you put your
arm around me” or “This is the part where you profess your undying love
for me.” It’s a casual, fun way to script for him and it adds an element of
lightheartedness to the otherwise depressing reality – that he needs a
script to get by.

FORGIVE AND FORGET

To forgive is to set the prisoner free, and then discover the prisoner
was you.
Anon

It’s highly likely that you’re holding on to anger, regret, grudges, frustra-
tions, and hurt. It’s heavy, isn’t it? I carried around buckets full of anger for
the first decade of our marriage, but then it got too heavy. It broke my back.
I couldn’t carry it all. I finally found a mental trick that helps me let go of
the anger.
When my husband does something “offensive,” I think: “I’m going to
forgive him sooner or later, so why not do it now?” I’ve never been able to
think of a valid reason to hold out and continue the fight. The cost of
continuing the fight is always far heavier than the benefit of forgiving
immediately. In our topsy-turvy AS marriage, I flipped the scales once
again so that I was no longer on the receiving end of his apparent
“crassness.” I looked at forgiveness as a selfish act. I was forgiving
immediately in order to save my strength for better things. Holding a
grudge takes too much time and depletes my emotional reserves.
A solid understanding of Asperger Syndrome helped me see that, with
my Aspie husband, it’s most appropriate to forgive immediately. He won’t
see my grudge so it holds no value to him. What does a grudge look like in
an NT relationship? One person is offended and gives the cold shoulder
(body posture turned away, lack of eye contact, change in the tone of voice)
and the other person sees the cues and either apologizes, reacts in kind, or
brings the situation out into the open – a reaction occurs in some form.
Would a person with AS see a grudge? Of course not. The nonverbal cues
FIRST DIAGNOSTIC CRITERIA 131

are missed and the NT partner gets even more frustrated, first because of
the grudge, and second because the grudge is receiving no reaction. The
grudge hurts me doubly. In order to save myself from becoming a bitter
old woman, I have to find a way to let go of the grudge as if it were a chunk
of dry ice simultaneously burning and freezing my hands.
Grudges are natural human reactions and, in the NT world, they serve
a purpose. With most people, it’s best not to forgive immediately without
talking about the consequences and repercussions – doing so indicates you
are a pushover, a wimp, a doormat. Humans typically learn and improve
their behaviors when they see the reactions from others but Aspies don’t
learn from their behaviors (Attwood 1998, pp.117–8). Due to my hus-
band’s inability to generalize, he can make the exact same mistake repeat-
edly and not see the pattern. Someday he may pick up this information, but
my immediate concern is to make sure that this pattern doesn’t hurt me or
make me bitter.
Of course there are behaviors that are unforgivable. For example, if he
ever cheated on me, it would immediately disintegrate our union. I have
made him aware of the few rules of the relationship and their specific
consequences just as he has made me aware of his. For the everyday matters
that are of little consequence, that are merely “rude,” uncomfortable, or
seemingly hurtful, I had to develop a working strategy, one that I haven’t
been able to find in the standard marriage/relationship books.
Because my husband is “different,” our interactions are different. I have
to look beyond “normal” human response and realize that it doesn’t work
with him. It goes against my natural thought processes to think in one
quick, instantaneous thought, “That hurt! But I’ll forget it.” I have to let go
of my natural, rational response to display anger and give in to the reality
that “normal” interactions don’t work for us.
“I’m going to forgive him sooner or later, so why not do it now?” Soon
this became a habit. I would go through the steps without having to
consciously choose the better reaction. I noticed the anger slipping away. I
finally dropped that heavy load. What a relief.
THE IRONY OF CODEPENDENCY
Look at an adult AS relationship and you may see the worrisome signs of
codependency: telling each other what to say, relying on each other for
132 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

basic needs, etc. Why is it that some AS-linked codependent relationships


are the happiest?
This puzzle first struck me when I surfed across Liane Holliday
Willey’s website, www.aspie.com. She is obviously a healthy, well-adjusted
Aspie female, happily married with children, yet one line caught my
attention. In the “About Liane” section she states, “Fifteen years and three
wild and wondrous children later, I am part of a codependent family
seemingly joined at the hip!” The word “codependent” jumped out as
vividly as a swear word. I had learned that codependency was the evil
destroyer of dreams, a crusher of souls. As I continued my research into AS
and met other couples, I saw signs of codependency in their relationships
and in my own. What was it about these AS relationships that made
apparent codependency acceptable and even beneficial?
Let’s break it down into some of the most easily observable behaviors.
What might a codependent couple look like? Here’s one example of a
couple at a social gathering:
NT wife: Look, there’s Bob and Sally across the room standing by the
big plant. Let’s go over and say hi. You say hello, you’re glad to see them,
pause, and then ask them if their dog is doing better after surgery. Then
don’t say anything else unless someone asks you a question.
AS husband: OK.
To most people, this sounds absolutely ridiculous. Who does she think she
is, telling her partner exactly what to say, how to say it, and when to say it?
This particular scenario demonstrates an extreme situation for an Aspie –
social chitchat in a public place with people he rarely sees. With an aware-
ness of AS and a solid understanding that they are both in the relationship
to help each other, the wife takes a preemptive strike against the problems
that usually occur in a social situation – she scripts for her husband. By
scripting, she gives her husband some guidance, support, and direction in
a situation that makes him cringe on the inside and possibly on the outside
too.
Without knowledge of AS and the way that scripting helps an Aspie
through difficult situations, the scenario appears as a classic codependent
conversation. Through an NT lens, the wife has aggressively taken over
control of social situations and her husband has become the complacent
FIRST DIAGNOSTIC CRITERIA 133

“puppet.” Through an AS lens, the scripting has nothing to do with


control or complacency – it’s a matter of survival.
AS researcher Digby Tantam (2000) explains how scripting is appro-
priate in helping an adult Aspie through difficult situations. “Words may
provide people with AS with social understanding that they do not have
intuitively. Clear, nonmetaphorical descriptions of why people react as
they do, or how to behave in particular situations, can be useful guides for a
person with AS who is at a loss and may help to prevent emotional upset or
social breakdown” (p.379).
Here’s another example of a couple who appear codependent but are
acting based on their best knowledge of AS:

AS wife: Let’s just stay home today. I don’t want to go out. Stay with
me?
NT husband: OK.
Is this woman needy? Clingy? So emotionally bankrupt that she can’t
entertain herself for a few hours? Under an experienced AS psychologist’s
microscope, we would most likely see an Aspie female who sincerely needs
the physical presence of someone she can trust (her partner) in an effort to
rebalance herself. Although she’s probably too strung out to be able to ver-
balize it, she is aware on some level that she needs downtime in order to
calm her sensory overload. She may not be able to identify it, but probably
knows subconsciously that if they stay home, her husband may give her a
deep-pressure back rub to relieve sensory overload and do many other
things that help her rebalance. Note that the husband doesn’t ask why
because he already knows and trusts that his wife has a good reason that is
most likely based in AS-related difficulties. It would be very easy for him to
feel controlled or manipulated if he didn’t understand his Aspie wife’s
intentions.
Codependent people try to monitor and control their partner’s activi-
ties. In terms of NT codependency, the previous example shows a desire to
convince and control. In terms of AS traits, the previous example shows a
partner who is self-monitoring and self-healing. In all aspects, the AS
partner is trying to be the best partner possible by avoiding further
meltdown.
134 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Although I could see successful AS marriages around me, I still


couldn’t figure out how codependent behaviors were part of the picture. It
occurred to me that perhaps the AS partner, due to vastly different neuro-
logical wiring, resists some of the poisonous side effects of codependency,
not allowing for either partner to overlap in an unhealthy way. As one
woman stated:
I used to be so busy with work and family that I could have kept three
clones of me busy around the clock. I used to beg, plead, rant, and
chastise my husband into helping me but he wouldn’t. I used to think
my husband was the person who “completed me” and that meant inter-
meshing my life with his to such a degree that my responsibilities were
automatically his also. About a year ago I read a book about
codependent relationships. It stated that you should never look to your
significant other to complete you in any way. You should be a complete
person, able to live happily on your own, who chooses to live with a par-
ticular person you love. Once I grasped that concept, I consciously
fought the urge to ask my husband to “help with this” and “help with
that.” I learned that if I couldn’t do it on my own, maybe I was doing too
much. I dropped several volunteer activities, cut back on work hours,
and let a few hobbies gather dust. As I drew the line between what was
my responsibility and what was his responsibility, it became shockingly
clear to me that my husband had simply not allowed me to bring him
into my busy little world. He stood his ground because he knew my
busy world was a place where he could not live.
Perhaps codependency looks very different in an AS-linked relationship.
This is an issue that I hope professionals will research in the future, as we
explore the intricacies of building healthy adult AS relationships.
CHAPTER 5

Second Diagnostic Criteria


Peculiar, Repetitive
or All-Encompassing Behavior

B. Restricted repetitive and stereotyped patterns of behavior,


interests, and activities, as manifested by at least one of the
following:
1. Encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that is
abnormal either in intensity or focus.
2. Apparently inflexible adherence to specific,
nonfunctional routines or rituals.
3. Stereotyped and repetitive motor mannerisms (e.g. hand
or finger flapping or twisting, or complex whole-body
movements.
4. Persistent preoccupation with parts of objects.
The second part of the diagnostic criteria contains my favorite aspect of AS
– the “encompassing…interest.” One of the many reasons I fell in love
with my husband was that I marveled at his ability to lose himself in his
work. Never in my life had I met someone who could focus so intensely on
one particular topic of study. Unfortunately, as it is with all human nature,

135
136 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

there were plenty of drawbacks to this trait that required work-arounds in


order for us to function as a couple and as a family.

What it may look like: Intense interest


“Encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in
intensity or focus”
Sometimes Aspies makes a career out of their intense interest and
sometimes it’s relegated to a hobby. The difference between the common
man’s hobby/job and an Aspie’s hobby/job is the intensity and focus. We
had one incident that I wrote in my journal, long before we knew about
AS:
We just got back from vacation and the first thing he did was make a
beeline for his computer. He sat down at his computer and played for a
few hours. He is utterly sleep-deprived but instead of crashing on the
bed as any normal person would do, he plays on his computer?
The oddity lay in the fact that he was past the point at which most humans
can maintain wakefulness. Over the span of one week, he had slept a total
of 17 hours (70 hours is minimum for him). We were driving cross-country
and he drove overnight. He never managed to find time to sleep during the
day. By any physician’s analysis, he should have collapsed on the nearest
soft spot. But, to his Aspie brain, the computer was calling him so loudly
that he responded to it over the most intense physical fatigue he had ever
felt.
We have seen this happen in other Aspies whose intense interest
happens to be computers. My husband’s colleagues can pull all-nighters,
all-weekers, and other forms of intense non-stop work time. The key dif-
ference between someone who is simply working hard toward a deadline
and an Aspie indulging in an intense interest is that the Aspie enjoys it,
engaging in the task for pure involvement. Liane Holliday Willey (2001)
explains that an Aspie’s “…desire to spend time and thought with a
favored passion is extremely gratifying. Our obsessions are our enchant-
ers… it can be the closest thing to nirvana we will ever know” (p.122).
SECOND DIAGNOSTIC CRITERIA 137

Adults may have better control over their interests and may be able to
curtail the obsession better than children. In order to witness an “intense
interest” in its purest form, you may wish to observe a child who manifests
this particular AS trait. One woman explains how she observed the intense
interest in action with her AS child:
I witnessed the unbridled intensity of focus when we tested our
four-year-old son. At the time we didn’t know about AS, but we sus-
pected he had an abnormally long attention span for computers. One
day we told him that he could “play da kaputer” all day if he liked. He
started playing at 6 a.m. and we finally stopped the experiment at 10
p.m., a full 16-hour day. During this time, he suppressed all bodily func-
tions due to his intense focus. He never asked for food, although we
gave him finger food sparingly and he ate it with his eyes glued to the
monitor with one hand working the keyboard. He also suppressed
bodily urges to go to the bathroom and we had to change his pants for
him several times, again with one hand still on the keyboard, eyes trying
not to break their focus. At 10 p.m. that night we thought that he would
be grumpy, tired, and headachy from the eyestrain, but he was happier
than ever: smiling, bubbly, chipper. He seemed invigorated by the expe-
rience. This test showed me, in the most concrete way possible, the
intensity and focus that are possible in a brain different from mine.
Let’s break down this part of the diagnosis. “Encompassing preoccupa-
tion…” refers to the tendency to surround themselves with their interest.
For example, if the Aspie’s interest is sailboats, he may have one, live on
one, build one, work in a factory that makes sailboats, read about sailboats,
etc. As long as it falls within the boundaries of his interest then it will
encompass many areas of his life: thoughts, speech, and actions.
Next: “…with one or more stereotyped and restricted patterns of
interest…” This refers to the rigidity of the interest. If an Aspie is inter-
ested in trains, he will probably be interested in trains only, not transporta-
tion vehicles in general. The interest will be restricted to a specific topic or
area of study. Sometimes the interest is obscure, such as fifteenth-century
doll making. The interest is “restricted” in that it doesn’t overflow into
other areas (Tantam 1991, p.162). For example, if the Aspie is interested in
rare books, he may be interested in collecting them and caring for them but
not reading them.
138 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Finally: “…that is abnormal in either intensity or focus.” The Aspie’s


interest is not just something he is interested in; it appears as an obsession.
The Aspie must study it, learn about it, examine it, and do whatever it takes
to satisfy the interest. There are rare news reports about a naïve Aspie
breaking the law or otherwise overstepping social rules in pursuit of the
interest. For example, if an Aspie is interested in staplers, he may collect all
the staplers from the office and bring them home to study them. For most
people, the laws of acceptable human behavior speak louder than their
current interest. For Aspies, their current interest may speak louder than
anything else.

Implications and solutions: Intense interest


“Encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in
intensity or focus”
The Aspie’s intense interest can be a blessing in disguise, especially if it can
be put to good use in paid employment. Many Aspies are interested in
computers; they make wonderfully dedicated programmers, network
analysts or any other position that focuses on the computer without the
emotive element of human interaction. Aspies may also be drawn to
professions in law, accounting, astronomy, mathematics, higher education,
or other positions that require sustained periods of intense study.
At first glance, a partner’s obsessive interest may lead you or others to
believe that he has obsessive compulsive disorder (OCD). Perhaps it’s part
of the equation, but perhaps the obsessive nature of the Aspie’s interest is
based more solidly in the AS diagnosis. If you have questions in this area,
it’s important to seek an AS-aware professional’s guidance. The methodol-
ogies used to treat an adult with OCD are polar opposites from how a pro-
fessional handles an adult Aspie’s apparently obsessive interest. An inap-
propriate approach could be damaging. For example, OCD patients are
often taught to force themselves to do without the obsession. Force an
adult Aspie to do without their obsession and you’re asking for a
meltdown or at least “extreme annoyance” (Frith 1991, p.14). One Aspie
male stated:
SECOND DIAGNOSTIC CRITERIA 139

Asking me to give this up is asking me to throw away my personality.


This is who I am.
One of the big differences between OCD behavior and AS behavior is
motivation and emotive reaction to the behavior. A person with OCD feels
anxiety and fear if not engaged in the behavior or thought. The action or
thought is continued in an effort to hold the fear and anxiety at bay. In
contrast, a person with AS feels a great sense of satisfaction and pleasure
when engaged in the intense interest (Tantam 2000, p.386). Engaging in
the activity may even be therapeutic (Attwood 1998, p.99). For example:
When she [AS] talks about bugs, her eyes light up. (She’s an entomolo-
gist.) My ex-wife’s eyes lit up like that the day I showed her the huge
diamond on the engagement ring I’d bought for her. Some women need
diamonds; all my Aspie wife needs is a glimpse at a rare bug and she’s on
fire…
Or:
Whenever he [AS] is stressed out, he plays video games and computer
games. It relaxes him.
Another difference between AS intense interests and OCD is that the
person with OCD is aware of the illogical nature of the obsession whereas
the Aspie is not aware that the obsessive activity is anything but logical and
fun (Attwood 1998, p.93). If your Aspie partner’s obsessive interest is
toilet bowl brushes or other people’s jewelry, you may run into problems
that need professional counseling. If your Aspie partner’s interest is some-
thing inconspicuous that can be put to good use, count your blessings.
Listen in to one woman explaining her husband’s interest:
I grew up thinking that work was work, and then I married a guy [AS]
who thinks that work is play. He comes home from a 12-hour work day
excited about what he’s done. Sometimes he can be talking about what
happened at work and not even notice that I’ve left the room. He just has
to tell me (or the wall) all about it. It’s such a blessing to have a husband
who enjoys what he does.
How do we make the best of this particular AS trait? We can support and
encourage our partners to find or create a job that ties into the intense
interest. If your partner can’t find a niche in the world of paid employment,
there may be a huge price to pay – the intense interest will need to be satis-
fied after hours, meaning that you’ll see each other so rarely that you may
140 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

forget each other’s names. These obsessive interests are time–consuming


and may leave little room for marital interaction.
There also appears to be another option, but it’s a horribly destructive
one. Although it appears to be (thankfully) quite rare, it may happen that at
times a person diagnosed with AS may focus on the partner (you) as the
object of intense obsession. As one AS counselor explains: “[The non-AS
partner] eventually realized that they were their partner’s obsession a little
while after they started seeing each other” (Aston 2001, p.30). For
example:
From the minute he comes home until the minute he leaves, he’s con-
stantly complaining about every little thing. Everything I do is
wrong… He’s the drill sergeant and I’m the unwilling recruit. Our
home is a boot camp.
Of course, this type of situation needs to be addressed by the most highly
qualified therapist you can find. It may be devastating if the intense interest
is directed at you personally.
There is another interesting implication: when we see someone deeply
consumed in an interest, we know he is capable of great dedication. We
expect our partners to be deeply dedicated to us. We hope that they will do
whatever it takes to make the relationship work. To our surprise, we may
find that our AS partners are unwilling to do even the perfunctory tasks to
hold the relationship together, e.g. discuss personal matters, attend coun-
seling, etc. Hans Asperger (1944) observed that his charges were “…ego-
centric in the extreme. They follow only their own wishes, interests and
spontaneous impulses, without considering restrictions or prescriptions
imposed from outside” (Frith 1991, p.81). We see that our partners can
dive deep into their interests but won’t even consider issues regarding
marital relations. This discrepancy looks like a conscious choice.
The rigidity of the interest may appear as obstinacy. Researcher Lorna
Wing (1981) observed of an autistic individual: “She would do no work in
any subject that did not interest her.” The Aspie may see little else in the
world that is worth doing besides the particular interest. Personally, I’ve
had a hard time with this issue because I was raised with a strong work
ethic, not cringing from unpleasant tasks. The contrast is stark because my
Aspie partner will not do things he doesn’t like to do. He can be as
SECOND DIAGNOSTIC CRITERIA 141

stubborn as a two-ton mule. Here’s how a typical conversation went when


we were first married:
Me: I need you to ___ (take out the garbage, help me unpack, etc.).
Him [AS]: No thank you.
Me: Please do ____.
Him: I’d rather not.
Me: I need you to ___.
Him: (Silence.)
Me: Why won’t you do ___?
Him: Because I don’t want to.
Both my partner and I have made progress over the years; I have learned
how to ask correctly and he has learned either to do it or explain that he
can’t. He has come to see the trade-off – he wants to have his family by his
side and if it means dumping the garbage, so be it.
How do we deal with an AS partner’s apparent obstinacy? I believe the
first step is to recognize it for what it is: a simple way of viewing the world
through the rose-colored glasses of an Aspie. Through their glasses, the
beauty lies in focusing on one phenomenally intriguing topic at a time and
not allowing anything to detract from it. With no thought to the social
repercussions, they are able to say, “I don’t want to.” Compare this to the
average Joe who says yes to everything, is so distracted by so many tasks
and so many obligations that his life can shatter in a heartbeat because it’s
spread so thin. I’d much rather have my Aspie husband’s ability to focus
and tune out all other distractions. The intense interest may be the Aspie’s
way of staying strong.
When I was first familiarizing myself with AS, I met a couple who
kindly revealed to me that the husband was AS. I had always wondered
why he disappeared for a half hour at a time while I was visiting. Consis-
tently, the wife tactfully dismissed it as, “Oh, he has something that he has
to do.” I assumed that he was performing a household chore, but later
found out that he was playing games on the computer. This might have
been considered rude if he hadn’t been able to hide it. Social situations
were painful for him and he needed downtime. The intense interest,
whether it’s computer games, astronomy, trains, calculating numbers, or
142 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

watching a trivia show on TV – they all equate to an Aspie’s desire to lose


himself in something he loves. This is where the AS and the NT worlds
overlap, at least in principle – everyone needs an escape of some sort.
EMPLOYMENT
Ideally, a person with an encompassing interest in a topic will be able to
find paid employment that satisfies his interest. Unfortunately, finding the
perfect match of employee to employment can be extremely difficult,
given the list of limitations that may be present. For example:
She [AS] has been out of work for 14 months now. She has so many
restrictions. She can’t work near fluorescent lights; she can’t do presen-
tations; she can’t make it through an interview (she runs out of the
room); she can’t handle the perfumes of other employees; she argues
with her co-workers. There are a lot of companies who can’t accommo-
date her.
If your AS partner has difficulties finding and maintaining employment,
you’re not alone. The following story is common:
Over the last five years, he [AS] has been fired seven times. He just can’t
seem to keep a job. Finding a new one that fits him is nearly impossible.
Once the person with AS finds a satisfying job, there is the issue of
advancement. The rigidity and strict nature of the interest may limit his
abilities to flow with the natural upward progression of the job. For
example:
My husband [AS] loves to program, but typically programmers advance
to “lead programmers” and take on management responsibilities super-
vising other programmers. At his first job, they gave him management
responsibilities and found out what a big mistake that was! He just can’t
handle people. “They’re too unpredictable,” he says. He ended up doing
the work of five people because he simply could not tell others what
they were supposed to do.
This particular problem is more than a lack of people skills; the difficulty
lies in the interest being restricted to the act of solitary programming. It
doesn’t extend beyond that point, not one iota. The situation is also befud-
dled by a theory of mind issue (not being able to attribute mental states to
others). A person who can’t naturally read other’s minds is at a great disad-
vantage in a management position.
SECOND DIAGNOSTIC CRITERIA 143

A lack of flexibility, rigid focus, or apparent obstinacy may hamper


employment. For example:
She [AS] creates great advertising layouts, but there are so many things
that she lets slip through the cracks. I tell her to edit her text and she
doesn’t. I tell her to change the color scheme and she doesn’t. She just
won’t do what she doesn’t want to do. She’s one mistake away from
getting fired.
Often, the work of finding appropriate employment is daunting and the
efforts to keep the employment are equally troublesome. Employment for
Aspies is such a large issue that it can only be covered superficially here, as
it relates directly to the marital situation.
Why is money (employment) at the epicenter of marital eruptions?
Because it is at the core of all three of the universally defined human needs:
food, shelter, and clothing. They all cost money. By definition, NTs are
more flexible and can more easily adjust to the pressures of a tight job
market, a difficult work environment, or a changing list of job duties. For a
person with AS, finding and maintaining paid employment may prove to
be life’s biggest hurdle.
In our experience, our happiest times have come when I have sup-
ported my husband’s desire to quench his intense interest at work. If he
wants to make games for the rest of his life, so be it. It’s his life, his choice,
and we count our blessings every day that we were born in an era where a
person can earn a living developing computer games. The job fits him well.
No one cares what he wears or how he looks. There is no pretense and
there are few social rules. He is free to be creative. He is allowed to speak
without eye contact. In this non-traditional work environment his oddities
do not stand out so much. They have toys strewn about their offices, small
objects such as bouncy balls, squishy balls, putty, and other small
squishable objects that can be used for stims (self-stimulatory or
self-soothing actions). He is free to modify his office as needed. No one
tells him to clean it up and no one judges him for his messy nesting in his
office. There are white boards in the conference rooms and in each office
so that they can draw instead of speak. There is an atmosphere of creative
fun. Despite the incredibly solid fit of person to employment, it is still bor-
derline bearable. As my AS husband explains:
144 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

When I’m at work, I have to do junk. This is the perfect job, perfect
company with cool people but it still makes me crack.
With this in mind, I remember that his Aspieness makes him “different”
from others. He can’t just job hunt as others do and he can’t just “do some-
thing else.” It doesn’t work like that. His skills are so greatly skewed in
relation to the world’s view that we need to consider ourselves lucky that
he is considered “skilled” at all in today’s job market. He has to find the
perfect match. He isn’t a square peg, or a hexagon, or anything else. He’s an
“odd-shaped peg” that only fits in one or two holes on the world’s employ-
ment board.

What it may look like: Routines


“Apparently inflexible adherence to specific, nonfunctional
routines or rituals”
When I first read about Asperger Syndrome, this line of the diagnostic
criteria made my brain go numb. Routines? What routines? My husband
doesn’t do anything nonfunctional… (denial setting in). I needed to read
many examples before I was able to recognize the nonfunctional routines
that had gently ensconced themselves in our lives. Here’s one example that
helped me visualize this particular issue:
He [AS] absolutely must eat his meal a certain way. He starts on one side
of his plate and works his way around the plate clockwise, eating certain
portions of each food item so that he finishes his plate with a perfect
amount of each one left for the final bites. If he gets to the end of his
dinner and he’s somehow mismanaged the portions, he’s agitated.
There must be exactly enough mashed potatoes to go with the teaspoon
of gravy left on the plate.
So what if a person eats funny? It becomes a problem when the routine is
inflexible, when doing things differently makes the person nervous or
creates anxiety.
Let’s break it down: “Apparently inflexible adherence…” A lack of
flexibility in any shape or form can cause undue stress and strain on a
marriage. Marriage and other long-term commitments to another person
SECOND DIAGNOSTIC CRITERIA 145

require a certain degree of flexibility if both partners are going to move in


sync with each other. For example:
When I look at our marriage from a larger viewpoint, I realize that there
have been many changes in our lives that my husband [AS] has not been
able to handle because they require him to be flexible – something he’s
not. We had kids (who needed lots of help). He lost his job (we had to
move). I went back to work (shifting the responsibilities of the house-
work). It’s part of human progression for everything to change over
time, but I keep getting this feeling like my husband is still standing
back in the 1970s with his heels dug in deep, wishing things had never
changed. He’s holding on to old possessions and old ways of doing
things in an effort to stop the changes.
The “inflexible adherence” refers to how an Aspie will not change the par-
ticular behavior in any way, for any reason. For example:
Whenever we go on vacation, my husband has to pack the car a certain
way. It doesn’t matter if we’re late – he has to do it his way. If I try to do
it, he’ll find a reason to take everything back out of the car and repack it.
He has to put certain things in certain spots or, well, I don’t know what
would happen. It just isn’t an option to do it any other way.
If you both show inflexibility, you may relate to the following example:
We both have ways of doing things. I have to arrange my books a certain
way. He has to keep the computer desk a certain way. If either of us rear-
ranges, even slightly, the other person’s stuff, we’re both in trouble.
Neither of us will back down.
Next: “…specific…” The word “specific” is in this part of the diagnosis for
a good reason. There are specific details about the routine that must be
followed exactly. For example:
When my boyfriend [AS] comes home from work, he has to take his coat
off (right arm then left arm), put his keys down in a particular way (with
the keychain logo facing up), and do a dozen other things. At first I
thought it wasn’t that bad, and then I realized that it has to be the exact
same way every single time.
The final part: “…nonfunctional routines or rituals.” Nonfunctional means
that it doesn’t serve much of a purpose. For example:
My parents are an AS/AS couple. They are amazingly skilled at doing
nearly nothing for hours at a time. For example, they have a particular
146 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

way of doing dishes where they wash off the dish, put it through the
dishwasher, and then sometimes wash it again when it comes out.
When they go for a drive, they always use a map even though they
know how to get there. Something that would take the average person
two steps to complete takes seven or eight steps for my parents. If
someone questions them on their nonfunctional behavior, they are
always dumbfounded: “This is the best way to do it.”
Often, a person’s efforts to explain the nonfunctional nature of the routine
will be met with a quizzical look, a blank response, or maybe defensive-
ness.
A nonfunctional routine may be as simple as how a person gets ready
for bed, sharpens a pencil, arranges the table, or drives the car. When you
were first dating, you probably thought your partner’s eccentricities were
charming, but once you were married, you probably noticed the repercus-
sions that come from the inflexible nature of the routines. For example:
My [AS] husband has a bizarre way of putting on his shoes. At first, I
thought it was charming. He took such great care to get his shoes on just
right, loosening the laces to just the right length, putting his foot in and
nudging the shoe here and there, then getting the laces all to the perfect
snugness. It never bothered me until once, we were in a hurry and he
couldn’t speed up the process. I was fuming. We were late and the least
he could do was grab his shoes, get in the car and let us get on the road.
But no… he had to do it the way he always does it. Over the years, this
bothered me more and more. Once I timed him. Two minutes and 53
seconds just to put on a pair of shoes! This “charming” shoe behavior
became a huge source of contention for us. I finally learned to give him a
few minutes of time while I cleaned the car, cleaned the garage, or did
something to keep myself busy and not think about his ridiculous shoe
ritual.
You may notice nonfunctional routines in your partner or not. Sometimes
they are conspicuous, sometimes they aren’t. The varying degrees of traits
in a person are what create the beauty and diversity of human nature.
SECOND DIAGNOSTIC CRITERIA 147

Implications and solutions: Routines


“Apparently inflexible adherence to specific, nonfunctional
routines or rituals”
Although I first thought that my AS husband was immune to this part of
the diagnosis, once I understood it, I discovered several nonfunctional
routines that threatened to become part of our lives. For example, every
Sunday we teach a group of children at our church. Usually, we use our
scanner at home to make photocopies of a coloring sheet from our
teacher’s manual. Despite the fact that we’re often late, the kids need
breakfast, and several tasks are screaming for our attention, my husband
still must scan the image into a photo editing program, clean up any flecks
on the page, and touch it up so it’s perfectly centered, perfectly straight.
The copies often look better than the original. Why go to so much effort
for something that will be scribbled on by five-year-olds? His answer: “I
have to do it this way. I don’t know why.”
What’s the solution? First, identify the routine. If I had been too
mentally distracted to notice, I may have overlooked time and time again
that my husband was engaged in a specific routine. I would have thought,
“What is that man doing? Why isn’t he helping me?!” Instead, I chose to
seek out methodically and observe what was happening week after week.
Once I observed the behavior as a “neurological rut,” I realized that there
was only one potential solution for us: I make the photocopies, which takes
me less than a minute and frees up a full 30 to 40 minutes of his time,
during which he helps with the children and makes us a delicious
breakfast. The solution was simple, but required a little thought. He
doesn’t care what the photocopies look like – he simply cannot do the
photocopy process any other way.
It would be great if our Aspie partners could simply say, “It isn’t a big
deal,” and move on, but if we underestimate the power of these nonfunc-
tional routines, we fall prey to the damage that may be done by overlook-
ing them. For example:
One day he [AS] and I were late for a party. I told him, “Just shave in the
car! We have to go!” I grabbed his shaver and went out to the car. He
followed in a sort of daze. I drove so he could shave but he didn’t start
shaving until I complained that he needed to hurry up. The car ride was
148 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

smooth; in fact, we were stopped in traffic most of the time. He had a


towel to protect his clothes from the stubble and it should have been a
simple buzz, buzz, buzz, but it wasn’t. He has a way of shaving where
he uses the mirrors at home. Plus, I think the thought of getting the hair
in the car might have been too much for him. By the time we got to the
party, he was such a nervous wreck that we had to turn around and go
home.
So, a potential solution is to not underestimate the power of the routine in
the first place. To accurately weigh the cost, I ask myself, “Do I really want
to see the repercussions of this routine gone awry?” This is where the diag-
nosis comes in handy – if we know it’s a nonfunctional routine, rather than
just a whim, we can deal with it appropriately.
There are ways to train an AS adult out of a nonfunctional routine, but
these need to be taught by a qualified therapist and they may or may not be
effective. Let’s be realistic – even if a person with AS can be trained out of
the particular nonfunctional behavior, he may already be so set in his ways
that retraining will take a long time or even prove impossible, especially for
routines that the Aspie likes.
The saying “You can’t teach an old dog new tricks” takes on new
meaning for those in an AS-linked relationship. First of all, Aspies have
identified themselves as cats in a dog-eat-dog world. Their personalities
and basic characteristics are more similar to cats (picky, aloof, particular)
than to dogs (easy-going, a follower, friendly). So if Aspies are cats, the
appropriate saying would be: “You can’t teach an old cat tricks that were
intended for dogs in the first place.” Perhaps Aspies, especially ones that
are already grown up, do not wish to change their nonfunctional behav-
iors.
Certain routine behaviors may be ignorable and certain behaviors may
depreciate the quality of life for your Aspie partner. For example, hand
flapping during a meeting or scratching himself in certain spots may be
thoroughly unacceptable. These behaviors need modification in order to
help the person with AS survive on a functional level in public. Apparently,
“the repetitive speech and motor habits cannot be extinguished, but with
time and patience, they can be modified to make them more useful and
socially acceptable” (Wing 1981). A hand flapping could transfer to a toe
tapping, knee bouncing, or rocking. A scratching could transfer to hair
SECOND DIAGNOSTIC CRITERIA 149

twisting or the manipulation of a small object such as a squishy ball or a


pencil in the person’s hands.
Even if the routines are not harmful, what if the routines still bother
you? Make allowances for them. Look the other way. Find ways to work
around it. If there’s one thing I’ve learned from couples that have been
happily married 20 years or longer, it’s that they work around each other.
Often, when standing in a particularly long line at the store, I’ll start up a
conversation with the grandma or grandpa in line beside me. They are
always glad to share their advice. I have talked to more than a hundred over
the years and, from what I can tell from the happily married couples, the
advice always boils down to “Learn to live with it.” This secret to a happy
marriage is often shared with a wink and a twinkle in the eye. I suspect this
is a profound sort of wisdom that comes after years of personal experience.
“Learn” indicates the active process of seeking out knowledge, an effort to
analyze our mistakes and put that knowledge to good use. “Live” indicates
an effort to be consciously alive, choosing to work hard and exercise – to
open up our physical and emotional lungs and breathe. Learn to live with
it.
If you start bemoaning the numerous allowances that you’re making
for your AS partner (especially if your partner has many routine behaviors)
it may help to think of the number of allowances that the typical Aspie has
to make every day just to survive in a non-Aspie world. Try this exercise:
ask your partner, “What specific things do you have to force yourself to
do?” If you get an answer, it will probably give you valuable insight into the
massive amount of effort your partner is already making just to survive
day-to-day. Your efforts to work around a few nonfunctional routines
won’t seem quite so daunting.
I tried the above exercise once with my typically quiet husband. He
launched into a long list of tasks that he has to do to get by in the world,
listing probably 30 details such as “touch dirty things,” “look at people,”
and “move my body.” Afterwards he was out of breath from the uncharac-
teristic amount of talking; he looked exhausted. By verbalizing it, he
realized how heavy his load was. Over the next few days he thought of
other tasks he had to do just to survive. As he shared these with me, I was
stunned. I realized that if I were him, I probably wouldn’t want to get out
150 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

of bed in the morning. It helped me see the depth of his tenacity and will-
power.
It helps to realize why the routines are important. A person with AS
perceives “…a universe where the sheer amount of noise invading his brain
constantly threatens to overwhelm him. He learns to specialize in avoiding
chaos, by shutting out and avoiding most elements of variability and
novelty. Instead, he focuses on the non-changing aspects of his environ-
ment. Elements that remain the same provide him with the greatest experi-
ence of meaning and relation” (Gutstein 2000, p.37). The routines may
serve a vital role in maintaining your partner’s mental health.
A final solution? Look at the big picture. Especially if you’re losing
your temper, force yourself to look at the big picture. Does the routine or
ritual really impact on your lives in such a significant way that you can’t
function as a couple? In the grand scheme of things are you going to care
how he arranges the books on the bookshelf ? Is his morning routine really
that annoying? If you want to make the effort to overlook it, force yourself
to visualize something, anything that will help you get beyond the frustra-
tion and inconveniences you may feel in relation to the routines.
I have a visual that works for me when my husband is doing something
insanely irrelevant. I think of the man I married. I force myself to see him
walking across the university campus and remember the feelings it created
in me then. There doesn’t seem to be enough room in my heart to hold
both the feelings of current frustration and the feelings I felt as a college
girl. The more powerful feeling wins out and the tension is successfully
diverted.
One final word of caution about routines in an AS partner: researchers
often cite that people with AS latch on to routines or patterns and have
unusual difficulty breaking out of them (Aston 2001, pp.61–2). If a
pattern such as anger, fighting, or even abuse becomes routinized, realize
that your AS partner will need more extensive help than an NT would need
in order to change the pattern. If you cover up the negative pattern, ignore
it, or don’t force change, your AS partner may interpret your actions as
approval of the behavior. For the issues that really matter, you must be clear
and unmoving: “Neither of us cheats in a marriage. Ever.” Aspies appreciate
the hard, unchanging, immovable rules (Asperger 1944, p.58 in Frith
1991).
SECOND DIAGNOSTIC CRITERIA 151

Why are the rules and routines so important to the Aspie? As one
insightful adult Aspie explains, “Routines are often the very glue that holds
us together… They bring forth the same consequences and the same
emotions every time we engage in them, unlike that which happens most
every time we try to engage in NT events and situations” (Holliday Willey
2001, p.129). The rules and routines can be comforting. By streamlining
the decision-making process, the Aspie achieves a bit of predictable
serenity.
Aspies deal with complexity by ritualizing it (Tantam 2000, p.393).
They cling to structure, routines, and patterns in an effort to stabilize their
precariously balanced world. We can use this knowledge to our advantage
in our adult relationships, especially in areas such as household chores.
Simple chores can be made doable by ritualizing them, finding and
building patterns so that the task is linear and predictable. For example:
We both work full-time so we must split the household responsibilities
evenly between us so neither one feels over-burdened. We have learned
that he [AS] does best with tasks that are the same every time. I do best
with tasks that need problem-solving abilities and creative solutions. I
cook and he does the dishes. Doing dishes is the same every time: silver-
ware, dishes, and pots. He has order and rhythm while I enjoy the spon-
taneity of figuring out what to cook.
We can maximize our Aspie partner’s obsessional tendencies by encourag-
ing him to take on the tasks that are routine and predictable. A quick
analysis of each task shows us what is a simple task and what is a
multi-layered, decision-laden task. For example, vacuuming is a simple
task as long as the coats, toys, and other extras are picked up off the floor.
Vacuuming is a multi-layer task if the person vacuuming must pick up each
item then decide whether to throw it away, put it away, or set it on a shelf
nearby. In our home, we divvy up the tasks based on each other’s best skills.
Our energetic, ever-running children do best with putting away items that
belong in various locations throughout the home. As my Aspie husband
vacuums, the children clean up ahead of him. When the children have a
question, they ask me “Where does this belong?” and I problem solve.
Since I enjoy creating solutions, I handle the problems that have no prece-
dent. We put our unique strengths to good use.
152 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

FLEXIBILITY
Tony Attwood, in his “Workshop for Partners of People with Asperger’s
Syndrome” class at the May 2000 conference in Coventry, tactfully stated
that “...flexibility, spontaneity, may not be their greatest attribute.” Aspies
are capable of so much, but flexibility is not on the list. Instead, Aspies tend
to thrive on predictability, a stable environment, and a visible, set schedule
(Attwood 1998, pp.99–101). For example:
My wife [AS] does great with the schedule she has set up for our family
but sometimes she breaks down. If the kids have a last minute science
project for school or if someone drops by the house unexpectedly, she
can’t handle it. She’s a computer and she writes her own daily code (her
schedule). She can’t handle many changes in that daily code without
crashing.
While flexibility comes naturally to many of us, it may be difficult for a
person with AS. An adult female Aspie explains: “While we sit persistent,
NTs walk with cognitive pliability. NTs are more wont to engage in behav-
iors that stretch even their elasticity to its limits” (Holliday Willey 2001,
p.96). Another woman explains her experience when she asked her
husband what it was like to be an Aspie:
I have unusually thin skin and when I am pregnant, I get painful red
stretch marks… I can actually feel the skin ripping… I was asking him
[AS] to help me with “just one more thing” when I knew he was already
on overload. He said, “You’re giving me psychological stretch marks!”
Imagining what that must be like, to have the skin of your psyche ripped
by those around you who profess to love you, helped me see how I had
pushed him past his limits.
Lack of flexibility is a well-known AS trait. Here’s the common scenario:
one partner is AS, thus has little or no flexibility. The other partner is NT
(or maybe mild AS or other) and is capable of flexibility. Who is going to
bend to make difficult situations work? Most likely the person who is
capable of flexibility will be the one to compromise, change, bend, or oth-
erwise make the situation work. It’s a simple equation. One person can
bend; the other one can’t. A common complaint:
Does it always have to be “my way or the highway” for him [AS]? I’m so
flexible that I think I broke my spine, but he never compromises, not
one bit.
SECOND DIAGNOSTIC CRITERIA 153

The upside to this situation is that the partner with AS may not be as
“pig-headed” as he appears to be at first glance. There is a significant possi-
bility that the partner with AS is not consciously trying to be inflexible.
The basic act of give and take – I bend a little, you bend a little – may be a
foreign experience. Flexibility comes naturally to NTs when they are
young, playing games on the playground or in the neighborhood. They
naturally experience the give and take of casual human interaction – it is
enjoyable to them. In an AS brain, the give and take isn’t natural and may
need to be taught directly. If presented right, you may be privileged to see
your partner have many “Ah-ha” moments as he realizes exactly how
couples compromise with one another. For example:
Every time we see our therapist, the problems always boil down to the
issue of compromise. The therapist finally showed us by drawing
figures on a piece of paper that show what it looks like to give and take.
With a concrete visual that was related directly to our situation and our
experiences, we were able to see what compromise looks like. She gave
us five situations in which we could practice compromise, scripted the
situations for us, and told us to try it. It worked and we both agreed that
it had a positive outcome. One more small victory!
It may help to draw a picture, make a diagram, or list the items that are
involved in the give-and-take interaction. For example, on a Saturday
when there is a mountain of work to be done, I draw a list of chores for the
day. Everyone has an equally long list. It takes less than a minute to write it
out and post it where everyone can see it. Without this list, my husband
and our Aspie children would be oblivious to the fact that everyone is
giving and everyone is benefiting. The entire mood of the Saturday
changes when we are all aware of the psychology behind our actions.
Of course, there are times when our best efforts come to a screeching
halt. I have found that there are certain factors that trigger an “inflexibility
attack.” If we have company visiting, if it has been a physically exhausting
day, or if there is too much noise in the house, my husband may have an
attack of inflexibility where he isn’t capable of doing things any way other
than his own. It’s common for Aspies to respond to certain external factors,
causing the AS traits to appear more visible than they would on a good day
(Attwood 1998). The factors that bring out the inflexibility are as varied as
the Aspie’s particular personality.
154 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

CHANGING
As you learn about AS, you will find that there are two camps in the field of
autism: one camp encourages the autistic individual to change; the other
camp does not wish to change the nature of the autistic individual.
Typically these two camps are at odds. As a generalization, people dealing
with children are often in the “change” camp while adult Aspies are more
solidly in the “let us be” camp – they would rather keep their Aspieness as
part of their character. A common view for an adult Aspie:
If they were to change my sensory issues, my routines, my intense inter-
ests, my speech, my tone of voice, the way I deal with people, then who
would I be? I surely wouldn’t be me.
This is one of the central issues that you’ll need to ponder and decide on
your own. Do you want your Aspie partner to change or would changing
the AS traits make him an entirely different person? What do you hope for
your partner?
Your Aspie partner will need to ponder it also. Without deciding this
issue, the internal conflict will tug both directions: “Do I try to fit in or do I
maintain my current sense of self ?” My husband’s stance is to seek out
niches where he can be most like himself and avoid those situations that
crush him. He would suffocate under a mask worn every day, every hour.
NTs can make a change in plans or adopt a change in attitude quickly
and easily. It’s entirely different for a person with AS. It took years of ques-
tioning to determine how my AS partner perceives a change in behavior:
1. I must realize that I need to change.
2. I need to know the exact parameters of what to change.
3. I need to see a logical reason to change. If it isn’t logical, I
won’t change.
4. I need to know the specific details of how to make the change.
5. I need to practice the change to make it permanent.
6. Conditions have to be optimal for a change to occur.
Six steps! Compare that to how NTs make an instantaneous judgment,
then change – nearly a single step process. NTs make changes easily and
encourage others to change also. How do NTs elicit change in others?
SECOND DIAGNOSTIC CRITERIA 155

Through encouragement, insistence, even emotional prodding. In the


past, my chosen method was based on the extinction theory.
The extinction theory states that if you ignore a behavior, the person
will stop doing it, thus the behavior becomes extinct. The theory may
work well for dogs and rats, but it apparently doesn’t work too well for
people with AS. Ask anyone who has been married to an Aspie. If you
ignore one of your partner’s “annoying” behaviors, it doesn’t mean that
he’ll stop doing it. Aspies don’t stop or start behaviors because of how you
respond to them. In fact, “the normal person…is influenced by his social
experiences, whereas the person with Asperger Syndrome seems cut off
from the effects of outside contacts” (Wing 1981). You may relate to the
following example:
I believe in turning the other cheek [extinction theory in practice] when
someone does something hurtful. When I ignore my wife [AS], she still
keeps doing the inappropriate behavior. She doesn’t see that I have cut
myself off from her. I ignore her, abandoning her in a world full of
hidden meanings.
It seems like the most successful and optimistic approach is to identify your
partner’s Aspie-style decision-making process in all its complexity, then to
support his efforts in the changes he desires to make.

What it may look like: Mannerisms


“Stereotyped and repetitive motor mannerisms”
You don’t often see conspicuous stereotyped and repetitive motor manner-
isms (called “stims’) in adults. People can be trained out of a stim even if the
training wasn’t formal and even if the AS was unidentified. For example, a
child may perform a certain type of hand flapping but his mother, father,
nanny, or teacher forces his hands to remain still by physical constraint.
The hand-flapping urge may transfer to foot tapping. The caretaker is less
inclined to get down on the floor to constrain the child’s feet and the foot
tapping meets less resistance. If you want to identify whether or not your
partner fits this trait, you may need to talk with your partner’s siblings,
parents, or childhood friends to see if they can recall any childhood repeti-
tive motor mannerisms.
156 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

In my husband’s case, he had several small stims as a child, but his


mother forced him to control the more obvious ones. Certain hand move-
ments were eliminated but are now manifested in less conspicuous hand
movements and eye rubbing. Often, he’ll rub his eyes for 15 minutes at a
time. The stims are still there but they have morphed to more acceptable
forms. To find out if the eye rubbing was a repetitive motor mannerism or
just a means of getting something out of his eye, I asked my husband why
he does it. He responded, “I don’t know.” Upon further prodding, I found
that it actually hurts his eyes sometimes, but he feels he needs to do it.
What are some other types of stims in adults? Knee bouncing, finger
tapping, toe tapping, twisting hair, twisting fingers, forehead hitting, teeth
grinding, blinking, twitching, and even complex whole body movements.
For example:
She twists her index fingers as if they are locked together.
Or:
He thumps himself on his forehead when he’s agitated.
There are many examples of repetitive motor mannerisms. How do they
impact a long-term relationship? Read on.

Implications and solutions: Mannerisms


“Stereotyped and repetitive motor mannerisms”
Often, by the time a person with AS is an adult, he has learned to control
the stim for a period of time, but as a live-in partner, you’ll probably have
the opportunity to see the stim sooner or later. The ability to control the
stim is a skill that can be strengthened with practice. In Echo R. Fling’s
book, Eating an Artichoke (2000), she explains how she taught her young
son to control his hand flapping so that he wouldn’t embarrass himself in
front of his friends. The process she followed was one of kindness and
compassion, helping her son gradually learn to control the behavior until
he could control it for significant periods of time.
In a long-term relationship, you can’t take on the mother/teacher role
without serious implications. It may be safest to turn the training over to a
professional and give yourself the latitude to be a support person only.
SECOND DIAGNOSTIC CRITERIA 157

First, determine whether or not the stim is merely a disturbance or if


your partner needs to stop it. Of course, this is subjective. My husband’s
eye rubbing used to make me anxious because I worried it would damage
his eyesight. A quick check in a few medical reference books and a few
pointed questions to an ophthalmologist revealed that the eye rubbing is
doing little harm. Now, when my husband rubs his eyes, I look the other
way and comfort myself with the thought that I have better things to
worry about.
What if the stims are a disturbance? An Aspie who experiences
multiple repetitive motor mannerisms of a more conspicuous nature may
need professional retraining. Your partner can receive help through a
physical therapist, occupational therapist, psychologist, or other profes-
sional who can give ideas for how to minimize the stim with a replacement
stim or general behavior.
An adult Aspie has probably already identified the safe places (often
home) and the unsafe places (everywhere else) for performing the stim.
When the Aspie returns home after a stressful day on the job, he may “go
berserk’:
His [AS] stims are toe tapping and knee bouncing. At work his toe taps
softly or his knee bounces gently. When he’s home, the movements are
bigger and his whole body is twitchy.
Or:
She [AS] tugs on her hair a funny way that looks like she’s pulling it out,
but she can usually resist uprooting it. I noticed the other day that when
she’s in public, she only twists her hair in a casual sort of way, but when
she’s home, it’s a pulling and tugging.
If you are unfamiliar with AS you may misinterpret the timing and inten-
sity of the Aspie’s behavior because it is the mirror opposite of what you
would expect. NTs will act nervous (performing actions that look like
stims) while they are in the situation that makes them nervous. Aspies often
learn to suppress their nervous stimming, only to let it out later at home. If
you judge an Aspie using NT rules, you would assume that the Aspie is
more stressed at home (the safe environment) than he is out in public (the
unsafe environment). This assumption is yet another example of how inap-
propriate it is to judge an Aspie by an NT yardstick.
158 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

The stim is affected by stress and can be minimized through certain


body stimulation exercises. Through a therapist, you may be able to
identify activities that will help the Aspie release tension and clear the
sensory confusion. Our favorite stress release is jumping on a trampoline.
If you and your Aspie partner have children, you have an automatic excuse
to own a trampoline. The physiological reaction of the body to this
jumping motion relieves stress quickly and effectively. Whether it’s
jumping on a trampoline, walking the dog, or listening to music with a
clearly identifiable beat, the therapist will probably recommend an activity
that has a predictable, repetitive pattern to replace the less productive stim.
AS adults find their own small stim-replacements over the years
(behaviors that satisfy the stim, but are less obvious). For example, my hus-
band’s stim is rubbing his eyes, but he is aware that he can’t do it at work, so
he has several stim-replacements: chewing on a toothpick, bending
paperclips, or playing with small objects. He has dozens of our children’s
toys all over his office that he can grab and manipulate during the day
when he is stressed and in need of a stim-replacement. Here are a few
stim-replacements that work well:
• Small play objects such as a squishy ball, small bean-filled ball,
or other hand-sized object that can be twirled, squished, moved
from hand to hand, or otherwise manipulated.
• Pliable objects such as putty, clay, or sticky substances such as a
small piece of tape.
• Brightly colored objects such as crystals, tinsel, colored paper,
shiny rocks, jewelry, pen-sized flashlights, or laser pointers.
• Everyday objects such as pins, paperclips, pencils, toothpicks, or
other small objects that can be easily acquired and
inconspicuously manipulated.
The Aspie may never outgrow the need for stims. One couple describes
their experience:
My better half [AS] can play with a child’s toy for hours on end. This
Christmas we gave up on regular gifts and gave him toys such as
spinning tops, crystal gadgets, prisms, and spiral twirling things. He’s
nearly 50 years old! He’s a brilliant engineer with many accolades to his
name, yet small, shiny objects entertain him.
SECOND DIAGNOSTIC CRITERIA 159

While the Aspie’s ability to marvel at a crystal may appear juvenile, there is
more to it. Digby Tantam (2000) explains:
Repetition seems to be intrinsically attractive to anyone with
autism. It has been speculated that this is a consequence of frontal
lobe abnormality, but it does not have the character of
perseveration. Most people find some satisfaction in regular
movement or regular sensory stimulation, for example, that
provided by music or dance. The social nature of these activities
makes them unappetizing to people with AS, but it may be that
they obtain a similar satisfaction from spinning tops and watching
the drum of a washing machine, or in other highly predictable
pursuits. The more intellectually able a person with AS is, the more
likely he or she is to find satisfaction in conceptual repetition (e.g.
making lists). (p.384)
The repetitive motor mannerism may serve many purposes: the Aspie may
be deep in scientific thought, engaging in a highly effective form of relax-
ation, or freeing up part of his mind to consider a bigger, more creative
solution to an unrelated dilemma. There’s no predicting what is going on
in a person’s mind, but we do know that the ability to discover ingenious
new solutions often appears as a simplistic, juvenile quest. Throughout
history, great insights have been gained from childish playing with simple
objects such as shiny rocks, bits of metal, or cast-off pieces of junk.
The dynamic principle of phantasy is “play”, which belongs also to
the child, and as such it appears to be inconsistent with the princi-
ple of serious work. But without this playing with phantasy no
creative work has ever yet come to birth.
C.G. Jung, Psychological Types

What it may look like: Parts of objects


“Persistent preoccupation with parts of objects”
One day I was snuggled up on the couch, rereading the diagnostic criteria
from the DSM-IV (American Psychiatric Association 1994, version 4). I
skimmed past this “persistent preoccupation” part of the diagnosis
thinking, “Nah, my husband doesn’t have that.” At the time, my children
160 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

were watching old home videos and I glanced up to see that my husband,
as videographer, zoomed in on ears, mouths, t-shirt logos, feet, and other
“parts” of larger “objects.” I couldn’t believe my eyes. Why was he video-
taping grandpa’s nose? Or his own toes? Why not zoom out to see his
sister rather than zoom in on her earrings or her hair clip? It seemed odd.
The more I looked around, the more I realized that he typically focused on
the parts of an object rather than the object itself. Other examples include:
Whenever I ask him [AS] to clean something, he’ll clean one particular
part of it, but not the whole thing. For example, I’ll ask him to clean the
family room and he’ll straighten the bookshelves (leaving dirty clothes,
magazines, and toys on the floor) then say it’s “done.”
Or:
I [AS] can’t seem to coordinate clothes. I’ll find a shirt and know that it’s
nice. Then I’ll find a pair of pants and know that they look good too.
When I put them both on, my wife says I look like an idiot and asks me
to change.
This “persistent preoccupation with parts of objects” is much more than a
simple focus on the parts rather than the whole. This particular way of
viewing the world leads to an inability to generalize. The commonly used
analogy is that two people are walking through a forest. One person is
capable of seeing both the individual trees and the forest as a whole. The
other person (the Aspie) sees an evergreen, an alder, an oak, etc. The Aspie
truly can’t see the forest for the trees. In this scenario, the Aspie doesn’t
generalize that the different types of trees are lumped into one category as
“trees” which are lumped into an even larger “forest.” The preoccupation
with the separate parts of the forest blinds him to the concept of “forest.”
Aspies are inclined to interpret the world as an array of discrete partic-
ulars, i.e. many separate objects. They see an object as an object, not as an
object related to something else. For example, an Aspie who is intrigued by
airplanes may view each airplane or type of airplane separately, but not rec-
ognize or lump together a casual, general category of airplanes. Each type
of plane is a separate entity in and of itself. As one wife explains:
He [AS] is an engineer and he has a rule that when he comes home at
5:10 and sits down to dinner at 5:15, we talk about his work. If I make a
sweeping statement about the planes, he becomes mildly agitated (just
talking about “airplanes” in general is a “sweeping statement” according
SECOND DIAGNOSTIC CRITERIA 161

to him). He relaxes when I call them by their proper names and recog-
nize the unique features of each one – the year it was built, the type of
engine used, etc.

Implications and solutions: Parts of objects


“Persistent preoccupation with parts of objects”
Although this topic seems simple, it can lead to problems both big and
small. Let’s look at a small problem that I run across nearly every day. An
issue page in my marriage journal explains:
I think I just figured out why he can’t help me clean the house. I asked
him to “please clean off the table.” He’ll remove only the silverware. I’ll
ask him again. He’ll remove the plates and cups. I’ll ask him to “please
finish” and he’ll say he did. But I look at the table and there are still
napkins, food containers, papers, miscellaneous stuff the children put
there, a kitchen towel, and a few other extras. I don’t think he can see
the table as a whole. For me, I see everything that needs to be cleaned
off, then a new tablecloth put on. If he can’t figure out how to clean off
the table, then of course cleaning the garage or cleaning out the attic are
going to be mind-boggling tasks.
Seeing the discrete particulars and not the whole is an AS ability. It can be
used for great purposes in many areas but may be an obvious detriment
when it comes to household chores and other tasks related to functioning
as a couple. Because an Aspie may be so preoccupied with the discrete par-
ticulars, he may be blinded to the interconnectivity of life. It may be frus-
trating to explain and/or justify something that seems to be an accepted
part of human interaction. For example:
How do I explain to him that it’s rude to comment on my aunt’s weight
gain? Or criticize me for working? Or tell our neighbor who is showing
off his shiny new sports car that it has a small mud spot on it? How do I
explain these things?
Everyone learns differently, but the AS brain responds to rules rather than
emotion (Asperger 1944, p.47 in Frith 1991). The Aspie may not need
elaborate explanations of the murky emotional pool that NTs swim in. One
wife explains her painless solution that helps her husband see the
interconnectivity of tasks in a way he can appreciate:
162 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I told him [AS]: “If we do __ and __ then we will spend the evening
doing what we want to do. If we don’t do __ and __ I will be very
unhappy by tonight and will start an argument because we will still have
work to do.”
I imagine most couples would cringe at this, considering it emotional
blackmail or a dictatorial effort to control one another. But we aren’t most
couples. We don’t say, “I’d like you to take out the trash. It would really
help me out.” Instead, we say, “It’s your job to take out the trash every night
before you go to bed.” State it as a logical rule and you may be more likely
to get the desired result.
Surprisingly, many Aspies aren’t the least bit offended by the
matter-of-fact approach. As Maxine Aston (2001), an AS couples
counselor, explains: “For those with Asperger Syndrome, rules and
boundaries must be very clear and precise. It should not be taken for
granted that your partner will understand automatically from the
beginning what is acceptable and what is not” (p.74). A statement of rule or
fact is easiest to process. As my Aspie husband has often said, “Why get
emotional about it?”
Because of the Aspie’s literal interpretation of words and desire for
explicit detail, careful phrasing of requests is important. Look at the fol-
lowing examples:
NT: Could you please turn off the radio?
AS: Yes. (Meaning that he is physically capable of doing so.)
Compared to an Aspie-speak request:
NT: Please turn off the radio.
AS: Sure. (Turns off the radio.)
Words such as “could,” “would,” and “should” have the potential to derail a
request. NTs are accustomed to using these words so as not to sound bossy.
A direct request may feel too forceful, so we couch it in softer phrasing
such as “Would you please…” Unfortunately, the more polite wording
could lead to impolite feelings between the two of you.
Let’s glance at a few easy, quick tips for working with a partner who
sees the discrete particulars instead of the whole: 1. don’t generalize – it
only confuses and frustrates you both; 2. be direct, honest and clear – say
exactly what you mean; 3. go straight to the main point – eliminate the
SECOND DIAGNOSTIC CRITERIA 163

meaningless words; 4. don’t go off on a tangent; and, most important, 5.


don’t assume anything. Your partner is probably a highly intelligent
person (Aspies are generally average to high intelligence), but a few gener-
alizations may send even a simple conversation into that netherworld of
incomprehensibility.
WEAK CENTRAL COHERENCE
NTs view the world as an interconnected web of people, actions, creations,
etc. We generalize principles and carry emotions from one concept to the
next. We use context to determine meaning and we create overlapping,
interrelated categories to help us understand the world better. This is
termed “strong central coherence.” People with AS are said to have “weak
central coherence” in that they don’t automatically see the connections
between things in the world. The differences between someone with
strong central coherence and someone with weak central coherence are
definable, but the problems that evolve from this discrepancy spread like
wildfire in an AS relationship.
It seems like our lives are one big confused argument. For example,
every weekend, we’re running around doing chores and he [AS] can’t
understand the “why” and the “what” of it all. I’ll explain to him that a
certain project needs to be done before 11 a.m. but he can’t see why. If I
explain to him, in explicit detail, that the project needs to be done
because lunch is at 11, soccer is at 12, groceries are at 2, yard work is at
3…he can get a vague grasp on the fact that certain activities are inter-
laced and they all depend on each other getting done on time. He
doesn’t see that pumping up the soccer ball needs to be done before we
take the kids to soccer practice. He doesn’t see how the two tasks
depend on each other.
While it may not work for everyone, it may be beneficial for you to give
your AS partner a synopsis of what you believe may happen in your shared
future…this is a form of mental hopscotch that he may not play without
your encouragement. My own husband, as brilliant as he is, doesn’t
consider matters of future importance such as wills or life insurance. On an
even shorter range, he doesn’t think about what we will be doing next year,
next week, not even later today. On one hand, it’s delightful that he
doesn’t worry about future events, but on the other hand, he rarely
prepares and doesn’t project into the future. For this reason, he usually
164 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

appreciates it when I tell him in a straightforward, loving, and honest way


that “X will happen if Y doesn’t get done first.”
On a good day, outlining the consequences works well for us both. On
a bad day, he resents it. At first, we couldn’t figure out why an Aspie would
resent being spoken to in Aspie-speak (clear, logical speech). We figured
that speaking directly and emotionlessly about facts and consequences
should not evoke a negative response, but it does. We have had many
discussions about this and we finally figured out why it sometimes
backfires. As he explained:
When you explain a consequence, I see you as the reason there is a con-
sequence, not the consequence as a separate entity. I know that the con-
sequence is a simple law of nature, but it emanates from you.
Associations are a vital element in forming images of each other and I need
to be careful what types of associations my partner makes about me. I
know how quickly and how securely those associations can become stuck.
In my research about AS, I was surprised at how differently the Aspie brain
records information. In the NT brain, we learn from our experiences and
build on previous knowledge in a certain way. My husband has tried to
explain to me how his Aspie brain records and retrieves information but we
never quite understood each other until we read the following passage by
Liane Holliday Willey (2001): “Trials and tribulations will not become
lessons learned, they will simply be memories that stand on their own with
little relationship to anything other than the day they occurred” (p.92).
With this explanation, we realized that yes, my Aspie husband does
remember events based on information that I would never think of remem-
bering. He remembers the stellar positioning of Venus and Mars on our
10-year anniversary while I remember the romantic dinner and the candle-
light. His memories are recorded differently and, because of this, they are
retrieved differently. As we communicate, memory retrieval differences
become obvious.
Just as a person with AS may not consider matters of future impor-
tance, he may also appear to disregard the past, which may appear as a poor
memory or a selective memory (Aston 2001, p.39). For example, you may
argue about whose turn it is to do the dishes and it may be the exact same
argument that you already won last week, but you’ll have it all over again
because your AS partner can’t generalize the solution of the previous
SECOND DIAGNOSTIC CRITERIA 165

argument to the current argument (Frith 1991, p.16). Apparently, people


with AS are “less able to learn from mistakes” (Attwood 1998, p.117). In
your home you may realize:
If he [AS] doesn’t see how last week’s argument relates to this week’s
argument, seeing that they are identical, then we will continue to have
the same circular argument.
At first glance, this issue is depressing – how awful to relive the same
argument. This facet of my adult life used to be a dark spot until it dawned
on me that there was an upside. Instead of leaving old arguments perma-
nently recorded as “arguments,” we had a second, third, and fourth chance
to work them out. An old movie called Groundhog Day helped me realize
that you can either curse the repetition or you can use these opportunities
for your benefit. In the movie, a man relives the same day over and over
again until he finally figures out how to win over a girl he loves. He tries
many approaches and finally, when he uses the appropriate approach, he
can progress past that day. We have found many groundhog days in our
home. We try again and again until we find a way out of the seemingly
endless arguments – when we find the Aspie-speak that gets through to
him and still makes sense to me.
Another potential implication of weak central coherence is that deci-
sions made as a couple may appear to be held up only by you, the NT
partner. It’s hard for me to remember that my partner isn’t purposefully
forgetting an agreement we worked hard to achieve. The problems
stemming from weak central coherence may be obvious, easy problems to
fix, or they may be exasperating, as in the following example:
My husband [AS] and I decided to use time-outs with our children and
he keeps forgetting about it. The kids are learning that they can get
away with more when they’re with Daddy. We agreed that if the kids
misbehave, they get a time-out, but he isn’t keeping up his end of the
bargain. We talked about time-outs for throwing food, ripping pages
out of books, and hitting each other. If the kids do anything besides
those three misbehaviors, he doesn’t know what to do. Do I really need
to list every single thing that qualifies as misbehavior? Our inability to
discipline our children is ripping our marriage apart and it will only get
worse as the children grow.
166 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

A person with strong central coherence is usually able to see the entire
scope of an issue, topic, or problem. This ability allows people to brain-
storm. For example:
He [AS] flounders when he hits a bump in his life. For me [NT], when I
have a problem, I take a step back from the problem and brainstorm for a
dozen or so solutions until I find one that works. If that one doesn’t
work, I back up again and try another. It’s like parallel parking. I back
up and retry, making minor adjustments until I get close enough to the
curb. He rams into the parking space – he sees the current problem and
only the current problem. He can’t brainstorm for solutions.
Although my AS husband can’t brainstorm, there are still parts of our lives
that require this skill, such as: how are we going to pay the bills this
month? Or what should we do for Christmas this year? I have often said to
my Aspie partner, “Look, what we’re doing isn’t working. Let’s brainstorm
for other ideas. How about we ____, or ___, or ___?” If you approach the
situation in an open-minded, friendly manner and provide the brainstorm-
ing skills yourself, you’ll probably be more likely to get satisfactory results.
If defensiveness from either party enters into the equation, it won’t work.
One friend explains how she keeps herself in line when explaining an issue
such as this (i.e. something that appears to NTs as too basic):
When I have to explain something that is mind-numbingly dull or if I
feel that I’m about ready to lose my temper, I mutter under my breath,
“Professional, professional…” A professional is someone who is calm,
strong, clear, concise, and gets to the point. A professional is someone
who is skilled enough to handle difficult situations and who sees value
in building up her friends and colleagues.
Despite all the difficulties weak central coherence may bring to a relation-
ship, we don’t need to use it as a derogatory term. It was originally classi-
fied as a lesser term signifying impairment, but we’re beginning to see that
it may be advantageous. For example, it’s easier to contain the bad parts of
life in little chunks. Although we call it “weak” central coherence, it may
allow people to remain stronger in the face of opposition.
Weak central coherence is a cognitive style. It isn’t bad; it isn’t wrong.
Being able to focus intensely may have the price tag of not being able to
generalize, brainstorm, or see the big picture, but no matter how high the
price, we have what we have and we can choose to make the best of it.
SECOND DIAGNOSTIC CRITERIA 167

Weak central coherence can be used as a skill. Great creativity has sprung
from this particular way of seeing the world. The benefits lie in the
person’s ability to walk into a forest and not overlook the beauty of each
individual tree.
Some theorize that this ability to see each individual tree is an unusual
ability to see the details in a novel way. Aspies tend to have unusually
strong abilities with details. Some Aspies remember dates exceptionally
well, some remember strings of programming code, some recall complete
dialogues verbatim from 20 years ago – peculiar types of details that stick
in an Aspie’s brain. I often pull on my partner’s strengths by asking him,
“Honey, please remember that ___.” His is a walking, talking computer. He
doesn’t mind that I ask him to use his strengths for my benefit because he
knows how often I use my strengths for his benefit too.
If we had a keen vision of all that is ordinary in human life, it
would be like hearing the grass grow or the squirrel’s heart beat,
and we should die of that roar which is the other side of silence.
George Eliot, Middlemarch
CHAPTER 6

Third Diagnostic Criteria


Disturbs Occupational Functioning
and Other Areas

C. The disturbance causes clinically significant impairment in


social, occupational, or other important areas of
functioning.
This part of the diagnosis is so broad that it’s difficult to pin down – it
covers everything from job difficulties to how well an Aspie can function
at a social gathering. Let’s break this part of the diagnosis into three simple
sections: social, occupational, and other, i.e. the slippery issues that often
dance around the edges of AS.

What it may look like: Social


“The disturbance causes clinically significant impairment in
social…functioning”
An AS adult’s social functioning may look like this:
We were at a party the other night and I just sat back and watched.
He [AS] can’t seem to join in the conversation. He tried once but he
could only talk about computers and when he did talk about them,
he droned on and on.

169
170 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

But it can also look like this:


She [AS] just stands near the wall, with her body turned so that everyone
will think she’s uninterested in participating.
The social functioning of an Aspie can’t be classified as one type. There are
many ways to “malfunction” in society. The only specification the diagno-
sis can give regarding AS social functioning is that the Aspie experiences
unusually poor social interaction. Here’s one family’s example that shows
a lack of social functioning within the family structure:
Since my husband [AS] acts a lot like my friend’s husbands, I forget that
he can’t take care of the children. I’ll ask him to bathe the baby and he’ll
put the baby in scalding hot water because he can’t sense temperature
well. Or I’ll ask him to help the kids with their homework. He’ll just sit
beside them because he doesn’t know what to do. Sooner or later, he’ll
wander off after not helping the kids at all. I’ll ask him to help me figure
out finances or scheduling issues and he gives me a blank stare in return.
The social impairment may be easily visible in how an AS parent bonds
with his children. For instance, the AS parent may not hug, kiss, or other-
wise show affection. For example:
When the children touch me [AS] lightly it all feels like spiders crawling
on my skin.
Sensory issues may dictate the level of interaction and type of play the
Aspie parent can engage in with his children. There also may be few
displays of affection as evidenced in this surprisingly common Aspie-style
expression:
I [AS] already told you I love you. Why would I tell you again?
There’s also a possibility that the “social functioning impairment” may be
evidenced in relations with the extended family:
Could it be common for Aspies not to relate normally with their parents
or siblings? Even though his family was wonderfully loving, they still
never developed strong familial relations. My husband [AS] has never
reached out to his birth family even though they are a normal, loving
family. I was the one encouraging (forcing) the family to get together,
but he never initiated it and only occasionally enjoyed contact with his
parents and siblings.
THIRD DIAGNOSTIC CRITERIA 171

Now that we’re all thoroughly depressed about the impairment in social
functioning both in and out of the home, let’s look at some implications
and potential solutions.

Implications and solutions: Social


“The disturbance causes clinically significant impairment in
social…functioning”
To understand how social functioning is impaired in people with AS, we
must look at the underlying reasons. There is a fundamental difference
between how AS and NT individuals approach social situations. Here’s a
good example:
NT: Looks forward to a party, enjoys it, and is rewarded by the human
interaction. Is emotionally filled by a social event.
AS: Dreads a party, shows anxiety, lack of social skill, and may try to
avoid social interaction rather than seek it out. Is emotionally depleted
by a social event.
Both my husband and I have searched for answers to this tricky dilemma.
We have found that if we managed a few social gatherings well, it led to
increased confidence, which is something we desperately needed as a
couple.
Chess, the classic board game, led us to the answers to our social func-
tioning issues. In chess, when presented with a difficult situation such as a
checkmate, you have three basic choices: retreat (avoid the situation), block
(control the situation), or attack (anticipate the situation). Here’s an
example of each:
• Retreat (avoid the social situation): if the social event isn’t too
important, we opt out of it. We are creative people and can find
just as much enjoyment elsewhere. The retreat option is almost
always my husband’s first choice.
• Block (control the social situation): if we must go to the social
event, we consciously control as much of it as we can. We agree
to arrive late and/or leave early, thus setting a predictable
schedule. If a social event occurs spontaneously, such as seeing
a friend in public, we have pre-agreed-upon rules such as the
172 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

“Five-Minute Max Rule” and the “Wander Rule” (it’s OK if he


wanders off when I can’t keep conversations to less than five
minutes). These give my Aspie husband a sense of control over
situations that would otherwise appear out of control to him.
• Attack (anticipate the social situation): before we go to a social
event, we take a strong preemptive strike against the
foreseeable problems. If it is a social gathering, we script the
important dialogues with the key people who will be there. We
deal with sensory issues ahead of time, making sure that he is
well rested and has an escape plan. We discuss and even
practice portions of the event before we go so he will be
prepared. We aggressively attack the problems before they
occur.
But, as in the game of chess, even with the best strategies we still may lose
the King.

What it may look like: Occupational


“The disturbance causes clinically significant impairment
in…occupational…functioning”
This disturbance will probably be one of the most obvious – since our
careers occupy the majority of our waking hours. The occupational
impairment can occur on many levels. For example:
On one hand, he [AS] earns a fine living. We’re fed and clothed and
we’ve never gone without. On the other hand, he’ll never advance. He
has absolutely no motivation to climb any social ladders at his work.
Or:
She [AS] was fired more than two years ago and hasn’t been able to find
a job since.
Occupational difficulties lie first in the interview process; an extremely
difficult procedure for an Aspie. One woman explained:
He [AS] doesn’t interview well, so finding a new job is going to be very
difficult. One night, we role-played what he would say in an interview. I
said, “Do you know many computer languages?” He said, “Yes.” I
prompted him that he should then list which ones he knows, selling
THIRD DIAGNOSTIC CRITERIA 173

himself to the employer. He couldn’t spontaneously offer information


so I asked him, “Do you know C++?” He said, “A little.” I couldn’t stifle
the “What?” He’s one of the best and most efficient C++ programmers
in the field and he says “a little”?
Occupational troubles can range from unusual difficulty attaining appro-
priate employment to difficulties maintaining employment. If your partner
suffers from difficulties finding appropriate employment, you’ll need to
seek professional guidance. As Temple Grandin (1999) points out: “A
person with Asperger’s syndrome or autism has to compensate for poor
social skills by making themselves so good in a specialized field that
people will be willing to ‘buy’ their skill even though social skills are
poor.”

Implications and solutions: Occupational


“The disturbance causes clinically significant impairment
in…occupational…functioning”
The Aspie may have an extraordinarily difficult task in finding appropriate
employment. This is a serious issue and all I can offer here are a few
anecdotal solutions. One solution that has worked for some Aspies is to
retreat to a comfortable home office. Nearly all the features of the office
can be modified to fit the Aspie’s ideal comfort level. Temperature, sound,
color of the surroundings, everything can be modified without input from
a boss or colleagues. It can be a workable solution for someone who needs
significant modifications. For example:

I can’t seem to work in an office. It makes me so nervous to see all the


walls and people. I found out about this inability when I first started
interviewing for jobs when I graduated from college. I only went to four
interviews before I realized that it was useless. Finding the office, going
up the elevator, winding my way through the maze-like offices was all
too much, far too much. In nearly every interview, I had trouble breath-
ing, let alone thinking clearly! I knew I’d never be one of the guinea pigs
in an office, or worse, a cubicle.
So, now I’m a successful freelance technical writer and editor. I have
my own home office that fits me perfectly. Every now and then I’ll meet
with a client in their office, but I’m only there for a short period of time.
174 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I think the interviews were so difficult because I knew that a job would
lead me through that awful guinea pig maze every day.

Thankfully, telecommuting is becoming more and more acceptable and


may be a solution that allows the Aspie to reduce human contact to a more
palatable, manageable level.
Another solution is to find the ideal niche job. Easier said than done!
For example, if your AS partner enjoys programming but you think he
should be in a more upwardly mobile position, don’t encourage him to do
something he won’t enjoy. The repercussions might be far more devastat-
ing than our NT expectations dictate. Encourage your AS partner to
choose his interest, then go with it.
Finding just the right job isn’t easy. It may take hundreds of résumés,
countless hours of agony, and far too much emotional energy. As an initial
step, the résumé should be reviewed by a professional résumé writing
service. A poor résumé can cause undue rejection:
My husband [AS] sent out over a hundred résumés with no response. He
was a fresh college grad with ridiculously high scores. Who wouldn’t
want to hire him? Once I looked at his résumé, I understood why. The
qualifications, as great as they were, were muddled underneath horrible
grammar and inappropriate details. I gently told him that it might need
some work and within half an hour, I had redone it. The next batch of
résumés got a fantastic response.
Once the résumé is decent, then interviewing abilities may be addressed.
Listen to how one couple worked through the interviewing process.
Every time my husband [AS] goes out to an interview, we role-play the
interview. I learned that he has to do this in order to survive the inter-
view. Now I know that it’s called “scripting.” I tell him exactly what to
say when a particular question is asked. If we go over enough questions,
he can make it through most of the interview. If the interviewer asks
him a question that we haven’t reviewed, he’ll say, “I don’t know,” even
if he does have an idea of an answer. He just can’t think of answers on
the spot and he can’t give a partial answer. He has either practiced the
answer ahead of time or he can’t give an answer at all.
Books such as Roger Meyer’s (2001) Asperger Syndrome Employment
Workbook: An Employment Workbook for Adults with Asperger Syndrome will
THIRD DIAGNOSTIC CRITERIA 175

undoubtedly prove valuable to your Aspie partner as he searches for


appropriate employment.

What it may look like: Sensory dysfunction


“The disturbance causes clinically significant impairment
in… other important areas of functioning”
Sensory malfunction can cause a person to experience severe reactions to
stimuli that most people wouldn’t even notice.
Fluorescent lights blind me. High-pitched noises deafen me. A soft
touch agitates me…
Although sensory issues are not a necessary part of the AS diagnosis, they
are often a part of an Aspie’s life (Attwood 1998, p.129). Let’s look at them
one by one.

Touch: I mention this sensory area first because it may be the most
important one in an intimate relationship. A person can avoid
touch with nearly everyone except the person they have chosen as
a long-term companion. How might a touch sensitivity affect your
lives?
Non-AS: She always recoils when I touch her.
AS: Soft touch feels creepy crawly on my skin. A hard touch is much
easier to handle.

Sound: when you create a home with someone, sound issues may
begin to crop up, especially if you have chosen to have children.
Our children were unusually loud toddlers. In order to run off
extra energy they would run whooping, hollering, giggling, and
shrieking. Their noises could not be confined to any single area of
the home. Fortunately, my husband’s sound sensitivities are not
related to volume – they are related to repetition. He can handle
the decibel level that our children and half a dozen of their friends
can inflict on our eardrums, but he cannot handle a repetitious
chanting such as the same rhyme, jingle, or silly word repeated
over and over. For example, when the children would chant “silly
176 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

sassafrassy pants” with a distinct repetitive rhythm it would drive


my Aspie husband to near insanity. Let’s look at other sound sensi-
tivities:
He [AS] cannot hear medium voices well. He can hear soft sounds and
loud sounds, but the in-between is an ocean where all the sounds fall
apart.
Or:
Anything over a certain decibel level sends me [AS] running for cover.
Anything that pops (even opening a can of soda) is like a firecracker set
off in my ear.
Or:
It drives me nuts when someone talks too softly. Quiet sounds are
extremely frustrating.
Or:
I can’t use a cell phone. I don’t think my ears can separate the static from
the voices.

Sight: some Aspies have visual sensitivities. Certain colors or lights


may be difficult to handle visually. For example:
Fluorescent lights make it so I [AS] can barely see.
Or:
Blue makes me calm. White makes me freeze. Yellow shuts down my
visual abilities. Green makes me nauseous. Red terrifies me.

Smell: certain smells may overwhelm your Aspie partner even


though they seem reasonable to you. For example:
If he doesn’t shower daily, I [AS] can’t get anywhere near him. I am
extremely sensitive to body odors.
Or:
I [AS] wish that we could outlaw strong perfumes just like we prohibit
smoking in public places. Perfume makes me physically ill.

Taste: sensitivities regarding taste may make home-cooked meals


difficult and dinners out nearly impossible. Personally, I gave up
THIRD DIAGNOSTIC CRITERIA 177

cooking with my husband only a few weeks after we married. I


realized that he couldn’t identify hunger until a few minutes
before it hit, and he needed to eat very shortly after feeling the
hunger. Since he is only hungry for one specific food item at the
moment of hunger, even a full-time personal chef would have a
hard time meeting his culinary needs. Fortunately, he eats a single
meal a day which he can usually find at a nearby restaurant, deli, or
fast food place. How might other Aspies’ taste sensitivities appear?
A few examples:
We have a very limited number of dinner dishes that she [AS] can eat. It
can’t be too salty, too sweet, and it must be just the right temperature.
Needless to say, she does the cooking.
Or:
She [AS] forgets to eat. She’ll be busy doing other things and forget to
feed the kids too. She says it’s because she doesn’t enjoy eating and that
it’s a chore.

Implications and solutions: Sensory dysfunction


“The disturbance causes clinically significant impairment in…other
important areas of functioning”

Touch: the implications almost go without saying. If your partner has


sensory dysfunctions, they will impact the physical, intimate moments in
your lives together, creating some of the most serious problems mentioned
so far. A mild example:
Cuddling gives me that grounded feeling of knowing that he [AS] is
there for me and can comfort me. I need cuddling in order to feel loved
and appreciated. He can’t cuddle because it’s “too close” for him.
Another example:
I [AS] can’t stand it when she touches me. I have to be mentally prepared
for a touch first. I need to brace for it.
Touch sensitivities may be the number one most important area for an
AS-linked couple as physical touch is so important to the health of an
intimate relationship. I believe that Liane Holliday Willey (2001) came up
178 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

with the ideal mantra for dealing with sensory dysfunction in a relation-
ship: “…work to find a compromise that will harm no one” (p.92). This is a
superb mantra for us all.

Sound: once we identify the sound sensitivities, we can work around them
more easily. We can also recognize that voice volume, pitch, or intonation
may be perceived as critical or an attack. Sounds may be poorly perceived
and your Aspie partner may misinterpret the tone of your voice. If you are a
little annoyed, he may think you’re furious, or he may not hear it at all.
Your Aspie partner may be functionally deaf to certain sounds. Being
aware of the sound dysfunction is the first step in working around it.
A sound dysfunction can impact your relationship by making it diffi-
cult for your partner to hear you or, on the other hand, it may be that your
partner hears you too well. If your partner has exceptionally sensitive
hearing he may be able to hear you when you think he’s out of earshot.
Also, your partner may be able to hear more than just your words. My Aspie
husband has an unusual perception of sounds. One example in my hus-
band’s past helped us see how my husband’s hearing might be a bit out of
the ordinary. When he was in school as a teen, the class played a game
where one person sat in a chair facing away from the chalkboard while the
teacher wrote a word on the board. The students facing the board were
supposed to give clues to the word. When it was my husband’s turn, he
guessed the word immediately without any clues. Although the entire class
had seen him staring forward while the word was being written on the
chalkboard, they were still convinced that he had somehow cheated. He
had simply listened to the sound of the chalk as the word was being
written and was able to guess the shapes of the letters, therefore the word.
All it took was a little concentration, Aspie logic, and sensitive hearing. I
am aware of my husband’s sound sensitivities and we try to use this knowl-
edge to our advantage. For example, he paid attention to our children’s
cries when they were little and was able to interpret their cries more accu-
rately than a skilled pediatrician.

Sight: the implications of visual sensory issues can be insidious in their


nature. If your Aspie partner cannot identify or explain the visual sensory
dysfunctions, they may lead to unnecessary troubles. For example, what if
you painted your bedroom a whitish beige but that color shuts down your
THIRD DIAGNOSTIC CRITERIA 179

partner’s senses? You may notice that your partner has all of a sudden shut
down whenever you go into the bedroom. You may believe that he has
lost interest in you or that there are sexual problems between the two of
you. Your partner may not be able to identify or voice the reasons for dis-
comfort without knowledge of the sensory dysfunctions at play. You both
may believe that the problems are sexual rather than a simple mistake in
home decorating.

Smell: if your Aspie partner has olfactory sensitivities, then being aware of
the sensitivity will help both of you identify problems before they get out
of hand. Certain smells may set your partner off balance and you may not
know why until you identify the root cause. For example:
Last Monday, he [AS] came home from work and was an absolute bear. I
questioned him extensively about work and nothing unusual had
happened. I couldn’t figure out why he was being so ornery. He wasn’t
sick, didn’t have a headache – everything should have been fine. It turns
out that the new recipe I had tried that day had an odd smell to it that
really bothered him. We aired out the house and he was fine.

Taste: the implications of taste sensitivities may spread over a surprisingly


large portion of your time together as meals take chunks out of the
morning, afternoon, and evening of every day. Unfortunately, the only suc-
cessful solution I’ve heard of to date is the following, from a family who
has learned to work around this issue:
Mealtimes could rule our family if we let them. My husband [AS] and
my son [AS] are both so finicky that mealtimes were a trigger point for
everyone’s temper. We decided that for the good of the family, we
wouldn’t eat together anymore. We each make our own food. If
anybody wants a particular food item, they write it on the grocery list.
Groceries are purchased twice a week. People eat when they want to. It
took a lot of work to train my son and my husband to make their own
meals, but through teaching and practice they have now become
self-sufficient (our son is 12 years old and my husband is 39 now).
Sometimes we end up eating at the same time but not always. I don’t see
it as giving up; I see it as working around an unsolvable problem.
Families usually spend quality time together during meals but, because
of our family’s problems, we couldn’t. We just couldn’t do it. Instead, we
play a game every night or do something fun together. We have to com-
pensate.
180 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

MELTDOWNS
In your exploration of AS, you will undoubtedly come across the term
“meltdown.” In children, it is similar to a tantrum where the child loses
control, screaming, crying, thrashing about on the floor, or punching
things near him. A meltdown is more severe than a tantrum in that the
child cannot stop it or control it. As the child grows, he encounters parents,
teachers, siblings, or others who react to the meltdowns in such a way that
it slowly changes the child’s behavior. By the time the child is an adult, the
meltdowns have probably morphed into another, less recognizable form,
but they may be just as destructive as the childhood version of thrashing
and crying.
What does a meltdown look like in an adult? It can appear as a burst of
anger, an emotional and physical shutdown, obsessive behavior, a vengeful
act, out-of-control crying, or any other outlet the Aspie has found that still
releases the stress. A meltdown can appear as a quick burst, but it can also
simmer for hours, erupting later at some minor incident. Meltdowns can be
tricky and their main identifier is that the person is out of control. For
example:
He [AS] had a favorite pair of jeans that he had worn since college. They
were falling apart so I threw them away. When he found out, he became
whiney and irrational. I tried to talk with him, but it just got worse and
worse. He lay on the sofa and moaned about it for hours.
Or:
If she [AS] misinterprets something I say, she can take the idea and run
with it. She obsesses, stresses, cries, and babbles. It doesn’t last for long,
but it can happen anytime, anyplace. I tease her that she has PPMS (per-
manent premenstrual syndrome) but of course she doesn’t think it’s
funny.
Meltdowns occur for many reasons, one being that the Aspie does not have
the complex communicative filter the rest of us do. An Aspie’s brain can’t
filter out the irrelevant information from the relevant information, thus he
is flooded with excessive input. As my Aspie children visualize it, “He
blows a socket.”
Perhaps the way an adult Aspie acts out the meltdown process is
influenced by incidents that happened in childhood. For example, if the
child had kicking, screaming meltdown on the floor and a dog came along
THIRD DIAGNOSTIC CRITERIA 181

and licked him/attacked him, the child may have a permanent fear of
having a meltdown on the floor. The child then self-adjusts to some sort of
standing or running meltdown. Over the years, the person learns what
works and what doesn’t. Sometimes the meltdown process is derailed and
becomes especially difficult to identify in the adult form. Listen to one
Aspie who finally recognized his meltdowns for what they are:
When I was a little kid, I had meltdowns where I broke things and I hurt
myself. One day, when I was six, I had a really bad one. My mom came
in my room and lost her temper… I knew that I never wanted that to
happen again. I remember the meltdown as if it was a movie in surround
sound in my head. Looking back at it I can see that that was the day I
started to internalize the pain. Whenever I feel a meltdown welling up, I
turn inward and get really quiet and sad. It feels like my soul is breaking.
Meltdowns come in many shapes and sizes. Most experts agree that melt-
downs are a necessary part of stress relief (Attwood 1998; Holliday Willey
2001). I like the analogy of meltdowns as storms. They build up when
certain factors combine and pressures need to be released. They can’t be
turned off – they are a part of nature. I can usually see a storm brewing in
my Aspie partner. I know what is going to happen because I’ve lived with
him long enough to know how he reacts to certain things. There will
always be occasional storms – some are drizzle and some are lightning.
There will always be an end to the storm and there will always be clear
skies afterwards. I know what precipitates the storms (family reunions,
outings, social events) so I can build my own sort of weather forecast.
Here’s an optimistic view of a meltdown:
A meltdown is what happens after I [AS] have had too much fun! Too
much sensory input, too much information, and my brain goes off in all
different directions until I can’t even form a coherent thought. For me,
it’s not dangerous and I can tell when it’s coming. It’s my
overload-meter.
What can we do when our partner has a meltdown? Stay away? Seek pro-
fessional help? Hide all sharp objects? One wife explains how she helps
her Aspie husband:
My husband is calm, quiet, and kind. He wouldn’t hurt a fly, but every
now and then he transforms into a monster. He yells, punches holes in
the walls, and does everything within his power to keep from hitting
182 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

me. It only happens once a month or so, and it doesn’t last long, but it’s
awful when it does happen. I have learned to leave the house until he’s
done. He knows he’s out of control. He’s embarrassed by it but there
doesn’t seem to be any way to channel the intensity without it
becoming a problem. For a while, I told him that punching holes in the
walls was unacceptable and he needed to deal with me directly. Bad
idea. Instead of punching a hole in the wall, he’d punch a hole in me. A
few bruises later, I went back to letting him release his anger in his own
way. A friend told me to go out shopping every time he had a meltdown
and that’s exactly what I do. On my way out the door, I’ll tell him, “This
is going to cost you.” It sounds silly, but what’s important is that at end
the day neither of us feels cheated. I feel like I’ve successfully managed a
difficult situation and we’re both glad that we’ve minimized the
damage.
Some Aspies believe that they cannot stop a meltdown once it has started,
while some try to stop or minimize the negative effects. If your partner
seeks help in dealing with these difficult moments, you can offer ideas for
“meltdown management” strategies. Usually a therapist is a wonderful
resource for brainstorming for strategies that will help someone deal with
a meltdown. For example:
When he [AS] has a meltdown, I can’t talk with him (I’m usually pretty
mad at the time too). Plus, I’m not his therapist – he should be able to
figure this out on his own. We wrote out a sheet of things he can do to
lessen the meltdown. He sits still for a few minutes, watches TV, drinks a
big glass of ice water, works on something in the garage, plays a fighting
game on the computer or chooses from a dozen other options. He has to
look at the sheet. He can’t remember these things without seeing them
in written form.
I learned the hard way the rule that says: once your partner has found a tool
that works, let him use it. Here’s a journal entry that tells all:
It seems like every time somebody comes over (especially when family
is here) he disappears to the computer room for 15 to 20 minutes at a
time. Why is he avoiding us? Are we really that bad? Maybe he’s just
trying to cope with the stress of the situation. I’ve forced him to stay
with us a few times and the negative energy just oozes out some other
way. I always regret it. If I let him disappear for a short while, he comes
back rejuvenated, ready to go on pretending to have fun.
THIRD DIAGNOSTIC CRITERIA 183

One of the most commonly cited strategies that I’ve read about is to listen
to music:
Whenever she [AS] is heading for a meltdown, I lead her to her favorite
reclining chair, put on a CD of classical music, and gently put the head-
phones on her head for her. She falls asleep within 10 to 15 minutes
and, when she comes to, she’s back to her balanced self.
Look for strategies that will help your partner constructively channel the
anger, energy, frustration, and other emotions he is feeling away from
family members and into an activity with beneficial side effects.
CHAPTER 7

Fourth Diagnostic Criteria


No Significant Delay in Language

D. There is no clinically significant general delay in language


(e.g. single words used by age two years, communicative
phrases used by age three years).

What it may look like: Language


“There is no clinically significant general delay in language”
It’s ironic that Aspies have no clinically significant delay in their language
development, yet language becomes one of the biggest, most insurmount-
able walls in their adult long-term relationships. At first glance, the
diagnosis offers us no answers. This “no…delay” problem is essentially a
lack of a problem. How do you treat a lack of a problem?
Throughout childhood, the Aspie’s general language abilities may or
may not send up red flags for the educators, parents, or other adults who
are tracking the child’s progress. People may notice odd speech, poor
pragmatics, incorrect grammar, or atrocious spelling, but the language dif-
ficulties may not amount to much. There may be no red flags at all. Therein
lies the pitfall. The relatively normal language development tricks us into
believing that the Aspie’s communication patterns are like those of
everyone else. For example:

185
186 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I [AS] can communicate fine with others at work, in the community,


nearly everywhere. No one would ever guess that I have a disability. As
someone gets to know me, they perceive something I do as rude or
selfish and they are hurt and offended. They can’t understand that I
have a disability.
The problem with this example is that the person with AS did not intend to
offend. There is a world of difference between a person consciously inflict-
ing hurt and a person who cannot anticipate or repair an offense.
As a generalization, we assume that people’s abilities are consistent. If
they can speak clearly, they must be intelligent. If they are intelligent, they
should be able to figure out x, y, and z. But people with autism have
“islands of ability,” areas where they show remarkable intelligence.
Contrast this to areas where functionality is low enough to classify them as
“disabled.” As Hans Asperger (1944) explained: “Clearly, it is possible to
consider such individuals both as child prodigies and as imbeciles with
ample justification” (Frith 1991, p.46). It’s a matter of extremes – an ability
to speak fluently about high-level topics, yet an inability to manage
smaller, simple conversations that are intuitive to others. One NT partner
explains:
She [AS] has great verbal abilities with her colleagues, but when we go
beyond the standard relay of technical information to more relaxed con-
versations such as cocktail party chatting or romantic dialogue, she’s at a
complete loss. She can’t form ideas or words around basic, everyday
concepts. It’s ironic that someone so eloquent when talking about her
profession can be so phenomenally amateur at basic speech.
Often, Aspies will be able to speak about their area of intense interest,
whether it’s trains or computers or napkin folding, but their ability to hold
other types of conversation is limited.
SUCCINCT SPEECH
Although Aspies can talk endlessly about their current obsession, talking
about other topics may be awkward. They may keep their speech succinct
and to the point. A common Aspie mantra:
I only speak when it’s necessary.
FOURTH DIAGNOSTIC CRITERIA 187

From another angle:


I don’t speak for the sake of speaking.
Speaking in a succinct manner may not be the most romantic or friendly
way to engage in conversation, but it’s also highly useful. One woman
explains:
My husband [AS] has mastered the art form of using as few words as
possible. I have good English skills and I have analyzed his sentences to
see if there is a shorter way to say what he said. Invariably, I will find that
he has used the absolute minimum number of words to convey a partic-
ular message. I tried learning his succinct speech style because I know
there are many skills he can learn from me and many skills I can learn
from him. Today a lady from our insurance company called, wanting to
know information about a claim that had been made. Instead of talking
like I normally do, I used the succinct speech style I was practicing with
my husband. It worked wonderfully! What would have normally been a
lengthy phone call was over in two minutes. The information was
conveyed with precision and clarity. The insurance lady was able to
maintain professionalism, get directly to the point, and there was no
longer any confusion regarding our insurance claim. I plan on using my
husband’s speech skills in other appropriate areas. The level of clarity
felt so good.
Of course, there are areas where succinct speech may get you into trouble.
For example, when you are at a funeral, people expect you to express con-
dolences, no matter how many times they have been said, regardless of
whether you feel like expressing them or not. It’s a social rule. These are
the areas where scripting comes in handy. You can help your Aspie partner
through these situations by giving him ideas for what to say or by remind-
ing him that succinct speech will be perceived as rude.
LITTLE PROFESSORS
Children with AS are often called “little professors” because their speech
can be stilted, pedantic, and just plain “odd” for a child (Asperger 1944,
p.39 in Frith 1991). People may assume that the child is highly intelligent
because of his speech. While higher than average intelligence often corre-
lates with AS, the assumption that a person is highly intelligent carries
some unwelcome side effects. For example:
188 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

My husband and I met at work… He spoke so eloquently about astron-


omy. I fell in love with his marvelous ability to put me in a state of awe.
We’ve been together three years now and I’m finding out that he has
trouble with nearly every single small task in his daily life. He cannot do
laundry. He cannot cook. He cannot deal with anything spur of the
moment. How could someone so intelligent, someone who is able to
wrap his mind around the wonders of the universe, how could he not
figure out how to make macaroni and cheese?
Aspies grow up with a gap between what is expected and what is possible.
If an eight-year-old Aspie boy can talk about electronics on the level of a
skilled professional, then he must be brilliant! Hallelujah! The parents
rejoice. Their little genius child will afford them a lovely retirement
someday. Unfortunately, the parents find out that their prodigy is often
bullied, picked on, and may or may not get good grades at school – the
indicators of genius are only momentary glimpses. What’s wrong?
As the child grows, this annoying gap only widens, heightening the
tension between what people think he is capable of and what is within his
comfort zone. He may be pushed, pulled, asked to stretch far beyond any
abilities he possesses or wishes to possess. Listen in to one mother of an
Aspie male talking to her son’s wife:
You know I had his IQ tested when he [AS] was 10. He’s a genius. He
can do anything he puts his mind to. He’s just so darn stubborn. He’ll
never amount to much if he doesn’t learn to put his talents to good use. I
always told him, “You can do anything you put your mind to.”
While it’s wonderful for parents to have high hopes for their children, it
may put an unnecessarily heavy burden on a child who can’t or doesn’t ask
for help with his hidden disability. When an Aspie child who interprets
things literally is told, “You can do anything,” the child believes it 100
percent, no exceptions. The child thinks he can fly if he just tries hard
enough when he jumps off the countertop. The Aspie child struggles with
the monstrous discrepancy between ability and performance, between
brilliance in one area and disability in other areas. One mother of a child
with AS explained her experience:
Several years ago, before we even heard about Asperger Syndrome, my
son’s teacher commented on how he struggles in the classroom. She
insinuated that he is not too smart, possibly mentally retarded. We
finally pushed to have him tested. The tests showed that he is of genius
FOURTH DIAGNOSTIC CRITERIA 189

intelligence, super high scores. The teacher’s comment: “I didn’t know


he was smart!”
Assumptions about an Aspie’s abilities may contribute greatly to weak
self-worth in the adult years. The following story illustrates the “professor
assumption” in action:
My husband is an Aspie. He can explain the most intricate elec-
tronics but can’t take out the trash. He just doesn’t care about our
home, our family, or anything related to us. How can he be so
involved in his hobbies yet not find time for us?
The assumptions of aptitude provide the marital partners with a brick wall
built of misjudgments, often topped off with dislike, even hatred. There is
a vicious cycle – the Aspie is highly intelligent, therefore capable of great
things. If the Aspie does not do the basic things to build the foundation of
home, he does not care about the home. Ironically, these assumptions go in
a direction that is entirely off the map for the Aspie. If you sit down and
have an honest conversation with your Aspie partner, you may reveal
workable solutions, as the following couple did:

I used to make all sorts of assumptions about my [AS] husband. Now I


know better. One day when my back was about to break I asked him
straight out, “Why can’t you do the simple jobs around the house, but
you can do whatever you want to do when you want to do it?” I was
steaming mad and I persisted until I got some answers. The answers sur-
prised me.
I found out that my husband had never prioritized. He had never
thought about why he does what he does. He just does whatever feels
right to him at the moment. How had he skipped that important step in
becoming an adult?

This woman took the time to draw out how she saw her priorities and how
she viewed the natural progression of tasks. She did this while stewing
over the situation and ended up doodling pictures by each one: a house, a
plate, a child, and a computer. The pictures proved to be an important
visual.
190 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Priorities:
1. clean house
2. food on the table
3. kids cared for
4. hobbies.
This woman continued to explain:
I dropped the list on his lap and stomped out. I was shocked to see a
noticeable, immediate improvement. He simply adopted the same list I
had. He now had an order to activities when he came home. He glanced
around the house, picked up a few items until it was as clean as he liked
it, then he checked to see if anything was being made for dinner (if I
wasn’t doing it, he did it himself ). Next, he checked on the children and
spent some time with them either helping them or playing with them
(typically 20 minutes). Finally, he went to relax in front of his computer
and shut out the world, as was his habit.
For this particular couple, the adjustment was a marriage-saving improve-
ment. What would their marriage be like today if this woman had let her
assumptions fester? The anger at her husband’s apparent indifference
would probably mount until it became pure hatred. The marriage could
have either dissolved or become toxic.
PARROTING/ECHOLALIA
People with AS or other autistic spectrum disorders (ASDs) may parrot
back what is said in an effort to give themselves time to digest the words
and to formulate a response. Sometimes, they can’t hear what has been said
until they say it themselves. It’s as if the response reaction is a
rough-starting car engine that needs multiple attempts to get started. For
example:
NT: What do you want to do tonight?
AS: Do tonight?
There’s a possibility that the Aspie has received a few too many negative
responses to his echolalia and has replaced it with other dysfluencies. One
couple explains:
FOURTH DIAGNOSTIC CRITERIA 191

He [AS] lets out huge sighs that are embarrassingly long. He says he’s
thinking.
Or:
In the past, when I asked him [AS] a question, he would think about it,
take his time, and finally answer. I bugged him about it and now when I
ask him a question, he knows I want a response in real-time (not
AS-time), so now he gives a thoughtless response so that he can get it
out fast enough. I should have been careful what I asked for! I traded
one problem for a bigger problem.
Perhaps the parroting has been replaced by sighs, silence, a nonsensical
response, or fidgeting. In researching, I did not find a solution per se to the
parroting/echolalia issue except to realize that it serves a purpose for the
Aspie. It is best to allow time for the adult Aspie to compute the informa-
tion and formulate a response on his own timetable.
“I DON’T KNOW”
What do you want for dinner?
I don’t know.
What do you want to do this weekend?
I don’t know.
What do you want out of life?
I don’t know.
This particular communication pattern occurs often in our home. My Aspie
husband can make decisions just fine; it’s just that there are far too many
decisions to make in the average day. He’s usually on decision overload and
just shuts down. The “I don’t know” response is more a sign of overload
than it is a sign of ignorance. Another sign of overload is silence, but unless
he’s at maximum overload, he can usually muster an “I don’t know.” It’s a
sign that he at least has the strength to give a verbal reply, whether it’s
meaningful or not.
Typically, if an Aspie does not know what to say, he doesn’t say
anything (Attwood 1998). For too many years, I interpreted “I don’t
know” (or silence) to mean “I don’t care.” In reality, an answer of “I don’t
know” may indicate a tired soul, worn out from the stresses of too many
difficulties squeezing into one day. I learned to translate the “I don’t know”
192 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

into “I’m too tired to know” instead of assuming that his response indi-
cated his level of caring. This proved to be a marriage-saver. It was one of
many situations where attributing NT responses to a person with AS
proved to be dead wrong.
METAPHORS, SIMILES, AND OTHER EVILS
Metaphors are non-literal expressions such as “food for thought.” Similes
are figures of speech such as “sweet as honey.” Do you use these in your
daily speech? Probably. Often, an NT isn’t even aware of having used one
because it happens naturally as we speak. For example:
Why can’t he understand what I’m going through? I told him to try
walking in my shoes for just one day and he just stared at me (and at my
shoes).
I have found it useful to use a “metaphor meter” when I’m conversing with
my Aspie husband. It sounds silly but it’s based on the writings of Hans
Asperger himself (1944, p.58 in Frith 1991). When I converse with my
husband, I mentally turn on a sorting device that separates the facts from
the extras (metaphors, similes, hypotheticals, heavy emotional content,
poetic phrasing, etc.). With my metaphor meter at maximum power I can
sift out the obstacles in a conversation before they spill out of my mouth.
What results is clearer communication, more similar to Aspie-speak. It’s a
small price to pay for the ability to converse with my best friend.
THE HYPOTHETICAL
NTs use hypothetical situations to illustrate a point, to explore possibilities,
or for other purposes. Have you noticed that your AS partner doesn’t enter
into the hypothetical exploration with you?

Non-AS: How would you feel if I had just said that to you?
AS: But you didn’t say it. I did.
Or the hypothetical comment may just send your AS partner’s head
spinning.

Non-AS: How would you like it if I did that to you and then you had to
clean up this mess?
AS: I have no idea what you’re talking about.
FOURTH DIAGNOSTIC CRITERIA 193

Think back to the last time you used a hypothetical in speech with
someone. You probably used it to illustrate a point. Why not skip the hypo-
thetical and get straight to the point? You may not want to make it a habit,
but at least it will clear up some communication problems with your AS
partner. For example, when I try to explain to my husband that we need to
update our will, I can use one of the following types of dialogues:
If we don’t update our will then the kids might go to Uncle Joey and he
wouldn’t be good for them at all. He’d use their inheritance for
gambling and would let the kids grow like weeds… Or what if Aunt
Sally got them? They would not do well under her care…
Or:
If we don’t have a will, we won’t get what we want.
Guess which one my Aspie husband prefers? You guessed it. The direct
approach. The hypotheticals are merely detours that his focused Aspie
brain cannot afford to go down.
UNWRITTEN RULES
When I was 15 years old I traveled to another country to study as an
exchange student for a year. It was my first experience of a foreign culture.
So many rules: don’t put your hands in your lap during meals, don’t be
boring, be funny, be interesting. The mannerisms, gestures, and body
language were all foreign.
Because of this experience I was able, in a small way, to develop
empathy for my husband’s inability to know the unwritten rules automati-
cally. After all, they are quite puzzling. When I found out about my hus-
band’s AS I did the same thing I did for myself when I was overseas: I wrote
down the rules so I could see them, touch them, and realize that they were
concrete, real, and definable. I thought this might help my husband since
his lack of social graces reminded me of my awkward adjustment to a new
culture. In a little journal we passed back and forth to each other during
church I wrote: “Don’t snore during church.” On his “To Do” list at home I
wrote: “Hug me when you come home.” On his home computer I typed:
“Ask the children about what they did at school today.” The unwritten rules
became written.
I have often wished that I could go to a bookstore and pick up a copy of
the “Unwritten Rules of Human Behavior,” a 700- to 800-page volume
194 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

written specifically for Aspies. I wish that someone else would do this for
me, but I have realized that we all make our own rules – especially within a
long-term relationship. We define our own rules as a couple. Those who
work with AS children may be able to teach the rules of acceptable
behavior directly, whereas within a marriage it is a mutual definition
created one rule at a time.

Implications and solutions: Language


“There is no clinically significant general delay in language”
It is possible that your Aspie partner may be able to mask the communica-
tion difficulties from everyone except you. He may appear to be conversa-
tionally able in public but, behind closed doors, in your home, he may
speak an alien language, if he speaks at all. If this is the case, both of you
may be led to believe that the problems lie strictly between you and your
partner – when, in reality, the problems lie in a lack of higher-level com-
munication skills.
Intimate relationships require the most elaborate conversational skills
of all, discussing everything from the most complex personal negotiations
to the softest, most delicate, emotionally charged issues. Yet, somehow, we
expect this level of communication to be equally as simple as the commu-
nication we experience with friends and co-workers. It just isn’t so. There is
a distinct quality difference between everyday conversation and the con-
versation needed between partners.
Communication difficulties in an AS-linked relationship can create a
noticeable coldness between the two partners. I have often marveled at
how quickly our conversations can freeze due to the differences in how we
communicate. It is frustrating, leaving both of us wondering why we have
to work so hard to figure out the day-to-day details of our lives together.
Learning how to communicate with my partner sometimes feels like a
part-time job, sapping energy out of me when I have already worked a full
day. A friend once told me to look at learning to communicate with my
partner as learning a new skill. I was taking “night classes from an inde-
pendent study course in Aspergese.” Once I could see it as a learned skill, it
helped me realize that I was furthering my education, attaining a valuable
FOURTH DIAGNOSTIC CRITERIA 195

new proficiency. Self-pity went flying out the window. I was becoming
multi-lingual and it was a respectable, worthwhile goal.
SUCCESSFUL COMMUNICATION
Aspie or not, successful communication is difficult. If it was easy then
bookstores’ shelves wouldn’t be lined with volumes describing how to
communicate effectively, seminars wouldn’t be focused entirely on the
communication process, and universities wouldn’t offer courses in com-
munication. I tried all of these resources (books, seminars, courses) and
none of them worked with my Aspie spouse. I learned how to NT-speak
better, but I still couldn’t Aspie-speak.
To figure out solid communication skills for an AS-linked relationship,
let’s look at the diagnostic criteria once again. What types of obstacles can
we overcome simply by our awareness of the standard diagnostic traits?
Here’s a brief sampling based on particulars from the DSM criteria:
• DSM-IV: A – Failure to recognize nonverbal language
If your Aspie doesn’t understand nonverbal communication,
then don’t rely on it. Make sure that your message is communi-
cated in its entirety in verbal or written form. If you inadver-
tently say “Come here” with your eyes, try to catch yourself and
say it out loud.
• DSM-IV: A – Lack of sharing
Find ways to encourage your partner to share. Ask pointed
questions. Ask questions through e-mail. Communicate appre-
ciation when he does make an effort to share.
• DSM-IV: B – Intense interest
If your partner is going on and on about his intense interest,
have a pre-agreed-upon signal that will pause the communica-
tion. For example, if he is droning on about the latest advance in
AI (artificial intelligence), tap him on the shoulder until he
snaps out of it and explain that you need to take a break but
would love to hear more later.
196 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

• DSM-IV: B – Routines
If your partner has established a less-than-appealing communi-
cation routine, have a signal to break it. For example, if your
dilemma is getting your partner to stop teasing you, keep a
small red card in your pocket and hold it up every time he teases
you. Agree that the routine (persistent teasing) needs to be
stopped for the benefit of you both.
• DSM-IV: C – Social impairment
Once you know that social situations are difficult, you can work
around them by avoiding impromptu social situations, practic-
ing for important social situations, and preparing for the after-
math of social situations.
• DSM-IV: D – Communication
As miscommunications erupt, you can more easily trace the
problems back to the particulars of Aspie-speak (literal speech,
logical conclusions, succinct communication, etc.).
• DSM-IV: E – Unimodal
Once you’re aware that your Aspie partner may be unimodal,
you can more easily adjust your expectations of your partner by
not asking him to use more than one modality at a time.
In the AS literature, you’ll find several suggestions that are mentioned over
and over again: be clear, don’t interrupt, and look for alternatives. Let’s
look at the first of these three – be clear. For example:
I can’t say, “It sure is cold out,” and expect him to give me his coat. I must
say, “Can I borrow your coat?” I must be straightforward and direct.
The second general suggestion – don’t interrupt. Why is this an issue?
Interruptions are like a break in the train tracks. They cause the Aspie’s
thought process to derail. Wait patiently. A derailed train is far worse than a
few moments” pause and a little exercise of patience.
The third general suggestion – look for alternatives. Go with your best
understanding of your own needs along with what you have learned about
your partner. The answers to our communication problems lie in our abili-
FOURTH DIAGNOSTIC CRITERIA 197

ties to understand the Aspie condition and brainstorm for our own best
personal solutions. Some of the following solutions have worked for us:
• E-mail or instant message your partner.
• Use a watch that accepts e-mail. The message will be physically
attached to your partner.
• Use a cell phone that accepts e-mail. You partner can choose to
answer back in cell e-mail or call you directly.
• Write a short note and put it where your partner will see it.
• Make your own list of hand signals. We have secret signals for
all sorts of things, especially the “I’m not OK even though I
look OK” signal and the “You’ve pushed me too far” signal.
These messages cannot be communicated delicately so the hand
signals are valuable when others are present and we have to
watch our words carefully.
• Find the repetitive communication patterns and eliminate them.
For example, if you say “Please take out the trash” every night,
post a note about it where he will see it and remember to do it,
making it a routine, thus alleviating some of the verbal
communication overload.
• If your Aspie partner is a visual thinker, draw graphs, charts, or
other visual images that explain the concept in fewer words.
• If your Aspie partner is worried about the issue becoming
confounded by other topics, set a time limit. Either set a
stopwatch or other timing device. Our favorite method is to
choose a favorite TV show that puts us both at ease and agree
to discuss the particular topic only during the commercial
breaks. This confines the conversation to three minutes or less
and isn’t as staged as setting a stopwatch. We can either watch
the show or take time to think during the show, preparing for
the next commercial break. You can have “Cocoa Talks” where
you limit the conversation to the amount of time it takes to
cook hot cocoa or limit it to the time it takes to reboot your
computer – whatever works. The set time limit will give your
partner a sense of predictability.
198 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

• Present only one issue at a time. If the problem is bigger than


just one issue, write it down for yourself in your relationship
journal (see Chapter 3) and then address only one part at a
time. You’ll be able to map out the full topic in your
relationship journal and won’t lose track of where you are in
the discussion. If your partner has weak central coherence, he
will only see the bits and pieces of the issue, not the issue as a
whole. By writing it down in full, you’ll be able to work on the
issue slowly and methodically, avoiding the feeling that the
issue has been dropped or ignored.
Although these are great solutions, I hope you will trust your own
instincts. Each couple must find their own solutions because each couple is
so phenomenally unique. I will use the e-mail suggestion as an example of
how important it is for the AS-linked couple to go with what works best in
their relationship and not consider it a failure if a particular strategy
doesn’t work for them.
In the AS literature, you’ll read over and over again the recommenda-
tion of using e-mail or other electronic communication to talk with your
Aspie partner. Using e-mail sounds like the ultimate answer – communica-
tion removed from the threatening verbal realm, devoid of body language,
eye language, and other nonverbal signals, stripped down to the bare
words. It may work wonders for many, but may not work for everyone.
Listen to one wife’s experience:
I tried your suggestion of e-mailing my husband [AS]. He just ignores it
like he does every other form of communication. The only way I can
communicate with him is when we’re lying in bed at night. I guess he
needs to be horizontal to be able to talk (and I don’t mean that in a rude
sexual way). He’s not lazy, but he says he needs to have “the gravity off
my body.” Plus, I’m not looking at his face, I’m tenderly snuggled in his
chest. I guess it’s the non-threatening nature of our positional relation-
ship to each other that makes conversation possible. When we’re
standing, walking, sitting at the table, or even in front of his computer
monitor, he’s incapable of holding a conversation, utterly incapable.
There is also a possibility that e-mail won’t work due to the Aspie’s
well-earned sense of distrust in interpersonal communication. For
example:
FOURTH DIAGNOSTIC CRITERIA 199

Whenever we have e-mailed each other, it always seems to end with hurt
and confusion. My wife [AS] has gotten so accustomed to hidden
messages behind the words that she’s paranoid of what might be behind
the message.
While working your way to a more successful level of communication, you
may be able to learn from your Aspie partner. I believe that certain Aspie
behaviors can be highly effective in certain situations. For example, when I
use my husband’s “Aspergese,” I will:
1. Listen (although I may only be pretending to listen).
2. Respond unemotionally (hard for me to do at times).
3. Be less dependent on what others say or think (your Aspie
partner is a great role model for this, if a bit extreme).
4. Be more centered in self (not too bad if it helps you more
accurately identify your needs).
5. Be concise (excessive frivolous chitchat takes time away from
the more important things in life).
6. Focus on the logic of the message (useful in workplace
communications).
BREAKDOWN OF ALL COMMUNICATION
The breakdown of all communication can happen for countless reasons
that are directly related to the DSM diagnostic criteria. I’ll list only a few
since the full list I originally composed was more depressing than a funeral
dirge.
• DSM-IV: A – Lack of spontaneously seeking to share
The NT partner perceives that the AS partner does not want to
share any personal, emotional information, therefore assuming
dislike or even willfully cold intentions. Communication shuts
down.
• DSM-IV: B – Inflexible adherence to routines
The AS partner must stick to a certain script within the conver-
sation (a routine involving communication patterns) and cannot
modify the communication pattern to fit the current need.
Communication shuts down.
200 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

• DSM-IV: C – Sensory issues


Due to auditory dysfunction, voices that are loud, angry, or
have a shrill tone are unintelligible. Without being able to hear
the words or read the nonverbal cues, the person with AS is
functionally deaf and blind. Communication is impossible.
• DSM-IV: C – Meltdowns
Instead of discussing issues ahead of time, issues are dealt with
in the heat of the moment when the AS partner is in the illogical
meltdown state. Communication shuts down.
• DSM-IV: D – Literal thinking
In an honest effort to clarify an issue, the NT partner uses a
hypothetical or an analogy to explain an issue. The AS partner
is lost among the figurative speech, clinging to one or two
items, trying to take them literally. Communication is derailed.
• DSM-IV: E – Unimodal behavior
The NT partner requests that the AS partner do two things at
once; for example, write while talking. The AS partner is only
able to complete one task at a time (or neither) and cannot
explain why he can’t “try harder.” Communication shuts down.
Enough already! There are so many ways for an AS/NT conversation to
shut down that it’s amazing that we are ever able to communicate in the
first place. Let’s discuss some of the most basic issues that may form a
chasm between AS and NT communication.
One differential may be the purpose of communication. It is possible
that your AS partner sees communication merely as a tool for getting infor-
mation. It’s possible that your partner “...perceives having a conversation as
announcing, informing and questioning; with no idea of the Experience
Sharing purpose it serves the rest of us” (Gutstein 2000, p.42). If the
purpose of the conversation is merely to get or give information, then con-
versations will dead-end quickly. You’ll be left with an empty feeling at the
end because your purpose for conversation goes beyond information
getting. As my husband and I have learned to share verbally with each
FOURTH DIAGNOSTIC CRITERIA 201

other, I have been able to explain that I need three things in a conversa-
tion: listen, respond, and share.
For my husband, the listening part was simple. He naturally listens to
anyone and anything, logging away details with perfect accuracy. It took
several years for the “respond” part to become a habit. We developed strate-
gies that made the responding natural for us both. The final one, the one
that we are still working on, is to “share.” I have found great relief in
hearing detailed responses to: “How was your day?” Sharing is becoming
more natural as we work on it. In order to see the progress, I have referred
to my marriage journal many times. I recorded our first efforts as follows:
He’ll say something about his work, but it’s so boring that I’ll interrupt
him or somehow cut it short. I can’t help it. It’s so boring.
I conscientiously trained myself to attend to the conversation even though
it was boring. It was important that I support my husband’s first efforts at
experience sharing. Later journal entries described:
It isn’t so boring anymore and the flow is better. He’s learning that
certain topics are far more interesting than others.
Another potential cause for the breakdown of communication relates to a
person’s conversational coordination. The autistic person may not know
“…how to recognize that the coordination of the activity has been lost,
and to perform a type of regulatory or repair activity” (Gutstein 2000,
p.20). For example:
NT: Talking about how to raise the children – getting angry and
bringing up numerous topics. Conversation is deteriorating rapidly.
AS: Trying to hold on to a consistent thread in the conversation.
Compared to (if it was an NT/NT conversation):
Other NT: Uses a repair strategy such as, “Hey, I can see this is a hot
topic. Let’s take a short break and talk about it in a minute.”
A repair activity is something a person does to fix a flailing conversation.
Here’s another example:
NT: Talking about how they should handle a difficult financial situa-
tion.
AS: Doesn’t know an answer so stays quiet or walks away.
Compared to (if it was an NT/NT conversation):
202 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Other NT: May try a regulatory approach, keeping his own interest
level up to match his partner’s interest level: “I’m just as concerned about
this as you are, but I have no idea what to do here. What do you think?”
The regulatory and repair strategies may sound easy as you read them on
paper, but they are not. They are the diplomatic tactics that push the
conversation in a healthy direction. Learning how to repair and regulate a
conversation can be taught directly given the motivation and a good
therapist. Without regulating a conversation, a person with AS may plod
along, not realizing the damage that his words and actions are causing. For
example:
He [AS] said ___. It hurt my feelings deeply and I told him so, but it
didn’t do any good. I can be sitting there crying into my hands and he’ll
still continue drilling in the same argument.
Breakdown may occur if the Aspie partner lacks the ability to see his own
fault due to theory of mind issues, e.g. the person with AS recognizes only
his own mind. This is evident in our home at times. You’ll hear me and
others say, “He’s always right.” He is. Fortunately for him, he has been
quite lucky in life and I can recall only a few times over the last 15 years
when he has been wrong. One of the times had to do with a particular USA
front-line news story. When we met up at the end of the day, I told him the
gossipy news. He said, “Nope. Couldn’t be.” He insisted that my informa-
tion was incorrect although he had no information to the contrary. I’m a
news junkie and had heard and read the information verified through
several sources. My husband continued to state that I was wrong and the
conversation degraded into a “What is reality anyway, other than what you
think is real?” conversation that always leaves me wondering why I bother.
While we were discussing the topic, a reputable station confirmed the news
story, nearly word for word. We both watched and listened. To my amaze-
ment, he remained staunch: “You’re wrong.” Well, we were all wrong – the
reporters, the media, everyone, even me. All I could do was shake my head
and marvel at his ability to stick to his beliefs no matter what.
Years later, when I read Liane Holliday Willey’s (2001) book, Asperger
Syndrome in the Family, I realized that our familiar phrase of “He’s always
right” may have had its basis in his Aspieness. Liane states: “Failure to
admit when we are wrong falls into the inflexible range, too. It necessitates
the same problem-solving hierarchy that underscores any change in
FOURTH DIAGNOSTIC CRITERIA 203

attitude or behavior – the hierarchy we are not wired to turn to” (p.97). I
have had to accept the fact that my Aspie husband will always be right.
The negative side effects are obvious. I doubt that I need to elaborate on
what it is like to be married to someone who is always right.
I believe that this inflexibility can, at times, be an asset. Perhaps an
Aspie’s failure to admit when he is wrong is consistent across the board.
Perhaps he will stand up for all his beliefs the same unrelenting way. I have
seen my husband stick to a belief that may have been difficult for a
non-aspie to hold on to. The one example of this that shines brightest for
us at this point in our lives is that my husband has the underlying belief: “I
will be there for my children.” Time and time again, he has had to leave
work early in order to attend a school event, drive the children somewhere,
or attend a child’s appointment when all his colleagues are still working.
Not a single one of his colleagues understands his family life and if my
husband were not an aspie, he would have caved into the peer pressure
long ago, staying late at work rather than holding to his inflexible,
unchanging, die-hard belief: “I will be there for my children.”
LITERAL THINKING
It is often said that people with AS perceive comments literally. A strong
example of this comes from Maxine Aston (2001), a counselor in the UK
who works with AS couples.
Problems with literal…meanings can cause many misunderstandings
for those with Asperger Syndrome, many of whom complain that they
wish people would just say what they mean…One woman explained
how she had told her husband she would “kill him” if he forgot to pick
up the dry cleaning in his lunch hour. She was going to speak at an
important conference and needed the outfit that was at the cleaners for
that evening. He forgot to collect it and took her threat to kill him quite
seriously, so he was too afraid to go home. She eventually received a call
from her sister-in-law to say that he had phoned her because he was
concerned that if he returned home he was in danger of losing his life.
(p.21)
Profound confusion can result when a person with AS perceives comments
at face value only. It’s likely that you won’t notice the impact of your
comments unless you work with a therapist or counselor to get to the root
204 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

of the confusion and track it back to the original source – the literal inter-
pretation of an NT-style statement.
It’s also possible that your AS partner expects you to live up to your
comments in their most literal sense. For example, if you say you’re coming
home at 5 p.m., you’d better be home at 5 p.m. Although you may have
been providing only an estimated time, your partner may interpret your
actions as dishonest if you don’t follow through on all your comments
word for word.
Not only will the comments be perceived in their most literal sense, but
they may also be perceived as concrete and unchanging. For example:
When we were first married, I told him that I didn’t think I would ever
want to have children. He took it as a rule that we would never have
children, so when I turned 30 and started getting baby-cravings, he
adamantly reminded me of our previous “agreement.” He thought I was
being dishonest by changing my mind.
Honesty, truth, and trust seem to be big issues in an AS/non-AS or AS/AS
relationship. An Aspie needs predictability (even in unpredictable situa-
tions), literal communication (even in casual conversation), and the
simplest form of honesty (even in complex human relations). Perhaps the
lack of simple honesty in conversation is what leads many Aspies to
distrust others.
If trust, honesty, and consistency are big issues for you and your
partner, you may need to be extra vigilant to keep your everyday actions
consistent with your words. For example, if you say “I’m starving hungry”
and then don’t eat much for dinner, your partner may feel as if you have
lied. Another example:
I told him that I have wanted a pony ever since I was a little girl. He [AS]
figured out a way for us to get a horse on our property… When I
explained to him that I didn’t want a horse, he couldn’t understand it
and thought that I had made it all up.
The Aspie partner won’t be able to mindread and will take your comments
literally, not seeing the implications and insinuations behind the words.
For example, I have often used the catchall phrase “I need help” as a blanket
statement for dozens of different purposes. Without follow-up information
my Aspie husband doesn’t know what to do with this comment. “I need
FOURTH DIAGNOSTIC CRITERIA 205

help” is too vague to process and he can’t mindread his way around the
request. The following exchange used to occur often in our household:

NT: I need help.


AS: Yes, you do.
This typically happened when I forgot our newfound AS-communication
style and slipped back into old, familiar ways. In my NT language, “I need
help” means “Hey, buddy, can’t you see that I need you to carry a few of
these bags, give me a smile of encouragement, and recognize my needs
before I have to ask?” The simple comment of needing help was supposed
to spur on further action from him, but it didn’t.
We used two helpful strategies to get ourselves beyond this impasse.
First, he learned to respond with “What should I do?” It was a prompter
that worked in nearly every situation. It triggered our Aspie-speak,
reminding me in a non-confrontational way that I needed to give further
details.
The second strategy was to break the task into sub-tasks. I learned to
word my needs in simple requests containing no more than three items.
Tasks that seemed simple to me were actually multi-step tasks for him. For
example, “Please get the toy out from under the couch” is a four-step
process: 1. Move the couch, 2. Pick up the toy, 3. Put the toy somewhere,
and 4. Move the couch back. NTs might perceive this task as a single-step
process: “Get the toy.” For a person with dyspraxia, it is far more compli-
cated.
I found that, on a bad day, my husband’s executive functioning (the
ability to execute tasks) would be low, so I would request only one item at a
time and I would be explicit in the detail of the request. I would request,
“Please move the couch three feet to the left.” I would help him through
the day the same way I would if he had the flu or a cold. Everything was
foggy in his mind and he needed a flashlight to get through it all. The
flashlight was the direct and clear instruction that helped him see just one
step in front of him – enough to make it through the day.
Part of literal thinking is believing that a comment, once made, will
stay constant over time. For this reason, your Aspie partner may tell you “I
love you” once and not tell you again. Why say it again? From the NT per-
spective, you may feel that one simple expression of love is not quite
206 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

enough to last a lifetime. From the AS perspective, there is no reason to


repeat a phrase that has not been successfully refuted. Here is where we
need to brainstorm for creative, unusual ways to meet the needs of both
partners. In my case, I was able to say, “I need to hear ‘I love you’ at least
twice a day.” That was sufficient. I hear it a dozen times a day because he’s
playing it safe. For others, a request stated as a rule may be met with oppo-
sition, manifest in comments such as, “I already told you I loved you. Don’t
force me.” In this case, other methods of love-representation work better:
e-mails, notes, a special hand sign, a touch that is unique to the two of you,
a secret word, roses once a month, cooking dinner, rubbing your back,
anything that would be a good substitute for an affirmation of love.
WORDING CRITICISM
Since your Aspie partner appears “normal,” you may voice opinions such
as: “How could you think something like that?,” “Didn’t you hear a word I
just said?,” “Don’t you get it?” Comments such as these, although justified,
are the marital equivalent of a parent ranting at a child: “How many times
do I have to tell you?!” These comments are pure poison, not only to you
and your partner, but to others (children) who are within earshot.
The Aspie is already aware that he doesn’t “get it.” The Aspie is
probably trying hard to ignore the comments or deny their reality. Voicing
the opinion reinforces the fear that the Aspie is an “outcast,” incapable of
understanding what most people “get” naturally. Your AS partner may be
able to weather it for a while, but it’s most likely that he’ll find a way to
protect himself. As one male Aspie explained to his wife:
You know that game…[favorite multi-player computer game]? Well, my
character wears a thick plate of armor made of…[technically detailed
description of armor]. He’s nearly invincible, but if you stab him in
certain spots, you kill him. When you say certain things, it feels like I’m
being stabbed. I can take a certain number of hits like this before it kills
me.
When faced with criticism he can’t refute, he may build a wall, won’t listen
anymore, leave, or develop evasive tactics to save himself from the destruc-
tion that you’re inadvertently dishing out. Even if you didn’t intend to crit-
icize, your partner may perceive it as criticism and remember it long-term.
One comment like “You’re not too smart, are you?” back in the fourth
FOURTH DIAGNOSTIC CRITERIA 207

grade may still be smarting. The difference between an Aspie and an NT’s
perception of a criticism is that an NT may be able to mentally refute the
criticism, realizing that his status as a PhD or fiscally successful adult far
outweighs the comments of his fourth-grade peers. By contrast, the Aspie
may not generalize current successes to past comments (Frith 1991, p.16).
The comments of the cruel fourth graders may still be considered valid in
the Aspie’s mind – they may be unchangeable. Likewise, your comments
of “I’m sorry” or “I didn’t mean it” may prove ineffective in wiping out past
hurts. Comments that you make within your adult relationship may be
officially logged onto his mental files for permanent storage.
So, now that we know how destructive criticism can be to an Aspie,
what do we do? Do we just shut off all criticism? Do we repress? Not if we
want a healthy long-term relationship. There must be other options.
First, look at the criticism. What is it really? I see it as having two parts:
one helpful, one hurtful. We can dissect the criticism, maximizing the
good and minimizing the bad. For example, imagine that my Aspie partner
lost his job. Upon hearing about it, I might say, “What? I can’t believe you
lost your job. We’d better tighten up finances immediately.” There are two
important messages here: 1. anger at the situation and 2. an explanation of
what I believe should happen.
I have found it most successful to first deal with my anger. If I really
need to let off steam, I use a healthy method (leave the room, stomp my
foot, whatever works at the moment). I believe it’s healthiest to channel
anger away from my partner.
The second part of the NT anger response is the statement of the antic-
ipated reaction: “We’d better tighten up finances immediately.” This is the
action part of the response – the part my AS partner is looking for. If I can
state my reaction in the form of a desired response only, I’m at peace with
the fact that I’ve tried my best. I pat myself on the back that I’ve pulled
myself out of the situation without criticizing my partner or demoralizing
both of us.
Why is it so important to dissect the emotion from the fact? Because a
person with AS is more likely to understand the factual side of the
comments first. People with autism do experience emotion, but they expe-
rience it differently than NTs do (Grandin 1995, pp.82–95). Approaching
a problem from the emotional vantage point first is most likely to cause
208 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

confusion since you are both on different wavelengths emotionally. Your


interactions are more likely to be meaningful and successful if they are
based on facts and logic – it may help to siphon off the high-octane NT
emotions before sending the message in your partner’s direction. Listen to
how my Aspie husband explains the dichotomy:
I don’t see why you’re mad about it. It happened. So what. The fact and
the emotion are two different things.
NTs tend to mix emotion and fact as quickly and as easily as we mix verbs
and adverbs – they go together and it’s natural. Separating these two is
only a minor adjustment in how you vocalize your anger to your Aspie
partner. You may find that it is healthier to be more careful in your expres-
sions of anger. At least, it’s worth a try to avoid all the anguish that accom-
panies the criticism. Criticism is not only bad for your Aspie partner, but it
hurts you as well.
Lest we think that criticism is a simple issue, let’s explore why it may go
a few steps further for your particular Aspie partner. There is a possibility
that criticism is cutting a far deeper wound than you ever intended. You
may find that your partner is hypersensitive to criticism, to the point of
irrationality. For example:
No matter what I say, he [AS] thinks I’m being critical. I can’t open my
mouth without him automatically judging my comments as criticism.
Lorna Wing (1981) supports this concept: “The tendency found in people
with Asperger Syndrome to sensitivity and over-generalization of the fact
that they are criticized and made fun of may, if present in marked form, be
mistaken for a paranoid psychosis.” Perhaps even the slightest hint of a
criticism may lead you to a life where all communication shuts down. For
example:
Even the simplest observation such as “the butter is too soft” is taken
personally. She [AS] gets angry that the butter is too soft, thinks I’m
blaming her for making the butter too soft… It’s pure hysteria.
The hypersensitivity to criticism may come from previous societal interac-
tion. A person with AS may grow up with the belief that others are out to
trick him and make him look stupid. Over time, he may develop an
ingrained hypersensitivity to anything that may possibly be a criticism.
The person with AS doesn’t have the natural ability to perceive the nuances
FOURTH DIAGNOSTIC CRITERIA 209

between criticism and comments, let alone the differences between con-
structive criticism and hurtful criticism.
It wouldn’t be fair to mention only the one-way direction of criticism
(the NT partner criticizing the AS partner). It may easily go both ways, but
of course the dynamics are different.
The AS partner may criticize the non-AS partner. For example:
She [AS] is always pointing out what a slob I am and how I can never
pick up after myself.
Or:
He [AS] is constantly criticizing me that I don’t cook properly.
Or:
Why should I listen to him [AS] criticize me about every little thing?
When he is home, he’s constantly pointing out how I’m doing every-
thing “wrong.”
Perhaps, upon further investigation, you may find that the criticisms are
actually intended as logical, helpful comments. Even the comment of “No
thinking individual would ever do it the way you just did” may actually
have no malicious intent behind it. It may be extremely difficult to accept
the fact that most Aspies are not the “manipulative,” “controlling,” “critical”
creatures they appear to be when they are offering insights that they
believe will be helpful. The Aspie who complains about messiness may
simply be trying to satisfy a sensory need for order in his surroundings.
The partner who complains about cooking may simply be making an
observation. The Aspie who points out all the mistakes of his partner may
be trying to improve his partner. It may come across as “inappropriate,”
“tactless,” and “rude,” but perhaps the intentions are good.
It may take immense courage to open yourself up to the possibility that
the apparently critical comments may not be intended to hurt as deeply as
they do. Especially if you have been together for a while, it may be
extremely difficult to get past the patterns of criticism that have sunk their
roots into your relationship. Despite the difficulties, the easiest way to
determine your partner’s intentions is by simply asking. I have learned to
ask, “Did you mean to hurt me?” Every single time, without exception, my
AS partner has been baffled that hurt was perceived on my part.
210 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Of course, if the criticism is intentionally hurtful, then it is a matter that


needs to be dealt with by a trained, qualified couples therapist. If your
partner is excessively hurtful it may be a more severe psychological condi-
tion such as oppositional defiant disorder (ODD). A person with ODD is
characteristically argumentative, defiant, and hypersensitive. He may
actively seek revenge, throw temper tantrums, or stage deliberate attempts
to annoy you. A medical professional can deal with this condition.
Somewhere in the distance between the AS partner and the NT partner
there is a miscommunication – a comment that was benign becomes malig-
nant as it travels through the air from one partner to the other. It’s a sort of
infectious miscommunication. Let’s look at a few remedies:
When he [AS] criticizes me, I take a step back mentally before I respond
to him and think, “If he wasn’t trying to hurt me, how would I interpret
what he just said?” It allows me to see past the obviously hurtful parts of
the comment and interpret the comment as he intended it.
Here’s another example from a woman who was desperate to find a way to
counteract the criticism that was slipping out of her mouth on a
minute-by-minute basis:

I need to undo the damage of my repetitive “I hate you” messages, but


how? This morning, I set a goal to not criticize him [AS] for an entire
day. By 8 a.m. I had already failed miserably. I just couldn’t bite my
tongue that hard. I couldn’t give so much of myself. So, I decided to
write it down. I wrote a long letter to him. He read it, but I don’t think
he understood it. The words probably floated off the page into the realm
of mushy, meaningless love-talk for him.
Since his visual perception is much stronger than his auditory per-
ception, the message should be written – he’ll have to see it. I’ll post the
message where he can see it so it can sink in and counteract the damage
of my critical comments. It has to be a logical message. Words like
“love,” “feel,” and “affection” will make the message fuzzy.
[Several weeks later.] When he left for his business trip, I slipped a
few 3 x 5 handwritten love notes in his suitcase like I always do. The
notes contained messages such as “Miss you!” or “We love you!” Silly
messages that have never made much of an impact but, this time, one of
the notes somehow found its way up onto a shelf in the closet. The note
said, “We couldn’t ask for a better Dad. Be safe.” It was clear, logical,
direct, and it contained no fuzzy love-talk. I posted it where he’ll see it
FOURTH DIAGNOSTIC CRITERIA 211

daily. Voilà. A message that can help him through the tough times when
my critical comments slip out.

COUPLES COMMUNICATION AS A LEARNED SKILL


Couples therapy contains two basic elements: talking and emotion.
Neither of these are appropriate for my Aspie partner so we must use other
methodologies. These “other methodologies” may not look even vaguely
similar to standard couples therapy.
• Focus on cognitive analysis rather than emotional analysis. For
example, instead of, “Why do you feel this way?” it might be
more effective to say, “Let’s dissect this issue in the format of a
written list.”
• Take it step-by-step. Don’t expect to create successfully a
year-long financial budget when you can’t agree how much to
spend on dinner.
• Deal with one issue at a time. It may be a bit more difficult for
you (NT), since you can see how topics are interrelated, but
your AS partner won’t see that. Mixing topics only confuses the
matter. Work with one issue at a time and interrelate them on
your own later.
• Reading books from the management/business section of your
library or bookstore might help. Learning how to negotiate
professionally, how to deal with difficult people, or how to
logically state your position may be far more effective than
reading emotion-charged marriage self-help books. Perhaps the
logic behind management-style negotiations will be more
effective for your particular situation than the standard marital
relations advice.
• You may need to be forceful. For example, if your partner does
not refer to your face, tone of voice, or other indicators while
arguing, you will have to show your point in explicit,
unquestionable detail. Without a knowledge of AS, you may
communicate “Hey, the fight is over” by snuggling up to your
partner, smiling, softening your eyes, touching his shoulder,
and saying something gentle. Instead, perhaps you can vocalize,
212 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

“The fight is over. I’d like to relax with you now,” and ask
point-blank if your partner has also given up the fight.
• Talk through issues in explicit detail. The true source of the
problems probably won’t be revealed until after a significant
amount of worthless conversation, when all of a sudden a small,
seemingly irrelevant detail is unearthed as an answer to your
problems. For example, one day we were arguing over why my
husband does not help the children with their school projects.
We argued over his role with the children, and how he shows
his caring towards them. We argued about nearly every aspect
of parenting until finally it was revealed that he couldn’t help
the children with their school projects because on this
particular day they both had literary assignments requiring a
high level of skill with poetic wording. He is a literal thinker,
not a literary thinker, and knew that his interpretation of
non-literal text would be inaccurate. A minor detail, but it was
the root of the problem and we never would have discovered it
without half an hour of probing. Without diligence, our
conversation would have ended on the dual notes of “You don’t
care” and “You don’t understand.”
• Be literal. Your Aspie partner will interpret your message
literally. Be careful not to use metaphors, similes,
generalizations, sarcasm, or complex humor in your messages.
• Wait until your partner is calm, relaxed, and at ease. It isn’t
worth it to approach your partner when he is already on
overload. He won’t be able to hear you. I consider my partner
to be virtually “deaf” during certain portions of the day and this
changes my behavior – I wouldn’t become angry with a deaf
person for not being able to hear me.
• If the conversation turns from talking to arguing, end it quickly
by leaving the room or by giving a quick reassurance and
moving on to something else.
• Don’t promise or threaten anything unless you mean it long
term. Your Aspie partner won’t understand that words said in
an argument have less meaning than words said at other times.
He’ll take the threat at face value and remember it, possibly
FOURTH DIAGNOSTIC CRITERIA 213

even creating his own long-standing threat as a defensive


retaliation.
Please take these suggestions with a grain of salt. They represent what
works in my home and for other couples in similar situations. Every couple
must find their own solutions based on their own unique relationship.
There is one rule that I would venture to say covers every situation: the
differences between AS and NT communication must be recognized. Aspies
are cognitively different from NTs, just as NTs are cognitively different
from Aspies. I was thrilled to read Liane Holliday Willey’s (2001) descrip-
tion of this difference because it helped me understand what may be going
on in my Aspie husband’s head when I try to talk with him as an NT.
These words do little to melt us. They become drums drowning
out the tiny voice in the Aspie heart that tries so desperately to
reach the mind. Neurotypicals do not have tiny voices. They have
strong, clear, multi-lingual voices that can be heard above the roar
of the entire jungle… That mindset requires a cognitive flexibility
we typically lack. (p.97)
If NTs have such strong voices, then why is it so difficult for an Aspie to
communicate with one? Shouldn’t the NT be able to adapt immediately to
the Aspie’s communication style? Not necessarily. It just means that suc-
cessful couples communication is so difficult that it requires a professional
level of interpersonal communication skills along with a Gandhi-level of
self-control. If NTs have a hard time with it, then Aspies must truly struggle
with it, maybe even despise it.
Compared to NTs who use all their modalities to communicate, an
Aspie may have a much more narrow receptor for communication. For
example, when you send a message, your Aspie partner:
• may not hear the message at all if it’s given through a modality
he doesn’t read, such as body language
• may hear the message and not understand it; i.e. it may be
illogical or metaphorical or contain generalizations
• may hear the message and remember it forever; Aspies tend to
remember particularly well those things said during an
argument (Aston 2001, p.41).
214 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I titled this section “Couples communication as a learned skill” because I


believe that it must be learned. I don’t believe that it comes naturally to NTs
to communicate with someone as logical, literal, and honest as an Aspie. I
also don’t believe that couples relations come naturally to an Aspie.
Learning to work together, communicate, and successfully form a mutually
beneficial union may be a monumental effort, but the necessary skills can
be learned.
THE RULE BOOK
I have often wished that my husband had come with his own rule book,
user manual, or some sort of guide that would help me understand his
unique AS wiring. Personal life stories by various AS authors have given
me a glimpse into their own individual rule books and from them I can
infer what my husband’s might be like. I can also look at the research and
infer general rules, but I often wish for a more personalized resource that
would make our life together easier.
On the flip side, Aspies are also confused by the NT codes of conduct.
They also wish for some sort of definitive work where they could look up
the signs of predictable human behavior and learn to interpret them more
readily. Plenty of books have been written to define human behavior: body
language books, eye language books, books about motivation and
intentionality of behavior. These books have been written for the NT mind
– they contain generalities and hypotheses that aren’t concrete enough for
an Aspie mind, which craves concrete details. A definitive book hasn’t been
written because it can’t be written. Human behavior cannot be defined so
simply. Perhaps we could define behavior for one individual at a time, but
not for the human race as a whole.
Given the understanding that both my husband and I work from dif-
ferent mindsets and that the difference in our thinking is profound, we
often comment that access to each other’s personal rule books would make
life infinitely easier. Every now and then, we joke that “Hey, that’s against
the rules” or “That’s not how it is in my rule book.” We work with the rec-
ognition that our mindsets are based on entirely different assumptions and
we both construe meaning from the world differently.
FOURTH DIAGNOSTIC CRITERIA 215

Here’s an example where I misinterpreted my husband’s actions. This


is a summary of several journal entries contrasting the pre-AS understand-
ing to post-AS understanding.
Here were my assumptions:
• My husband is angry with me over certain things, just like I am
angry with him over certain things.
• My husband sees and feels the emotional iceberg between us.
• If I am too nice to my husband, he will see it as a weakness and
be even more mean.
Here’s what I found:
• Just because I have an emotion does not mean he will respond
in kind – he does not engage in this level of emotional
reciprocity. Also, he is rarely angry about anything. Anger is a
rare emotion for him. I have misinterpreted his quietness for a
cold shoulder when it really was just quietness.
• My husband doesn’t know what an emotional iceberg looks
like. I am the only one who can see the icebergs and the cold
shoulders.
• My husband doesn’t intend to inflict hurt; he just doesn’t think
in terms of reciprocity the way I do. He relishes all the nice
things we both do for each other and he isn’t keeping score
like I am.
It takes a lot of work and some introspection to figure out these matters. We
have different neurological wiring; different operating systems run in our
brains. With a little troubleshooting, a lot of patience, and an awareness of
how we are programmed differently, we can begin to decode each other
and write our own personal user manuals. Maybe someday we’ll even have
tech support (appropriate couples counseling).
CHAPTER 8

Fifth Diagnostic Criteria


No Significant Delay
in General Development

E. There is no clinically significant delay in cognitive


development or in the development of age-appropriate
self-help skills, adaptive behavior (other than social
interaction), and curiosity about the environment in
childhood.
Despite our best intentions, we all enter relationships with expectations.
Just as we expect the sun to rise each day, we expect our partner to act and
think a certain way. When our partner shows “no significant delay in
general development” we may be fooled into thinking our unanalyzed NT
expectations will be met.
Although everyone experiences expectation letdown in a relationship,
in an AS/NT relationship it’s a double whammy. There appear to be two
levels of expectations: 1. personal expectations, things we hope for indi-
vidually, and 2. things that are generally expected of a partner. Of course,
the first set of expectations is often disappointed in any relationship
because nobody is a perfect match for another’s set of personal expecta-
tions (also referred to as a “hidden agenda’). What makes an AS relation-
ship doubly difficult is that the second set of expectations also goes unmet.
The AS partner doesn’t intrinsically know the rules of behavior in general

217
218 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

society, let alone the rules of a long-term relationship. One woman


explains her full-blown realization of her expectations:

I expected that he [AS] would want to have kids and raise a family but he
can’t stand too much motion or noise. Our first child was so much work
for him that it stretched him to the breaking point, turning a gentle man
into an angry, frustrated ball of stress. Our second child broke him over
and over again. They are beautiful children and he’s healed, but having
a family was a painful ordeal for him. He knows that the experiences of
parenting helped his soul grow, but he’s constantly trying to clam back
up into his little world that doesn’t involve kids” sports and family
dinners.
I expected that he would be romantic. It was my young idiocy that
made me think that all men should be romantic. My husband wasn’t
romantic before we were married and he was even less romantic after-
wards…he still needs clues and cues from me.
I expected that he would be an equal partner in housework. I had no
idea that his sensory dysfunctions would keep him from household
chores such as vacuuming and dusting. He’s dedicated enough to do
several pre-defined household chores, but when he does, he grits his
teeth, ducks his head and tenses his whole body. He does it, but it’s an
ordeal.
I expected that he would support my work both inside and outside
the home. He’s tried his best to support my work in thought and in
action, but he really doesn’t care what I do. He can’t see why I would
push myself to strive for bigger, better things. He wants everything to
stay the same, stay small.
I expected that he would have a strong religious faith in our church
but he doesn’t like to think about it. I suspect that he has a strong
personal faith, but he can’t stand the amount of socialization that is
involved in our church activity. Going to church on Sunday wipes him
out – just sitting in a pew – is exhausting for him.
Those were my five big expectations: family, romance, house,
career, and spirituality. They were all broken. I don’t know what
possessed me to expect these things when, if I’d had any knowledge of
him at all, I knew they wouldn’t be met. Here’s the key: I thought that
since my husband was brilliant, he would naturally be brilliant in all
areas of life. His academic and professional success blinded me to the
fact that he had many weak areas. Isn’t that the typical post-honeymoon
complaint? I didn’t know he had so many faults?
FIFTH DIAGNOSTIC CRITERIA 219

Once you recognize the expectations for what they are, you can begin
adjusting your expectations to be more in line with the current reality. A
solid realization of how AS affects your relationship can help you build for
the future. Healthy optimism is always based in reality.

What it may look like: Cognitive development


“There is no clinically significant delay in cognitive devel-
opment…”
Part of the AS criteria is that the Aspie experiences normal cognitive
development. Unfortunately, “normal” cognitive development does not
assure academic success. There are extreme variations from academic
excellence to abysmal failure. Whatever the case, it’s likely that your AS
partner has experienced the “genius syndrome” to some degree: “genius”
because most Aspies are of average to superior intelligence, “syndrome”
because it causes significant difficulties. The Aspie may swing wildly
between the “genius” and the “syndrome.” One minute, his brilliant
intellect is recognized – accolades to the genius! The next moment he
cannot add one plus one to equal two in a relationship – he is left isolated.
The stark contrast is worth noting. Read on.

Implications and solutions: Cognitive development


“There is no clinically significant delay in cognitive devel-
opment…”
At first blush, you may think that the term “genius syndrome” applies only
to those Aspies who are of vastly superior intelligence. Not so. Aspies often
give off the air of genius (Asperger 1944, p.74 in Frith 1991) regardless of
their intellectual prowess. They often present a sense of aloofness (lack of
eye contact), or they act as if they are right (theory of mind issues). Some
Aspies speak in a pedantic style, sounding phenomenally intelligent to the
point of being noticeably different. For example, instead of saying, “Let’s
go out to lunch,” he may say, “It appears to be the hour in which our bodies
require nourishment.”
220 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Being able to appear highly intelligent is a mixed blessing. If your


Aspie partner has managed to achieve a genius persona, it may serve him
well in employment or in social settings. People make allowances for
geniuses that they wouldn’t make for the average Joe. But on the home
front, the genius approach doesn’t provide many benefits. Within the
home, couples discuss intimate matters, work as a team, and adjust to
accommodate other family members.
The genius appearance may be the root cause for depression. The
Aspie may succeed in life only to find that the apparent fundamental joys
of life are missing (friendships, sensory balance, inner peace, carefree flexi-
bility, etc.). Like a king who can “have it all,” the Aspie may find that the
things he desires most can’t be bought, learned, or appreciated. He may
curse the knowledge he has gained if he realizes all that he has been
missing.
CREATIVITY

What we lack in common sense, we make up for in creativity.


Adult Aspie

Researchers and laymen sometimes diagnose at a distance some of the


highly creative and prominent geniuses: Bill Gates, Albert Einstein, Glenn
Gould, Sherlock Holmes, Bobby Fischer, and many others have been said
to have Asperger Syndrome. The book Diagnosing Jefferson by Norm Ledgin
(2000) shows us an extensive review of the diagnosis of the American
president, Thomas Jefferson.
There are many aspects of AS that tend toward high creativity: the
ability to disregard society’s rules, the unusual viewing of objects as
animated and people as objects (Tantam 2000, p.383), the ability to disre-
gard portions of communication, the ability to see a hand waving as
multiple frames rather than a sentimental wave goodbye, the ability to
separate emotion from fact, etc. Aspies also have excellent skills on
embedded figures tests, e.g. identifying a picture within a picture that may
be difficult to see without analyzing it. Researcher Simon Baron-Cohen
describes the Aspies he tested: “I was impressed by the degree of
talent…many are super fast at spotting details. You hardly have time to get
the experimental materials out on the table before they’ve spotted the
FIFTH DIAGNOSTIC CRITERIA 221

target. You’ve hardly managed to get the stopwatch going. The normal
brain, as it were, takes much longer” (Baron-Cohen 2001, p.186). This
ability may help your AS partner solve problems in your relationship – the
overall picture won’t distract him, allowing him to focus on the smaller
details. For example:
My side of the family was having a bit of in-fighting – sisters arguing
with my brother and parents siding with one of my sisters. It was
getting ugly. I asked my wife [AS] how I should deal with it and she
stated the answer in one single, simple sentence. She could only see the
simple, initial facts and wasn’t distracted by emotion or tangents – the
perfect solution to a disastrous situation.
There are many potential benefits to Aspie-thinking. This creativity, or the
potential for it, may be one of the unexpected blessings hidden under the
more obvious “disadvantageous” AS traits.
UNIMODAL BEHAVIOR
Ask your Aspie partner: do you become frustrated when asked to do two
things at once? Do you have difficulty writing and talking at the same
time? If so, your partner may be showing signs of unimodal behavior.
Unimodal means that a person’s brain can function effectively through
only one modality (sight/written, sound/aural, touch, smell, taste) at a
time. For example:
In college, I couldn’t take notes while listening to the professor. I could
either listen or write – one or the other, not both.
The implications of unimodal behavior can be enormous for a married
Aspie trying to raise a family. Imagine for a moment the typical evening at
my home. I’m making dinner while talking to a client or a friend on the
phone, while helping my son with his homework by writing notes on his
paper, while feeding the baby with one hand, while monitoring the food
cooking in the background, etc. I must have all senses on overdrive in order
to function effectively in the evenings. My Aspie husband is able to pick
one of these tasks and perform it effectively. For example, if I ask him to
clean the bathroom sink while watching the children in the bathtub, I can
be guaranteed that one or the other will go undone. He can focus on one at
a time. He may be able to bounce back and forth between the tasks with
222 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

much distress but he cannot perform them concurrently. Here are a few
other examples from the Aspie’s perspective:
She called me on the phone while I was on my way to work. I was trying
to do four things at once: 1. press “Talk” on the cell, 2. turn down the
radio, 3. shift gears and 4. put on my sunglasses. Instead, I dropped my
sunglasses, pulled the cell phone earpiece out of my ear, turned the radio
off, and then shifted gears correctly. At least I got one out of four
correct!
Or:
If someone asks me to do too much, I just shut down. I can’t do
anything.
Or:
If she asks me to do two things at once, I can only hear part of it. I can do
the dishes or take out the trash, but not both. And I need some breathing
time in between. I can’t be go-go-go. I need time to consciously switch
from one task to the next.

What it may look like: Self-help skills/adaptive behavior


“There is no clinically significant delay in…self-help skills,
adaptive behavior…”
The term “self-help skills” is typically used to define a child’s ability to eat,
brush teeth, get dressed, and otherwise help himself. By definition, all of
these tasks are doable for an Aspie unless there is a secondary condition.
While the adult Aspie won’t show any significant self-help-related
problems, when the adult Aspie is married, the self-help skills are
expanded, stretched sometimes to an impossible length. The Aspie’s
self-help skills now require coordination with another person. For
example, something as simple as brushing teeth in the morning will now
require the Aspie to maneuver around someone else’s toiletries, possibly
even timing the tooth brushing around that of the partner. Sounds simple,
but it could be a significant source of stress.
Everyday living skills such as walking around an obstacle, putting on
sunglasses on a sunny day or writing “milk” on the grocery list are consid-
ered “adaptive” behaviors. They are the skills that a person learns in order
FIFTH DIAGNOSTIC CRITERIA 223

to adapt to the world around him. Adaptive skills are considered develop-
mental, i.e. the skills develop progressively as a person ages and knowl-
edge grows (Attwood 1998, p.176). A person’s adaptive behaviors are
usually graded on an age-equivalent score. For example, a four-year-old
child would be expected to have adaptive behaviors similar to that of other
four-year-old children.

Implications and solutions: Self-help skills/adaptive behavior


“There is no clinically significant delay in…self-help skills,
adaptive behavior…”
Self-help skills and adaptive behaviors may be mastered as an Aspie grows
and achieves adulthood. If the Aspie chooses to enter into a long-term
relationship, the necessary skills and behaviors jump quickly to a new
level. Even the smaller daily tasks such as cooking meals and sleeping at
night may reach a new level of complexity.
Beyond the little day-to-day tasks lie the big issues: jobs, babies,
moves, sickness, money, and extended family relations. These are big issues
that cause many marriages, Aspie or not, to break up. Let’s talk about a few
of them and how they are impacted by AS.
AVAILABILITY TO HELP
One of the fundamental aspects of a relationship is “being there” for your
partner. The general NT consensus is that “being there” for your partner is
as simple as a hug, spending time together, comforting each other, or some
other simple act. Ironically, knowing how to comfort another individual is
a highly complex process involving many steps and requiring the ability to
mindread in order to determine what type of comfort the other person
requires. Does she need a hug? A drink of water? Do I give her extra space?
The myriad of options can all but freeze an AS partner who literally cannot
mindread and therefore is playing a random guessing game trying to
determine his partner’s needs.
My Aspie husband, as brilliant as he is, often cannot identify my needs.
For example, I have had many back injuries and am not supposed to carry
heavy objects. One day my husband saw me carrying several heavy objects
in my arms. In an effort to be helpful he said, “I can see that you are limping
224 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

and that you are carrying heavy things, but I don’t know what to do about
it.” It is rare for him to be able to verbalize his thought processes so clearly,
but I appreciated the effort and told him exactly how he could help. In this
situation, I wasn’t hurt badly and was able to communicate my needs
clearly. Another woman explains her experience:
Once, I broke my ankle, was five months pregnant and had a torn
rotator cuff [a part of the shoulder] so I couldn’t use crutches. Instead of
helping me keep the household functioning, he [AS] would trip on me
as I crawled on hands and (sometimes bloody) knees to do the house-
hold chores necessary to keep life going for our kids. Completely
oblivious to what was needed.
In an NT relationship, if a partner doesn’t know what to do for the
other, he will seek out answers, try something that may or may not work,
but will somehow make an effort. In an AS relationship, if the person with
AS doesn’t know exactly what to do, he will typically do nothing
(Attwood 1998). One woman related:
I thought my body was aborting our baby. It was our first child. I was
devastated. The intense stress was making my body reject my baby and I
desperately needed comfort. I was bleeding… During the ordeal, my
husband [AS] sat on the bed, working on his laptop… He didn’t know
what to do, so he did nothing.
If the person with AS doesn’t do anything in the face of a difficult situa-
tion, it can be misconstrued as many things: a lack of caring, disinterest, a
rebuff, or many other unappealing, even sinister motivations. Whatever
the intent, the non-AS partner knows on some deep level that her AS
partner may not be available in times of great need. One woman revealed
the depth of her concern over this issue:
I have a recurring nightmare. It starts with me in some type of danger.
The worst one is that I am swimming in a large, open lake when some-
thing from underneath starts pulling me under. I’m drowning but I
manage to fight my way to the surface a few times to gasp for air and
scream for help. I can see my husband [AS] standing on the water only
ten feet away. He stands there staring at me. He stands there until I stop
coming up for air then he walks away. When I wake up I’m usually filled
with such intense despair that it takes days to pull out of the depression.
Sometimes in the nightmare I’m in a burning car, sometimes I’m being
eaten by wild animals. There are many different variations to the night-
FIFTH DIAGNOSTIC CRITERIA 225

mare but he always stands exactly ten feet away staring at me with a
deathly blank stare. I awake in a sweat, shaking and sobbing. Some-
times my husband holds me until I stop crying, but it’s little relief for
what keeps happening in my nightmares.
This woman’s nightmares reveal that she’s aware that her husband can’t
spontaneously reach out to her on an emotional level and fears that her
husband wouldn’t be able to help her on a physical level if she ever needed
help. Her fear is that even if it came to a matter of life or death, her AS
husband would not be able to help her.
Unfortunately, she may be right. People with AS typically respond best
to set schedules, predictable routines, and calm support people. Throw in
an unexpected tragedy or two and your partner may tailspin into a
meltdown or simply not enter into the situation to help you. There’s also
the possibility that a person with AS will respond to an emergency situa-
tion exceptionally well, due to his ability to react logically and unemotion-
ally.
REACTIONS TO PHYSICAL DANGER
It appears AS may help a person respond particularly well to dangerous sit-
uations that require a logical response. In the face of danger, the person
with AS may be calculating the long list of logical possibilities while the
NT is hopelessly thinking, “Help!” Following are two personal experiences
with contrasting outcomes. The first shows how my Aspie husband was
able to respond successfully to a physically dangerous situation that
required a higher level of thinking than is possible for most people:
One foggy December night, we were on the freeway when we hit
several patches of ice. The freeway was busy and there were at least a
dozen cars within our view. Some of them started skidding out of
control. My ever-logical husband was able to track all the cars in front of
us, beside us, and behind us, somehow avoiding them all. I was amazed
at his ability to drive out of danger.
In contrast, look at an emergency situation that happened to us where logic
didn’t help my AS mate respond appropriately:
We were watching our son’s soccer game when our son was run over by
another, bigger kid. I jumped up and ran alongside the coach to go pick
up our little boy and carry him off the field. After everything calmed
down I realized that my husband hadn’t budged from his foldout chair
226 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

on the sidelines. He had sat there the entire time, staring at us. I asked
him later, when my temper calmed down, why (“Why?!“) hadn’t he
come to help his hurt son? He responded, “I didn’t know what to do.”
One solution may be to offer a quick suggestion either verbally or
physically, if at all possible. In the above example, I could have quickly
grabbed my husband’s hand, encouraging him to run with me out onto the
field to get our son – a form of physical scripting. Even if he hadn’t known
instinctively what to do, at least he would have gone through the motions
of acting like a caring father, resulting in me not being quite as frustrated
with the situation. As this sort of response becomes more commonplace
for my husband, he is slowly learning how to respond appropriately. He is
learning to jump up when his child is in distress. Although it may not be
natural at first, it can become a learned habit.
Another solution is to recognize how and why your partner acts the
way he does. One enlightening description is given by Gisela
Slater-Walker (2002) in her book An Asperger Marriage as she explains how
her husband with AS, Chris, would react to physical danger: “What would
he worry about if he found me in the kitchen having cut myself very badly?
Chris replied that it would be whether he would do things right, not
whether I would be all right” (p.53). An awareness of how a person reacts
to a certain situation is the first step to finding a solution.
Another strategy is to help your partner learn to care for you. If you
and your AS partner have open lines of communication, teaching him how
to care for you could easily slide into your regular interaction patterns. For
example:
I’d like it if my husband [AS] could help me in my old age, so, for now,
I’m building his confidence by asking him to help with small things. I
sometimes ask him to get my vitamins for me if he’s near the cupboard.
If I cut myself shaving, I ask him to get a bandage for me. I play tennis
and sometimes twist an ankle so I’ll ask him to get me an ice pack. I
think that if he gets used to helping me with the little things, he’ll be
better prepared to help me if something really awful happens.
Another potential improvement is to analyze what it is about the situation
that sends your partner off balance, then deal with this through a psycho-
therapist. One wife gave an example of how she helped her husband
FIFTH DIAGNOSTIC CRITERIA 227

through a life-changing event that’s standard for most people, but was
particularly difficult for him:
I spent eight years preparing my husband for a baby before I threw out
the birth control pills. It took eight long years. He needed to overcome
so many things first. He needed to overcome his fear of noise, his
distaste for getting up in the middle of the night, his obsession with
smells, along with so many other quirks. We did a lot of therapy (well, I
went to therapy and brought the ideas home to him) and I had to be
ridiculously patient, but now we have a beautiful baby boy and I see my
husband growing every day alongside our son. It’s beautiful. Without
all the therapy and preparatory work, I think it would have been disas-
trous. It would have been the end of our marriage.
When it comes to life-changing events such as physical injury and danger-
ous situations, there are no easy answers. The advice of “Be strong” doesn’t
apply – nobody is always strong and perfectly healthy. If the injury or
danger requires a logical response, it’s highly likely that your AS partner
will be able to respond better than most people. If the dangerous situation
is unpredictable and emotional, it’s more likely that the NT partner will be
the one to come to the rescue. Whatever the case, remember that your part-
ner’s reaction to severe physical danger may be different, and even the
strongest NT may not be able to help you in emergencies.
REACTIONS TO GRIEF
It has been said that Aspies tend to respond inappropriately to grief. They
may laugh, snicker, or smile at an inappropriate time (Attwood 1998,
p.159; Tantam 1991, p.176). One husband explained how his Aspie wife
dealt with grief:
When we went to her grandmother’s funeral last year, something really
strange happened. She loved her grandmother dearly but hadn’t
mourned her death yet. I thought my wife would begin the grieving at
the funeral when she saw her grandmother in the open casket but when
she saw “Nana” in the casket, she touched her hand, muttered, “Oh
gross,” and casually walked away. It’s been a year now and my wife still
hasn’t grieved. I keep waiting for the other shoe to drop, but I’m begin-
ning to think that there is no other shoe. Maybe this is a good thing and
I should take the sigh of relief I’ve been waiting to take.
Another family explained the following:
228 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Our neighbor’s house burned down and we took them in. The wife was
sitting at our kitchen table crying. She had just lost everything… He
walked into the room and with sparkling eyes and a chirpy tone
exclaimed, “This is so exciting!”
It’s no surprise that periods of grief are different for a person with AS. If by
chance your AS partner is able to pull out of the grieving period more
quickly than you, you can count your blessings that at least one of you is
strong during a difficult time. Your partner’s ability to skip past the steps of
grief without repercussion may be a benefit; if offense can be avoided.

What it may look like: Curiosity


“There is no clinically significant delay in…curiosity about
the environment…”
Something odd happens to humans as they grow older – they lose their
curiosity. They stop asking: “What happens when I mix toothpaste with
pop?,” “Why do some cereals make more noise than others?,” and “What
happens when I throw a handful of pudding at the ceiling fan?” They stop
wondering, stop pondering, stop exploring, and lock into the workaday
world of adults. Not all people go through this unfortunate transformation
but, sadly, nearly everyone loses their original childhood curiosity to some
extent.
This part of the diagnosis signifies that AS children are just as curious
as non-AS children about the world around them. They all actively engage
in fulfilling their curiosity in their own ways.

Implications and solutions: Curiosity


“There is no clinically significant delay in…curiosity about
the environment…”

Men marry because they are tired; women because they are curious.
Both are disappointed.
Oscar Wilde, A Woman of No Importance
FIFTH DIAGNOSTIC CRITERIA 229

This is the one part of the diagnosis where you can take a huge breath of
relief. There’s nothing awful to report in this area – no hidden twists that
are magnified by a long-term relationship. But there is a fringe benefit that
merits noting.
When couples are dating, they often experience a strong, even sensual,
curiosity about each other. The curiosity seems to disappear once the
partners understand each other. This reveals a fringe benefit for marrying
an Aspie. You’ll probably never understand him! You can marvel at his
extraordinary spots of brilliance and be surprised at his unusual
off-the-wall behaviors. I know that when I’m an old woman, I’ll still laugh,
or cackle, at my husband’s crazy ways and I’ll be just as curious as ever
about his unique way of viewing the world.
BREATHING LIFE INTO THE RELATIONSHIP
The newness is gone, you’re both getting old, rickety, and even more set in
your ways – how do you breathe life into your relationship? The typical
answers are to try something new (No!), renew your vows (Why?), or to go
on a romantic faraway vacation (oh, the sensory chaos!). As in nearly all
other situations, the typical strategies don’t work. So, how can we breathe
life into the more advanced AS relationship?
When NTs think about revitalizing their relationship, they think in
idealistic terms: a second honeymoon in Tahiti, a ridiculously expensive
anniversary ring, a romantic candlelit dinner on a boat in the middle of the
lake, or other top-of-the-wish-list ideas. But when we’re dealing with a
“disability,” we lower our expectations, thinking we can’t have the best.
The tendency to lower expectations when dealing with a disability is a
common knee-jerk reaction that I’ve seen happen far too many times with
children in school.
What if we didn’t lower our expectations? What if we just shifted our
focus? If we shift our focus to fit the two people we’re dealing with (you
and your Aspie partner) then maybe, just maybe, you can breathe life into
your relationship just as effectively as the couple who spends three
delightfully invigorating weeks in Tahiti.
With a solid understanding of AS and all its implications, you can
begin to think of what would achieve the ideal end goal for you and your
partner. For example, my husband’s ideal revitalization includes: 1. some-
230 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

thing at home, 2. something involving computers, 3. something that


allows him to sit still for long periods of time. My ideal revitalization
involves: 1. travel, 2. good food, 3. art museums. In the world’s view, these
wish lists dictate a wife pitifully alone on vacation and a husband in a dark
room, frozen in front of a glowing screen as his bottom flattens and his
beard grows – nothing you’d ever see in a travel brochure.
If we are to stick to our end goal of breathing life into our relationship,
we must pick the items that are at the top of our lists and not compromise
our way down the wish list to the point that both of us are only
semi-happy with the arrangements. We’ve tried picking the top items off
our own wish lists several times and when we link up after the revitaliza-
tion, we’re both so eager to be back with each other that we feel like we’ve
had the second, third, and fourth honeymoons already.
As a comparison, what would we do if we followed the world’s view of
revitalization? The world’s view dictates that we would 1. spend time
together, 2. go somewhere mutually agreeable, and 3. visit socially accept-
able places. All of these would turn my husband into a beastie. He would be
miserable from the sensory overload, the change in schedule, and the
too-intense amount of socialization. We’ve tried this before and it’s called
a “family vacation” not “breathing life into the relationship.” If you truly
want to revitalize your relationship with your significant other, try making
a list of the top three wish-list items that would make you happy and have
your AS partner do the same. When all is said and done, a happy partner
makes for a successful relationship.

Endgame implications and solutions


Although the AS diagnosis says “no significant delay in general develop-
ment” you may feel inclined to pencil in “difficulties in every area of life!”
In a clinical, analytical setting it may be easy to pinpoint your AS partner’s
difficulties to the select few in the diagnostic criteria, but in real life the
problems may appear all-encompassing, covering all areas of daily func-
tioning. You may doubt whether or not you can help your partner with this
heavy load. You may look at your life one day and realize that you have
inadvertently become – gasp – a support person.
FIFTH DIAGNOSTIC CRITERIA 231

AM I A SUPPORT PERSON?
Asperger Syndrome is still a relatively new diagnosis. Help is still sparse
and even non-existent in many parts of the world. As you search for
answers, you become your own researcher, your own therapist, and your
own best solution. You’ll spend hours researching, evaluating, contemplat-
ing, brainstorming, and finally trying new techniques that could possibly
improve your marital relations. The fact that you’ve read this far in this
book indicates that you’re probably already deeply entrenched in the role
of support person. An example of one woman’s realization:
One day when he [AS] was leaving for work, I had to remind him to get
his briefcase, to go back and shave, to remember to eat breakfast, and to
tuck in his shirt. As he left, I realized that he was just one of the children
to me.
How could this type of relationship occur between two intelligent people?
AS researcher Digby Tantam (2000) points out that we easily fall into the
supporting role “because the adult with AS seems so indifferent to his or
her own best interests…” (p.396). He calls this “enmeshment” and points
out that becoming over-involved in helping our partner function is the
quickest way to burn out.
As we morph into a support person for our partners, the traits we
develop and strengthen through daily practice may become part of our
character, to the point that we become a support person for others also.
While many traits of the support person are good (compassionate,
generous, etc.), many of them are detrimental (martyr, failing to meet your
own needs, etc.) As one woman explains:
I determined that I would do everything I could do to build him [AS].
A-ha! The “savior” syndrome!
As you become an all-encompassing support person for your partner, the
tendency to support others may overflow into other areas of life. You may
end up being the quintessential support person for everyone around you,
as the following woman explains:
One night I dreamed that I was hiking through a dry mountainous area
with about 20 friends and family members. At one point there was a
large chasm in the mountain that was wide enough for people to jump
across, but nobody wanted to. I went to the front, lay down with my feet
digging into one side of the chasm and my fingernails gripping the
232 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

earth on the other side, staring down into the endless abyss beneath me
while people walked across my back. I woke up in a sweat, angry and
confused. It was exceedingly clear that I was consciously carrying other
people’s burdens… Not only my husband’s burdens, but everyone’s.
Ironically, you may need relief more than your Aspie partner does. You may
need to seek out support to fill in some specific needs that are not being
met by your partner. You may need to brainstorm for ways to fill some of
those voids so that the relationship does not flounder under the weight of
your burnout.
One woman explains how her wishes to help her partner contrast with
how much help she can actually give:
I wish for a miraculous pill
That will cure my partner’s sensitivities.
I wish for a magical potion
That will give him the Tin Man’s heart.
I wish for a marital therapy
That will teach him to talk with me as others do.
I wish for a panacea
That he may be released from his social pain.
But
This is his journey, not mine.
I cannot claim it.
I can walk beside him, but not for him.
I can comfort him…sometimes.
I can observe and identify
But I cannot feel his pain.

Unless there is a cut-off point where the non-AS partner recognizes that
her efforts are enough, then the non-AS partner may fall, without restraint,
into the all-encompassing role of full-time support person. More often
than not, the supporting partner will resent the responsibility of caring for
FIFTH DIAGNOSTIC CRITERIA 233

someone with a diagnosis. Where does the resentment stem from? Usually
it stems from a perceived imbalance of one person giving more than the
other. Let’s look at the imbalance and see it for what it really is.
IMBALANCE
When we enter a relationship, we expect it to be equal, with both partners
contributing in their own way. But how many relationships have broken
up because one partner perceives a distinct imbalance, usually, “I’m giving
everything I can and he just doesn’t care”? This is a common problem, but
in an AS/NT relationship the perceived imbalance may appear more
severe. For example:
Right after we were married I realized that I was probably going to end
up doing the majority of the work in our marriage. He wouldn’t join me
in tasks that are typically shared by a couple.
If the imbalance isn’t perceived immediately, then it may be perceived later,
as an optimistic partner holds on to the belief that all people grow and
improve, all people adjust naturally. AS is a developmental disorder,
meaning that a person’s abilities will develop and improve as the person
ages (Frith 1991, p.2). However, the improvements won’t appear in the
format that the uninformed non-AS partner is looking for. The improve-
ment will most likely go entirely unnoticed.
One flaw in expecting a balanced, equal relationship is that we expect
an eye for an eye and a tooth for a tooth, but unless we married a mirror
image of ourselves we won’t be able to get an eye for an eye. The reciproc-
ity won’t be balanced according to our immediate perception. If we can
open our minds to the bigger picture, we may be able to see that an eye for
an eye is a raw deal. The issue of gift-giving lends itself as a good example
of easily perceived imbalance:
Birthday presents have been one huge source of grief for me. For my
first birthday after we were together, he [AS] gave me a blender. (He had
no idea that he was communicating a Donna Reed stay-in-the-kitchen
message to me – I got angry.) The second year, he gave me nothing. (He
was still scared from the first year.) The third year, he gave me a new
computer (something he wanted – I got angry). The fourth year, he
“forgot” again. Every year, I’ve given him a thoughtful present, some-
thing he really wanted and needed. He’s always been appreciative, but
he doesn’t know how to do the same for me.
234 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

The wife was expecting that her husband had as much common sense in
the arena of gift-giving as she did. Perhaps the balance in this situation lies
in a distinct imbalance between two different areas – the gift-giving
dilemmas are balanced out by other actions. For example:
I can never remember when to take my car in for maintenance, get the
tabs renewed, change the oil, or all the other things that keep my car
running smoothly. He [AS] manages it all.
The imbalance in one area is measured against the imbalance in another
area as both partners contribute in ways that utilize their own unique
strengths.
If we expect an across-the-board equality with our partners, we will be
disappointed – Aspies have highly skewed abilities (Attwood 1998). We
need to look hard, think outside-the-box and realize the balance may be
hidden. For example:
I always wanted my husband [AS] to love the arts as much as I do. I love
going to the theater and I adore ritzy social gatherings. My husband
enjoys none of these and I often think that my sophistication is lost on
him. There appears to be a severe imbalance between us... One night he
got out his telescope and set it up on the back porch. I wandered out and
we looked at the stars. We saw Jupiter and tracked it across the sky. We
talked about our galaxy, our significance in the grand scheme of things,
and we talked about eternity: “The length of time I wish to be with you.”
It was the first time I had a glimpse into the depth of his soul. Since then,
I have found many venues through which we can bond as soulmates.
I’ve seen the sophisticated side of him and that’s the side I choose to
love.
This particular Aspie husband couldn’t possibly equal his wife’s social
aptitude, but he could definitely equal her level of sophistication. They
both had to be patient for the equality to be revealed.
Perhaps your balance is found in your opposing strengths. For
example:
He [AS] is the strong, silent type who does not get emotionally entan-
gled in difficult situations. He can see them logically. I am vivacious,
energetic, and I run on high-power emotions. We balance each other
out.
Or:
FIFTH DIAGNOSTIC CRITERIA 235

I’m the one who brings spontaneity and life to the relationship. He [AS]
is the predictable one who always knows where the car keys are.

A FRAMEWORK
I have found it extremely difficult to differentiate between acts that qualify
as supportive acts and those that place me in the role of overworked,
underpaid saint (i.e. martyr). I have yet to find a resource (book, counselor,
or other) that addresses this issue to an extent that allows me to define my
role on a daily, decision-by-decision basis. I developed a visual framework
within which I could differentiate between the types of support I can and
cannot render effectively to my Aspie partner.

Intense interest My support Irrelevance

All the interactions we have as a couple fall somewhere along this


spectrum. On one end of the spectrum is my husband’s intense interest
mode: the particular areas over which he wants total control and I give it to
him gladly. For example, his computer room and work habits, his routines
and rituals, his collections and his personal items are all on the intense
interest end of the spectrum. I’m safer traveling into a war zone than I am
intruding into his intense interests.
On the other end of the spectrum are all the issues that he considers
irrelevant: being socially active in the neighborhood, bonding with
extended family, taking vacations, dinners with friends, and going to
reunions. These are the no-man’s–land issues that he will not and cannot
address. For me to travel into this area, I will travel alone. At times, I may be
able to drag him there, but I will be dragging a shell of a man behind me.
In-between these two extremes lies the area where my husband and I
work together. Within this area, he accepts and even requests my support.
This is the area of relaxed weekends together, mutually agreeable deci-
sions, and tender give-and-take interactions. This middle area is safely dis-
tanced from his fanatical interests, but it is still relevant and meaningful to
him.
236 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

All of our meaningful interactions lie in the middle: both the pleasant
and the unpleasant ones, such as finding clothes that look good together or
surviving a “public performance,” i.e. attending a luncheon. In these situa-
tions, he wants and needs me by his side and gladly accepts my support.
Within this small window, I am his support person, confidante, and friend.
When I can identify a situation and where it lies on this spectrum, I can
better identify whether or not my efforts will do any good. Too far to the
left and I’m walking into the war zone. Too far to the right and I’m walking
alone. In the past, I intruded into the left and I pushed him to the right, all
in the name of supporting a partner with a “disability.” Without this partic-
ular AS-related visual for me, the majority of our interactions were
negative. I was overextending, covering the spectrum, doing far more than
my share of work as an all-encompassing support person because I
thought it would be good to support him in every issue all the time, as NT
couples strive to do. In my AS-linked relationship, my work was much
more narrowly defined. I didn’t need to worry about the left or the right – I
only needed a small safe ground where we could meet and interact.
ANGER – WHY?
Please note that this section only deals with how the non-AS partner deals with anger.
I do not discuss AS anger because it is a variable trait, i.e. the diagnosis does not
dictate how a person with AS expresses anger. The only DSM-IV related information
we can address is how certain AS behaviors prompt anger in a partner.

If our Aspie partner has “no significant delay in general development” then
why are some non-AS partners so angry? Why does this anger well up so
quickly and consistently at nearly everything our AS partners do or don’t
do? I have found that living with a person who has AS can be frustrating,
irritating, and tests my temper to its limits. Anger management seems to be
a common issue for the non-AS partner (Aston 2001, p.27, pp.49–51;
Attwood 1998, p.167).
In our early marriage years, before we knew about my husband’s AS
and before we had learned how to live with each other, I found that nearly
every weekend, when we spent significant time together, I would end up
becoming furious, enraged with out-of-control anger. For years I thought
it was my fault. My husband was calm, cool, and collected (even cold)
while I had steam coming out of my ears.
FIFTH DIAGNOSTIC CRITERIA 237

It appeared that I had a significant anger management problem, but in


my gut I knew the burden wasn’t all mine. I only had anger management
problems with him – all my other relationships were healthy. There were
specific things that he was doing (or not doing) to prompt my anger. His
peculiarities seemed tame…he made inappropriate comments and ignored
verbal and nonverbal cues. Although these are typical AS behaviors, I
needed a strong, fast solution that would help me maintain composure
during our time together. This AS-invoked anger had me blowing up every
weekend and I was beginning to hate myself for what I was becoming.
On a typical weekend, here’s how I dealt with it:
• Mutter under my breath, “What a jerk.”
• Give him icy stares.
• Grow in anger until I erupt and he begs for understanding.
Here’s how he reacted:
• He couldn’t understand my muttering so he ignored it: “To
whom is she speaking?”
• He literally couldn’t see my icy stares. He has learned to give
eye contact but it’s fake. He’s looking, but he doesn’t see.
• He had no idea that my anger was growing throughout the
day. He couldn’t see my body language cues and my cutting
verbal remarks went right over his head. When I did erupt, it
blindsided him and he was utterly clueless as to what was
happening.
Through several marriage self-help books and a few anger management
books, I learned how I needed to deal with our problem. I learned that I
needed to let off steam so I wouldn’t boil over. If I could let off steam peri-
odically, I would be able to overlook the minor problems that occurred
throughout the day, allowing me to be cool and collected for the bigger
problems. Even though it wasn’t an ideal solution, it was a way of limping
through the weekend instead of looking for a divorce attorney every
Monday.
The marriage self-help book only helped me. It couldn’t help my
husband because he didn’t want help. Plus, all the advice was contrary to
his way of being. I read, highlighted, and even quoted passages to him
238 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

from nearly every self-help/marriage book I had in my ever-growing


library, but none of these books addressed how an Aspie’s mind works.
Most marriage books tell you to state how you feel (“What?’), explore your
feelings together (“Feelings? Let’s not go there!’), and build your therapy
on a foundation of emotion and illogical sentiment. This didn’t work for
us. I had to break it down – take it one detail at a time.

Question 1. Can I communicate with him as I communicate with


others?
No, I cannot communicate with him as I do with others. He still needs
to learn the basics of common conversation and I’m not his teacher –
I’m his wife. He still needs to learn that when I say something, he’s
supposed to think of a response. We need to work at a more primal level
of survival for now.

Question 2. What do I want to communicate to my partner?


Honestly, I want to communicate my love and commitment to him.
When I’m angry it’s almost impossible to force myself to say something
nice, but I found that I could manage sarcasm. I could let “I love you too”
slide off my tongue in a sarcastic, “Yeah, right” sort of way.
Here’s the pattern: he would do something that appeared to be
mean-spirited and his actions would say to me, “I don’t care enough about
you to pick my dirty old socks up off the floor. You do it.” His actions
showed that not only did he not care, but he despised me. I desperately
wanted to respond with “I hate you! I really, really hate you!” I tried
responding with my true feelings but it provoked no response from him
and just made the anger hotter. Sarcasm was the key. Whenever his actions
said, “I don’t care about you. I despise you,” I responded with, “I love you
too.”
The first time I tried it, my husband turned around and hugged me
with sweet, sincere affection and a bit of relief. My sarcastic jab had been
dripping with hatred because it was a particularly difficult Saturday. But he
had no clue that I was communicating anything other than a genuine “I
love you.”
FIFTH DIAGNOSTIC CRITERIA 239

At first I felt like such a fake. Everything I had read screamed in my


mind, “Stop it! You’re lying!” I had to hold the strong memory in my mind
of why I was doing this. In the deep, strong part of my soul I wanted to tell
him I love him. It was one of those “the mind is willing but the flesh is
weak” type of things. I didn’t want to become a bitter old wife, incapable of
seeing her husband for the sweet soulmate he really is. Each time I
managed to say “I love you too,” sarcastic or not, I grew more proud of
myself. I was conquering my own rage in the heat of the moment and
gaining back my self-respect.
Before I made this “I love you too” comment a habit, I looked into any
possible damage it could do. My husband is a brilliant man, capable of so
many things, but he doesn’t pick up on the tone of voice and has one
telltale AS sign: he is literal – he perceives comments at face value only. I
also looked into the possibility that I was giving him positive reinforce-
ment at times when he was doing something I didn’t like. But I wasn’t
training him to do things that made me mad, because his memory from one
incident to another is so poor that I can’t train him to do anything. Pavlov
has nothing on this guy.
Now our weekends are full of affirmations of love. On a particularly
bad day I tell him I love him dozens of times. He hugs me, kisses me, and
makes all the stress and anger melt away. It’s unconventional, but it has
saved us.

Note: only try this technique if you are sure that your partner has a weak perception of
sarcasm, does not interpret tone of voice and has little recall of what triggers a positive
reaction in you. Sarcasm is a cutting and destructive element of poor marriages and
will do severe harm if used inappropriately. Some Aspies respond to sarcasm, some
don’t. The main purpose of this passage is to encourage readers to think
outside-the-box to find strategies that effectively relieve stress and tension in unusual
relationships.

Whatever the reason for the non-AS partner’s anger, it must be dealt with
for the sake of everyone in the home. My favorite technique is to disappear
to a quiet spot to relax. Listen in to one woman’s experience with anger
management:
240 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Most of the time I’m able to enjoy my husband’s [AS] presence, but not
always. Sometimes I get so frustrated at our differences (the fact that
we’re from such different worlds) that I start in a downward spiral of
criticism and even hatred. I learned from a parenting book many years
ago that I could send my children to a time-out to cool down. One day,
my kids said, “Mommy, you need a time out!” So I took it. It was the first
of many mommy time-outs.
Now I give myself time-outs from my husband. I rarely need more
than 10 to 15 minutes of time to relax, do yoga, practice deep
breathing, or go out for a short walk before I can get back into the vibe
of enjoying each other again. My husband has learned to say “You need
a time-out” when he senses I’m being critical (the first sign of me
sinking into pessimism). I always take it, even if I slam the door on the
way. I know that it’s an internal fight inside of me and me only, to
overcome the powerful pessimism that tells me that my husband is a
freak and our marriage will never get better. When pessimism
overcomes me, I need to get out of the room, regroup, reflect, and realize
that I will go nowhere with a bad attitude.

There are plenty of books that deal with anger management. One
best-selling favorite for women is The Dance of Anger by Harriet Lerner
(1985). Look for anger management books that will help you manage your
own anger without blaming your partner. Books that focus on your
partner’s role in your anger may prove ineffective unless they are written by
someone who understands the AS condition.
This section would not be complete without mentioning the theory
that a person with AS may purposefully provoke you to a higher level of
anger than is necessary for a given situation because the heightened
anger/rage is easier to predict than the more fuzzy, option-riddled
emotion of being “merely annoyed.” Digby Tantam (2000) explains it as:
“Reactions to extremes are easier to predict…because there is less room for
individual variation… Outrageous actions include transparent lies, pro-
vocative aggression…any simple action likely to produce an extreme, and
therefore predictable, response” (p.390). We can use this knowledge to our
advantage by identifying our partner’s motivation behind the provocation.
If my Aspie partner is provoking me, I know it is because he is confused.
He is searching for a predictable, previously scripted resolution to the
current confusion and is using a cattle prod on my emotions in order to
FIFTH DIAGNOSTIC CRITERIA 241

find it. If we both have the strength, we can revert back to logic, and
reason our way through the issues rather than allowing the rage to take its
course.
CHAPTER 9

Sixth Diagnostic Criteria


Not Pervasive Developmental
Disorder or Schizophrenia

F. Criteria are not met for another specific Pervasive


Developmental Disorder or Schizophrenia

Not a pervasive developmental disorder


Pervasive developmental disorder (PDD) is an umbrella term for six differ-
ent disorders including autism, Asperger Syndrome (AS), pervasive devel-
opmental disorder – not otherwise specified (PDD-NOS), Rett’s disorder,
childhood disintegrative disorder (CDD), and Fragile X syndrome.
Although this is the technically correct grouping of disorders, people
often refer to a subgroup of these disorders as autism spectrum disorders
(ASDs) including AS, low-functioning autism (LFA), high-functioning
autism (HFA), and PDD-NOS.
The DSM-IV indicates that the diagnostician should be careful to
check other PDDs and schizophrenia as possibilities before diagnosing
AS.

243
244 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Not schizophrenia
Schizophrenia is a thought disorder. Its symptoms include impairment in
thinking, delusions, hallucinations, changes in emotions, and changes in
behavior. There is probably more than one cause and it often begins
between the ages of 15 and 25. Many people with schizophrenia are
passive, quiet, and withdrawn. They have high levels of anxiety and often
have sleep disorders, staying up all night and sleeping most of the day.
They may even hear voices.
Why is schizophrenia confused with AS? Because many of the
symptoms overlap: high levels of anxiety, social withdrawal, and unusual
interpretations of reality. To a layman, AS and schizophrenia may be
confused due to the Aspie’s learned ability to take on different personas,
giving the appearance of multiple selves. While this may be the case,
schizophrenia is not the appearance of multiple selves (that’s called “multi-
ple personality disorder’). Rather, schizophrenia is a split from reality
rather than a splintering of self.
Lorna Wing (1981) explains the difference between AS and schizo-
phrenia:
There is a marked contrast between the vague woolliness of schizo-
phrenic thought and the concrete, pedantic approach found in Asperger
Syndrome… People with Asperger Syndrome do not experience
thought echo, thought substitution or insertion, thought broadcast,
voices commenting on their actions, voices talking to each other, or
feelings that external forces are exerting control over their will,
emotions or behavior.

Not clinically shy or other diagnoses


Before we knew about Asperger Syndrome, we labeled my husband as
“clinically shy,” a term we pulled out of thin air to explain to others why he
acted so distressed in public. It was a term people seemed to understand
and it had no stigma attached to it. Of course, this definition only covered
a small number of traits that my husband exhibited. In An Asperger
Marriage, a personal story written by an AS/NT couple, the husband,
Chris, explains that he labeled himself as “socially disabled” before he
received the AS diagnosis (Slater-Walker and Slater-Walker 2002). Others
SIXTH DIAGNOSTIC CRITERIA 245

have also chosen labels that can quickly explain to questioning outsiders
why the person with AS acts the way he does.
Beyond the layman self-diagnosis are all sorts of other labels that may
be given to your AS partner. Some may say your partner is “narcissistic,”
“self-absorbed,” “egocentric,” “emotionally disturbed,” “passive aggres-
sive,” “strong-willed,” “inflexible,” “hard-headed,” “unfriendly,” “con-
fused,” “aggressive,” “argumentative,” and other unpleasant labels which
are most obvious on the surface when social interaction goes awry.
Your AS partner may also be labeled with a stereotypic image such as a
“computer geek” an “absent-minded professor,” a “reclusive genius,” or
many others that don’t do justice to your partner’s personality and charac-
ter.

Why the confusion?


There is confusion in the diagnoses because the difference between one
diagnosis and another can boil down to a few simple details. For example,
some identify the difference between AS and HFA as the appearance of
language delay: if the person experienced significant language delay as a
child, he has HFA; if not, he has AS (DSM-IV criteria for Asperger
Syndrome and autism). Another example: some identify the difference
between AS and HFA as physical dexterity; people with HFA have good
coordination whereas people with AS are clumsy (Ozonoff et al. 1991;
Smith 2000, pp.97–119; Tantam 1991, pp.148-9). AS may be confused
with many other similar diagnoses and it takes an experienced doctor to
find the diagnosis that fits a person best.

Faces, personas, and characters


Aspies may learn to take on the characteristics of others in order to blend
in. For example:
When I [AS] walk into a room, I look around to see if it’s a relaxed
group, stiff group, or a unique group. I have been able to identify the
three main types of groups and I know how to act within each one. I’ll
listen to someone for a few minutes to determine the level of slang used.
If their speech contains 20 percent or more slang then it is a relaxed
group conversation. I’ll mimic their body postures too. For example, if
246 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

I’m in a stiff group, I’ll look around and notice that they are standing up
straighter than normal, with their chins tucked in, eyebrows lifted, feet
together, and hands either in their pockets or holding something. I
look, listen, and mimic.
As the Aspie’s partner, you’ll get to see the different personas emerge and
retreat. Perhaps you have been annoyed by your partner’s faking in public,
thinking that the social act signaled dishonesty. Once you’re more familiar
with the AS diagnosis, you’ll see the myriad of reasons why an Aspie may
take on certain characteristics in order to get by. But these survival tactics
may have a drawback in that “...there can be some confusion when adults
with Asperger’s Syndrome act another persona in real life as this can be
misconstrued as Multiple Personality Disorder rather than a constructive
means of coping with Asperger’s Syndrome” (Edelson 1995). Developing
socially appropriate personas may be a wonderful way for the Aspie to
scrape by and even succeed in social endeavors, but it may prove difficult at
home where your Aspie partner steps off stage.
I have often reflected on the possibility that the unusual social forma-
tion of the Aspie child leads to a weak sense of self, thus allowing the Aspie
to take on new personas with relative ease. An individual’s sense of person-
ality is formed between birth and 12 years of age. During these years, Aspie
children do not integrate into the school atmosphere and do not form
many solid friendships. These friendships, or lack thereof, are what help
shape the child’s personality. Perhaps the child’s personality is differently
shaped, leading to a fuzzy sense of self in later years. Digby Tantam (2000)
stated it clearly: “The primary impairments of AS obstruct normal social
interactions and may, therefore, prevent the formation of social relation-
ships which are believed to be especially important in laying the founda-
tion of personality” (p.388).

“It’s not normal, but it’s natural”


This is a phrase I hold to dearly: “It’s not normal, but it’s natural.” When my
Aspie husband does something that wreaks havoc on my inner sense of
acceptable behavior, I remember when he first coined this phrase for us
many years ago.
“It’s not normal, but it’s natural.”
SIXTH DIAGNOSTIC CRITERIA 247

As you read about AS, your head may spin as you run across controversy
after controversy. Are Aspies capable of interpersonal relationships? Do we
call them “Aspies,” an “AS person,” or “a person with AS”? Do they have AS
or are they AS? Is it a medical condition, syndrome, disability, or desirable
personality trait? These questions whirl around the research world fast
enough to make me dizzy. I often want to just throw in the towel, snuggle
up with my husband, and forget that we ever heard about “that Hans guy.”
“It’s not normal, but it’s natural.”
Perhaps attaining a deeper understanding of the AS traits, and then
accepting their natural neurobiological intricacies will lead us to a
healthier, happier, less stressed existence with these wonderfully
delightful creatures who teach us new lessons every day.
CHAPTER 10

The AS-Linked Long-Term


Relationship

There is plenty of research about marriage and even more about divorce,
but there is scant research available to help AS-linked couples. Although
the prognosis is bleak, I hold strongly to the belief that there are solutions
that can help us build successful lifetime relationships with AS partners. I
believe that finding these solutions takes an uncommon level of
dedication.

Why did we marry?


The one question that baffles even the most intelligent NT is: “Why did I
marry him?” Aspies can hide so many of their deficiencies so well that in
retrospect it may seem like you barely knew each other before tying the
knot. For example:

When I first met her [AS], she was so appealing. She was a bit secretive
and that’s sexy in a woman, especially since we met in the 1960s when
most girls were letting it all hang out. She was intensely interested in
medicine, particularly in developing new vaccines. She knew what she
wanted to do with her life and was very focused.
Once we married, I found that she was focused to a fault. She had no
friends, no social life, and seemed to be incapable of holding a

249
250 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

conversation about anything other than her work. We had had a


long-distance courtship but I thought I knew her. I found that she
suffered from depression and was riddled with anxiety.

Under the direction of a skilled counselor who is familiar with AS you may
want to explore how both you and your partner view your relationship.
You may find it shocking:
He [AS] actually said that he married me “because I do dishes.”
According to the dictates of logic and reason, your partner may consider
the number one factor for marriage to be “the availability of sex” or
“someone to pay the bills and wash the clothes.” You may be shocked at the
apparent crass nature of your partner’s views.
Here’s where the AS trait of “brutal honesty” comes into play. The AS
partner may recognize only the functional aspects of marriage: sex,
household chores, financial gain, or social status (escaping the stigma of
being single). Although these things are all logical aspects of marriage, the
brutal honesty of being told that they are the reasons for your union may
cut deep.
Romance and honesty can be counterproductive. For example, if your
partner tells you that you need to lose another ten pounds, while it may be
the truth, this squashes any hopes of romantic physical contact in the near
future. Honesty (hardcore AS honesty) involves facts, logic, and truth.
Romance (perfected by NTs) involves flowers, kissing, and chocolates.
Aspies may not recognize the sensual value of romance:
Why would you get me flowers? They just die.
Or:
I hate kissing. It’s an aggressive form of germ transfer.
Or:
Chocolates? Sugar, wax, and cocoa bean. Why?
All of these are honest, logical responses to a romantic gesture. A
relationship needs a tactful balance of romance and honesty in order to
survive. One woman explains:
There was no romance in our marriage until I explained to my husband
of 11 years that “Romance means telling me I look ‘good’ without
objectively quantifying the word ‘good’.” And that “You compliment
THE AS-LINKED LONG-TERM RELATIONSHIP 251

me ten times for every one criticism.” Once I explained some of the rules
of marriage, he began to act like a husband and, once he could act
appropriately, he began to feel married too. Even though he can’t
quantify it, he can now recognize what it’s like to want someone beside
him and, better yet, to want to make me happy.
You may find yourself reviewing your reasons for marriage. You may
wonder about the future health of your relationship. I wish that I had
known about AS before marrying. I still would have married him – he is
my best friend – but I would have had much better understanding. I wish I
could have read Liane Holliday Willey’s (2001) version of Aspie Wedding
Vows ahead of time:
To my mate… I want to tell you I think you are a nice person. I will
not be telling you that too often because I just did… I promise I
will not ask you to change who you are and I ask you to let me stay
who I am. I promise I will be a dependable, loyal, stable and honest
partner…I would not have joined you in marriage if I did not love
you and want you in my life. (p.88)

When the veil comes off


It doesn’t much signify whom one marries, for one is sure to find
next morning that it was someone else.
Samuel Rogers, Table Talk

People with AS learn at an early age that many of their AS traits get them
into trouble. Over the years, the Aspie may become a master of pretending,
hiding, and avoiding. When the adult with AS marries, both partners may
be unaware that the Aspie has successfully hidden his true nature from
view. Even the Aspie himself may not be aware of the false nature of the act.
I asked my own husband if this was the case for us. With a laugh and an
honest wink, he stated:
Sure, I pulled a few stunts to get you to marry me, but you didn’t expect
me to keep it up forever did you?
It’s possible (and logical) that the Aspie views courting as a form of acting,
where he must say certain things, perform certain actions, and give an
impression of social and romantic aptitude in order to attract you. It’s
252 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

possible that the person with AS honestly sees this as a reasonable part of
the games people play.
When you discover that the dating and engagement phase of your lives
was a well-maintained act, you may feel betrayed. While most married
people complain of their partner’s misrepresentation at least once
post-marriage, it may actually be a real phenomenon for AS-linked
partners. It appears as a true betrayal or a well-crafted deception.
Ironically, Aspies aren’t deceptive by nature. In fact, due to theory of
mind issues, they may not be capable of deception (Baron-Cohen 1995,
pp.7–78). Deception is a higher level skill that is probably out of reach for
your AS partner. To our immediate perception, a person’s false act is
outright dishonesty, but when we look at the intentions we may find that it
was an honest, but very poorly executed, attempt at social interaction.

Acquired Aspergers – Becoming aspergated


As you bend and flow with your Aspie partner, you may become
“aspergated,” taking on AS traits to the point that you appear Aspie also.
For example:
One of my husband’s [AS] most endearing traits is his candid honesty.
I’ve learned how to be much more honest too.
Or:
Over the years I have stopped caring so much about what other people
think of me… I had always admired my husband’s [AS] ability to not
care so much about other people’s opinions.
Becoming aspergated could have a downside. For example:
As he [AS] refuses to compromise, so do I. I used to be a happy-go-lucky
girl, going with the flow of life, but since we’ve been married I’ve
become stiff.
Or:
Since he [AS] never talks to me about anything, I have stopped talking
to him about much either. Actually, I’ve become much less talkative and
less friendly in general.
The goal is to let the beneficial AS traits rub off on you and disregard the
unattractive traits. As a tool for insight into your own personal growth, you
THE AS-LINKED LONG-TERM RELATIONSHIP 253

may want to read books such as Shadow Syndromes: Recognizing and Coping
with the Hidden Psychological Disorders That Can Influence Your Behavior and
Silently Determine the Course of Your Life (Ratey and Johnson 1997). As you
discover more about AS and how the neurological functioning influences
your partner’s behavior, you may forget to focus on your own personal
development. Reading books such as Shadow Syndromes may help you
attain better self-awareness.

The caustic mate versus the healing mate


A “healing” mate is a partner whose focus is the common good of both
parties in the relationship – someone who can find solutions and can create
a healing balm for a weary or wounded partner. Let’s first examine what an
AS healing mate may look like:
Some days when I come home after a long day at work, I just want to
cry, but I know that it doesn’t do any good (I obsess over the day’s
problems). So, I ask my partner [AS] to give me “the works’: a back rub,
foot rub, neck massage, and everything else I need to relax and wind
down after a long day at work – no questions asked. Voicing my worries
just makes them worse and my husband is the only one I can trust to not
intrude on my worries.
A solid focus on an Aspie’s particular strengths may bring out the picture
of a healing mate. One woman chimes in with her optimistic view of her
Aspie husband:
I am so glad for the years we’ve had together. I’ve learned so much about
myself, about him [AS]… As for me, personally? Well, there are defi-
nitely good reasons I married him, and a lot of good I see in him. I am so
proud of him and all he can do… He loves his children so very much,
and they love him. Spiritually, he is very, very insightful, and often says
things that I know are inspired. He makes me laugh.
This woman made the clear choice of focusing on her partner’s strengths
over his “disabilities.” By magnifying his strengths, she reflects back to her
partner a sense of confidence and pride. It’s in an atmosphere such as this
that an Aspie has a chance at success.
On the other side of the aisle, the NT partner can also be a healing
mate. It’s all too easy to think of examples for this since there are so many
254 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

specific things you can do to support your Aspie partner. Let’s look at only
one:
There are times when he [AS] sinks into depression. I always see it
coming. He gets listless or he lashes out irrationally. When this happens,
I do everything in my power to clear the path for him. I’m like one of
those big snow trucks clearing the road, cleaning away everything from
his environment that could agitate him further.
While we all wish for healing relationships, many relationships involve a
caustic mate. The caustic mate is one that erodes self-respect and dignity.
Here’s an example where both mates have become caustic:
I have finally given in to the constant criticism. He [AS] criticizes my
every move, saying I am illogical and stupid. I’m sick of it. I have learned
to criticize back… The children are stuck in the middle of our battle and
are learning to be vicious.
The toxicity can get so high that it poisons everyone within reach. A toxic
relationship may not necessarily be the direct fault of either party, but it is a
situation that desperately needs remediation by an AS-qualified
professional.

Divorce
In our early marriage years I read many books on divorce. Nearly every
book I read painted a portrait of my marriage as an ideal case for divorce.
Several books listed “stonewalling” as an indicator of a dead relationship.
My Aspie husband could be a poster-boy for stonewalling – he can
maintain a stony expression no matter what I throw his way (tears, rage –
nothing phases him). Typically he responds only to direct interroga-
tion-style questions and then only gives a one-word answer. His
stonewalling abilities would put a good lawyer to shame.
Other indicators of divorce include defensiveness, contempt, and
blaming, all of which may come prepackaged with the AS condition.
Defensiveness is a common AS trait with its origins in the Aspie’s
childhood when he didn’t yet have social scripts under his belt to help him
get by. Contempt may be shown by a sneer (inappropriate facial
expressions), put-downs (logical comments that are indelicately worded),
or a lack of outward empathy. Blaming comes into play when an Aspie
THE AS-LINKED LONG-TERM RELATIONSHIP 255

with weak central coherence has difficulties identifying the correct origin
of a problem.
The diagnostic criteria for AS dictate that certain skills are lacking: i.e.
higher-level communication skills, empathy, emotional reciprocity, and
many other skills needed for a successful intimate relationship. The divorce
rate for AS-linked relationships is higher than for the general population.
The only estimate currently available comes from a study completed in
Holland indicating that the divorce rate in AS couples is upwards of 80
percent (Relate leaflet).
Despite the apparently daunting odds, measures can be taken to
improve our chances of creating a happy relationship. I believe the most
effective approach is to work on making ourselves better, more knowl-
edgeable, and more caring people. Even if the marriage eventually ends in
divorce, and statistics say it probably will, if your focus is self-improvement
(learning from the experience) then you will be a better person in the end.
One woman explained how she craved divorce, but realized that she
didn’t want an actual separation from her Aspie partner. She dreamed of
shedding the world’s stereotypical version of marriage. She wanted to
divorce herself from the back-breaking and unnecessary efforts being
made to achieve “normalcy” in an “abnormal” marriage. As she tells it:

I had a telling dream once about divorcing my husband [AS]. I dreamed


that we were finally divorcing (relief !) but I told the lawyer to write up
the divorce papers so that we could still live together, raise the children
together, etc. The divorce contract had to ensure that nothing would
change and I’d still get to live with him. When I got the divorce papers
successfully signed, I felt a huge, cleansing sense of liberation. I was
finally free! And I still had my best friend!
I interpreted the dream as meaning that I felt trapped by all the
details of marriage (acting like a couple, having friends over for dinner,
having a husband who volunteered at the kids” school, etc.). We were
having so many troubles with standard marital relations that I felt
crushed by them and I desperately wanted to throw the burden off my
back.
After the dream, I started consciously getting rid of activities we
were doing simply because “Married couples do this.” We hired out
household chores, we stopped inviting friends over to our house, we
didn’t plan any more family vacations, and we managed to back out of
256 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

all sorts of extraneous responsibilities. As I was able to throw off more


and more of the standard marital expectations, I was able to relax more,
enjoy more, and see more of the wonderful things my AS husband did
to strengthen our family.

Perhaps AS-linked relationships can be successful when partners work


diligently towards creating a structure that works for them. A successfully
married Aspie female put it succinctly: “Create your own kind of marriage.
Try to relinquish the traditional roles and invent new ones…” (Holliday
Willey 2001, p.94) The ability to be creative in your marriage may serve
you well.
This section on divorce is noticeably short. There are plenty of people
who are arguing for the incompatibility of AS/NT relationships, plenty
who say it is “impossible,” “not worth it,” “dysfunctional” by nature, and
some who even say that people with AS “cannot” or “should not” marry. To
me, those are ridiculous ideas – as ridiculous as telling Rosa Parks to go to
the back of the bus. Aspies need understanding, awareness, and support for
making and maintaining long-term relationships if they wish to do so.
Please note that this book does not address issues of adultery, abuse, or
other pernicious behaviors that are reasonable grounds for divorce. These
issues are not AS-related and therefore are irrelevant to this book. If you
are currently dealing with such issues as adultery or abuse, please find help
through a competent counselor, therapist, or lawyer.

The ideal mate


In An Asperger Marriage (2002), Chris Slater-Walker, a happily married
adult male with AS, describes what he wanted in a mate: “I wanted as far as
possible to establish a lasting relationship with someone who was my
intellectual equal, who would be able to hold her own in most situations
and who would be a good listener and a friendly adviser…who would be
intelligent and reasonable…” (p.19). Your particular partner may have
been attracted to you because of the following traits:
• self-sufficient
• kind-hearted
• strong support system already in place
THE AS-LINKED LONG-TERM RELATIONSHIP 257

• religious beliefs to rely on


• solid sense of self
• naturally compassionate
• can reach out to multiple systems of comfort
• gentle and nurturing
• strong self-control
• excellent flexibility with communication skills.
Along with some traits to form the bridge between the two of you:
• logical
• able to analyze a difficult situation
• able to forgo emotional reactions at times
• honest
• dedicated.
When dating, everyone looks for certain characteristics, consciously or
not. Your Aspie partner probably exhibited characteristics that were highly
appealing to you. Of course, there are exceptions to every rule but,
typically, Aspies are said to have the following traits:
• loyal
• kind
• hard-working
• faithful
• intelligent
• reliable
• capable of seeing the world differently
• detail-oriented
• exceptional memory
• practical.
There may also be some concrete reasons why you need your Aspie
partner’s innate characteristics. For example:
258 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

[Details of a difficult childhood]… in order to grow as a person I either


needed to be with an emotionally detached partner or on my own. I
enjoyed the friendship of my AS boyfriend and we moved in together.
Over the years, I have been able to exorcise the demons of my child-
hood. Through it all, he stood by my side and has slowly grown into
our relationship also.
To sum it all up, the following poem describes how my relationship with
an Aspie has made me a better person:
I asked God for a companion
I was given an odd soul that I might develop a stronger self.
I asked for help. I got confusion,
That I could further refine my needs and wants.
I asked for love. I got silence,
That in the silence I would hear the beating of my own heart.
I asked for companionship. I got cold indifference,
That in the frozen night I would find myself
as my surest source of warmth.
I asked for a friend. I got someone who didn’t know friendship,
That I could relearn the true nature of reaching out to others.
I asked for a partner. I got a distant roommate,
That I could set my own rules and live by my own standards.
I asked for honesty. I got brutal honesty,
That I could develop a spine strong enough to withstand the truth.
I asked for hope. I got a blank stare,
That I would look for faith within my own soul.
I asked for answers. I heard the hush of a man
who didn’t know how to answer,
That in the void I would learn to turn to Thee.
My prayers were answered.
I received nothing I asked for, but everything
I needed to build a stronger soul.
Now I am strong.
I can see my partner’s strengths: honesty, integrity, and loyalty.
THE AS-LINKED LONG-TERM RELATIONSHIP 259

I can feel my mate’s love: companionship, closeness, and comfort.


I can see a kind friend reaching out to me with a hand I used to rebuff.
My companion was there all along.
CHAPTER 11

Help! Where To Look

Books
The first step in improving an AS-linked relationship is to understand the
intricacies of AS. The following books are recommended reading for
building a solid knowledge base of AS. Please note that relevant books
that become available after the publication of this book can be found at
www.jkp.com (Jessica Kingsley Publishers).

Aston, M. (2001) The Other Half of Asperger Syndrome: A Guide to Living in an


Intimate Relationship with a Partner who has Asperger Syndrome. London:
National Autistic Society.
Attwood, T. (1998) Asperger’s Syndrome: A Guide for Parents and Professionals.
London: Jessica Kingsley Publishers.
Baron-Cohen, S. (1995) Mindblindness: An Essay on Autism and Theory of Mind.
Massachusetts: The MIT Press.
Bashe, P. and Kirby, B. (2001) The OASIS Guide to Asperger Syndrome: Advice,
Support, Insight, and Inspiration. New York: Crown.
Frith, U. (1989) Autism: Explaining the Enigma. Oxford: Basil Blackwell Ltd.
Frith, U. (1991) Autism and Asperger Syndrome. Cambridge: Cambridge
University Press. (This book contains a full translation of Hans Asperger’s
original paper describing the patients he observed.)

261
262 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Gillberg, C. (2002) A Guide to Asperger Syndrome. Cambridge: Cambridge


University Press.
Grandin, T. (1995) Thinking in Pictures: And Other Reports from My Life with
Autism. New York: Doubleday.
Gutstein, S. (2000) Autism/Asperger’s: Solving the Relationship Puzzle. Texas:
Future Horizons.
Gutstein, S. and Sheely, R. (2002) Relationship Development Intervention with
Children, Adolescents and Adults: Social and Emotional Development Activities for
Asperger Syndrome, Autism, PDD and NLD. London: Jessica Kingsley
Publishers.
Holliday Willey, L. (1999) Pretending to be Normal: Living with Asperger’s
Syndrome. London: Jessica Kingsley Publishers.
Holliday Willey, L. (2001) Asperger Syndrome in the Family: Redefining Normal.
London: Jessica Kingsley Publishers.
Klin, A., Volkmar, F. and Sparrow, S. (2000) Asperger Syndrome. New York:
Guilford Press.
Ledgin, N. (2000) Diagnosing Jefferson. Texas: Future Horizons.
McKean, T. (1994) Soon Will Come the Light: A View from inside the Autism
Puzzle. Texas: Future Horizons.
Mesibov, G., Shea, V. and Adams, L. (2001) Understanding Asperger Syndrome
and High-functioning Autism. Colorado: Kluwer Academic Publishers.
Newport, J. (2001) Your Life is not a Label: A Guide to Living fully with Autism and
Asperger’s Syndrome. Texas: Future Horizons.
Shore, S. (2001) Beyond the Wall: Personal Experiences with Autism and Asperger
Syndrome. Kansas: Autism Asperger Publishing Co.
Slater-Walker, C. and Slater-Walker G. (2002) An Asperger Marriage. London:
Jessica Kingsley Publishers.

Articles
Articles such as Temple Grandin’s “Choosing the Right Job for People
with Autism or Asperger’s Syndrome” (1999) provide immensely helpful
advice for employment-related issues. Articles such as “The Geek Syn-
drome” (Silberman 2001), “Think Different” (Baron-Cohen 2001), and
“Take the AQ Test,” (Baron-Cohen 2001) all featured in Wired magazine
(December 2001, 9.12, pp.174–87), provide excellent reading material
HELP! WHERE TO LOOK 263

that you can quickly and easily pass on to friends and family who need a
brief, attention-grabbing synopsis of AS. Browsing AS-related websites
will lead you to many informative articles.

Counselors
Once you start looking for professional help, you may quickly discover
that the general medical services population near you is not solidly aware
of AS yet. They are generally familiar with autism, but mentioning that AS
is on the autism spectrum often creates images of LFA (low-functioning
autism): silent children locked in a prison of nonverbal seclusion, not rec-
ognizing even their own name.
Although LFA and AS are worlds apart, when the word “autism” is
mentioned, most people think of LFA. Until knowledge of AS becomes
prevalent, you may find yourself repeating and spelling “Asperger” over
and over again, finding how ridiculous it sounds in the English language
and how embarrassing it is to have to repeat it. One woman experienced
the following:
While I was waiting to get all the paperwork for our doctor’s visit, I
overheard the doctor and his assistant trying to figure out, “Why is this
lady here for asparagus?”
While there are knowledgeable doctors, counselors, and therapists who
won’t misidentify your partner as a leafy green vegetable, it may take some
serious detective work to find them. It’s extremely important to find a
professional who has had experience with AS, since an uninformed
professional could possibly do much more harm than good. For example, a
general family psychologist may tell the AS partner to “explore your
feelings” and “explain why you feel the way you do.” Your AS partner will
be perplexed, befuddled, and may respond with pure fiction, guessing at
what the psychologist may want to hear. Or your partner could respond
with confusion that appears as obstinacy. Or he could try to gracefully exit
the situation, appearing evasive and dishonest. Or he could become
defensive, realizing that, yet again, he is backed into a corner and doesn’t
know words good enough to convey his confusion. Without a solid under-
standing of AS, incorrect assumptions may abound.
264 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Keep in mind that traditional couples counseling is based on a verbal


back and forth between patient and counselor. Since social communication
is the number one defining difficulty for people with AS, standard coun-
seling can be extremely frustrating. You’ll need to find a counselor who is
not only familiar with the AS diagnostic criteria, but who is also experi-
enced enough to find ways to reach your AS partner through pictures,
visualizations, or whatever other areas happen to be strong for him. Merely
talking about vague concepts of love and compassion won’t be as effective
as it would in a standard counseling session.
In ‘Meeting the Challenge of Asperger’s Syndrome’, Maxine Aston, a
counselor specializing in AS marital relations, states:
Due to the very nature of Asperger’s syndrome, it is quite likely
that the couple relationship will soon become problematic and
research has shown that the couple will often seek out couple
counseling to try to sort out the problems they are facing. Unfortu-
nately, in the past, this has not always been successful as the coun-
selor as well as the couple have often been unaware that Asperger’s
syndrome is at the root of the problem. In the higher functioning
adult with Asperger’s syndrome, recognition of this disorder can
often go undetected and awareness of its existence can be clouded
by the very capable, intelligent and hard working nature that
adults with Asperger’s syndrome on the higher level can some-
times display. Counseling a couple when one of the partners has
Asperger’s syndrome requires a very different type of counseling
from that most usually practiced by Relate counselors. It also
requires an understanding into which problems are a direct effect
of one partner having Asperger’s syndrome and cannot be
changed, and what is changeable and within the control of the
couple.
Despite any difficulties you may encounter while searching for an AS spe-
cialist, it may be well worth the effort. A therapist or counselor can reveal
information that would otherwise be off-limits. A third party can get
through to your partner when you can’t. For example:
The therapist told him [AS] the exact same thing that I have been telling
him for years. Somehow, it got through to him!
A skilled psychologist will first assess the AS partner’s level of basic inter-
personal skills; second, teach basic interpersonal skills; and third, help
both partners put these new skills to use in their everyday interactions.
HELP! WHERE TO LOOK 265

Organizations
In your search for more information, you may need to rely on the services
and information provided through the following organizations:
Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814-3067
USA
Tel: 301-657-0881
Tel: 800-3AUTISM
Fax: 301-657-0869
http://www.autism-society.org
National Autistic Society
393 City Road
London ECIV 1NG
UK
Tel: 44 (0)20 7833 2299
Fax: 44 (0)20 7833 9666
http://www.nas.org.uk
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116
USA
Fax: 619-563-6840
www.autism.com/ari
The Connections Center
4120 Bellaire Blvd.
Houston, TX 77025
USA
Tel: 713-838-1362
http://www.connectionscenter.com

Web
There are more AS-related websites than can be listed in this book. The
following sites are deemed to be the most reliable and it is hoped that they
will have the longest presence on the web.
266 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

OASIS (Online Asperger Syndrome Information and Support)


http://www.udel.edu/bkirby/asperger/
Tony Attwood (a renowned AS researcher and clinician)
http://www.tonyattwood.com
FAAAS (Families of Adults Afflicted with Asperger’s Syndrome)
http://www.faaas.org

General information about autism


http://autism.about.com

Support groups
Some turn to on-line support groups for validation and information when
in need. There are sites for Aspies only, Aspies” partners, professionals,
non-professionals, Aspies with children, and others. Within these groups,
you may find the solace and information you can’t find elsewhere, espe-
cially if you have not yet been able to locate an AS professional in your part
of the world.
As with all other forms of support, there is also a downside. You may
wish to log on to a support group and share every intimate detail in order
to receive help, but often this private information is recorded and cata-
logued in archives that can be referenced by the general public or by
anyone who joins the group. If you do experience divorce or separation,
these publicly recorded details could prove detrimental. As with all forms
of support, be careful and be aware of the risks.
Support groups can come and go quickly. To find a list of all the AS
support groups currently available, do a quick search for “asperger” on any
search engine.

Friends
A friend will be able to help you recognize when something isn’t quite
right but may not be able to help you solve it unless the friend is well versed
in “Aspergese.”
HELP! WHERE TO LOOK 267

Although friends can help only minimally with the difficulties you
face in an AS-linked relationship, it is still strongly recommended that you
make and keep solid friendships throughout your adult years. People with
AS typically have a drastically lower need for friendships – one or two may
be plenty (Aston 2001, p.21). If you match your partner’s level of
friendshipping, you may find yourself feeling isolated, lonely, and seeking
extra friendly affection from an AS partner who is already operating at a
maximum level. Make and keep friends. Although the benefits aren’t
immediately obvious, you’ll find more peace in your relationship if you’re
comfortable with the level of companionship you give and receive on a
daily basis.
If you are fortunate enough to find close, personal friends who also
understand the AS diagnosis, consider yourself lucky. They will be able to
offer you a genuine form of support that few can match.

Family
Unless your AS partner has an exceptionally accurate memory of his child-
hood, you may want to ask for details about his childhood from his
mother, father, and siblings. Diagnosticians often require this information.
Forming a solid relationship with your partner’s family is the first step.
Asking the right questions is the second step. Getting family members to
come to the evaluation session or fill out a questionnaire is the final and
perhaps most difficult step. Of course, documented information such as
baby books, the mother’s or father’s journals, and other written forms of
personal history are probably the most accurate.
You may find that your AS partner’s parents or other family members
recall past events very differently from your partner. One male with AS
explained:
I know that everybody has selective memories of the past, but when you
compare my [AS] views with my parents” views, it’s impossible to
identify it as the same experience. They’ll talk about living on a farm in
the countryside. They’ll recall happy Saturdays doing projects together,
reminiscing about holidays and funny family stories. My memories are
different. I recall the pigs and cows being shot and brutally dismem-
bered. I recall the confusion and intense physical pain that accompanied
268 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

every grueling 5 a.m. to 9 p.m. Saturday work session. My memories are


haunting and chilling; their memories are somehow happy.
Perhaps the difference in viewpoint is due to the fact that the child with AS
is fighting demons that others don’t see. In this example, the child was
dealing with enormous sensory issues, a lack of downtime, constant social-
ization for 16 hours a day, and many other issues that required the child to
stay strong far beyond a reasonable limit. This child with AS didn’t know
how to communicate the distress and – since it was present his whole
childhood – he considered it part of living. While the parents saw a com-
pliant child, the child was in shutdown mode, scared and unable to voice
discomfort.
It’s also possible that the person with AS doesn’t remember much from
his past. In our experience, my Aspie husband has so little memory of the
past that it borders on amnesia. He can identify photos of himself as a child
but often confuses a picture of himself with a picture of his brother. He
can’t recall what he did in the houses he grew up in but he can remember
the exact street address, zip code, and phone number. He can’t remember
anything he ever got for Christmas or birthdays but he can remember all
the details relating to when he started building his first computer.
At first, I thought his lack of well-rounded, happy memories indicated
an unhappy childhood, perhaps even signs of a disturbance or scarring in
childhood. The longer I’m married to him, the more I observe that his
memories are highly selective. He fits the profile of “Aspie memories.” He
remembers objects, not people. He remembers a few select confrontations,
not happy times such as holidays and vacations. He remembers small snap-
shots of things that I would consider irrelevant. Armed with an under-
standing of AS and information from his family, I realize that he had a
healthy childhood, but that he only remembers the information his brain
was wired to remember: computers, numbers, and situations to avoid. He
forgot everything about parties, holidays, and other happy occasions that
NTs typically reminisce about.
Building a solid, healthy relationship with family can help the diag-
nostician and it can fill in the picture of your AS partner’s childhood that
may be seemingly skewed in certain directions, based on the way the Aspie
brain functions.
Epilogue

I sit on my little porch and feel the sun set at the end of each day, wonder-
ing if what I have said and done has been worthwhile. I often reflect back
to my childhood, hearing my mother’s cheerful voice singing: “Have you
done any good in the world today? Has anyone’s burden been lightened
today because you were willing to share?”
In preparing to share my writing with others, I have tried to avoid
sounding like an expert. I am not. I am an individual in an AS-linked
relationship, just as are the readers of this book. At times, I am just as
unsure and just as shaky as anyone. I am also just as determined as others
who are fighting for the survival and health of their relationships. I am
among the crowd – the woman who blushes when her partner’s Aspieness
shows, when his mask slips off momentarily.
My Aspie husband has read and edited every word of this book. He is
proud of my efforts and has supported me wholeheartedly. Every step of
the way, I checked that he would not be embarrassed by the information
contained in this book, pen name or not. He simply pointed me to the
section of this book entitled “Mindblindness” and stated, “How could I be
embarrassed?” He understands these concepts much better than I do and, if
he were verbal, we could have co-authored this book, structuring it differ-
ently. As it is, this book is mainly for my benefit.
One unanticipated side effect of writing this is that now, when I slip up
and forget that my marriage is different, my husband asks me, “Haven’t you
read your own book?” When I’m angry with him for not understanding
my NT-speak: “Haven’t you read your own book?” And my favorite
reaction: when I do something contrary to what I have stated in this book,
he quotes passages verbatim. He may remind me, but I sometimes forget

269
270 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

even my own best advice. I comfort myself with the realization that we all
make mistakes and we all need gentle reminders.
There is something about a setting sun that helps us see our mistakes
more clearly than at any other time. Some days I’m too tired to look at the
mistakes and I choose to look away or close my tired eyes. Other days I can
stare down the mistakes until they wither into a little pile of solutions.
Perhaps after my husband and I have been married 30 years or more, I will
have boiled down the same nugget of wisdom that I have heard from
countless other older couples: “Learn to live with it.” When the sun sets on
my life, I hope to look back, treasuring the moments when we turned a
blind eye to each other’s imperfections and held up a magnifying glass to
each other’s strengths.
Glossary

Adaptive behavior
Behavior that enables a person to adapt to their environment, e.g. choosing
to wear warm clothes on a cold day.
ADD
Attention Deficit Disorder: Neurobiological disorder characterized by short
attention span and impulsivity.
ADHD
Attention Deficit and Hyperactivity Disorder: Similar to ADD but with
hyperactivity.
AIT/AT
Auditory Integration Training: A type of treatment that helps a person
overcome sound sensitivities.
Apraxia
Absence of speech, movement, or other functionality. Dyspraxia and
apraxia are similar except “dys” means “some” and “a” means “none”.
AS
Asperger Syndrome: Neurobiological anomaly characterized by impaired
social interaction, repetitive behaviors, and highly focused interests.
ASDs
Autistic Spectrum Disorders: Developmental disabilities characterized by
difficulties with both verbal and nonverbal communication, social
interaction, repetitive activities, stereotyped movements, resistance to
change, and sensory issues.

271
272 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Aspergated
A term used to show that a person has developed AS-like traits over time.
It is a type of mock-AS (not the real thing, but similar in appearance). A
partner of someone with AS may become “aspergated” over time.
Aspie
Friendly term used to identify a person with Asperger Syndrome. Aspie
identifies a personality type rather than a disorder, similar to “artist” or
“intellectual.”
BPD
Bi-Polar Disorder (Manic Depression): Mood disorder characterized by
extreme high and low periods. The high periods can be identified by lack
of sleep, hyperactivity, and highly creative ideas. The low periods often
include suicidal thoughts and/or actions.
CAPD
Central Auditory Processing Disorder: Characterized by difficulty
recognizing or understanding certain sounds; although hearing and
intelligence are normal.
Coprolalia
Saying unacceptable words or phrases (also see Tics).
Differential diagnosis
A diagnosis that is very similar to another, e.g. high-functioning autism is a
differential diagnosis for Asperger Syndrome.
DSM
Diagnostic and Statistical Manual, produced by the American Psychiatric
Association. Currently in its fourth edition (1994).
Dyslexia
Difficulties decoding written information.
Dyspraxia
Developmental disorder characterized by impaired motor function.
Difficulty organizing and planning physical movement.
Echolalia
Repeating or parroting of words or phrases (also see Tics).
Etiology
The cause of a disorder.
GLOSSARY 273

Executive function
The ability to plan, prepare, and execute tasks.
Experience sharing
Engaging in interaction with another person for the sake of social contact
with that person, e.g. chatting with a friend.
Extinction theory
A behavioral theory which states that a certain behavior will become
extinct if consistently ignored.
Faceblindness
See PPG.
Fine motor skills
The ability to manipulate small objects, e.g. handwriting or using utensils.
Fluid systems
Social systems where the interaction is not predictable, e.g. a personal
conversation with a group of people (see Static systems).
HFA
High-functioning Autism: Often synonymous with Asperger Syndrome,
although not all experts agree.
Hyperlexia
An unusually precocious ability to decode written information. Hyperlexia
is often associated with high-functioning autism.
Instrumental behaviors
Things a person does to achieve a certain goal, e.g. talking with a person
to gather specific information.
Large motor skills
The ability to move larger muscle groups fluidly, e.g. running, jumping,
dancing, or walking in sync with your partner.
LFA
Low-functioning Autism: A form of autism containing many of the same
elements as high-functioning autism along with mental retardation.
Mindblindness
The inability to see others as having their own state of mind.
274 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Modality
Refers to the method through which a person perceives, e.g. sight is a
modality.
NLD/NVLD
Nonverbal Learning Disorder: There is often overlap between NLD and
AS. NLD teaching methods are often used for children with AS.
NT
Neurotypical: A term used in the ASD community to indicate a person who
does not have an ASD or other neurodevelopmental disorder, i.e. a person
whose brain functions like the majority of people.
OCD
Obsessive Compulsive Disorder: Anxiety disorder characterized by
persistent repetitive thoughts (obsessions) and/or the need to repeat
certain actions over and over (compulsions).
ODD
Oppositional Defiance Disorder: A psychiatric disorder characterized by
excessive arguing and defiance.
OT
Occupational Therapy: Treatments that help a person improve their fine
and large motor skills, sensory difficulties, and other related physical
coordination issues.
PDD
Pervasive Developmental Disorder: An umbrella term for six different types
of disorders, including Asperger Syndrome.
PDD-NOS
Pervasive Developmental Disorder Not Otherwise Specified: A catchall
category for a person who does not fit elsewhere under the PDD umbrella.
Perseveration
Repetitive pattern of activity: i.e. focusing on a single object, thought,
activity, or person (also see Stim).
PPG
Prosopagnosia: Also called faceblindness. A neurological condition that
renders a person unable to recognize the faces of others.
GLOSSARY 275

Residual AS
Terminology used to identify a person who is still an Aspie, but who has
managed to achieve a high level of functionality in everyday life, e.g. the
residual Aspie may be able to navigate a social situation, but may have
disabling difficulties if not allowed to prepare for the event.
Schizophrenia
A brain disease characterized by hallucinations and/or delusions.
Scripting
Using a predetermined speech. The script can be predetermined by reading
it, hearing it, or otherwise forming it mentally, e.g. if someone says “How
are you?” your script is “Fine, and you?”
SID
Sensory Integration Disorder: Unusual perception of sensory input, e.g.
tactile defensiveness, auditory processing abnormalities, taste aversions, etc.
SIT
Sensory Integration Therapy: Treatment administered by an occupational
therapist to reduce tactile defensiveness, e.g. massage, deep pressure,
rubbing.
Social referencing
Looking to others for cues to help maintain fluid social interaction.
Spectrum
The different types of autism are generally referred to as being “on the
spectrum,” indicating that there are many different types of autism, ranging
from low-functioning to high-functioning, along with other presentations
of autistic tendencies. AS is said to be on the spectrum, at or near,
high-functioning autism.
Splinter skills
Skills that are exceptional – relative to a person’s general aptitude, e.g.
being able to shoot baskets with high accuracy, but having troubles with
all other ball skills such as dribbling and catching.
Static systems
Social systems where the interaction is predictable, e.g. going through the
checkout line at a store (also see Fluid systems).
Stim
The informal term for self-stimulatory behaviors, e.g. tapping your foot,
rocking, pacing.
276 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

Tactile defensiveness
An unusually heightened sensitivity to touch.
Theory of mind
The inborn ability to realize that other people have unique thoughts and
feelings. Theory of mind allows us to infer mental states, have empathy,
determine intention, etc.
Tics
Repetitious, involuntary movements or sounds, e.g. blinking, rubbing,
twitching.
TS
Tourette’s syndrome: Neurobiological condition characterized by
involuntary verbal and nonverbal tics.
Unimodal
Indicates that a person uses one modality at a time, e.g. a person can either
take notes or listen to the speaker, but not both.
References

American Psychiatric Association (1994) Diagnostic and Statistical Manual of


Mental Disorders (4th edition). Washington, DC: American Psychiatric
Association.
Asperger, H. (1944) ‘Die Autistischen Psychopathen.’ Kindesalter, Archiv. Für
Psychiatrie und Nervenkrankheiten 117, 76–136.
Asperger, H. (1979) ‘Problems of Infantile Autism.’ Communication Journal of
the National Autistic Society 1979.
Asperger, H. (1991) ‘Autistic Psychopathy in Childhood.’ In U. Frith (ed)
Autism and Asperger Syndrome. Cambridge: Cambridge University Press.
(Original work published 1944.)
Aston, M. (2001) The Other Half of Asperger Syndrome: A Guide to Living in an
Intimate Relationship with a Partner who has Asperger Syndrome. London:
National Autistic Society.
Aston, M. ‘Meeting the Challenge of Asperger’s Syndrome.’ Posted on the
OASIS website.
Attwood, T. (1998) Asperger’s Syndrome: A Guide for Parents and Professionals.
London: Jessica Kingsley Publishers.
Attwood, T. (1999) ‘The Pattern of Abilities and Development of Girls with
Asperger’s Syndrome.’ The Source September.
Attwood, T. and Gray, C. (1999) ‘The Discovery of “Aspie” Criteria.’ The
Morning News, Fall.
Baron-Cohen, S. (1995) Mindblindness: An Essay on Autism and Theory of Mind.
Massachusetts: The MIT Press.
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Wing, L. (1981) ‘Asperger Syndrome: A Clinical Account.’ Psychological
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Asperger Syndrome in the Family books and articles, on AS
Subject Index (Holliday Willey) 36,
49, 76, 202–3
261–62
bullying
Aspie, use of term 18 avoidance techniques,
Aspie Wedding Vows (Holliday learning 101–2
abuse 150, 256 Willey) 251 and distrust of others 101
achievements, non-sharing of athletic ability 86, 87–88 hypersensitivity to 102
120–22 attention deficit disorder imitating 103–4
‘acquired AS’ 38 (ADD) 32, 38 missing social cues leading
adaptive behaviors 29, auditory sensory dysfunction to 100–101
222–23 128 burn out 231
ADD see attention deficit Australian Scale for Asperger’s
disorder Syndrome (ASAS) 28 causes, of AS 40–41
‘Adolescence and Adulthood autism, rediagnosis as AS in childhood disintegrative
of Individuals with AS’ adulthood 36 disorder (CDD) 243
(Tantam) 111 Autism/Asperger’s: Solving thechildren
Adult Bullying: Perpetrators and Relationship Puzzle bonding with 109–13,
Victims (Randell) 101 (Gutstein) 114 170
adultery 256 Autism Diagnostic Interview preparing to have 227
American Psychiatric -Revised (ADI-R) 28 research focus on 34–35
Association 25, 28 Autism Diagnostic children, bonding with 170
amygdala, role of 40 Observation Schedule - clothing textures 27
anger management (non-AS Generic (ADOS-G) 28 clumsiness 85–88
partner) Autism Research Institute 265 codependency, beneficial
breaking the problem Autism Society of America aspects of 131–34
down 238 (ASA) 49, 265 cognitive development 29
provocation 240–41 autism spectrum disorders
creativity 220–21
sarcasm technique 238–39 (ASDs) 26, 243
differences, recognizing
self-blame 236–37 avoidant personality disorder
211, 213
self-help 237–38 38
intelligence, appearance of
time-outs, creating
babies, as unwelcome addition 219–20
239–40
109–10 unimodal behavior
AQ Test diagnostic tool 28
behavior 221–22
arguments, repeating 164–65
decoding 96–97 coldness 120
AS partner, use of term 18
not learning from 131, comforting 223
ASDs see autism spectrum
164–65 commitment 105
disorders
benefits, of AS 52 communication, successful
‘aspergation’ process 19,
body postures 28 alternatives, using 196–99
252–53
clumsiness 85–88 Aspie behaviors, using 199
Asperger Marriage, An
(Slater-Walkers) 36, complexity of 83–91 clarity 196
127, 226, 244, 256 inappropriate 83–84, 85 cognitive differences,
Asperger Syndrome intentions, misreading recognizing 211, 213
Diagnostic Scale (ASDS) 84–85 communication routines,
28 learning methodically 85 breaking 196
Asperger Syndrome Employment miscommunication, detail, focussing on 212
Workbook (Meyer) 174 repercussions of 84 e-mail 197, 198–99
parent-child trap 90–91 hand signals 197
and romantic overtones 85

281
282 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

intense interest, limiting consistency over time, of AS key features of AS 30–31


communication about symptoms 39, 41, 127 multiple disorders 32
195 control negative nature of 48
interrupting 196 and codependency other disorders, confusion
learned skill, 132–34 with 38
communication as social situations, choices in reaction to 50–52
213–14 125, 171–72 traits, differences in
literal, being 212 conversation, learning to presentation of 33
management/business regulate 26, 31, 201–2 under-diagnosis, of adults
literature, reading 211 cooking, and taste sensitivity 34–37
miscommunications, 177 understanding, difficulties
tracing source of 196 coordination, lack of 85–88 with 31–32, 36–37
nonverbal cues, coping behaviors 39, 71 variations, between AS
compensating for 72 counseling, need for people 39–40
rules, understanding each specialized 263–65 Diagnostic and Statistical
other’s 214–15 criticism 206–11 Manual of Mental
sensory overload, taking cure for AS, absence of 41–42 Disorders (DSM-IV) 28
account of 212 curiosity about the diagnostician, finding
sharing, encouraging 195 environment, no qualified 33, 49–50
single issues, focussing on significant delay in 29, ‘disability’, AS as 41, 54–55
198, 211 228–30 divorce 42, 254–56
social situations, working DSM-IV diagnostic criteria
daily activities, rating
around 196 28–29
difficulty level of
time limits, setting 197 dyspraxia 88–90
128–29
unimodality, awareness of Dance of Anger, The (Lerner)
196 e-mail, use of 197, 198–99
240 Eating an Artichoke (Fling) 156
verbal communication, deception 252
emphasis on 195, eccentricity, AS as more than
defensiveness 30 39
211–12 denial 37, 52–53, 144
visual images 197 echolalia 190–91
depression 48, 220 emotional reciprocity, lack of
written notes 197 details, abilities with 167,
communication breakdown codependency, beneficial
220–21 aspects of 131–34
and communication developmental disorder, AS as
purpose 200–201 efforts, recognizing
127, 233
partner’s 126–27,
conversation, learning to Diagnosing Jefferson (Ledgin) 128–29
regulate 26, 31, 201–2 220
fact and emotion,
reasons for 200–201 diagnosis
separating 207–8
theory of mind issues 202 of adults 33–36
failure to reach out 72
wrong, admitting being criteria for 28, 39–40
forgiving and forgetting
202–3 and denial 52–53 130–31
community identity 23 differential 38 give-and-take issues
compromise, learning 153 difficulty of arriving at 128–30
computer environment, 49–50, 245
suitability of 143–44 learning over time 127–28
DSM-IV criteria 28–29 meeting halfway, as
computers, obsession with factors to be excluded 39
136–37, 138 impossible 126, 127
‘hidden condition’, AS as nonverbal cues, missing
Connections Center 265 53–54 out on 71–72
interpretations of 32
SUBJECT INDEX 283

reciprocity, meaning of purpose of 78 Gilliam Asperger’s Disorder


125–26 and social survival 75 Scale (GADS) 28
empathy, inability to show and trust 76–78 give-and-take issues 128–30,
126 workarounds, using 77–78 153
employment global motor delay 85–88
advancement issues 142, faceblindness 81–82 glossary 273–78
172 facial expressions grief, reactions to 227–28
finding and maintaining, and communication 78–79 grudges 130–31
difficulties with face photos, using 80–81
142–43, 172–75 intentions, inability to read hand gestures 27
home, working from 95–96 help, seeking
173–74 making 79 articles 262–63
intense interest, putting to missing 79–80 books 261–62
use as 138, 139–40, pictures, using 80 counseling, need for
143–44 verbal communication, specialized 263–65
and marital situation shifting to 80 family 267–69
143–44 Families of Adults Afflicted friends 267
niche job, finding 174 with Asperger’s information 266
enjoyment, non-sharing of Syndrome (FAAAS) 49 organizations 265
28–29 family relations, impaired 170 support groups 266
babies, as unwelcome feelings, unawareness of 27, websites 38, 41, 49, 266
addition 109–10 43–44 hereditary factors 40, 41
children, bonding with flexibility, lack of 144–45, HFA see high-functioning
109–13, 170 146, 152–53, 202–3 autism
observations, non-sharing forgiveness 130–31 hiding, learning art of 53–54
of 105–6 Fragile X syndrome 243 high-functioning autism
parenting abilities, friends 30, 31, 57, 118 (HFA) 22, 26, 38, 243,
encouraging 111–13 see also peer relationships 245
play, learning to 110–11 honesty, ‘brutal’ of AS persons
responses, eliciting 107 general development, no 250
sexuality 107–9 significant delay in hyperlexia 23, 38
enmeshment 231 217–19
generalization, inability for ICD-10 diagnostic criteria 28
‘environmental AS’ 38
131, 160–61, 164–65 imaginary play, difficulty with
evaluation tools 28
genius syndrome 27, 110–11
executive function
Aspie brilliance 23 imbalance, in relationships
and dyspraxia 88–90
creativity 220–21 64–66, 233–35
tasks, breaking down 205
expectations intelligence, assumption of inaction, in times of need
high 187–90, 219–20 224–25
of balanced relationship inertia, reasons for 89–90
gestures
233–35 inflexibility 144–45, 146,
copying 92
low, of marriage 44 152–53, 202–3
inappropriate use of 93
unmet, in relationship information, on AS 266
217–19 learning romantic 92–93
mindblindness 93–96 intelligence, assumption of
eye-contact 28, 53, 73–74 high 187–90, 219–20
eliminating to encourage reading people 96–97
gift-giving 233–34 intense interests
communication 75–76 as downtime from social
peripheral vision, use of Gillberg diagnostic criteria 28
situations 141–42
74–75 egocentricity 140
284 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

employment, putting to parroting/echolalia accurate for certain details


use as 138, 139–40, 190–91 27
142–44 rules, writing down poor for past experience
encompassing nature of unwritten 193–94 268
137 similes 192 retrieval differences 164
enjoyment factor 136–37, succinct speech 186–87 men, AS as more prevalent
139 LFA see low-functioning among (10:1 ratio) 18,
intensity and focus, level autism 34
of 136–37 literal thinking 27, 31 mindblindness 93–96, 118
as obsessions 138–40 communication Mindblindness (Baron-Cohen)
rigidity of 137, 140–41 breakdown 200 78, 93
interests, non-sharing of further information, need misdiagnosis 38–40
effect of 113–14 for 204, 205 mistakes, inability to learn
instrumental interactions honesty, issues of 203–4 from 164–65
114–15 implications, missing multiple personality disorder,
intentional hurt 118–19 204–5 confusing AS with 246
isolation, of non-AS misunderstandings caused
National Autistic Society
partners 116–18 by 203–4
(NAS) 49, 265
as relationship deficiency repetition, no need for
neurobiological condition, AS
115–16 205–6
as 39, 40
spontaneous sharing, requests, careful phrasing
neurotypicals (NTs), use of
possibility of 116 of 162
term 18
IQ , average to high 26 tasks, breaking down 205
NLD see nonverbal learning
logic, use of 113 disorder
job interviews 172–73, 174 love-representation, need for non-AS people, use of term
jokes, and factual statements methods of 206 18
95 low-functioning autism (LFA) nonverbal cues, missing out
judgments of others, dealing 243, 263 on 69–72, 130–31
with 55–57
nonverbal learning disorder
mannerisms (stims)
Kanner autism, rediagnosis as (NLD) 38
childhood 155–56
AS in adulthood 36 normalcy habit, kicking
control of 156
key features of AS, simplified ‘disabilities’,
as possible disturbance
list of 30–31 counterbalancing by
156–57
skills 63–64
purposes of 159
language development forgiveness 131
replacement activities 158
expectations and ‘It’s not normal, but it’s
safe places for 157 natural’ 246–47
possibilities, gap
between 189 stress relief exercises 158 marriage, need for
hypothetical situations types of 156 creativity in 255–56
192–93 meltdowns 200 preconceived notions,
‘I don’t know’ 191–92 control, loss of 180, 182 giving up 62
intelligence, assumption of reasons for 180 relationship, paradigm
high 187–90, 219–20 recognizing 180–81 shift in view of 64–66
‘islands of ability’ 186 strategies for managing
metaphors 192 181–83 OASIS Guide to Asperger
as obstacle to diagnosis as stress relief 181 Syndrome, The 33
185–86 memory OASIS (Online Asperger
Syndrome Information
SUBJECT INDEX 285

and Support) 38, 41, personal space, misreading AS prognosis, benefits for
49 26, 70 111
obsessive compulsive disorder personality formation 246 rules of, learning 47–48
(OCD) 38, 138–39 personas, adopting 245–46 repetitive behavior see intense
obstinacy 140–41 pervasive developmental interests; mannerisms;
occupational functioning, disorder – not otherwise parts of objects,
impaired see specified (PDD-NOS) preoccupation with;
employment 38, 243 routines, nonfunctional
oppositional defiance disorder pervasive developmental resources 261–66
(ODD) 38, 210 disorder (PDD) 29, 38, résumés, importance of good
optimism, need for 48 243 174
organizations 265 physical awkwardness see Rett’s disorder 243
Other Half of Asperger clumsiness romance
Syndrome,The (Aston) 36, physical danger, reactions to body postures 85
59 225–27 ‘brutal honesty’ of AS
play, difficulty with 27, person 250–51
parental judgments, effects of 110–11 gestures, learning 92–93
57 porgies, tracking 58–61 sex, missing romantic
Parenting with Love and Logic positive reinforcement 57 aspects of 108
(Cline and Fay) 113 PPG see prosopanosia unmet expectations of 218
parroting/echolalia 190–91 predictability, need for 151, routines, nonfunctional
partner, as interchangeable 152, 225 abusive routines, getting
115 Pretending to be Normal help with 150
parts of objects, (Holliday Willey) 65 change
preoccupation with prevalence, of AS 33–34 and ‘extinction
discrete particulars,
theory’ 155
interpreting world as Reading People (Dimitrius and
versus no-change
160–61 Mazzarella) 96–97
154
generalization, inability for ‘recovery’, from AS 39 complexity, ritualizing 151
160–61, 164–65 relationship journal, keeping
flexibility, lack of 144–45,
rule-based approach, using patterns, identifying 146, 152–53
161–62 60–61
identifying 147
tips for working with self-improvement concept
nonfunctional, meaning of
problem of 162–63 58, 61
145–46
see also weak central structure of 59–60
power of, underestimating
coherence relationships, AS-linked
147–48
PDD see pervasive long-term
predictability, need for
developmental disorder acting, and betrayal
151, 152
PDD-NOS see pervasive 251–52
reasons for 150–51
developmental disorder ‘aspergation’ 252–53
– not otherwise training out of 148
breathing life into 229–30
specified unacceptable behaviors,
divorce 254–56
peer relationships modifying 148–49
marriage
bonding 104–5 workarounds 149–50
reasons for 249–51
bullying 100–104 ‘rudeness’ 6, 30, 31, 186
views of 42–45
marriage, importance of mate sarcasm 238–39
friendship in 99–100 caustic versus
schizophrenia, confusing AS
need for 97–98 healing 253–54
with 29, 244
ideal 256–59
286 ASPERGER SYNDROME AND LONG-TERM RELATIONSHIPS

scripting, appropriateness of social reciprocity, lack of unimodality 196, 200


130, 132–33 122–25
self-esteem, and clumsiness 86 social situations, choices in voice modulation difficulties
self-help books 237–38 171–72 70
self-help skills social stories 124
adaptive behaviors socialization, differences in way of being, AS as 22–23
222–23 levels of need for weak central coherence
being there, for partner 117–18 as advantage 166–67
223–25 solitude, preference for 117 brainstorming, inability for
grief, reactions to 227–28 sound sensitivity 166
inaction, in times of need relationship, impact on connections between
224–25 178 things, inability to see
repetition, intolerance of 163
needs, communicating to
AS partner 223–24 175–76 consequences, outlining
voice, misinterpretation of 164
partner, coordination with
222 178 decisions, forgetting to
volume, intolerance of 176 uphold 165–66
physical danger, reactions
to 225–27 speech future importance, matters
self-improvement principle stilted nature of 27, 220 of not considered
18, 58, 61, 255, succinct 186–87 163–64
258–59 stable personality trait, AS as learning from past
self-worth 57, 189 36 behavior, problems
sensory overload static versus fluid systems 124 with 164–65
communication stims see mannerisms memory retrieval
breakdown 200 stonewalling 254 differences 164
rebalancing, need for 132 stranger, partner as 21–22 websites 38, 41, 49, 266
routines, importance of suicide rate 57 Wired 262–63
150 support, need for 36 World Health Organization
support groups 266 28
solitude, need for 117
support person, becoming writing talent 43
temperature 70
see also sight sensitivity; all-encompassing
smell sensitivity; sound 231–33, 235–36
sensitivity; taste symptoms of AS, recognizing
sensitivity; touch outward 26–28
sensitivity
sexuality taste sensitivity 176–77, 179
enjoyment, non-sharing of Teaching Your Children
Responsibility (Eyre) 113
107–9
teamwork 87–88
as instrumental interaction
teasing 100–104
114
theory of mind 142, 202
Shadow Syndromes (Ratey and
Johnson) 253 see also mindblindness
shyness, clinical 244–45 touch sensitivity, and intimate
relationships 175,
sight sensitivity 176, 178–79
177–78
smell sensitivity 176, 179
trust 76–78, 101, 121,
social interaction, impaired
203–4
28–29, 40–41, 70–71
Garnett, M., 28 Santangelo, S., 41
Name Index Gates, B., 220
Gillberg, C., 28
Silberman, S., 262
Slater-Walker, C. and G., 36,
Gillberg, I.C., 28 127, 226, 244, 256
Gissing, G., 113 Smith, I., 245
Asperger, H., 25, 26, 34, 35, Gould, G., 220 Sparrow, S., 34, 40, 103
36, 41, 63, 75, 100, Grandin, T., 22, 36, 112, Szatmari, P., 28
119, 140, 150, 161, 173, 207, 262
186, 187, 192, 219 Tantam, D., 24, 32, 36, 41,
Gray, C., 52, 53, 124
Aston, M., 36, 101, 103, 48, 85, 100, 111, 133,
Gutstein, S., 48, 105, 114,
118, 125–126, 140, 137, 139, 151, 159,
116, 124–125, 150,
162, 164, 203, 236, 220, 227, 231, 240,
200, 201
264, 267 245
Attwood, A., 28 Holliday Willey, L., 22, 36,
Attwood, T., 22, 26, 34, 40, 41, 49, 65, 76, 92, 97, Volkmar, F., 34, 40, 101, 103
52, 53, 57, 85, 87, 97, 98, 118, 132, 136,
107, 117, 122, 127, 152, 164, 177–178, Wilde, O., 228
131, 139, 152, 153, 181, 202–203, 213, Wing, L., 22, 34, 79, 140,
165, 175, 181, 191, 251, 256 148, 155, 208, 244
223, 224, 227, 234, Holmes, S., 220
236 Hubbard, E., 55
Baron-Cohen, S., 22, 28, Jefferson, T., 220
30–31, 42, 78, 93, 97, Johnson, C., 253
220–221, 252, 262
Jung, C.G., 150
Bashe, P., 33, 35, 102
Bauer, S., 35 Kirby, B., 33, 35, 38, 102
Bonaparte, N., 63 Klin, A., 22, 34, 40, 101,
Bremner, R., 28 103
Cline, F., 113 Le Couteur, A., 28
Ledgin, N., 220
Dilavore, P., 28 Lerner, H., 240
Dimitrius, J.-E., 96 Lord, C., 28
Lynn, G.T., 89, 90
Edelson, S., 246
Einstein, A., 220 Mazzarella, M., 96
Eliot, G., 167 Meyer, R., 174
Eyre, R. and J., 113
Nagy, J., 28
Fay, J., 113
Fischer, B., 220 Ozonoff, S., 245
Fling, E.R., 156
Folstein, S., 41 Randell, P., 101
Frith, U., 22, 35, 63, 110, Ratey, J., 253
118, 138, 140, 150, Rogers, S., 251
165, 186, 187, 192, Roux, J., 117–118
219, 233 Rutter, M., 28

287

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