AUTISTIC - The ultimate guide to surviving in the wild neurotypical world

AUTISTIC

The ultimate guide to surviving in the wild neurotypical world

Daniel Millán López

AUTISTIC

The ultimate guide to surviving in

the wild neurotypical world

Illustrations by Marisa Martínez Cervantes

English translation by Jai White

© DANIEL MILLÁN LÓPEZ

AUTISTIC: THE ULTIMATE GUIDE TO SURVIVING

IN THE WILD NEUROTYPICAL WORLD

ISBN 978-1-4478-3227-0

English edition

First edition: December 2021

Edited by Lulu.com

All rights reserved.

Except as otherwise provided by law, this book may not be reproduced, neither in whole or in part, nor incorporated into a computer system, or transmitted in any form or by any means (electronic, mechanical, photocopying, recording or otherwise) without the prior written permission of the copyright holders. Infringement of these rights is punishable by law and may constitute a crime against intellectual property.

If you need to photocopy or scan any fragment of this book, contact CEDRO (Centro Español de Derechos Reprográficos)

(www.conlicencia.com; 91 702 19 70 / 93 272 04 47).

To mum

No, I’m not Pablo Iglesias¹.

Índice

Prologue by Neurodivergente

The autism spectrum is one of the most-discussed neurodevelopmental conditions in recent years. Despite this, it’s perhaps one of the lesser understood in terms of its explanation within medicine. Anyway, I’m not here to talk about that. I’m here to talk about probably the most incredible person and psychology professional I’ve ever met. You’ll know him as Daniel Millán, but for me, he became Dani a long time ago.

But this story wouldn’t make sense without the autistic community that welcomed me and de-mystified autism and its expression. I still remember Aida, my best friend, and in many ways, the person who has come to be my saviour, telling me: You should think about getting a diagnosis. I’m sure you’re autistic, and even if I’m wrong, you need support either way. In November 2018, I wrote what was perhaps the hardest email I’ve ever written. This is the section I found hardest to write, but that which best describes my situation at the time, together with a prescription for methylphenidate and an incorrect diagnosis:

I really need to know exactly what’s going on with me. I feel as though the medication is just isolating me even more than before, as if my sensory issues haven’t improved, nor my struggles expressing myself (it’s unbelievably difficult for me to verbalise my emotions and thoughts with those who are closest to me, and I can even smile despite feeling angry or sad). This continues to make socialising with others without everything ending in total disaster, incredibly difficult. People think I’m cold-hearted for slacking in our friendship, or for not understanding boundaries in a conversation. If my diagnosis of ADHD and as being AACC² is correct, it would at least help if I knew what type of support and intervention I need, etc.

From that moment onwards, my life changed without me even realising. After just over a month, Dani confirmed my ASC (Autistic Spectrum Condition) diagnosis and we began to work on improving my quality of life, starting by coming off the unnecessary medication. At that time, I was writing my first blog entries based on everything Dani was teaching me. At the end of the sessions, he often told me that he was so excited about writing a book that overhauled the existing information about autism, as well as collating his experiences and knowledge. I asked him when are you going to start writing your book then? more than once. That day has finally arrived.

If you’re autistic (or think you might be), don’t feel bad or think there’s something broken inside you. That’s how I felt. You’re reading the words of not only a specialist, but also those of a friend who wants to bring you closer to your authentic self, free from taboos and fear. Closer to your authentic self, but accompanied by the scientific evidence and Dani’s own experience to help. Whether that be because you feel able to use many of the suggested resources yourself, or because you’re aware of the less harmful options of still being yourself, but improving your quality of life in whatever way you need. This is a brilliant guide packed with autistic knowledge and examples given by autistic people, some of whom also form a part of my life.

If you’re a professional in this field or someone in your life is autistic, this book is a must for your bookshelf. Although written simply, it doesn’t lack objective data, and it gives you a deeper understanding of this unique way of living and being. Not only will it give you a better understanding of autism, it will become that essential handbook to help everyone understand the autistic person in their life.

You’ll see that during hard times, this book will prove a great help in terms of supporting the autistic person in your life, and is guaranteed to be respectful, bypassing forceful interventions or actions that try to ‘normalise’ or ‘neurotypicalify’ autistic people.

You can dip in and out of the book and flick straight to what you need, or let yourself get totally hooked and not put it down until you’ve finished. But, most importantly, you’ll see that you can come back to the book at any time and it will give at least enough answers to apply them yourself or to guide the autistic person in your life, or perhaps to ask for the right assessment from a specialist, knowing that it will be of use to you.

Dearest Dani, you’ve achieved the perfect balance between scientific and social realms, between your ‘human self’ (that I know well), and your ‘professional self’ (that has helped me so much). Collating our experiences, collecting data and challenging questionable studies is a brave feat, and only someone with such great active listening skills and experience in our community could do it. Thank you for writing this book that I’m sure will revolutionise autism interventions in Spanish-speaking countries. Thank you for your commitment to those of us who sometimes felt as though we didn’t have a place in this world. It has been a long time since we discovered that we’re not a puzzle that needs putting back together, nor are we all ‘blue’. We’re perfectly infinite, we need to be listened to, understood and loved unconditionally. You’ve given me the best gift I could have ever asked for: the ability to embrace my autistic self, and helped me understand and unearth my true identity.

Thank you for being the allistic friend every autistic person needs.

Thank you for your friendship and for letting me write this prologue.

Neurodivergente (@Neurodivergent2)

Chapter 1

Introduction

This might come as a surprise, but I didn’t write this book for families of autistic people, although it could provide them with some incredibly valuable information. It’s not for my psychology colleagues, either, even though a lot of my explanations can lead to new routes of intervention that they might never have considered. Nor is it for the general public, even though my explanation of autism may influence them to change their dogmatic view and bring them back down to reality. I’ve written this book predominantly for autistic people. This might throw you off, but I encourage you to keep reading and you’ll see why I made this decision.

Not only is it a book aimed predominantly at autistic people; it’s written using inclusive language. I know that at first it might sound strange in your head: that happened to me, too. Even some autistic people (with their engrained sense of specificity and perfectionism) find it hard to accept the use of inclusive language. But believe me, your mind will automatically become accustomed to these changes, and it really doesn’t take much effort.

Inclusive language is a communicative proposal that aims to deconstruct gender conventions in terms of language. It aims to separate gender from biological sex, and include women, men, non-binary people or those who live beyond traditional conventions, in everyday language. The use of this language is defended by some and challenged by others. To start with, the Royal Spanish Academy (RAE) demonstrates its zealous disapproval of its use³. Yes, the same academy that say it reflects current language use by incorporating words such as wasap (in reference to the instant messaging application WhatsApp), or almóndiga (a vulgarism of the word albondiga, or ‘meatball’ in English). This same institution states: In our language (Spanish), the male grammatical distinction works, as in others, as an inclusive term to refer to mixed groups, or in generic or non-specific contexts (2019). As in psychiatry (we’ll see in various parts of this book), institutions that oversee and judge the diagnosis or speech rules that are often a far cry from social evolution: The use of inclusive language advances expeditiously among young people and social media is witness to this movement, but where does it fit into more formal contexts in which – it would appear – they are more resistant? It is not unusual to think that in these spaces, the most common rules are followed (López, 2018).

The majority of the autistic community has opted for inclusive language, and the rest consider its use to be valid, despite not using it frequently. This community shares a history of not only discrimination, but also direct negation of its mere existence, as is the case for other communities, such as the trans community (in issues that vary from social recognition of binary trans people to non-binary people). If, at the end of the day, the goal goes beyond that of inclusion and equality, what better reason to use a type of language that makes everyone feel represented? As stated by Giacchetta (2018): I can imagine how immensely healing it is for a diverse identity such as my own, or even for other many realities – such as intersex people - to find themselves in a place where they are welcomed, allowed to express their gender with no conditions nor standards that were not created for everyone. Also, how liberating it must be to not have to explain their mere existence, because at the end of the day, we all want the same thing: to exist. She adds: "The use of the letter ‘e’⁴ enables a clear reference to gender diversity, contributing to the overthrowing of linguistic asymmetries in order to build a fairer and less violent society".

The same goes for the terminology used to refer to autism: should we call it Autism Spectrum Disorder (ASD) or Autism Spectrum Condition (ASC)? Should we say ‘person with autism’ or ‘autistic person’? Which is correct? Generally speaking, those who tend to support the use of person ‘with autism’ and autism spectrum ‘disorder’ are families of autistic people, or professionals. Those who use these terms to refer to the autistic community tend to believe that a diagnosis is a ‘label’ that removes the person and only recognises their autism, only defining them based on the disorder or their associated difficulties. Those who refer to themselves as ‘autistic people’ embrace their condition as something that defines them, not something that restricts them, nor an illness they want to get rid of, of course. Some people with autistic relatives (especially children) tend to accuse the autistic community of romanticising autism as though their mild autism or Asperger’s were a sort of ‘five-star autism’, free of challenges in comparison to their more severely affected relatives. In part, this book aims to demonstrate that the nucleus of autistic processing remains the same, regardless of the impact of these difficulties and the potential differences that can be identified when it comes to the daily challenges faced by someone on one end of the spectrum and someone on the other.

I prefer to say ‘autistic person’ or ‘person on the spectrum’. I’ll explain why throughout the book. Of course, I’ll always respect the choice made by each individual regarding how they refer to themselves or their loved one, but I think that reflecting on the choice of one term or another is more important than it first appears (beyond the linguistic debate), because it demonstrates the epistemological⁵ point of departure of each person in terms of what autism is.

On the other hand, you’ll also see that I alternate between expressions such as ‘People on the spectrum tend to…’ or, on the other hand, ‘As people on the spectrum, you tend to…’. I find that referring to ‘you’ or ‘you all’ over and over again can sound too much like an order, so I’ve alternated between them according to the specific circumstances of the narrative. This will also enable non-autistic people to relate to what I’m describing. That’s part of the aim of this book: to bridge those necessary gaps to provoke significant change in interaction, which requires both sides need to make an effort. After all, this is the greatest challenge faced by people on the spectrum: interacting with their surroundings.

As I mentioned at the start of this introduction, this is a book written predominantly for autistic people. No less intriguing is the lack of autistic voices in the professional practice of scientific dissemination that only takes them into account as a semi-statistic to test theories and data, utterly dehumanising the people it discusses. With the exception of autistic authors, it’s rare to find a book about autism in which the authors speak directly to people on the spectrum. It’s time for anyone who works in the field of autism to start doing it.

I’m not trying to write an informative book as such, or at least not in the more ‘academic’ sense of the word. Although, I want anyone who gets hold of this book to understand the true nature of the autism spectrum from an up-to-date perspective (and that of almost two decades of work in this field). That’s why I prefer to look at it as an exercise of truly understanding those aspects I deem most important when it comes to explaining the complex condition that is autism. This also includes families, as well as all the professionals who work with autistic people, whether children or adults. This is a guide in which I explain the processes that underlie autism, to be able to locate these in the social context of people on the spectrum, and to provide a series of tools to enable both autistic people and the people in their lives to find the right path towards better and fairer interactions. As I’ll go on to explain in the different chapters, there’s nothing wrong about being autistic: what is truly unfair is the cruel demand of our surroundings on autistic people (and the unrealistic societal expectations).

The information in this book is organised inthemed chapters. To give a complete psychological explanation for a condition as diverse as autism is to embark on an incredibly challenging, if not impossible task. The best way I’ve come across to explain each of the different processes in autism is to separate them, but always being aware that no one process can be explained without another. This way, once you’ve read the entire book, you’ll be able to go back to the specific information you need at any given time. After the introductions (prologue, this introduction and the following chapter, in which I explain why I chose to specialise in autism), each chapter explores a key topic in terms of understanding the idiosyncrasies of autism, and I include a series of tips in the form of a guide for each of these processes (chapters 4 to 11). I then draw together everything I’ve explained regarding its impact on social relationships (chapter 12), to then end with some of the consequences of this defective interaction with our surroundings (chapters 13 and 14). I end with an epilogue complete with some tips, as a sort of quick guide, followed by a series of autism detection screening tests⁶and a questionnaire about masking⁷ in autistic adults.

In this book you’ll come across many references to studies and professional opinions, but I really wanted to highlight the importance of the testimony of the true protagonists: autistic people. You’ll also come across lots of footnotes (which you’ve probably already noticed). As well as the common references to authors, studies, technical terms, quotes, etc., I explain each instance of non-literal language I use throughout the book. This is another reason why I’ve chosen to use a more laid-back style of writing, far from the pedantic professional or academic style, so as to make it as accessible as possible.

The incredible front cover designed by Marisa Martínez will have grabbed your attention right away. Marisa is an outstanding autistic artist and I’ve been lucky enough to be able to work with her on this project. Communication with her has been phenomenal right from the start, and I couldn’t be happier with her work, as she has transformed each of the situations I described to her, exceptionally and admirably – autistic style! As you’ll see, many of the illustrations she’s created for this book describe situations experienced by people on the spectrum with a sense of humour. We decided to do it this way so as to combine, on the one hand, overwhelming respect for the community and on the other, to demystify the notion that autistic people don’t have a sense of humour. It’s common for autistic people to use memes⁸ to describe situations linked to their literal understanding and also to highlight the lack of understanding of their condition within society. If you’re on the spectrum, you’ll probably relate to lots of the situations we describe. In fact, Marisa has chosen to include herself in some of them. Similarly, lots of the captions under the illustrations and diagrams include ironic or sarcastic comments. Many of the situations that surround the world of autism are so absurd and unfair that humour transforms it into a cathartic exercise.

Lots