Ido in Autismland. Climbing Out of Autism's Silent Prison.

Many people deserve thanks for making this book possible. First, I would like to thank my tireless mom and dad for their help, support, and faith in me. Thanks to many people on this mission are in order, especially to Leora Romney for her support and invaluable help throughout the entire journey, and to Roz Romney for her beautiful cover design. I would also like to thank Andrea Widburg and Sara Bildner for their input and help. I am grateful to Dr. Yoram Bonneh for his introduction and for our conversations exploring autism. Finally, a great debt of gratitude goes to Soma Mukhopadhyay for opening my prison doors and teaching me how to communicate. You made all this possible.

I dedicate my book to my Oma, Stella Better, who was my role model of cheerful bravery.

May, 2012

Foreword

I met Ido Kedar in the summer of 2011 and saw an intelligent fifteen year old boy struggling with what he calls the stupid illness of autism. Ido’s observable behavior was exactly like that of a mute child with severe autism, with almost no eye contact, restless movement and self-stimulation, and speech made of unintelligible sounds. Yet, from his typing and a few other hints, I had no doubt that he was intelligent.

About ten years earlier, I was asked by Professor Michael Merzenich, a well-known neuroscientist from the University of California at San Francisco, with whom I did my postdoctoral training, to organize a group of scientists in order to investigate a fifteen year old child from India, Tito M., who, like Ido, could not speak, but wrote a poetry book with his own hand writing. He too, was severely autistic in his appearance and behavior, similar to the typical non-verbal or low-functioning autistic, as they are typically called.

Tito’s case had initiated scientific discussion and debate, with some describing him as one in a million and an autistic savant for language. Because of this, I was anxious to meet individuals who are also severely non-verbal autistic, yet can tell us about this largely unknown territory. I thus met Ido and asked him many questions which he answered with passion, as if he took upon himself the mission of being a mouth for those miserable, mute autistics who are locked internally, underestimated, and hopeless. But despite being very intelligent, Ido’s skills do not make him a savant, nor a one-in-a-million genius.

Ido tells us that the main problem he struggles with is a problem of output. Surely, he has many other problems and difficulties, such as working memory and attention, sensory sensitivity and control of arousal and urges. Yet the main obstacle which prevents his true cognitive talents and personality to be expressed by his behavior is a problem of output—a severe disconnection between his explicit intentional conscious brain system and the automatic or procedural one, which is usually under full control, but in his case, so often is not. This claim is radically different from the common view that severe autism is associated with abnormal development of cognitive skills and a severe cognitive impairment.

Ido describes in his book several episodes that shed light on this tormenting problem. In one case he was asked to give flowers to his aunt. Since she was standing behind him, he could not see her and could not initiate any action to look for her, so he just handed the flowers to others. Ido, who unlike many autistic individuals has no problem taking the viewpoint of others, writes that this would typically lead his behavioral therapist to conclude that he didn’t know the names of his relatives, and drill him with their pictures on flashcards.

On another occasion, Ido writes that his teacher stated, It’s clear he has no number sense because his hands refused to pick up the right number of straws he counted, and he would stand miserable and embarrassed holding the wrong number of straws. Similarly, he would open the door when asked to open the window or go to one room when asked to go to the other. He told me that in the past, when asked to choose from A and B, his mind would choose correctly, but his hand would consistently go to the wrong choice, making one think that he simply does not know.

Ido’s descriptions are consistent with descriptions and observations made by other severely autistic individuals. For example, Tito, who could find a word in a page in a flash, was unable to search for an object in the room. Others are known to have poor motor control. Yet Ido analyzes his difficulty with the mind of a scientist, concluding that he must see something in order to move his body to get it.

As Tracy, Ido’s mother, writes in her insightful introduction, therapists and clinicians were typically skeptical about Ido’s communication and largely dismissed it as coming, although unintentionally, from his mother. I always wondered about the source of this objection, often called clever Hans skepticism after the 19th century horse that did simple math by picking up unintentional cues from his trainer. After all, humans are not horses, and they do possess the innate ability to develop language and high cognition. I think that the main cause for this resentment is that Ido, and other individuals with severe autism whom I have observed, show a paradoxical behavior, which may confuse therapists and educators. They may fail on simple tasks such as discriminating between two simple visual patterns, or answering a simple question, and at the same time write well-thought out essays. In addition, they may succeed in communication under certain conditions (place, specific aide, etc.) and fail completely in another, because of the peculiar nature of their skill acquisition and their neurological instability.

In the circumstances in which I observed Ido, he expressed his thoughts impressively, and provided interesting insights into his neurological condition which may help focus further scientific research. Reading this book, and my interaction with Ido, had a significant impact on my thinking, as it is not just a validation of other severely autistic people who write, but sheds light on the core deficit that often prevents intelligent behavior in the severely autistic. I am hopeful that his insights, so well expressed in his book, will contribute to the understanding of the severely autistic by parents and clinicians and lead to better interventions and treatment for those with his condition.

Yoram Bonneh, Ph.D.,

Department of Human Biology, University of Haifa

Introduction (Note: Ido is pronounced EE-doh)

Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times. Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting. At other times your emotions—joy, anger, or sorrow—take you over completely and you have to ride with them on a frightening roller coaster. Imagine living in a body that paces or flaps hands or twirls ribbons when your mind wants it to be still and then freezes when your mind pleads with it to react. It doesn’t enable you to gesture or write with pen or pencil, despite the fact that you read fluently. You lie in bed cold, wishing you could get your body to pull on a blanket. At other times your body charges forward impulsively, snatching things, or dashing you out into the street. Your body is like a prison and you don’t know how to find a way out. Since you cannot express your thoughts, only you know that you are intellectually intact.

Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly. You are bored, frustrated, angry, misunderstood and more than a little hopeless. You turn to repetitive behaviors, or stims, which create a sensory drug-like experience that takes you away from the pain but makes the situation so much worse by pulling you farther from reality. You are lonely, though surrounded by people, and you know that this will be your entire life if you do not gain a means to communicate more than your basic needs. But no one is teaching you how.

Welcome to Ido’s world. My now fifteen-year-old son, who has autism, emerged from this imprisoning silence after learning to communicate his thoughts by typing or by pointing to letters on a board. In these pages, he details and explains the symptoms and puzzling behaviors of his condition. He describes his life and education before he could communicate. He corrects what he sees as erroneous premises in much of autism theory and treatment and relays how he acquired communication and recognition as a sentient being. And finally he shares his point of view on life. This he does with humor, tears, occasional anger, and a bit of sarcasm. Ido’s insights help us to understand life with severe autism. His story challenges our complacency with the status quo regarding autism education.

Beyond his insights on autism, though, Ido shares his story of personal growth as he comes to accept himself as someone who will always be different from others. The reader follows Ido on this journey, as his voice shifts from the rage and bitterness of an unhappy twelve year old, free at last to communicate burdens held inside for years, to that of a profound spiritual thinker making peace with his life. In this later stage, Ido triumphs academically, and in so many others ways, while studying a general education curriculum in high school.

Until he was seven, Ido had no means to show anyone that he was intellectually intact. His teachers and myriad experts assumed, based on his difficulty following instructions, lack of speech and odd behaviors, that his intellect and knowledge matched his actions. They insisted that the only way he could learn was by being slowly and progressively instructed in the basic information that human beings need to function. This would be done through drilling, flashcards and repetition for hours each day in a program known as Applied Behavioral Analysis, or ABA. While specialists held meetings in Ido’s presence to talk about why he didn’t progress on a drill, or how to improve his score on another, on the inside he was screaming, I understand! I already know what a tree is. Please help me learn to communicate! On the outside, the scream came out through his hands, vigorously flapping at the wrists. This was quickly redirected with the command, Hands quiet. He was trapped.

Before Ido could communicate, I often had a strong suspicion that he understood receptively but that his expressive mechanisms were severely impaired. Unfortunately I had nothing more than glimpses or hunches to dispute the much more prominent evidence of his puzzling and impulsive behaviors. He followed instructions incorrectly and got simple answers wrong in drills. Moreover, the volumes of professional literature and expert opinion we sought all confirmed that autistic people like Ido had impaired receptive language skills as well as expressive language delays. Some experts stated that Ido was, in all likelihood, mentally retarded. Fortunately these expert insights were incorrect. Unfortunately it took a lot of suffering, time, and money for us to figure that out.

Most of the people we saw were caring and idealistic and a few loved Ido and were loved by him in return. Others, less so. However, nearly all were bound by a theory. They looked at autism in a theoretical box, as they had been taught, and this prevented them from seeing the true capacity of Ido and children like him. The initial presumption was that he was an empty slate who had to be taught simple concepts in slow increments. Many experts advised us that he was not even aware of the world around him. Of course, if one assumes that a child’s vocabulary is limited to a tiny number of nouns and verbs, real communication is impossible. It’s so out of reach it isn’t taught. Some, in their certitude, refused to even explore Ido’s communication once it emerged. They rejected it as impossible. They were not open to a new possibility, or as Ido says, they were blinded by their professional biases.

Thankfully, this has changed for Ido. People who have met him cannot refute his abilities after observing him communicate without being touched or guided on his iPad or letter board. They therefore must either shift the paradigm in which they view non-verbal autism or see Ido as an isolated and unusual exception. For many individuals who have been taught that autistic children who behave like Ido are intellectually impaired, it is a stretch to accept that these children may in fact have sophisticated language abilities. It is challenging for those who focus on the clearly visible impairments to imagine that some of these hand-flapping, string-waving children might understand normal speech and think internally. Consequently, the response to the children who have managed to break through the communication barrier, and to their families, has not always been kind or constructive. Some have been accused of not being able to truly communicate, or being guided unduly by an overzealous partner (which may indeed have happened, but should not render every communicating child suspect). Or, since they no longer fit in the theoretical box, some children who have learned to communicate independently have been reclassified by the experts as not autistic after all. But, as in Ido’s case, more often than not, children who emerge from non-verbal autism to communicate by pointing or typing are viewed as remarkable exceptions. It torments Ido that experts view him as unique while other children like him languish in silence. Through his book, he hopes to prompt the teaching of communication skills to countless non-verbal kids who are suffering as he did.

Fortunately, the communicative potential in non-verbal autistic people is getting harder and harder to refute. There are ever more non-verbal autistic people learning to communicate by pointing to letters and by typing, and some, like Ido, are going public. As with Ido, many of them are not touched as they point or type, which challenges the canard that they have been programmed to regurgitate their facilitator’s thoughts. More and more non-verbal people are showing a different face of autism.

In the psychoanalytically oriented 1950s children with autism were thought to have an emotional problem. The theory promoted by Bruno Bettelheim in his seminal work on autism, The Empty Fortress, and widely accepted by the professional community, stated that the refrigerator mothers of autistic children were so cold and rejecting that the children retreated into themselves as a defense against emotional injury. Hence the self-stimulatory behavior, lack of eye contact, and so on. The recommended treatment was psychotherapy and play therapy. Progress for the child using these methods was usually minimal and mothers had to endure being thought to have caused their child’s autism. The data supporting this harsh conclusion was minimal at best, yet belief in it was widespread and thousands of autistic children and their families were affected by it.

In 1964, Bernard Rimland made the case that autism was not an emotional problem caused by traumatic childhoods and cold mothers, but was rather a neurological illness. The new theories stated that the illness was an expressive and receptive language processing problem, a severe social deficit, with other symptoms—excesses and deficits in behavior such as self-stimulatory behavior and impaired eye contact —that would be helped by intensive instruction, whether rote or more creative. The impaired outside actions reflected what was going on inside. Treatment emphasized capitalizing on the window of opportunity (we heard this phrase a million times in Ido’s early years of instruction) in the child’s early years to remold the brain so that the child might be able to appear normal in society. Children either were able to overcome their symptoms and become normal, according to this theory, or they stayed impaired throughout their lives.

All parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source that this hope was foolhardy, that to believe this might be so was to be in denial, that parents needed to accept that behind their child’s autistic behaviors lay an autistic soul. I read that what Ido showed on the outside matched his delayed inner world. Ironically, though I had been advised that there was no normal boy within Ido, our program was attempting to create one, or at least a facsimile of one, by drills and incremental learning intended to remap his brain. Hanging over us was the possibility that Ido might be one of the lucky ones who completely overcame all of his autism symptoms and was able to appear indistinguishable from his typical peers. Apparently it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.

Language is our pathway to connecting deeply with others. To be denied communication is to limit one to a life of frustration, loneliness and being misunderstood. Ido calls it a crime against humanity. As Ido pointed out