Everything You Think You Know About Autism Is Wrong
Autism is a painfully mysterious syndrome. We don't know what causes it, although we do know that about 1 in 88 births will produce an autistic child. We know that it's the fastest growing developmental disability in America, although we don't know why. The commonly used treatments have limited effectiveness, so increasing numbers of adult autism sufferers cannot care for themselves, requiring costly life-long maintenance.
Part of autism's mystery lies in the nature of the condition itself: in its most severe form, it leaves the autistic person entirely unable to communicate, either verbally or physically. It's not just that someone with autism cannot speak. As most who have lived with or seen autism know, a child with serious autism seems entirely disconnected. Autistic children do not make eye contact and they don't play. Instead, they flap their hands, roam around a room's periphery, engage in endless repetitive activities, and seem locked away in their own world.
Some experts contend (erroneously, as it turns out) that autistic children dislike physical contact, cannot emote, and lack the capacity for loving. This seeming emotional isolation led the misogynistic Bruno Bettelheim to conclude that mothers caused autism when they (allegedly) withheld affection from their child. This wrongheaded theory inspired generations of loving mothers to suffer enormous guilt.
Even though Bettelheim has mercifully fallen by the wayside, non-verbal autism still contains many questions. This mystery is about to undergo a significant challenge, though, due to Ido (pronounced "Ee-doh") Kedar, a 16-year old young man who has written about his journey from isolation to communication in Ido in Autismland: Climbing Out of Autism's Silent Prison.
Full disclosure: I've known Ido for many years, which means that I can attest to the fact that he wrote every word in this book. The mature vocabulary, the sly sense of humor, and the thoughtfulness are all his. He displays these traits in every personal interaction.
The above disclosure is necessary, not just because readers should always know of relationships between author and reviewer, but also because those unfamiliar with non-verbal autism might believe that Ido's parents or some well-meaning therapist wrote the book on his behalf. It would be easy to make this mistake. Ido presents as a very typical, non-verbal autistic teen: he's tall, good-looking, and, except for his occasional sweet smiles, his face is usually expressionless. His is not merely a poker-face. It's a face utterly free of the cues humans instinctively look for when meeting another person.
Ido's speech -- which he rarely uses -- is limited to half-formed syllables. When he speaks, he produces about 40% of the sounds required for full communication, so he is intelligible only to those familiar with him. When a room gets too crowded or noisy, Ido's hands start flapping wildly before his face in a movement known in autism circles as a "stim." Sitting still is hard for him and he has a tendency to grab what he wants. If you ask Ido to pass a salt shaker to his mother, it might end up in his father's hand. The following video is a good example of an autistic child's random movements and stimming:
And yet.... There is so much more to Ido than what one sees on the surface. Put a letter board in his hand, on which he can tap out the letters of the alphabet to spell words, and you suddenly find yourself speaking with a young man who is witty, erudite, and wryly self-aware. When he was thirteen and we went for a walk, Ido kept leaning towards me and taking deep whiffs of my hair. After we got back to his house, I asked him: "Why do you keep smelling my hair?" His quickly tapped-out response took me aback and made me laugh: "I am a very sensual person." When I questioned him about the manifest excitement he displays when he sees a car's headlights, he told me that "I don't see them the way you do. To me, they are a kaleidoscope of light. It's like a hallucinogenic experience." Ido is indeed a very "sensual" person -- that is, one whose senses are open in ways non-autistic people can never experience.
Here's an example of Ido speed-writing on his letter board:
Ido's exceptional intellectual abilities were almost lost forever. As his mother details in the book's introduction (one that, unlike many introductions, is a must-read in order to understand how extraordinary it is that Ido emerged from his silent prison) and as Ido himself explains in the book's diary entries, when Ido was diagnosed autism experts presumed that children with autism were blank slates, both emotionally and intellectually. The experts believed then (as many still do now) that the only way to reach and train an autistic child is to spend eight hours a day, 365 days a year drilling the child in object identification, recognizing facial emotions, and a few basic life and academic skills.
What no one realized, and what Ido was incapable of communicating, was that he has a fully-functional -- indeed, highly functional -- brain. As Ido explains in his book, one of the things that makes him different from non-autistic people is that, as he had said to me, he is indeed a "a very sensual person." Rather than getting too little data, he receives too much. He has hearing like a lynx, so that he can hear conversations several rooms away; his senses of smell and taste are off-the-charts, so he always wants to experience things at an olfactory and taste level; his vision picks up nuances of light the rest of us don't know exist; and he has heightened tactile awareness, which makes touching things often irresistible.
The one thing that Ido is woefully unaware of is his own body. He describes the frustration he regularly experiences as he tries to bring his wayward body under his mind's control. He hands the salt shaker to his father, rather than his mother, not because he can't distinguish the two, but because his arm has a mind of its own. Unless he's watching his feet carefully, he can't put his socks on. And when he lies in bed at night, in the dark, the only thing that keeps him anchored in space is to have his blankets wrapped tightly around him.
What's even more frustrating for Ido is that, while his input is different from, and probably greater than, the input non-autistic people receive, his output is minimal. His face has almost no affect, his mouth can't shape words, and his body frequently resists his efforts to control it. His conscious mind sends out strong signals, but his body tunes out.
Ido's book begins by comprehensively documenting the painful boredom that came with spending every single day of his life, starting at three, doing repetitive drills aimed at teaching him to identify simple objects, put names to emotions, and know the alphabet. Because he was non-verbal, Ido was unable to explain that he had already taught himself to read, that he could do basic math, and that he perfectly understood, although he couldn't express, a full range of emotions. Nor could Ido explain that, in addition to understanding everything around him, he lived in a physical and emotional environment much richer than that which non-autistic people experience. Instead, he was stuck doing, not just toddler drills, but boring toddler drills, eight hours a day, seven days a week, three hundred and sixty-five days a year:
With ever-increasing despair, Ido writes about his realization that institutional myopia condemned him to a lifetime of monotonous drills, unfulfilled intellectual dreams, and intense loneliness. The early part of Ido's book makes for painful reading, but it is necessary to understand (a) the wonder of what happened when Ido was able to break out of his silent prison and (b) the incredible gift this book is to those who are related to or care for such a person.
One of the ways Ido tried to deal with his almost untenable existence was targeted anger -- against the drills and against his parents. Ido's mother, Tracy Kedar, kept hearing from the experts that Ido's hostile behavior was just a random outgrowth of a damaged brain. The experts, however, could not drown out her gut instinct that Ido's rebellious acts were powered by a focused, logical intelligence, rather than mindless acting-out. Once Tracy became convinced that Ido had a fully functioning brain locked into a recalcitrant body, she and her husband sought out someone who could break through Ido's frustrating physical and verbal barriers. They found that person in Soma Mukhopadhyay, who had taught her own autistic son how to communicate and who believed that she could do the same for Ido.
Soma was right-- she could do for Ido what she had done for her son. Although Ido describes vividly the vigorous fight he initially put up when yet another expert came into his life, he eventually realized that Soma was his salvation. Soma uses a very graduated process that in some ways echoed the same drills Ido had done with other experts. This similarity to other training explains why Ido was initially quite hostile to Soma, for he saw her as another in a long line of jailers.
What made Soma different from all the other experts and teachers was that she acknowledged Ido's intelligence from the start. While the other teachers forced him to engage in what he describes as endless, mind-numbing and demeaning repetitions of the alphabet or single-digit addition, Soma plunged into grade-level lessons in science, math, and literature. Also unlike the other "experts" who gave him constant food rewards, as if he were a dog, Soma saw learning as the reward and treated Ido like a real student, with a real brain.
Finally, Soma's core method (called Rapid Prompting Method or RPM) moved quickly enough that it prevented Ido from falling into his stims (the repetitive flapping movements that so many autistic children use) that had constantly interrupted his own focus. Soma's training was laborious, but within months Ido had mastered the focus and motor control he needed to interact with the outside world.
Once Soma enabled Ido to use the letter board, he took off. Although very shy (something he talks about movingly in his book), Ido started connecting with the outer world. It's a joy to read his trenchant observations about autism experts (some open-minded, and some remarkably stubborn), ordinary educators, the other autistic children in his world, his parents, and his friends and family.
One of the best things that shines through the book is Ido's capacity for love. For so many years, autism experts have thought that autistic people have no emotional life. Ido kills that belief forever. Not only is Ido's a very rich emotional world, it is both an astute and a loving one. Ido's book essentially takes a sledge hammer to theories that autistic people have no empathy, no ability to read people (which may be true for some people with Asperger's, but is manifestly untrue for Ido), no theory of mind, and no feelings or that they suffer from cognitive delays, receptive language processing problems, and other learning disabilities.
For me, reading the book was especially eye-opening because it explained so many previously mystifying behaviors I'd seen Ido display. Ido talks about the drug-like pleasure and tranquility he realizes from his stims. For a brain that, rather than being insensible, is hyper-sensitive, stims are a way for the autistic person to control his environment. I also now understand why Ido cannot resist the lure of a swimming pool. The pressure of the water surrounding him makes him connect with his body, so that he is no longer physically lost in space. He absents himself from social gatherings, not because he is not connecting emotionally or intellectually with the people around him, but because the noisy, busy environment overwhelms him. (Imagine constantly wearing a hearing aid turned on full blast.)
Lest you get the idea that the book reads like a pedantic textbook, it doesn't. In addition to explaining a previously mysterious disability, Ido also writes with a wealth of humor and insight, both about his own condition and about the ordinary adolescent mind. Many people who have read the book will name as their favorite chapter "Austism and the Bossy Women," which is a microcosm of his world, his wit, and his intelligence:
Women who think they know it all have filled my life.
Wow, do I sound sexist? Not meant to be sexist. It's another rant.
From my home programs as a little kid, to my OT therapists, to my speech therapists, to my teachers, to many of my evaluators, I have been bombarded with experts who have talked about me with such conviction, who assumed they were right, and who, in many cases, were not. They have almost always been women, for some reason.
Apropos women, I have to throw in one more Ido anecdote to give you a sense of the young man who wrote this quite amazing book. I was at a get-together where we were playing a board game called Taboo. For those of you who have never played this fun parlor game, here's a quick explanation:
It sounds so simple: get your team to name common words [or identify well-known people] without voicing a few choice descriptors. But could you describe a wristwatch without mentioning time, wrist, or clock? Taboo rewards those who think--and speak--fast. The team that correctly identifies as many words as possible in a minute (measured with an hourglass timer) wins. If a member of the opposing team, armed with the blaring buzzer, catches the clue giver using any of the taboo words, a point is deducted from the group's score. It's a good idea to separate people who know each other well, because their familiarity can be too great an advantage. If the clue is spinach, prompting with "Mom made this every Monday" just doesn't seem fair, though it is permissible according to the rules. Playing Taboo requires an AA battery and a sense of humor--you'll need them both! The timer is included. Taboo is for four or more players.
When it was Ido's turn, he had to help his teammates guess "Marilyn Monroe." If I remember correctly, he was banned from using such obvious words and phrases as "sex symbol," "blonde," "icon," and "movie star" when he described her. Ido, thirteen at the time, was unfazed. He quickly tapped out "Kennedy's breathless birthday singer." His team won.
If you work with autistic children, if you have an autistic child or relative, or if you know someone autistic, I cannot recommend this book highly enough. I know that the parents of most autistic children, like Ido's parents, never give up their belief in their child or their hope that, some day, their child can begin to communicate with them. Until today, though, most of them didn't have the sheer good luck to fall within Soma Mukhopadhyay's orbit. Ido's book introduces other autistic children and their families to the same pathway to freedom that Soma gave to him. With his insights about both the problems and the blessings of autism, those whose lives intersect with autistic people will never view autism in the same way again.
(If you would like to learn more about Ido in addition to reading his book, check out his blog, Ido in Autismland.)
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