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8 months ago

978-1572305441

autism

Teddy 109 eating our

Teddy 109 eating our pasta at the table would imagine we were talking about girls, sports, or the latest gossip at the office. Instead we were talking about being autistic, what that was like from the inside, and what was left of the disorder as part of his personality. He felt that the only residual impairment he experienced was anxiety in social situations. He had dated girls, intended to marry eventually, but felt a little anxious in group settings. He was animated, funny, made jokes about himself, used lots of gestures. Yes, he was a bit stiff and formal but hardly different from many people his age. Was Fred normal? How different was he from millions of others who grew up as typical children? His development was indeed a triumph. Admittedly, this type of outcome is quite rare, but it’s not impossible. In my study, it occurred only in individuals with autism who were quite bright. What was so remarkable in Fred’s case were the dreadful interventions he had received as a child, so I could not even begin to guess what had made a difference in his situation. One clue, though, was provided by the story of Hershel. Hershel’s outcome was perhaps not as spectacular as Fred’s but was amazing in its own way. He lived with his mother in the suburbs and was enrolled at the local university. He was taking history and a few general liberal arts subjects, but he was barely passing and was receiving extra tutoring. I went to his home, a modest bungalow set among mature trees on a quiet street. It soon became clear to me that this was a deeply religious family. Hershel was a quiet young man and wore a yarmulke. He spoke little and answered my questions politely but succinctly. He lived an isolated life but attended synagogue regularly. He had some friends but saw them only through the synagogue. He had few hobbies or outside interests. He was unclear about his future but was very concerned about his marks at university. He was perhaps too concerned about graduating to the exclusion of all else. He did not see the degree as a means to an end but an end in itself. Still I was astonished at how well he had done over the years. There was no possibility that the early diagnosis was wrong, as I discovered when I later reviewed the chart. Hershel had had many autistic symptoms as a child and was reported to have a fairly severe learning disability. That made his academic accomplishments all the more remarkable. What I remember most vividly about the interview, however, was Hershel’s mother. She was a forceful woman, though small in stature. We sat at the dining room table, surrounded by family photographs of children and relatives from the “old country.” She talked vividly about those early years, the pain, the anxiety, and the worry about the future.

110 A MIND APART When she first noticed something was not quite right with Hershel, she took him to a specialist at a large teaching hospital. The specialist said the boy was autistic and the mother should make plans to have him schooled separately from other children and eventually institutionalized. Hershel’s mother listened to all this with a stoic countenance, thanked the doctor for those words of advice, and then quickly dismissed everything he said. She looked at me sternly and said, “When I left that office, I swore I would make a mensch out of that boy if it was the last thing I did!” After that clinical encounter, Hershel’s mother enrolled her son in a regular kindergarten in his neighborhood school and signed him up for all the activities appropriate for a boy brought up in a religious home. She remembers fighting with all the professionals at the school board, the petty clerks in the recreation programs for children, the doctors who thought they knew better. Nobody could challenge her determination to help her son. He may have been ostracized, he may have been made fun of, but at the end, who could say how he would have turned out if she had not fought for him so valiantly and courageously? She had an indomitable will that few could withstand or resist. What she did was not fashionable in the Toronto of that era. There was no evidence then, as there is now, that mainstreaming children with autism was more beneficial in most circumstances than setting up special schools and segregating them from their peers. No doubt, the professionals in their offices, with their 2.5 children at home, nodded sagely at case conferences to each other and said that she was overinvolved, that she was in denial about her son’s disability. But what perhaps few of these professionals realized was that it was this advocacy that had made much of the difference in Herschel’s life. Susan’s life told a rather different story, triumphant in its own right in spite of the abject poverty in which she and her father lived. She resided in the heart of Toronto, in a rather run-down neighborhood. I remember standing on the porch of her house, ringing the doorbell. The house was in considerable disrepair, the paint was peeling, and the screens were coming off the windows. Eventually Susan came to the door. She looked at me quizzically and then remembered we had an appointment and invited me in. She had been upstairs, she told me, doing some calendrical calculations. She ushered me into a small living room. Calendars from different years were hung haphazardly on the walls, all showing the same month. An elderly, and obviously infirm, gentleman was sitting slumped in a chair, watching a game show on TV with the

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