9 months ago



Teddy 107 yardstick to

Teddy 107 yardstick to measure success should not be the successes of other children but the child himself, last year or the year before. One of the things that struck me forcibly when I started working in this field a couple of decades ago was that the outcome literature on autism did not seem to apply to higher-functioning individuals. The published studies were quite old, conducted in the days when autism was felt to be caused by poor parenting. At that time, parents were often enrolled in long-term psychotherapy with a social worker and the child was given years of play therapy. That literature was no longer relevant since it was conducted before the emergence of more effective forms of early intervention based on behavioral principles. However, the newer data on outcome had not trickled down to the general public. Moreover, there were no data on the outcome of the other forms of ASD, like AS. Since many more children were getting this diagnosis, there was a significant gap in the evidence. Could I help fill it? My first experience with research was a follow-up study I conducted in 1987 in collaboration with the West End Crèche in Toronto. At that time, the Crèche was known as the center where autistic children were treated. The physician in charge was Dr. Milada Havelkova, a Czech anesthetist who had immigrated to Canada after the war. The only job she could get was in child psychiatry, and she was given the Crèche as a clinical base. There she became very interested in autism, and starting in the early fifties, the Crèche became the therapeutic center for these children in Toronto. I wanted to contact the adults who had been given a diagnosis of high-functioning autism by Dr. Havelkova as children. She was very gracious and enthusiastic about the possibility that her work might be continued. I remember spending one very snowy Christmas Eve day in the basement of the Crèche, going over all the old client files from the early days. I sat in the basement of the old building in what used to be the laundry room. The ancient wringer washer was still there, and there were old files in boxes and cabinets everywhere. It was dusty, damp, and cold. There must have been at least five hundred files that had to be pored over. It was quite revealing to read those old charts, with their antiquated terms (childhood psychosis, brain-damage, symbiotic psychosis), to get a glimpse of Toronto and how special needs children were treated at that time. It was disconcerting to think that while I was growing up in this very city, there were other families living such dramatic and often hopeless tragedies within miles of my house.

108 A MIND APART I managed to contact twenty adults with autism treated at the Crèche in the ’50s who were said to be higher functioning as children and still lived in the city. I traveled to their homes and interviewed them and their parents. What surprised me was how well a small subset of children had done. Of the twenty, four had done remarkably well; they were living on their own, had good jobs (librarian, salesperson, tutor, university student), were dating, and had friends. One was even married. And this was in the days before any effective treatments were available! The first thing I learned is that the natural history of highfunctioning autism includes remarkable improvement, even in the absence of intervention. Fred’s story was an illustration of one of the best outcomes I encountered. I arranged to meet him outside his apartment one evening. I arrived on time, which was unusual for me, keenly aware that many people with autism were quite rigid about their routine. For all I knew Fred had a specific schedule and would be very upset if I were late. Instead, nobody was there. I waited and waited, wondering where he might be. I was about to leave when a young man, dressed quite elegantly in suit and tie, arrived breathlessly and apologized for being late. Was this Fred, the person with autism I was supposed to meet? It was indeed. He explained that he had been tutoring a high school student in geography and that it had taken longer than expected. He asked politely whether I had eaten, and when I said that I had not, he suggested we go out to dinner. I was completely taken aback. He was so polite and even thoughtful about whether I was hungry. I would never have guessed that this young man was “autistic” given my recollection of the severity of his symptoms as a child. His medical chart described temper tantrums, rigid behavior, lack of social interaction with adults and other children, and intense resistance to change. Was this the same person? We drove to the restaurant in my car. It was one of those small Italian neighborhood restaurants that served homemade pasta. We talked for a long time about his childhood, his current situation, and his aspirations for the future. He had very few memories of being autistic; in fact he could not remember anything prior to five years of age. He was in a class with other children with autism, which turned out to be an unpleasant experience. He had always been interested in maps; indeed, that was his obsession as a child. It was remarkable to me that geography was now his career, that he had been able to take an “obsession” and turn it into a useful vocation. He earned money as a tutor but was hoping for a more promising career in teaching. Anybody looking at us