10 months ago



Teddy 97 at home as

Teddy 97 at home as well. Sean was a salesman who traveled a great deal. Melody did not have family in the area, having moved here from England, and so she had little support to cope with the chaos that sometimes accompanies a child who has both autism and hyperactivity. Our appointment that day was intended to be a feedback session, where parents ask questions about autism and what it means for the future. The same three questions come up time and again during these sessions: What caused the disorder, what can we expect for the future, and what can we do to help? We had little opportunity to talk seriously that day while Teddy was running around, so I suggested that we meet again without any of the children and talk about what was uppermost in their minds. When they returned a few weeks later, my heart went out to them. As they came into the office I could see that they were very anxious. I knew that during college Melody had taken a course in psychology and had learned about autism from textbooks that were now out of date. Sean had first heard about autism from movies he had seen on TV. What they knew about the disorder was pretty discouraging. “In college, I read that institutionalization was common, that children with autism grow up to be loners, they can’t live without their parents, they require constant supervision and are never normal,” Melody said tearfully, shaking as she presented me with the information that had frightened them both so deeply. While his wife spoke, Sean stoically looked out the window, grim faced. Then he turned to me and said, “All I know is what I’ve seen on TV: autistic adults sit in a corner all day and rock back and forth, they don’t talk to anyone, and they injure themselves when they get mad. Like Rain Man. Is that true? Is that what we have to look forward to?” As if the floodgates had opened, questions poured forth one after the other as Sean reached over and held his wife’s hand tenderly: “Is there any chance he will be normal?” “Do you know of any adults with autism?” “How have they turned out?” I could just imagine them in the kitchen, talking quietly after all the children had been put to bed, eager to comfort each other but finding it difficult to do so, wondering about the darkness that threatened to envelop them in the future. I did indeed know some adults with autism and proceeded to tell them about Woodview Manor, a supported independent living program for young high-functioning adults with autism and AS. * * *

98 A MIND APART Woodview Manor is meant to provide its residents with the skills needed for independent living in the community. It is run by Rick Ludkin, a child care worker who used to work with adolescents who had trouble with the law. He became interested in autism when one adult with ASD that he was helping was inappropriately charged with an offense. That adult turned out to be very rewarding to work with, and Rick developed an entire program to help adults with ASD as a result. Woodview is home to about ten adults with ASD, all of whom are high functioning. They learn to cook for themselves, to budget, to buy food, to do laundry, and generally look after themselves. They also receive some vocational training, and the staff tries to help the residents find jobs. The annual Christmas party at Woodview happens to be my favorite seasonal event. Each year the house is festooned with the usual Christmas decorations, and everybody brings their favorite potluck dish for the buffet meal. I usually bring a curry, which people find slightly exotic but rarely eat. The residents are nicely dressed, in jacket and tie with perfectly pressed pants. They are certainly better dressed than I, and better than many of the staff as well, who are not much older than the residents themselves. I like to bring my wife and children so they can meet the people with whom I work. I’ve known a few of the residents for a long time, some as long as fifteen years. I’ve watched them grow and mature into young adults. The change is quite astonishing, but none of the residents could be considered socially skilled or even normal by the usual standards. They greet me politely, ask my family a standard set of questions, and then leave it to me to continue the conversation. They are somewhat stiff and formal, but I know it takes enormous determination and strength of character to do this much. The residents have been told countless times that they must greet people, that it’s the “proper” thing to do. They have a natural inclination to retire, to back away from saying hello. They contend with a type of social inertia that is so heavy it must weigh down on them. To initiate social interaction, to participate in a social ritual is not easy for them, and I can tell they are quite uncomfortable. Nevertheless I’m grateful that they make the effort and see me as a continuing part of their lives, even though I may not be their physician anymore. I meet their mothers and fathers again each year. We say hello, and I politely inquire how things are this Christmas compared to last. Over time I feel less like a doctor but not quite like a friend of the family. In many cases, I’ve been present at times of crisis, when one client was suspended from school or another made a suicidal gesture. But I have also

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