9 months ago



Teddy 111 volume turned

Teddy 111 volume turned up very loud. I introduced myself politely, but I soon realized he was suffering from some type of hearing impairment. Susan told me her mother had died some years ago. She now looked after her father. They were visited occasionally by a social worker and some home help, but for the most part Susan did the shopping and cooking and cleaned up the house on a regular basis. She had no daytime employment, did not go to any sheltered workshops, but spent her time in her room poring over calendars and movie magazines. She was quite happy with her life and wished for little else. Years ago, when her mother was alive, she got Susan into a routine of cooking and doing light housework. It had taken a long time, but again she must have been a forceful person, as eventually she was successful in teaching her daughter to look after herself and the house. Once that routine was established, it had a life of its own, and now that her mother was gone, the routine was all that allowed her to look after her father and still live at home. Her triumph was that in spite of her disability she managed to look after her father. One of the benefits of rigidity is that it makes a routine, once established, so much a part of a person with autism’s life. She may not have considered looking after her father such a burden, but I could only wonder at her capacity to make a life out of these circumstances. It was the capacity for autistic routines that saved this family. Susan just went about her business quietly and efficiently, but I was aware of the enormous effort and training that had gone into the establishment of that routine in the first place. Her mother must have had that indomitable will I had seen so many times in other families. * * * I tried that day to give Melody and Sean something to hold on to, something to use as a touchstone as they navigated their future with Teddy. I hoped the things I had learned from these stories would illustrate the potential for goodness in people with autism and ASD and the traces of courage and fortitude found in the most unlikely places. I wanted to emphasize the common elements I found in those stories of children who had done well. Perhaps those elements as well as other lessons learned from more recent outcome studies could illustrate how the children with ASD arrived at where they are, from where they were. One common theme is that focusing on reducing the level of im-

112 A MIND APART pairment and improving functioning seems to be more effective than trying to eliminate autistic symptoms alone. The first things to improve in young children with ASD are attending to instructions, simple language skills, compliance with simple commands, and later on skills of daily living such as dressing, eating at the table, going out into the community, and so on. These improvements show up in both treatment studies and those that describe outcome, independent of any particular treatment. Autistic symptoms, particularly those that reflect the social reciprocity impairment and restricted interest legs of the autistic triad (see Chapter 1), rarely disappear completely; they often became more subtle, more private, or more circumscribed to a specific time and place. It seems easier to improve IQ scores than autistic symptoms themselves. The autistic symptoms seem to decrease on their own as functional skills in communication, social interaction, and play improve. Working on these functional skills becomes an important avenue for further community inclusion in school, on soccer teams, in Scouts, and elsewhere, which in turn improves the child’s daily living skills even more. It was certainly true that parents who advocated forcefully on their child’s behalf to be included in these types of community activities and settings had done better in my outcome studies, as shown by the story of Hershel. Another important lesson is that there is a false dichotomy between teaching the child a new skill to improve functioning and doing something to the environment to accommodate to those deficits. Most often, the environment includes people with whom the child interacts or the rules and regulations that govern their interactions in school or other community settings. The key is to get those people to readjust their expectations and to work around the limitations that having ASD imposes on the child. Changing the child cannot occur without changing the environment; a continuous dialogue occurs between those two poles. Once the environment (or people) accommodates to the child, it’s easier to intervene with the child, which in turn changes people’s attitudes to be more accepting of eccentricity. I saw Sean and Melody some months later for a follow-up appointment. Teddy was now in a special day care, he was receiving speech therapy and help in playing with peers, and was enjoying going to school. Sean and Melody were much more relaxed about his situation and were willing to give this intensive approach a chance. They had come to appreciate small gains in his development and were very pleased with each new word that Teddy seemed to understand. A smile