11 months ago



Trevor 137 library,

Trevor 137 library, where she took him once a week to interact with other children. She talked to team members about the meaning of certain behaviors. She learned that Trevor had a different set of priorities, a different set of values from the rest of us. Trevor did not choose these values of his own free will; they were imposed on him by the contingency of his biology. Trevor’s priorities were sensory—visual patterns and textures—not social interaction. His mother could see that he had an incredible memory for details; it was this that consistently caught his attention, not the presence of another person. From her work in the maternity unit in the hospital, Alice knew that babies were attracted by the human face. Trevor seemed to ignore faces but stared for hours at the mobile swinging over his crib. Alice also knew that toddlers were aware of where their mothers were at all times. Trevor, on the other hand, could watch cartoons all day long and never checked to see if she was still in the kitchen cooking dinner. Trevor’s world revolved around a different axis, just as Heather’s did (see Chapter 2)—it was as simple and yet as mysterious as that. By observing her son closely in this way, Alice could now see how the fundamental deficits and strengths that affect all children with ASDs take shape in the autistic behavior of an individual child: How Trevor might ignore faces because he had no intuitive understanding of how facial expressions were a window into someone’s thoughts and feelings. How the mobile was not a bunch of “silly cardboard pieces” to Trevor but an object through which Trevor saw facets of the intimate architecture of the world that most of us never notice. How communication, such a natural, automatic developmental achievement for typical children, was to her son as formidable an achievement as learning calculus at age thirty-six months. How frustrating it must be for Trevor to lack the skills of asking for help if he wants more bubbles blown his way, if he wants more juice. Alice began to imagine as well how important the ability to be soothed and comforted was for children. Children get bumps and bruises all the time; they get scared, feel lonely, feel hurt. Alice was sure that Trevor felt all these things too, but he would not come to her for comfort, and if she picked him up to soothe him, it had no impact. In fact, it must feel to him like he is in a vise grip. The world must seem a frightening and bewildering place for Trevor, and he had to face all these challenges alone. With this understanding it now became possible to build a more positive relationship between mother and son. Alice learned to read Trevor’s behavior as a communication of his internal state. She became

138 A MIND APART more sensitive to the subtlest forms of nonverbal communication. Certain sounds meant that Trevor was unhappy; rocking was an indication of mounting anxiety about some anticipated change in routine. All of a sudden, Alice understood that Trevor was communicating all the time! It was just that he was using a different communication system. Alice’s role was to break the code, and once she understood this, she became more patient, less likely to become angry and misinterpret Trevor’s actions as willful and stubborn rather than as directed at keeping his world in order. Alice and Trevor were now ready to begin treatment. She was getting a little frustrated with me because I kept postponing this discussion about treatment until she could integrate all the information about ASD and see how it applied to Trevor. But it is so important to stop the frantic search for a cure and understand the context of what having an ASD means to the child. “When are we going to begin treatment, and what treatment are we going to use?” she kept asking me. I didn’t mean to appear secretive, but there was a lot of information to impart about treatment, and that takes time. Spending a few months on assessment, understanding treatment needs, having a good appreciation of cognitive strengths and weaknesses is essential. Understanding the capacity for learning very simple skills takes time and is essential in ensuring that the treatment is delivered in as efficient and effective a manner as possible. Taking that time does not delay the initiation of treatment; in fact it is an essential part of treatment. Starting treatment too early can be delaying treatment as well if it leads to false starts. There has been an important shift in the philosophy of treating children with autism and AS over the last decade. Part of the reason for that shift has been a greater awareness of what is realistic to expect in terms of treatment response and a greater appreciation of the unique features of ASD as a disorder that affects all aspects of development. In the past, the emphasis was on reducing autistic behaviors such as echolalia (repeating phrases), behavior problems, and motor mannerisms (such as rocking, spinning toys, finger flicking) using a number of techniques, including punishment. Some of the therapists who used such techniques also made extravagant claims of “cure” in the absence of well-documented changes in day-to-day functioning. The goal is now not so much to reduce or eliminate “autistic behavior” but rather to facilitate social and communicative competence and so reduce the degree of impairment in day-to-day functioning. In this way, the so-called

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