9 months ago



Zachary 49 were part of

Zachary 49 were part of his TV viewing and other interests. He had a worried look on his face; he paced around the house asking his mother questions over and over again; he was having trouble sleeping. He never spontaneously said he was worried about death—one might expect that from a more typical child—but nevertheless there was a feeling of anxiety throughout the entire interview that was evident in Zachary’s actions. Children with ASD find it difficult to talk about their feelings; that is, after all, part of the disorder. Instead, anxiety is often signaled by certain behaviors: repetitive questioning, disturbances in sleep, pacing, and an increase in repetitive actions, such as finger flicking and rocking. It is also often accompanied by a more intense preoccupation with the child’s usual interests, so that getting his attention to turn to something else (like coming for dinner or turning off the TV) can provoke aggression and temper tantrums. Little is known about how common these anxiety symptoms are in ASD and how to treat them. One frequently encountered set of anxieties are specific phobias of an unusual content. As mentioned in Chapter 3, children with ASD can be terrified of bees or mosquitoes, rain or the fog—things that don’t usually terrify typical children. For example, Stephen would become distraught if one of his balloons made an unusual sound when the air escaped. He was very afraid of the broken bits of balloon flying around. In contrast, typical children may become phobic about the dark, big dogs, or spiders, phobias that are more understandable. Some adolescents with ASD have more generalized worries about schoolwork, about being teased, about having girlfriends—but again, often with an unusual twist. For example, Justin would become anxious about being too close to people, about harming them, about his bodily functions and how these might influence others. Typical children are anxious instead about being separated from their parents, afraid that something bad might happen to them, or else they are very selfconscious, easily embarrassed about their appearance, their speaking habits, and their clothes. Children with ASD seldom have such worries and are rarely, if ever, embarrassed since this emotion requires a clear understanding of how others might perceive them. Another important difference is that typical children are able to articulate more clearly that they are worried. These and other emotions are more apparent from their facial expression and overall behavior than they might be with children with ASD. However, the most common anxiety among children with ASD is about change. They will, as explained in the preceding chapter, try to

50 A MIND APART avoid it as much as possible. Indeed, “resistance to change” was one of the core symptoms of autism described by Leo Kanner more than fifty years ago. Children with ASD want things in their personal environment to remain the same—always. So do most typical children, but the odd thing about resistance to change is that for children with ASD the anxiety is not about major changes in a child’s life (like changing schools or moving to a new house) but rather about more trivial changes—painting the bedroom a different color, buying a new car, taking a different route to school, or hanging new curtains in the living room. Changes such as these can precipitate terrible anxiety and frantic attempts to make things return to the way they were before. The birth of a sibling or the death of the family pet often passes unnoticed or is endured with seeming poise and equanimity. But the changes that Zachary was concerned about were not necessarily trivial; he was concerned about his grandmother’s death and about death in a more general sense. This was not resistance to trivial changes in his life. This was like an existential crisis, so unlike other children with ASD. I did not understand what was going on. When a new symptom is difficult to understand, it’s frequently best to go back to the child’s developmental history to look for clues that the symptom was already present but in an attenuated or covert form at an earlier point in development. In this case, it made sense to see if the current anxiety was part of a more general tendency for anxiety in Zachary’s developmental history. I decided to go over his early history again and to look for anxieties that were perhaps not apparent at first. * * * I reviewed everything I knew about Zachary to try to understand the origin of this anxiety about death. Of course I had known him only since he was age six, but I did have information about his earlier development. Zachary’s mother first became concerned with him at around ten months of age, when he stopped making sounds. Eventually he developed speech and was talking in sentences by thirty months. After that his speech progressed appropriately, except that he had a funny way of talking; he sounded a lot like Ringo Starr. Even at that young an age, though, it was difficult to have a conversation with Zachary. It was true that his grammar and vocabulary were mostly age appropriate, but he only wanted to talk about Thomas the Tank Engine and bumblebees. He would not respond to other questions, preferring instead to remain

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