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9 months ago

978-1572305441

autism

Heather 21 contact,

Heather 21 contact, rarely smiled, and showed little interest when her grandparents came to the house to visit. Naturally, Heather’s mother was very confused at first by her daughter’s behavior. Why did she carry around the bathing suit? Why did she eat only honey-coated cereal? Why would she refuse to have her hair brushed? But above all, why did she not want to play with her mother? Why did she not seem interested in her mother at all, in fact? What was the source of the distance between them? This was the most difficult and painful question to pose. The answers that she feared might be true were the very ones she gave herself in the middle of the night: She worried that she was a bad mother, easily angered and frustrated. She had taken Heather away from her father at too young an age. She did not have enough money to buy Heather the toys she wanted. Perhaps Heather was enraged at her mother? The whole thing was obviously entirely her own fault. In the face of uncertainty, we often fall back on “easy” or simple explanations; we personalize events and feel that they must be our fault. Janice’s inability to understand her daughter, her behavior, and her eccentricities led to feelings of guilt, and that guilt put a strain on their relationship. Without understanding Heather, she could not get close to her. It was as if Heather was a shadowy figure in her mother’s dreams. Instead of a feeling of closeness, guilt and recrimination rose up inside her and occupied her inner life. As a result, Janice lost her patience with Heather, she became irritated with her, she found it difficult to parent her, she could not tolerate her being so “different.” Why couldn’t she be like the other children at day care? All of Heather’s difficulties were an accusation of her mother’s failure as a parent. Starting with our very first visit, Janice expressed this terrible sense of disappointment and loss. What Janice wanted most was what all parents want—a loving relationship with her daughter. What she got instead was a sense of exile in her own home. As long as Janice turned on the TV, got the right video, and put the honey-coated cereal in front of Heather, her daughter was happy. But there was little connection between them over and above these purely instrumental gestures. Heather didn’t seem to need the personal closeness that her mother desired so much. In fact, Heather seemed to ignore Janice, to be almost indifferent to her mother’s comings and goings, to view her mother as less important than her toys and TV. There was no sense that mother and daughter were together sharing an adventure, discovering the world.

22 A MIND APART When I finally completed the assessment, I remember the shock and disappointment that swept across her mother’s face when I said, “I’m afraid Heather does have an autism spectrum disorder.” I let the news sink in for a moment before asking Janice how she felt about that. “I was afraid you’d say that,” she replied. “I was hoping for a different answer, though.” There was an awkward pause as Janice rummaged through her purse for a tissue. Her next statement was delivered with determination to keep the tears out of her voice: “OK, now I want to know what I can do to help her.” In that simple declaration I recognized the process that begins with a flicker of recognition that a child is not developing as expected and then suddenly takes shape and crystallizes, becoming as hard as granite in the pit of one’s stomach. In response, parents begin a desperate search for a sense of direction. When they hear the term “autism,” a gaping hole opens up at their feet. The only way to fill it is to offer knowledge about the disorder, knowledge that leads to hope and a sense of mastery. Plank by plank, the hole gets covered up, and the first board to be laid is knowledge. The information that parents want most is what treatment strategies are effective in building skills and in reducing autistic behaviors. While this is extremely important, at the same time it is essential that parents understand the disorder—the range of symptoms that impair all aspects of functioning and how this manifests itself in day-to-day life. In this way, the disorder begins to make sense; it is no longer so mysterious and impenetrable. The most important by-product of this type of knowledge (as opposed to concrete treatment strategies) is that a sense of connectedness can be reestablished between parent and child that washes away guilt and does away with that sense of exile. So Janice and I started to talk about developing a treatment plan. Janice wanted to know what the problems were that should be addressed and what their relative priority was. What are the most important skills the child needs to learn in order to move on to the next stage of development? We agreed that Heather’s restricted diet and her refusal to have her hair brushed were surely important problems, but these could wait until after we had worked on her ability to go to grade school, as she would be expected to do soon. But to be successful at school, she needed first to show more interest in social interaction. Unless she valued that, she would not be able to pay attention to the teacher rather than to objects of her own peculiar interest. She would

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