3 weeks ago



Heather 23 not be able

Heather 23 not be able to learn more about the world and other people. And the best place to start in building a positive social relationship was to improve things between mother and daughter. While we waited for extra help at school, we decided to put aside discussion of concrete treatment strategies for the moment and focused on understanding what made Heather think, act, and feel the way she did. It was a matter of entering Heather’s mind and seeing the world as she did. This is a form of understanding that is harder to achieve than knowledge of concrete steps in a treatment plan. It is a more emotional, empathic, and intuitive form of understanding, but it still depends on what we know about ASD and how the process of impairments in social reciprocity and in perception derail development. With this understanding, parents can begin to develop a social relationship with their son or daughter, and this in turn leads to the slow resolution of grief and guilt that all parents experience once the diagnosis is given. Understanding of this sort leads to an acceptance of the predicament without resignation, a sense of hard-won repose. Janice watched her daughter carefully and tried to see the world as Heather did. She imagined how certain textures must feel if their intensity were magnified tenfold. She stared at the patterns in the rug on her living room floor and was amazed at the intricate designs created by the play of light and shadow as the sun moved across the window pane. She started to carry around a shiny stone in her hands, almost like a talisman against anxiety (a bathing suit would surely be going too far, she assured me). Janice wondered what it was like to have a different sensory threshold. She tried to imagine having her hair brushed as if someone were pulling a set of nails through her scalp. She learned to hear how sounds that she used to be able to tolerate without difficulty, like vacuum cleaners or the alarm clock, could send Heather into a panic. She began to see how time spent alone, by oneself, was not so bad—it gave one time to pay attention to the patterns of things. Like Stephen’s parents, she began to see the charm in her daughter’s interests. But beyond that, this understanding gave Janice a deeper appreciation for the communication signals that Heather did send. She became acutely aware that Heather did communicate, although it was atypical and not always received without distortion. With this dawning awareness, Janice began to realize that Heather’s behavior was not so much that of a stranger or an alien who happened to live in the same apartment, but the behavior of just another child, whose world revolved

24 A MIND APART around a different axis and who experienced the world according to a different set of parameters and fixed points. The confusion in her mind began to recede and with it the guilt and the sense of failure as a parent. Once that was resolved, it was so much easier to develop a positive relationship with Heather. Slowly but surely, their time together was more interactive, meaningful, and productive. With that imaginative leap on Janice’s part, they soon learned to play with each other: to line up the figurines together and play dress-up, first with the bathing suits but then with Grandma’s old clothes. Janice learned to play at Heather’s level, rather than expect her to play like other typical children and be disappointed in her failure to do so. She gave up trying to change Heather right away but concentrated on trying to understand her, to be sensitive to the behaviors that signaled a communication. As a result, Heather became more affectionate and would communicate to a greater degree her happiness and joy in the world of perception but also her distress at social interactions that had gone awry. This was a long process and was soon supplemented with the concrete strategies that are available to build skills and reduce challenging behaviors, some of which are described in Chapter 10. These two forms of understanding must go hand in hand if family life is to be reestablished and if the child’s development is to get back on track. * * * Heather is still not “normal,” to be sure. She continues to carry a bathing suit draped across her arm. If the conversation with her friends does not involve Pokemon, she quickly loses interest and drifts away. But the frequency of interactions with other children and her interest in being with them has increased. She is paying attention to the teachers at school and learning to read, write, and do math. The frantic and recriminating phone calls asking Janice to take her home have ceased. If she continues to improve at this rate, her prospects for the future are bright indeed. By understanding her inner world, Janice was able to communicate more effectively with Heather and build a better relationship with her daughter. She was able to find a path to lead Heather toward the world of other people. But the journey changed Janice as well. She came to see that Heather’s world had its own attractions and that these could (and should) be valued by others. Her daughter was unique, and such uniqueness was a gift. Heather had many special skills and talents that

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