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A Daughter's Life with Autism
by Clara Claiborne Park
What's an obsession in psychiatry becomes in art the exploration of a theme. We encourage her to paint these sources of delight. They make her painting not a task but a pleasure, and infuse it with the surreality of her secret world. Though people buy her paintings, there's one she hasn't wanted to sell. It's up in her room, a rendition, in lovely pastels, of the two best things in all of New York City, marvelously come together in the atrium of the World Financial Center: the Merrill Lynch bull and the logo of Godiva chocolates. Though her own script is that of an unusually neat third-grader, the elegant lettering is perfectly reproduced, with her unerring hand and eye. Godiva, Merrill Lynch. The very words make her smile.
We encourage her obsessions in paintings, but we must limit them in daily life. Fascinated at first, people can enjoy just so much conversation about fees, and they may actively object if Jessy scrutinizes their bank statements. We have made sacrifices for the precious ordinariness of habilitation. Would Jessy's mathematical obsession, properly nurtured, have made her into a computer whiz? I doubt it. Her calculations led nowhere; she was interested in doing them, repeating them, contemplating them, not in using them. Her math is now limited to her bank book and her tax forms, her division of the weekly grocery bill, her unerring memory for the mailbox numbers of students who graduated years ago. Numbers, once so absorbing, have gone to join her spot. So have the "little imitation people." (Long ago, when we looked at the illustrated Gulliver's Travels, "Lilliputian" must have sounded like that to her.) Once they peopled the appliances, a family in each. Yet are they really gone? I ask her today: Are they still around, perhaps in the office computer? She says they are, but she won't talk about them as she used to. And she's smiling her secret smile.
Everybody likes to be astonished. Astonishing abilities and strange preoccupations have become part of the lore of autism, though many autistic people do not have them. "Savant skills" they're called today, our kindly vocabulary of sensitivity having jettisoned the old term "idiot savant." But "savant" has a hollow ring to the parents of a child to whom algebraic processes make more sense than the social interactions of Dick, Jane, and Sally. The challenges of daily life are less interesting to read about, and much more important. Jessy had to learn, if she could, to listen, to speak, to understand, even to read and write, all of those being part of daily life in the twentieth century. In time she did, as she learned to feed herself, to dress herself, to use the toilet, to make her bed, to perform useful tasks about the house. I do not write "make herself useful": to do that you have to perceive the desires and emotions of others, and the achievement of joint attention was not enough to call that skill into being. But concrete skills were not difficult to acquire once she learned to imitate. The much-maligned techniques of behavior modification --rewards and more rarely penalties --eventually provided her adequate motivation. Characteristically, the reinforcers were not food or praise but numbers, a rising tally on a golf counter. Every new skill made life easier for us and richer for her, as her repertoire of activities expanded.
But the most important skills are social. Jessy's social understanding remained, and remains, radically incomplete. Such simple lessons. "We can't ask them to move because they were there first." The difference between irritation and hurt feelings. Making sense of people, "grasping the general significance of situations." What the autistic adult, like the autistic child, finds hardest of all.
What is it like to have a mind that picks "remembrance" out of the newspaper yet must struggle to comprehend the most ordinary vocabulary of social experience? What is it like to have to learn the myriad rules of human interaction by rote, one by one? By rote, because the criterion of "how would I feel if " is unavailable, since so much of what pleases (or distresses) her does not please others, and so little of what pleases (or distresses) others pleases her. Jessy cannot tell us. Temple Grandin, who emerged from autism to become a professor of animal science at Colorado State University, can articulate concepts unavailable to Jessy; she says being autistic is like being an anthropologist on Mars. Autism, like other biological conditions, comes in varying degrees of severity; Temple's journey has taken her farther than Jessy's ever will. In the course of it she has recognized the necessity of learning to live like the natives. The truest learning is reciprocal: the natives too have a lot to learn.
Copyright © 2001 by Clara Claiborne Park
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