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A Daughter's Life with Autism
by Clara Claiborne Park
For Jessy was happy, happy circling, happy sifting, happy dividing. Her happiness was not occasional or accidental, it was characteristic of her condition, as characteristic, as needful to acknowledge, as the eerie banshee shrieks and wails that the books call tantruming, but which no parent of a normal toddler would confuse with the familiar noise of a child who's not getting what it wants. This was not anger or frustration, this was desolation, a desolation as private, as enveloping, as her happiness.
What precipitated it? The causes were as inexplicable as the causes of her delight. Perhaps her milk was served in a glass instead of her silver cup, or offered after the meal instead of before. Perhaps she couldn't find a particular square --she could identify it --among those thousands of bits of paper. Perhaps one of the six washcloths in the family bathroom was missing, or three, or two; she knew how many, though she had no words for number. Speechless, she gave no clue. Even when she began to put words together, years later, we were no nearer understanding. It was, we could be sure, never anything that would make another child shriek, it was always trivial, what normal people would call trivial --trivial in everything but its effect on Jessy. How long would the sounds continue? Ten minutes (if we could guess the cause and rectify it), half an hour, one hour, two? By the time she was twelve or thirteen she could tell us. But what good did it do to know that a lighted window had disrupted the darkness of the building across the street, that a cloud had covered the moon, that she had accidentally caught sight of Sirius, that she had been waylaid on the street by a manhole cover bearing the word "water"? "Water," it turned out, was "fluffy in the middle." Ten years later she was happy to explain: "At least two small letters on each side, but even. With one tall letter. Bothered me to see it for about two weeks and then went away and bothered me to hear it for I think about a semester and then went away." Why did it bother her? "Combination of fluffy in the middle and liquid and part of the car. In the radiator. Only bad if a combination of three. That called the forbidden combination." All clear now?
But it was not such distress that defined her. It came, it passed, it was over, its transitoriness as mysterious as its intensity. Next day it could become a subject of cheerful conversation --next day, or ten years later. "No wonder I cried!" she'll say, her voice alive with her characteristic rising, positive, happy intonation.
She is happy still. I can't think of another woman in her forties who is more content with who she is, less likely to question how she lives or what she does. Though she no longer circles a spot or snakes a chain up and down, she still has her sources of strange, private pleasure. Things once bad may even become good, as has happened with fluffy-in-the-middle words. Last year she was delighted to find "nuclear" and "nucleus" to add to a list including "radio," "valve," "molar" ("I saw that on June '91"), and "unwelcome." And now, "remembrance."
It is, however, far more important that over the years such mysterious pleasures --and pains --have been joined by others more "normal," more recognizable to other human beings, more connected to other human beings, as she has learned, slowly and imperfectly, to function not only beside them but with them, in a shared world. That is her achievement, made possible (like all the achievements of profoundly handicapped people) by the work and support of many others --young people who lived with us and became wise and resourceful therapists; patient teachers; accepting, helpful people in her workplace and her community. And always, first and last, her family --ourselves, her mother and father, with whom she still lives, and her sisters and brother. That is what this forty-year journey has been about.
Copyright © 2001 by Clara Claiborne Park
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