A Daughter's Life with Autism : Part 2

Exiting Nirvana
by Clara Claiborne Park

(Page 2 of 4)

But Nirvana at eighteen months? That's too soon.

Yet I must start with that happiness, if only because, in those bad years, it was so thoroughly denied. Only in a few psychoanalytic backwaters is it still believed that the autistic child, like the so-called zombies of the concentration camps, is withdrawing from unbearable agony. This now discredited notion was once widely accepted, thanks to the journalistic skills of Bruno Bettelheim. "Autistic children...fear constantly for their lives," he wrote. "The precipitating factor in infantile autism is the parent's wish that his child should not exist." His? The sentence comes from a section headed "The Mother in Infantile Autism." I could quote more, but I won't. It is painful to return to the book Bettelheim, with his gift for metaphor, called The Empty Fortress — and thank God and the rules of evidence, it has become unnecessary. Autism is now almost universally recognized as a developmental disorder, multiply caused: genetic predisposition, pre- or postnatal viral infection, chromosomal damage, biological agents still unknown. Magnetic resonance imaging shows brain anomalies. So do autopsies. The research goes on. Every bit of it, however little it can as yet contribute to our own child's habilitation — unlike Bettelheim, we do not speak of cure — buries deeper the injustice of that terrible accusation.

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.

It has not been about a miraculous recovery, though selective narration could give that illusion. It has not been about happiness either; in very real ways it has been about its opposite. It has been about growth, and there is no growth in Nirvana. The world we share, the only world we had to offer that wordless baby, is our common world of risk, frustration, loss, of unfulfilled desire as well as of activity and love. We could not leave Jessy to her empty serenity. We would not, as was often recommended in those days, institutionalize her "for the sake of the other children," to spend her days somewhere in a back ward, rocking. We would keep her with us, entice, intrude, enter where we were not wanted or needed.

It was like assaulting a walled city. I called my book about it The Siege, choosing the title two years before I'd ever heard of an empty fortress. The metaphor is that strong. Four years, five years, six years — we did get into the walled city. But of course when she began to look at us, to recognize us, to need us — even, in her way, to love us — this was no goal achieved but only a beginning. The siege metaphor became transmuted into a more ordinary one. Siege into journey.

Copyright © 2001 by Clara Claiborne Park

About the Author

Clara Claiborne Park is the author of several books, including The Siege: A Family's Journey into the World of an Autistic Child, and is a prominent speaker about autism. She won the 1999 American Society of Magazine Editors Award for Feature Writing for her American Scholar article "Exiting Nirvana." She recently retired from the English Department at Williams College and lives in Williamstown, Massachusetts.