Exiting Nirvana: A Daughter's Life with Autism

Introductory

How to begin? In bewilderment, I think —that's the truest way. That's where we began, all those years ago. That's where everyone begins who has to do with autistic children. And even now, when my daughter is past forty...

This morning, at breakfast, Jessy reports an exciting discovery. It's a word. She doesn't say it quite clearly, but it's recognizable: "remembrance." "A new fluffy-in-the-middle! Found in the newspaper! It is fluffy in the middle!" Her voice is triumphant, her face is alight. "I saw one! With five on each side!" Leave that unexplained, in all its strangeness. For now. Shift to something less bizarre. Somewhat less bizarre.

Jessy is painting a church. Her acrylics are neatly arranged on the table beside her. With her sable brush and steady hand she has rendered every brick, every curlicue of the Corinthian capital, every nick and breakage in the old stone, accurately, realistically, recognizably. Except that the capital is a vivid, penetrating, astonishing green. The elaborate details of the stonework are picked out in shade upon shade of rose and violet and turquoise and ultramarine and yellow and green, a different green. The tower thrusts upward into azure sky. Into the blue (five shades, she tells me) she's introduced three zigzags, one above another, exactly parallel, zig for zag. Lightning, she says. She's painted lightning before, realistically, recognizably, working from photographs, since lightning, unlike a church, doesn't hold still for her to sketch it. But no one ever photographed lightning like this, so neatly angular, so controlled. "I invented it!" Happily she explains: it's what she sees when she has one of her brief migraine episodes. Migraine can be painless; Jessy is quite comfortable with hers. She points out that the zigzags too are colored: "Very pale mint, lavender, and yellow."

Very pale; to me they all look white. Only a scrutiny as sharp as Jessy's would notice a difference between them. Only a mind as free of conventional perceptions would make lightning out of a migraine illusion, or convert the dramatic disorder of nature into this orderly vision, or transfigure a deteriorating church with colors beyond the rainbow. Bizarre becomes original in the language of art, becomes surreal.

But Jessy's life, and life with Jessy, is not all strangeness. Indeed, it is less strange every year, more ordinary, more like other people's lives. We work, we shop, we do errands. So consider this recent incident, at the little post office on the island where we spend our summers. The parking lot is full. I'll park at the curb and rush inside while she waits in the car.

She doesn't like that. "We could ask someone to move so we can park," she says.

"We can't do that," I tell her.

She confirms this. "We can't ask them because they were there first." She was just hoping; she really does know the rule. She learned it years ago, when she asked some people to move from her favorite table and had to leave the restaurant. Now I counter-sink the lesson: "How would you feel if someone asked us to move so they could park?"

"Hurt my feelings."

Still, evidently, more work to be done. "No, it wouldn't hurt your feelings. Feelings get hurt when somebody does something or says something and you think they don't like you. Or criticize you." (This is getting complicated.) "It's not when they do something you don't like; then you get irritated, or angry. That's different."

That was a year ago. This week, at the supermarket, the lesson resurfaces. Near the checkout, I've met a friend; we get talking. Too long, thinks Jessy; the shopping's done, time to go. She waits a minute, two, then pushes our friend's cart with an abruptness just on the edge of aggression. She's caught herself, but she knows she's been rude. Later, as we talk it over, she plugs in the familiar, all-purpose phrase: "Hurt his feelings." Has there been any progress at all?

I begin to correct her. But she anticipates me. "Not hurt his feelings, irritated!" She remembered! This is the first time she's ever made the distinction. Except, except... except that he wasn't irritated. He's known Jessy from childhood, and makes allowances. How to explain that and still convey the necessity of self-control? Words, feelings, contexts, human meanings. We'll be working on these for years to come.

Forty years. The middle of the journey. The middle of her journey; nearer the end of mine. But I had better begin nearer the beginning, where I began thirty-four years ago, when I first realized there was a story to tell.

We start with an image —a tiny, golden child on hands and knees, circling round and round a spot on the floor in mysterious, self-absorbed delight. She does not look up, though she is smiling and laughing; she does not call our attention to the mysterious object of her pleasure. She does not see us at all. She and the spot are all there is, and though she is eighteen months old, an age for touching, tasting, pointing, pushing, exploring, she is doing none of these. She does not walk, or crawl up stairs, or pull herself to her feet to reach for objects. She doesn't want any objects. Instead, she circles her spot. Or she sits, a long chain in her hand, snaking it up and down, up and down, watching it coil and uncoil, for twenty minutes, half an hour, longer...

It was like that; that was when we began to know.

To know what? Today, any reasonably savvy pediatrician would know what, would recognize autism when she saw it in as pure a form as this. Autism is when your two-year-old looks straight through you to the wall behind —you, her mother, her father, sister, brother, or anybody else. You are a pane of glass. Or you are her own personal extension, your hand a tool she uses to get the cookie she will not reach for herself. Autism is when your three-year- old sorts her blocks by shape and color so you can't think she's retarded. Autism is when your eight-year-old fills a carton with three-quarter-inch squares of cut-up paper to sift between her fingers for twenty minutes, half an hour, longer. Autism is when your eleven-year-old fills sheet after sheet with division, division by 3, by 7, 11, 13, 17, 19....But that's enough, there are many books about autism now, anyone can read the symptoms. I need the image for what the symptoms don't convey: this child was happy. Is it not happiness to want nothing but what you have? Craving, the Buddha taught, is the source of all suffering, detachment the road to the serene equilibrium of Nirvana.

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.

When Jessy was small there were no real explanations for the condition Leo Kanner, the noted child psychiatrist, had identified in 1943 and called Early Infantile Autism. He had observed and described those eerily detached children; he had thought that such a profound inability to relate to others was probably "innate."

But he had also speculated in a different direction; the phrase "refrigerator parents" was also his. Twenty-five years later, before the newly formed National Society for Autistic Children (now Autism Society of America), he would repudiate this explanation in words none of us who heard him would ever forget: "Herewith I especially acquit you people as parents." But though he called The Empty Fortress "the empty book," the ghost of parental responsibility was not so easily laid to rest. Nor was there as yet research to offer convincing support for alternative hypotheses.

In the more than thirty years since then, evidence has accumulated for more merciful —and realistic —explanations. Suppose an impairment in what we now call information processing. A new baby is flooded with information —what William James called a "buzzing, blooming confusion" of light, shadow, color, sound, constantly changing. And if this baby's brain is not ready to do what other babies do so naturally that we don't even think about it, to make sense of that confusion of sense impressions, to resolve it into what it can recognize as faces, voices, which experience can render familiar and welcome? What then? Suppose she cannot do what other babies do instinctively, understand the changing expressions on those faces, the tones of those voices. Might she not prefer the security of a world she could make sense of, a world that didn't change, or changed predictably —a world not of faces, not of voices, certainly not of words, but of spots on the floor and snaking chains? Of clear, unchanging, identifiable shapes and colors? And when that secure order was disrupted, might she not be desolate?

Supplement this with another conceptualization. When the anthropologist Clifford Geertz summarizes "the critical features of human thinking," he does not jump forward to what we might be expecting: sequencing of events, perception of cause and effect, induction and deduction. What he lists is far more fundamental: "joint attention with others to objects and actions, attribution of beliefs, desires, and emotions to others, grasping the general significance of situations." Shall we call this, with the British specialist Uta Frith, a "theory of mind"? It seems too grand a phrase to describe what little tiny average babies, as soon as they are born, get busy developing. Yet these are the skills, this is the natural human knowledge without which the social world, that interwoven tissue of meanings into which every baby is plunged, is unintelligible.

These conceptualizations were not available when Jessy circled her spot; now we see how well they explain the challenges she, and we, lived with. For overwhelmingly these challenges were social. As she grew, we were to discover how little trouble Jessy had with sequencing, cause and effect, induction and deduction. But "joint attention"? It is such a simple thing. A mother and a baby look at a picture book together. The mother points; soon the baby will too. Or they play clap hands or peekaboo; mother and baby laugh. Yet learning cannot take place without these "critical features of human thinking." We learn by imitation; imitation is a social act. It does not occur in Nirvana, where there is neither need nor opportunity for joint attention.

By the time Jessy was six and seven she could put two or three words together; she heard, even understood a little of what we said to her. How could we teach her to understand more, speak more intelligibly? Further, how could we motivate her to do the simple activities it became clear she was capable of doing? She could count, even subtract; the washcloth anxiety proved that.

She could notice the slightest deviation from a pattern. Clearly she could set the table. But why should she? To imitate her sisters? To please her mother? Such natural, social motivators are meaningless without "attribution of beliefs, desires, and emotions to others," without a "theory of mind." At two and a half she had drawn a closed circle, an X, even, astonishingly, a J. Once; six months later she wouldn't even pick up a crayon. Why should she? Why should anybody do anything? She could distinguish the most subtle shades of color; she did not utter her first adjectives until six, but when they came they were not the common-place "bad" or "nice," laden with social value. Rather (of two VW's side by side) she chirped, cheerfully, positively, correctly, "Peacock BLUE car, peacock GREEN car!" Yet later, after I had lured her back into drawing, she would take the first crayon available. Yellow on white? Why not? She drew for her own purposes, not to be visible to others. Sometimes she would even cut up what she had drawn, to join the other three-quarter-inch squares in her sifting carton.

Colors were easy. Numbers, even arithmetical processes, were easy. They were there in her head already, waiting for names. The year she turned nine we sat together as I filled sheet after sheet with rows of renditions of valentine heart-candies, things she knew and liked. They could be counted, grouped in twos, threes...fives...nines...which could themselves be grouped: three groups of nine heart-candies clearly made twenty-seven. Or I drew circles and divided them into halves, thirds, fourths, fifths —fractions! Or I added pentagons and hexagons to the triangles and squares she'd recognized before she was three. With her still rudimentary speech she asked for the series to continue: "Seven sides? Eight sides?" Heptagon, octagon, dodecagon — she learned those words as soon as I spoke them. We could share attention when I entered her world, an abstract world of order, repetition, all that represented intelligibility, security, in the bewilderment of talk she could not understand, body language she could not read, social clues she could not interpret. Two years later she would spend hour upon hour in solitary, not to say compulsive, multiplying and dividing. We watched her cover sheet after sheet with divisions by 7, 11, 13, 17, 19, identifying primes and prime factors, happy in a world of number.

Jessy still retains her capacity for autistic delight. What makes her happy today? Once she'd exult over her discovery that "70003 is a prime!" Then numbers became what she calls "too good," so good that she would speak them only in whispers, or refuse to say them at all. Then her interest subsided; other things evoked her secret smile. Stars. Rainbows. Clouds. Weather phenomena. Quartz heaters. Odometers. Streetlamps. A strange procession of obsessions, for a year or two eliciting an intensity of emotion approaching ecstasy, then subsiding into mere pleasure. Wordless once, now a word, a phrase, could thrill her. "Asteroid explosion," "digital fluorescent number change." Recently it's anything to do with banks, checks, above all, fees. "There's a fee in feeling! And feet!" We know that special smile, that faraway gaze. But don't, don't ask her, "Why are you smiling?" The phrase itself (and there are others) invites desolation, the banshee wail; we don't know why. Was she punished at school for daydreaming? Does she resent the invasion of her secret world? She won't say. Could she if she would?

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
Excerpt posted with permission from http://www.twbookmark.com

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