A Daughter's Life with Autism : Part 3

Exiting Nirvana
by Clara Claiborne Park

(Page 3 of 4)

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.

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.