PART ONE
Talking
CHAPTER 2 “That is not sound”
In 1961, when we first heard of autism, Jessy was three and a half. Our doctor had suspected something wrong at twenty-two months, but hospital examination could find nothing specific. That was not surprising; few were aware of autism then, even within the medical profession. Though Kanner had named it in 1943, and described it with uncanny accuracy, it remained little known, an obscure and rare disorder. Year after year the same figures were repeated: four in ten thousand, two in ten thousand — who knew, really? Who was counting such children? How many doctors were even able to recognize the condition, to distinguish it from all the other possibilities — retardation, aphasia, even, in the early years of a speechless child, deafness? Diagnosis was even more unlikely with children who were not speechless, whose intellectual development seemed to progress normally, yet who shared the characteristic social deficits and odd preoccupations of autism — children like Temple Grandin.
Today such people are more likely to be identified, perhaps as children, perhaps as adolescents or adults. Temple calls herself autistic, but increasingly people like her receive a less daunting diagnosis, Asperger’s syndrome, after Hans Asperger, who in Vienna in 1944, quite independently of Kanner, identified this high-functioning variant. Like other biologically based conditions, autism has fuzzy margins. Many parents today must try to make sense of a diagnosis of PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified, a convenient if uncommunicative label for a child who has a significant number of the symptoms of “classic” autism, but lacks others. (See Appendix II, the DSM IV definition.) Most specialists today would agree with the British psychiatrist Lorna Wing, herself a parent of an autistic daughter, that there is a “continuum of impairments,” an autistic spectrum.
The continuum ranges from the most profoundly physically and mentally retarded person, who has social impairment as one item among a multitude of problems, to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality…. Language, nonverbal communication, reading, writing, calculation, visuo-spatial skills, gross and fine motor-coordination… may be intact or delayed or abnormal to any degree of severity in socially impaired people. Any combination of skills and disabilities may be found and any level of overall intelligence. 1
No wonder the count is uncertain.
Nevertheless, within these variations there is a core, what Wing calls a “triad of impairments” — in social interaction, in communication, and in imaginative activity. 2 The American Psychiatric Association adds another: “restricted repetitive and stereotyped patterns of behavior, interests, and activities.” 3 Autism can now be recognized as a worldwide disorder; there are autism societies, mostly started by parents, in India, Thailand, Japan, in Australia, in Africa, in South America, all over Europe. And with better diagnosis, it appears that autism is not even particularly rare. Studies abroad suggest that the incidence of autistic spectrum disorders “may be three to five times higher than the rates found in studies conducted in the U.S. 15–20 years ago, as high as ten to twenty per ten thousand.” 4 A recent report from the U.S. Centers for Disease Control on autism in one New Jersey county finds evidence for an even higher figure: 4 per thousand for “strictly defined” autism, 6.7 per thousand when PDD-NOS and Asperger’s syndrome are included. 5 This is significantly higher than the incidence of Down syndrome, one of the commonest mental disabilities. It seems likely that every one of us has encountered someone with autism.
The count is uncertain; the future of each child is uncertain too. We have learned a lot since the early days when the Dutch psychiatrist Van Krevelen could describe autistic children as “alike as two raindrops.” Those who, like Jessy, have all the “classic” symptoms do indeed look much alike when they are very little; they are much less alike as they grow. Nor does the severity of their symptoms as toddlers necessarily predict where they will fall on the autistic continuum as adolescents and adults; some who, like Temple, have achieved advanced degrees started out very much like Jessy, and some who functioned much better as children have never been able to hold a job. Many autistic children never acquire useful language; some never learn to speak at all. Yet even these may still possess the “splinter skills,” the bewildering “islets of intelligence” that set autism apart from the conventional picture of retardation — may discriminate shapes and colors, as Jessy did, or astonish their parents by playing a melody on the family piano. Wherever they fall on the spectrum, however, they will be in need — of skilled teaching as children, and as adolescents and adults, of informed, continuing assistance in coping with social demands that grow more complex the more successfully they enter the normal world.
. . .
That’s enough. It’s not my intention to survey what’s known about autism. There are many people better qualified to do that; I’ve listed some of their books at the back of this one. It’s the experience of autism that I can write about — the initial bewilderment, and the slow growth of at least partial understanding. Indeed there is much to be learned from these strangers. They challenge us to perceive differently, think differently, feel differently, to stretch our imaginations to apprehend, even appreciate, an alternative world. Jessy’s journey has led her out of that world — I have called it Nirvana — into the uncertain world of human beings. For that to happen, we too had to travel, as best we could, into experience as foreign to us as ours was to her, learning different things, but learning them together. I would not want to guess who has profited more.
. . .
A description of autism must be anecdotal; without anecdotes there are words but not experience. Anecdotes must temper our yen for the miraculous, keep the account honest. Without them, Jessy’s slow progress takes on too much of the aura of the success story everybody wants to hear. Suppose I say what is entirely true: that she has worked, rapidly and efficiently, for twenty years in the mailroom of Williams College, Williamstown, Massachusetts; that she is hardly ever absent and never late; that she pays taxes; that she keeps her bank account accurately to the penny; that she’s saved more money than any of her siblings; that increasingly she keeps house for her aging parents. That I haven’t touched a vacuum cleaner in years. That she does the laundry, the ironing, some of the cooking, all of the baking. That she is a contributing member of her community and of her family. Who wouldn’t hear, behind those words, others: “miracle,” “recovery,” “cure”? Reality escapes between the lines. Anecdotes must recapture it, as many as I can cram into these pages, not for decoration or liveliness, but for truth.
In our kitchen — where we eat, talk, work, watch TV, where so many things happen — there is a folder filled with envelopes, and a pen kept handy. Inside the envelopes are bits of paper, slips I grab when Jessy does something, says something, that shows progress toward our world, demonstrates a new receptiveness, a new interest, a new understanding, or (the other side of the coin) that reveals how different her experience remains. A few years ago I felt the need of classification; hence the envelopes. Each is labeled with a category: Hypersensitivities; Obsessions; Compulsions (Order, Errors); Verbal; Social; Self-Awareness; Strangeness/Secret Life; Correlations/Analogies; Numbers. It’s an odd list, its oddness itself perhaps the best testimony to the oddness it’s trying to grasp with these categories that overlap, bleed into each other, provide their multiple takes on the same condition. Now, as I shuffle the slips, I feel them reconfiguring themselves, the fattest envelopes leading the way. I can see I really have only three main categories: Language (imagine, once she couldn’t talk, couldn’t understand), Social Understanding and Behavior (once there wasn’t any), and Strangeness. No one is independent of any other. Hypersensitivities and Obsessions and Compulsions affect Social Behavior, they intensify Strangeness. Jessy’s Analogies and Correlations are extremely Strange; so are her Numbers. He
r Language reflects it all. As in this anecdote — what happened the morning of October 7, 1973, when Jessy, fifteen years old, made herself eight pieces of bacon.
Why eight? I asked.
“Because of good.”
?
I transcribe from my notes. Though it would make for a neater narrative, I won’t reinvent the words of the question I didn’t record. My question mark, floating in blankness, is a truer rendition.
“Because Ann cough and burp too. (Pause) And silence is 8.
And between silence and sound is 7.”
How was Ann’s cough sounds and silence?
“Sounds and silence at the same time but not between.”
If Ann talked at the same time would that be sound?
“Only politeness is sound.”
She means “please,” “you’re welcome,” “thank you,” “excuse me”; for years she’s been sensitive to these phrases, doesn’t want to hear them, doesn’t want to say them. Hypersensitive. And we don’t know why. It’s Strange. The categories bleed into each other, like watercolors on wet paper.
And ordinary talk?
“That is not sound. (Pause) And the bell in camp is a sound and also a silence, and a sound between silence.”
The bleeding continues. The bell sounds three times, with intervals between — is that it? That bell was loud, but Jessy used to run upstairs from the soft click of the dishwasher, the low rumble when the thermostat tripped the furnace. Even today she covers her ears when she opens the refrigerator, in case the motor turns on. Auditory sensitivities are characteristic of autism. But the bacon-and-egg system, it’s clear, includes more than sound.
“Doing something fairly bad is only 3 and bad is 2 and very bad is 1!”
What if there’s a foghorn anddoing something bad?
“That is 2. (Pause) Doing something bad is the most! No wonder get egg.” (I begin to see; breakfast with only two pieces of bacon is incomplete and must be suitably supplemented.) “And you say a magic number is a sound too. And people scream out loud and shout and whistle is a sound too.”
What is a magic number?
“8 is a magic number. 6, 4, 3, 5, 2, 1 is a magic number.”
Not 7?
“And 7 too. (Pause) And all are, up to infinity. (Pause) If I have less than 6 and don’t have any bread have a small egg or some of these fruit instead of egg. Egg is only for less than 4.”
Now she goes into a graded system of substitutions for decreasing amounts of bacon. My mind is spinning, I don’t catch it all. I revert to the numbers:
Are all the numbers equally magic or some more magic?
“1 to 8 is very magic. If I have less than 5 and egg I have to cut that thin slices of toast. If I have less than 5 and no egg I have to make thick slices of toast.” And it goes on…
What envelope to put that in? A breakfast dialogue with a teenager; a plunge into the experience of autism.
It’s all there, in that single conversation. Idiosyncratic Language. Hypersensitivities. Compulsions. Correlations. Numbers. But perhaps most important is the simple Social fact: at fifteen, after so many years of effort — ours, her teachers’, her own — Jessy was really trying to communicate. Instead of ignoring my questions or fending them off with a convenient “I don’t know,” she was working hard to answer them. She had something she wanted to explain enough to propel her through the effort of putting words together. It was a matter of absorbing interest to her. She wanted to share it with another person. How normal, how ordinary — for an ordinary toddler, the toddler she never was.
And who but its creator could explain such a system? Bad — an emotional, perhaps even a moral category (but though normal toddlers continually say “bad cat,” “bad mama,” I realize now that I’ve never heard Jessy apply “bad” to a living being). Badness ordered into degrees, logically, numerically correlated to exact quantities of bacon, bread, fruit, to determine a breakfast menu. Strangeness suffusing the everyday.
. . .
There is no single entrance into the enveloping experience of autism. Jessy’s strange systems, here glimpsed, require a chapter to themselves. I will not start with them, though more than anything else they reveal the way she thinks, its unique amalgam of simplicity and complex logic. Yet though language is not the core of Jessy’s experience, it is only through language that her experience has — to some degree — become accessible to us. And it is only through language that our experience has become accessible to her — to some degree. So these opening chapters will focus on language, the gateway to a shared world.
. . .
I wrote the bacon-and-egg dialogue down as it happened, but it wasn’t until afterward that I realized how much was hidden within it. Jessy’s words had opened a window into the wordless long ago, lighting up what it was to be surrounded by sound, hearing it with preternatural sharpness, yet unable to give it human meaning. What counts as sound? As silence? Ordinary talk is not sound. Polite phrases are sounds — automatic, unchanging reflexes, almost meaningless. So are coughs and burps and bells and shouts and whistles. Jessy volunteered another example: “And animal noises just like a dog.” (I remembered a midnight three years earlier, when Jessy screamed and screamed and wouldn’t sleep because a dog was barking a mile away.) Jessy had defined meaningful speech out of existence. Talk all around her — we are a talkative family — understanding none of it; sounds for her were exactly what for us were mere noises. Sounds were simple, recognizable, intelligible, reliable, the same at every hearing. Only these penetrated Nirvana — emissaries, mostly unwelcome, out of the enveloping incomprehensibility. And silence is 8. Because of good. Silence makes no demands.
Certainly it was no longer like that on October 7, 1973. Now she was talking to me, understanding my questions, trying to answer them. But that was the way it had been. It was out of that bewilderment she had emerged. Emerged? Indeed. But her words themselves expressed how qualified was that emergence. Years had passed, years of daily effort, as her family, her teachers, and she herself concentrated on every means we could think of to enable and encourage speech. Five years before, her labored, garbled words had been scarcely intelligible outside her own family. Now any patient listener might understand them. Yet again and again, to even the patient listener, the common words of our common tongue resisted common sense.
What was going on? Certainly Jessy’s reality was not ours. Speech that communicated strangeness must inevitably be strange. But there was more to it than that. The ears that registered the softest, remotest click seemed unable to distinguish the essential sounds that make one word what it is and not another. The mind that grasped squares and square roots as if by instinct couldn’t seem to get the hang of how her native language worked.
“I looked at the clock by mistake,” she would say. Clearly it was important; Jessy would be shrieking, inconsolable by anything we could say or do. But “by mistake”? After years of bewilderment, one day it came to me: you can’t look at something by mistake. Looking is a deliberate act. But you can see something unexpectedly, and we’d long known how distressed Jessy was by the unexpected. Could that be what she meant? It was possible. Spoken, heard, both words contained the same hard “k” sound. I began to pay closer attention to those agonized “by mistakes,” testing my guess before I tried out what she thought of my translation, since it is all too easy to secure agreement from an autistic person who only partially comprehends your question and wishes you would go away. Jessy accepted the new word — more, over time it supplanted the bizarre original, to the point where one day she could exclaim, “I saw a star unexpectedly, I’m so sad!” She was twenty-five then, her vocabulary growing steadily in range and sophistication. Yet polysyllabic or seldom-heard words were still heard inaccurately and reproduced only approximately, as with a small child. Thirteen years later we would hear her remark, referring to something that might have happened but didn’t, “I said it ex post fracto.” Surprised, we laughed. She laughed too, then added, �
��I didn’t mean ‘ex post fracto,’ I meant ‘hypothetical.’” A confusion of sound? Of meaning? The natural result of habitual inattention to a still largely unintelligible surround? All three?
I found out what Jessy was up against when we spent a season in France. I had thought I knew — Jessy was eleven and we had been working on language since she was two. But I had to become a foreigner to feel it. I had far more French than Jessy had English. Yet I was awash in a sea of sound. When people spoke directly to me — not from a distance, not as part of a general conversation — when they spoke slowly, distinctly, in words I knew, about a subject with which I was familiar, I could get the gist of what they were saying. An hour of this and I was exhausted. And this was what Jessy experienced every day. No wonder she tuned out, didn’t, couldn’t, pay attention.
. . .
I should make clear that though some degree of communication impairment is characteristic of autism, Jessy’s speech is by no means typical. Most autistic people who do acquire useful speech eventually sound much like the rest of us. They may speak too loudly, or with less variation of tone, as might be expected of people who cannot gauge their effect on others, but their fluency, vocabulary, and syntax are generally on a level with their intelligence. I don’t know another autistic person who functions as well as Jessy who has to labor so to assemble her words into something like English, who still speaks her native tongue like a foreign language. Dr. Wing, who saw Jessy at twelve, was struck by the gap between her nonverbal competencies and her speech; she concluded that her autism was complicated by another handicap, aphasia, which affects the ability to acquire and use not only words but the syntactic structures, the deep grammar that is the armature of language. Though Jessy was five when she began to acquire a vocabulary of single words, it was years before she could put them together into a recognizable sentence. Even at fifteen it wasn’t easy: “No wonder get egg.” My account of Jessy’s language in The Siege was written when she was eight. Knowing it would be the longest in the book I called it “Towards Speech: A Long, Slow Chapter.” I couldn’t know then that I had chosen the word “towards” not for her childhood, but for her whole life.
Exiting Nirvana Page 3
