«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 facto». 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.
Much in that chapter still holds. I will not repeat it here; there is too much else to be told. Those with a particular interest in speech development may refer to those pages. Rather than linger on the details of that long, slow process — its steady achievements and its continuing limitations — I will let the anecdotes speak, those I’ve transcribed already and those to come. «A new fluffy-in-the-middle! Found in the newspaper!» What normal four- year-old wouldn’t say «I found it»? «If I don’t have any bread have a small egg». It wasn’t the printer who dropped out «I will». Those who speak pidgin know it makes talking easier not to deal with the pronouns and auxiliary verbs, especially when your mind is struggling with what you’re trying to say. «And people scream out loud and shout and whistle is a sound». The meaning is clear, but the grammar isn’t. Jessy has all the foreigner’s trouble with verbs
