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 and their transformations, with the indefinite and definite article, with pronouns of all sorts, with prepositions, with indirect discourse.
And simple, familiar words may come out even more oddly than ex post fracto. Jessy was in her thirties when, in a thank- you letter for a birthday gift of sheets, she wrote, «I will wear them on my bed next week». Preoccupied with questions like «What’s next?» and «Who’s next?» (she doesn’t like them), one day she asked, «Is there such a thing as ‘How’s next’?» Another day: «You can say ‘What are you looking for’ and ‘Who are you looking for.’ Can you say ‘Where are you looking for’?» When Hans Asperger spoke of the «original and delightful» language of his child patients, he was thinking of locutions like these. Jessy’s speech difficulties may be intensified by aphasia. But I doubt that a person struggling with aphasia would ask such questions.
It is not only in such bizarre «originality» that autism and aphasia differ. The communication handicap in autism goes far beyond the production and interpretation of actual speech. Communication is a richly interactive process. Human beings communicate not only by words but by gesture, by posture, by facial expression, by «speaking looks» — by what we rightly call body language. Aphasia does not affect this kind of understanding; if an aphasic child is thirsty it will use hand and mouth to mime drinking from a cup. The autistic child will not do this. Nor will she look at you or make an interrogative sound. Rather, she will take your wrist and lead you to the refrigerator. Unable to read the silent indicators with which human beings communicate as surely and significantly as they do in words, Jessy was adrift in a far deeper sea. The following chapter will tell some of the linguistic instruments that have helped her navigate.
Chapter 3
«When the time comes»
January 1989. More than a decade ago. We’re going away for a few days; a friend will be looking in on the cat. Jessy tells him, «I will teach you to feed Daisy when the time comes». I compliment her; I have long ago internalized the principles of reinforcement. «How nicely you said that».
«I learned that from you», she says. Then, «What does that mean, ‘when the time comes’?»
I try explaining, give up, tell her she really knows because she said it right. And she does know, because right away she supplies her own paraphrase. «In the future», she says. With that to go on, I can elaborate: the time is indefinite, yet it will come. Five minutes later (she’s been worrying that we’ll run out of garlic, though we have several cloves) she remarks, «I will buy garlic when the time comes». Of such small triumphs is progress made. And seeing me writing down our exchange she notes: «You will file that under Verbal» — as of course I will.
What would we do without these conventional phrases? We’d do fine, we’re told; the studied avoidance of such convenient formulas cliches — has become a hallmark of good writing, speaking, thinking. But for her they are not merely what they are for us, easy shortcuts to familiar meanings. Spend time with Jessy — years and years, say — and you can see how they serve not only to ease speech but to organize experience, to identify it, to articulate its recurrent patterns; how they enable her to cope with it, even, to some degree, to understand it. I learned that from you.
Jessy returns to these cliches again and again. She likes them, she uses them. So anxious over uncertainty, indefiniteness, anything that escapes strict predictability, she welcomes, needs, this prefabricated language. It helps her pattern the inevitable fluidity of being in the world. Once it was patterns of action that steadied her, routines that she tried to keep as invariant as possible. She still has these, but now there are also patterns of words. We can’t be sure when we will go shopping, when we will leave for the summer, when a friend will arrive. I will hang loose. A kitchen knife is missing. „Things come and go“. It doesn’t erase the anxiety, but it can assuage it. And to someone obsessively concerned about small mistakes, it’s comforting to hear that there’s such a thing as a „margin of error“. If naming perfectionism can’t control it, it can at least bring it to consciousness, where it can be worked on. „No big deal“. „Nobody’s perfect“. She can repeat the words, though she’s still far from accepting the fact.
Perfectionists do not make mistakes. They do not forget things. Jessy will wail, „Oh, I forgot to — add the salt, empty the trash — though her „forgetting“ has lasted less than a minute. Eventually I thought of a mollifying trick of language. „Don’t say you forgot, say you almost forgot“. And today, after the usual I forgot, she herself, her voice now audibly relaxed, supplies the paraphrase that is the guarantee of understanding. She even puts a positive spin on it: „I just remembered“.
Phrases can express her relief: something happened „in the nick of time“. They can modify her impatience: „one step at a time“. They can structure the weather, though like so much else, the weather may resist; Jessy complained that the „January thaw“ was late this year. Language has power, not only to grasp but to order. This year Jessy picked up „downside“, applying it to overtime at work, distressing because it tends to be unexpected. It’s become second nature to reinforce a new idea. „Yes“, I say without thinking, „everyt
hing has a downside“. But Jessy is thinking. „And a compensation?“ I know how she got there; she’s generalized from our previous discussions (oh, so many!) of overtime, its compensation, of course, a bigger paycheck. Downside, compensation. How right, how proper that there should be this pair, maintaining the world in benign and orderly balance.
When her bird was mopey, her parakeet book supplied the needed reassurance, a chart of symptoms, serious and not so serious. Jessy loves charts; they too reduce an untidy world to order. The parakeet’s condition became identifiable, placed under a heading I wouldn’t have thought of; it was, it seemed, a Passing Indisposition. This has become an invaluable household concept, especially in the cold season.
Do these phrases also help her cope with the frustration of being unable to communicate? That’s plausible. But it’s surprising how little we see of such frustration. Jessy’s frustrated when she tries unsuccessfully to do things. But in talking? She seems unconscious of the effort her speaking costs her. Nor does she seem aware of any inadequacy in her language. She knows she took a long time to learn to talk; we’ve told her that. She has even suggested some ‘good reasons for not talking», among them «being a baby» and «being a dog». But being able to talk, or talk better, is not one of her concerns. Although she dislikes intensely the gentlest suggestion regarding her behavior — she’ll respond with a furious «Why do you correct me?» — she doesn’t mind, she may even laugh, when we correct a tense or suggest she rethink her choice of pronoun. Her cliches help her express herself, but their real advantage is far more fundamental. They help her give structure to chaos.
Does that sound a bit too existential? Perhaps it wouldn’t if we could remember what it was to live amid unintelligibility. But though we were all babies once, it wasn't for long. For Jessy that unintelligibility has lasted and lasted. How much even now does she understand? She needs the reassurance of words that can order her world. For years she could do no more than scream at its stubborn deviations. Screams might, though in the absence of language they mostly did not, reestablish the routines that structured the surrounding flux. Kanner’s primary marker of autism was an overwhelming desire for the preservation of sameness. That was Jessy’s desire — that Nirvana should remain inviolate, an island safe from change. She knows now that this is impossible. But words are available now, preassembled, replicable, reliable. Like maps, like charts, like calendars, like schedules, all of which she read easily before she could read texts, they allow her to lay hold of her experience, bring it under the mind’s control.
But they can do more than that. By their very conventionality they can enable her to relate her experience to the experience of others. «That the way it goes», she’ll say. Be reassured: there are patterns in experience. There are word patterns to correspond. By them Jessy begins to navigate, not only in space and time («Things out of place bother me», she says), but in the mysterious world of human beings.
«When I work late I say to myself, ‘An ounce of prevention is worth a pound of cure.’» It comes from Jessy so naturally it startles me. Certainly she’s heard me say it. Though I don’t much like cliches, I do like proverbs — reservoirs of social experience, rich encapsulations of generations of social wisdom, too easily forgotten these days, wisdom and words together. But in this case the applicability of this proverb isn’t obvious. Testing her, I ask: «What’s the prevention? What’s the cure?» And she answers that working late prevents the backup of work in the mailroom. She has not only understood the proverb, she has generalized it to a new situation. Better yet, she is consciously using it to control her overtime anxiety. Of course I write it down. But should it go under Social or Verbal?
Social behavior and speech are linked inextricably. Jessy got interested in proverbs in her midtwenties, when she began to reach out for more ways of understanding the world. Literal- minded like all autistic people, she began to pay close attention to these figurative expressions. «A stitch in time saves nine» made literal sense when she was mending her sweater; it was easy to stretch it to cover other household repairs. Other proverbs were more metaphorical, yet she wrestled them into meaning, recognizing in them the ordering power of language. Proverbs are reassuring for someone who worries obsessively whether the weather will be fair or where my glasses are. More for my satisfaction than hers, I quoted my grandmother to her: «Sufficient unto the day is the evil thereof». I didn’t expect her to listen, but she heard it, all right: «Day is sufficient until evil come out». It had surpassed her verbal powers but not her comprehension, for she not only explained it as «Don’t worry too soon», but herself supplied the equivalent «Don’t borrow trouble» and «Don’t cross the bridge until you come to it». She had to work with that one: «Does it mean go over that bridge or go under?» But she got the meaning; when the cat was gone all day («Lost, oh lost!») and came back at midnight: «Unnecessary sadness! And there wasn’t any bridge!» Three months later, the weatherman predicted sunshine but clouds threatened. Jessy began to obsess, then checked herself. «It would be crossing the bridge too early — I would fall in the water».
They are useful, these idioms; they have become idioms because they speak to the human condition. No use crying over spilt milk. Getting off on the wrong foot. Getting up on the wrong side of the bed. So, of the dinner invitation I almost forgot: «If you forgot, then remembered in the middle of the night, then you would get out of the wrong side of the bed in the morning». Yet the application isn’t always easy. «Tracy got out of the wrong side of the bed because her father was in a bad accident». You don’t say that. Verbal patterns help, but they can’t cure.
Still, they help a lot. Waiting is very difficult for Jessy, whether it is for a month or a minute. Is it because predictability, the trustworthiness of the environment, is threatened? Is it because Jessy, so accurate with clocks and calendars, can’t gauge her experience of subjective time? I don’t know, but waiting, at work or at home, is a continual problem. All the more welcome, then, what Jessy’s made of my grandmother’s «All things come to him who waits». They mostly do, and Jessy crows exultantly her own version: «Things come to me when I wait!» It makes it, I think, and Jessy thinks, just a little easier to wait next time.
* * *
Jessy is not only reassured by these linguistic patterns, she enjoys them. I don’t think it’s a coincidence that it was in the same years she began to use proverbs that she made her first verbal jokes. She has grown up in a joking household; that, I think, has made her less solemn than most of the autistic adults I’ve met. I remember her father, long before she could talk, laying her down on the kitchen floor, saying «Night-night», covering her with a newspaper and giving her some kitchen object to hold as her talisman blanket, teaching her to enjoy the discrepancy between reality and pretend. We thought then that we were teaching the actual difference between the two, but I know now it was the enjoyment that mattered. Even as a tiny child, Jessy never confused the imaginary and the real. Like most autistic people, she operates in the realm of the visible, the tangible, the literally true. What we were teaching was that perceiving the difference between what was true and what wasn’t could be fun. I treasure the memory of her first joke, when she lugged over a snow toy, a «flying saucer» almost as big as she was, offered it to a guest as an ashtray, and laughed.
Still, it took many, many more years before Jessy was at home enough in language to make a joke in words. At first it was hard to tell if they were really jokes, as when, seeing me about to sneeze, she said she’d read, not my mind (we’d talked about that) but my nose. But we laughed, and she did too, clearly enjoying the unexpected thing she’d done with words. Word play became more frequent. Though our cat’s name was Daisy, we often called her «Kitty dear», and Jessy echoed us. One day she saw a daisy in a field and addressed it as «Kitty dear». A simple (mis)association of ideas? A prepun? She laughed, at any rate, and that made it a joke. She was ready for puns; she learned the word at once. «Two days ago I saw somebody c
ut hair in the mailroom — ‘just a hair.’ That is a pun!» And it was; she’d remembered her father’s way of saying «just a little bit».
The pun, I was told as a child, is the lowest form of humor, and hers are very simple. «Cold pills is pills that are out in the cold!» «The microbus is the bus with microbes in it!» But this one shows real observation. «Eclipse Rum» — the label caught her eye, at a time when she resonated to anything about eclipses. «Eclipse can eclipse the pain and eclipse the insomnia. That is a pun».
Indeed, and more than a pun. It is a step beyond the literal, into further, richer dimensions of language. No giant step, however; Jessy doesn’t take giant steps. Twelve years have passed since then. Eclipses have lost their fascination; these days it’s anything to do with Merrill Lynch. So we read from the morning paper: the company is downsizing. «A certain number of people are going to be cut». «Cut?!!» The astonishment in her voice makes it plain: the autistic literalism survives. They are to be mastered one by one, the slippery ways of words.
Exiting Nirvana e-2 Page 4
