Last month I went to the Stop and Shop without my discount card. I knew my lapse would become a subject of conversation; Jessy is intolerant of other people’s forgetting as well as her own, and she is particularly interested in supermarket cards. She scrutinized the sales slip; she determined that the card would have saved two dollars and forty-five cents. She talked about it, talked about it, talked some more.. And then, to my surprise, she disposed of it with a relaxed «Oh well, it’s only money». I never taught her that! But it’s there and will be there again (and again) — when the time comes.
Chapter 4
«Guess what!»
That was another long, slow chapter. This one will be shorter, since it deals not so much with what Jessy says, or the words in which she says it, but with something harder to convey: how she sounds. We encounter people through their voices. Sound shades into meaning: all sorts of messages reach us through these tones that can express everything from desolation to ecstasy. They too are aspects of Jessy’s language, deeply, intimately part of who she is.
You don’t have to hear Jessy say more than a few words to know that you’re not talking to a normal person. Quite apart from her stereotypic phrases or her telegraphic speech or the strangeness of what she may say, she sounds different. The difference is familiar to everyone who works with autistic children. Lorna Wing speaks of their «monotonous or peculiar vocal intonation»; developmental psychologist Bryna Siegel notes their «atypical tone of voice», «flat, atonal», «unmodulated», «consistently ‘off’ in some way»; an atypical prosody, to use the technical term[16], I prosody that like Jessy’s may continue into adulthood.
Face to face, over the phone, at a distance, Jessy’s voice is instantly recognizable. Though her repertoire of tones is characteristically limited, it is very much her own. «Guess what! 70003 is a prime!» Already exclamation points pepper these pages, typography’s pale attempt to capture the confident, positive voice in which Jessy, who was once thought to suffer from «early ego failure», announces her discovery. «Guess what! Every galaxy has lots of sun families! Know why I say that? Pretend the sun is the parent and the planets are the children and the earth is me!»
Those examples are from years ago, relics of outworn enthusiasms, but «Guess what!» is still Jessy’s trademark. More often these days it registers not actual discovery (and certainly not a genuine invitation to guess), but something subtler — a kind of satisfaction in assertion, in factuality, definiteness, in something noticed, verbalized, properly pinned down: the fee in feet. It’s the happiest of what we’ve come to call her openers, the start-up phrases she uses, needs, to propel her into the enterprise of speech. Some of these are brief and commonplace: a protracted «well perhaps, a „but“ or „and“. Listen, however, and you realize they don’t work like other people’s ands and buts. „And“ doesn’t announce an addition; „but“ doesn’t introduce a qualification or contrast. „Because“, a very frequent opener, heralds no assertion of causality, though Jessy understands cause and effect very well. It’s just another word from the start-up grab bag, establishing a holding pattern while she gets together what she will say next, reminding us, as we wait for the words to come, of the brain-based difficulty she experiences in shifting from one stage of speech to the next.
Other openers, more elaborate, share some of the enthusiasm of „Guess what!“ „I can’t believe it!“ she’ll say, or „Isn’t it amazing?!“ That’s not a question, though it sounds like one, and it’s not really amazing, even to her. Rather it’s her regular introduction to a matter of consuming interest — a new fluffy-in- the-middle, perhaps, or a fee. Yet the exclamatory tone may communicate only the mildest of surprises: „But couldn’t believe it, they decided to make the fireworks [originally scheduled for eight] at nine!“
She doesn’t need openers for the routine exchanges of daily life; if you’re shopping with her, or working with her in the kitchen, she’ll sound almost normal. „Tomorrow I am going to make Doubly Delicious chocolate cookies“ carries no exclamation point. On such familiar ground, she offers with no hesitation an ordinary, factual communication. There are plenty of these now; it’s more than thirty years since I noted down that for the first time in her life Jessy had told me something I didn’t already know. But other statements sound more normal than they are. I hear Jessy say clearly, definitely, positively, „Jane’s house is in New Jersey“. It sounds like a statement, it’s a statement in tone and form. Yet she doesn’t know where Jane’s house is, and the statement is false. But she has no reason to mislead me, and she is incapable of a convincing lie, so I’m able to guess: this is one of her odd assertions that function as a question. What we do automatically is for her an effort: to shift the verb and noun from „Jane’s house is…“ to „Is Jane’s house..?“; to turn a statement into a question. Jessy knows how to do it; she can do it in writing, taking her time. But in speaking she’ll go for the easier way.
* * *
Jessy asks surprisingly few questions; that particular rising tone is rare. She never went through a „why?“ stage; even „when?“ and „where?“ are not among her common openers. When apparent statements function as questions, they are not the questions of curiosity; they are not even requests for information. The assertion is in fact a hopeful hypothesis; it is that particular kind of question that expects a „yes“ answer. „Jane’s house is in New Jersey, isn’t it?“ She’d like it to be there; she has reasons for wanting to go to New Jersey. But instead of dealing with that (it’s a long way), I opt for a speech lesson. „Is that a statement or a question? Are you asking me or telling me?“ I’ve taken a risk, I know. This time she answers calmly, and we talk about other ways she might say it. But sometimes — beware — the lesson hits a nerve. She may bang the table, she may explode into what she and we call a snap. „Why do you ask me that?“ It’s more than a nasty, sharp response. And it’s not a question; it expects no reply. It’s a sound, loud, abrupt, angry, immediate, no openers necessary. The words come out so fast they are scarcely recognizable. This is not communicative speech, it’s a reflex noise. Though we’ve learned the kind of thing that elicits these snaps, that doesn’t mean we understand them. They send us back where we started, into bewilderment.
Other expressions of emotion, however, are only too easy to read. Suppose Jessy is asked, as she often is at work, to interrupt one task and turn to another. She’s learned what she should say and she says it: „I would be happy to“. The tone is not flat; on „happy“ it rises high. Too high; the exaggerated emphasis proclaims she wouldn’t be happy to at all. The disconnect between words and feeling is complete. It’s the sound of insincerity; give it a bit of a twist and it might even be irony. Yet it is neither. Insincerity and irony are beyond Jessy’s powers; for her, language means only what it says. She has learned what is required by the situation, she has said the right words; what more can be expected? Without a theory of other minds, one is unlikely to interrogate one’s own; Jessy doesn’t consider whether she really is happy, or realize her voice conveys not happiness but clear displeasure.
Yet Jessy has a genuinely willing response, a cheerful, relaxed „Sure“. I praise it whenever I hear it, and I hear it often. But at work, where it’s most needed? Shall I coach her, rehearse her to substitute the simple answer that comes out so naturally when feeling is congruent to word? It won’t work. I know already the unnatural grin that results when she’s asked to smile for a photo. If she tries to mimic the tone, her voice will betray her more reliably than any polygraph.
And shall I try to explain insincerity, that inherent denial of literal meaning? I could tell her, „It’s when you say something but you don’t really mean it“. She’d understand that, I think. But that doesn’t mean she could say a good „Sure“.
* * *
She can’t lie. That’s almost true. Ten years ago it was true. Today, now and then, she manages the transparent lie of a three-year-old caught with his hand in the cookie jar; she’s come that far. I�
��m not the only parent of an autistic child to count it as progress. Real lying, however, controlled, effective insincerity, is forever beyond her compass.
The inability to lie convincingly could pass as a diagnostic indicator of autism. It’s not surprising that it’s mirrored by a corresponding inability to recognize dissembling and deception; both, after all, depend on a developed theory of mind. Temple Grandin, an established professional, speaks of her difficulty in allowing for the possibility of insincerity; Paul McDonnell, a college student, tells us how easily a „friend“ was able to borrow, then to steal, the money he had worked all summer to earn[17]. Temple and Paul navigate in the world as Jessy cannot, but they are like her in this. Autistic people are no better at recognizing insincerity than performing it.
The lies Paul’s friend told him are what Jessy calls „black lies“, to distinguish them from the white lies that I have reluctantly taught her are sometimes necessary — polite lies, social lies, lies to spare people’s feelings, lies to smooth the way, saying you’re happy to when you’re not. I can feed her the words; the tone is beyond my control — and hers. How well, after all, does she understand the tones behind our words, the irritation in my voice, the controlled exasperation when her supervisor finds her once again doing something she’s been told not to do? Paul McDonnell writes of how „certain tones of voice“ made him anxious, when he would „think that a surprised tone, or an emphatic tone, would mean anger“ and ask his parents, „Are you mad at me?“ over and over again. Without the understanding of tones — and gestures, and facial expressions, even postures — how can one be sure? Can one even distinguish black lies from white?
* * *
There is a dimension of language, however, that Jessy does not share with Paul and Temple. No account of Jessy’s language would be complete without her noises, not only those loud snaps, but a whole array of other sounds, private, unconscious. Higher- functioning autistic people may have made such sounds as children, but they learn to keep them private, as they learn by experience to restrict body motions like rocking to places where they will not attract attention. Jessy has learned too; after twenty years these noises are seldom — I hope never — heard at work. At home, though, they are so much a part of her that we scarcely hear them, unless in the increasingly rare instances when they escalate and she needs our help to regain control. More often, however, they are simply noises. I overhear her squealing as she vacuums, not anxiously, not cheerfully — just squealing. Absorbed in the activity and in the privacy of its covering noise, she is hurrying to finish before she leaves for work. She’s left herself plenty of time, so her squeal is unworried — unlike the squeal, similar but edged, that I hear through the sound of the shower when somebody opens a tap and her water turns cold. Or the „Oh dear“, irritated rather than distressed, amid a softer squeal punctuated by just enough words so that I gather she’s dropped one of my morning pills and it’s rolled under the stove. No big deal. All is quiet again; I know she’s found it.
And there are, or were, the mumbles, dark, ominous, existing in a no-man’s-land between verbalization and pure sound, as involuntary as her furious snaps. The snaps, at least, are interpretable; though „Why do you ask me that?“ expects no answer, I can hear the meaning beneath: „I’m really angry when you ask that kind of question“. But the mumbles were subverbal, idiosyncratic word clusters devolved with repetition into nonsense, nonsense that was nevertheless a reliable indicator of discomfort or displeasure. The mumbles flourished all through her teens. She and a perceptive friend spent hours once happily listing them, twenty or thirty utterances, each more bizarre than the last. „Cigar three, cigar three“, was one. Years later, her articulateness and communicativeness growing together, she explained how that began: it was „she got a three“ — a strikeout. So today I ask her about another one, equally mysterious: „We go on“. I’m putting some mumbles in the book about her, I tell her. Where did that one come from? She’s delighted to remember; she always is when we summon up remembrance of things past. It was from a Led Zeppelin song, she says. Another, „Dig a roof“, from a song she sang at camp. „Root?“ I suggest, searching, as usual, for meaning. No, she says, „roof“. If I knew the song, perhaps… I can guess it was, like a third strike, associated with something unpleasant, but I’ll never know how or why.
She reminds me of another mumble. We heard it often — back then we heard them all often. It sounded like „anklyeah“. She’s clear: there were no words hidden in that one. Rather, it represented the number seven. Leaving that oddity, I hazard another question: „You don’t mumble at work, do you?“ I’ve phrased it to invite the answer I want to hear, I know. Still, I’m delighted by the cheerful force of her reply. „No way!“
Because there can’t be mumbles. There mustn’t be. I remember the middle-aged woman I encountered in a bus station, mumbling under her breath to nobody at all — the frisson I felt, of pity but also fear. Jessy was still young; my imagination leapt ahead. Would she be like that, grown too old to be charming, still mumbling? If I felt fear, what could I expect from others? Higher-functioning people can learn from experience the necessity to control bizarre behavior — experience unlikely to be pleasant. Jessy needs explicit teaching. „You don’t want people to think you’re crazy, do you?“ I didn’t even know then if she knew what „crazy“ meant. Enough that she knew it was bad, that it included mumbles, and that if she tried hard she might learn to control them. And over years, she did.
Today, however, she is enjoying herself. She volunteers a mumble I’ve never heard her say, noting, with her usual precision, that it is „out loud, which is not really mumbling“. It’s out of the same bag of mysteries, though: „You caught my name“. Call?» I ask — her pronunciation is ambiguous and I know she hates us to call her name. But she’s definite; the word is «caught». Keep me from crying, she adds. «Crying makes my face all stuffy. I’m pleased. I’m proud». At forty, she’s developing her own method of control. If it works, who cares that it’s bizarre? For «crying» means the banshee wail, of all Jessy’s sounds the climactic worst. «Wee-alo, Wee-alo» it goes, up and down, up and down, in an ecstasy of desolation. It’s rare now, and brief, but still the same syllables, the same piercing, tuneless tune: our own domestic air-raid siren.
In the weeks spent writing this chapter, listening more closely than ever before, I’ve heard sounds I never noticed — within the squeal, for instance, the occasional squeak when Jessy’s task requires an extra application of force. How much else have I not registered? Her prosody is more complex than I thought. Experience must qualify those opening adjectives; her communications are not so much flat or atonal as unvarying; the impression of monotony is less a matter of unchanging tone as of tone that changes always in the same way. Tone and phrase are one package, inseparable. «Here’s the local forecast». It’s high on «Here’s», to catch our attention, then drops almost an octave. The prosody is as stereotyped as the language, as stereotyped as the situation (breakfast means we watch, must watch, the Weather Channel). «Mother». She’s brought my tea. That’s routine too, but to her mind less urgent; the tone drop is less marked, more like a major second. Her bedtime «Good night» is relaxed, almost musical; up on «Good», on «night» it descends to rest.
Every utterance has its own tune. «Ups-a-daisy doo doo doo!» marks annoyance. The voice waves up and down on «Ups-a- daisy», flattens out on the «doo’s». This exclamation point transcribes emphasis, not the confident enthusiasm of «Guess what! What happened? No big deal; she’s cooking, and „the bacon didn’t flip over“. A less transitory irritation yields something stranger, its tone blending annoyance with resignation: «Oh well, hang hang!» Then there’s «Oh I’m so sad!» There’s emphasis, but her voice is calm. She’s a little sad, but it’s under control. Another expression of sadness isn’t really an expression; it’s more like a claim. «Oh no!» This is Jessy’s regular response to disaster — earthquake, hurricane, train wreck, death. It may be in Canad
a or China; certainly it involves no one we know. Nevertheless, touchingly, Jessy will reach for the appropriate verbal package. Yes, it sounds fake. But it’s the best she can do.
Though disasters are common, oh no’s are relatively rare. Mostly they are elicited by newspaper stories, or conversation only partially understood. Jessy’s around during the TV news, but she pays no attention to the screen’s vivid horrors. They cannot pierce Nirvana. Yes, she may express irritation or sadness, she may experience the transitory desolation of wee-alo’s. But her language is who she is; I must insist on the primacy of that shining «Guess what!»
Yet this week I heard something even better. I heard her say, «Come see!» Common words, ordinary sounds, nothing bizarre about them. Words I had to wait forty years for. Come see. Share this experience with me. Together we will look at something with joint attention. It doesn’t matter what. I’ll write it down. And we will share the exclamation point.
Part two
Thinking
Chapter 5
«All different kind of days»
Scraps of paper are enough now, and a kitchen folder. In those days, though, the house was full of paper — notebook paper, construction paper, and more and more computer paper, the old n-by-14 sheets, lined or faintly striped, brought home by her father for a child who drew so much more easily than she talked. There was still little speech in those days; my language notes are largely from Jessy’s last twenty years. It was paper that allowed us to glimpse her mental experience, that assured us that though she might not talk, might not understand, she thought.
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