Exiting Nirvana Read online

  Certainly people buy her paintings, and the checks are no longer nugatory. Clients choose their building; Jessy works as readily from photographs as from her own sketch. (The photos must, however, be sharp and detailed; Jessy can combine, but any attempt at invention will be vague and unconvincing.) Jessy’s carefully kept notebook contains seventy-five names and addresses; many of the clients are people she’s met. But not all paintings are paid for, and that too is a social lesson, as she works on her gifts for family and friends. A painting is a fine graduation present for a special housemate — she’ll make sure that her view of his college dormitory shows his window. And she will provide him a description.

  One of the many challenges that confront the family of an autistic person comes when she or he turns twenty-two and school is over. (For the past twenty-five years, federal law has guaranteed education for the handicapped until age twenty-two.) The teachers at Mount Greylock Regional High School had worked with Jessy on reading and writing for nine years. She had achieved what might be called a fourth-grade competence, and we didn’t want her to lose it, as she certainly would if it wasn’t exercised. So we provided her with factual material on her obsessive interests — books on the planets, brochures, newspaper accounts of power outages — and she read of them what she could. We had her write thank-you letters; written politenesses were actually good. Her journals were done at our suggestion. But the descriptions were Valerie’s idea, Valerie who had known her so long, and who was still a friend. When Jessy made her a portrait of her bathroom heater, Val suggested she write a description.

  The first descriptions were only a couple of sentences, and those heavily prompted. Jessy had no idea how to begin or how to continue. More significant for effective communication, her defective “theory of mind” afforded no insight into what a viewer would find obvious and what he would need to be told. So each description gave not only practice in grammar, syntax, vocabulary, and spelling (“vermilion,” “carmine,” “cobalt”), but in that fundamental aspect of writing, and living: imagining the reader’s point of view. I asked questions: Do you think they’ll see the different pinks? How many are there? What do you want to tell them next? And over the years — not months — I was suggesting less and less, and the descriptions got longer and longer. (Several are reproduced in Appendix I.) They became a habit, then an unbreakable routine. Jessy would finish a painting; that night she’d say, “We will write the description.”

  But one night — seven years later? ten years? I can’t keep records ofeverything — I was going out. “We can’t write it tonight,” I told her, “we’ll do it tomorrow.” And when I came back it was done. It was a draft, we edited it a bit together, but Jessy had written it. So slow, so gradual, is the building of a simple, essential skill.

  . . .

  I have in this chapter already exhibited my own penchant for metaphoric thinking. It’s a tempting activity, to read our own meanings into Jessy’s pure colors and shapes. “Earth shadow, resembling a rather menacing tornado, hovers behind her sister Katy’s house in Cambridge.” But the writer of that vivid, and accurate, sentence, knew Jessy well enough to draw back from his suggestion. Describing another painting he makes it clear: “The lightning bolt and the black windowpanes, which contribute to the ominous, almost Gothic quality of this painting, are merely the signs of a power failure for Jessy.” 2 When another viewer felt that quality, he remembered Jessy’s astronomical interests and speculated about a black hole. But Ernie knew the true source of that intensity. “A blackout, the phenomenon that temporarily disrupts the flow of the appliance world, is cause for great excitement and planning. If rain is in the forecast, Jessy will make sure to set her auxiliary battery-powered alarm clock, lest rain turn to thunderstorm, thunderstorm cause power outage, and power outage stop the clock.” Now that would be ominous.

  In short, Jessy’s codes are not ours. Once someone asked for happy colors and Jessy was nonplussed. Once someone thought she should be frightened of the dark. Once someone thought outer weather could symbolize inner weather. But symbols, if they communicate at all, carry socially attributed, agreed-upon meanings. For Jessy, things are what they are, and if they have meanings, they are wholly idiosyncratic. To understand her is to understand that.

  . . .

  Painting has become part of Jessy’s life. It’s part of my life too. When she’s working on a commission I want to see it every day, not to check up, but to delight in the unfolding process, as color by color, shade by shade, Jessy realizes the order that is already diagrammed in her mind. However odd I find her choices, brilliant or neutral, saturated or pastel, her endgame will, I know, bring them into unpredictable, perfect balance. The work will stretch over months; Jessy takes the long view. Painting is a small part of her full life, an activity like another, just one of the things she does. Certainly she chooses to do it, but I’m by no means sure she’d keep doing it without the continuing reinforcement of checks. When she comes home from work she doesn’t rush to her worktable. She’ll vacuum first, or relax in her rocker, or take out the trash, or make cookies or tuna fish casserole or Puerto Rican beans; painting is for the bits of afternoons and evenings when she has nothing to do. Except for Saturday nights. Then Party Mix is on the radio, and Jessy will put in two hours of concentrated work. It’s the only time she listens to music now — it’s no longer “too good,” but still turned so low that I can barely hear it through her closed door. The Sunday morning viewing is one of my great pleasures.

  It’s a pleasure for Jessy too. She’s pleased to share her painting, to hear me praise the colors, pleased to name them, to tell me the ones she’s mixed to produce a particular shade — for she rarely uses a color straight from the tube. Cadmium yellow is hard for her to pronounce, but she’ll try, and laugh when she fails with phthalocyanine green and quinacridone rose. She has sixty-two tubes of assorted acrylics, and a new shade is right up there with chocolate as one of the few things she wants to buy. Neatly arranged in spectrum order, her tubes are ready to express her ideal world, organized, certain, fully under her control.

  She is pleased to get checks, pleased to have a show, a reception, refreshments. She is pleased to be an artist. Or perhaps “content” is the better adjective. It is her proud parents who are pleased, delighted, thrilled. Jessy is content to be an artist, as she is content to be a mail clerk. After all, to her one activity is no more prestigious than the other.

  Yet in art too autism has its hidden land mines, and not only the possibility of a painto. A painto is the worst that can happen when she’s alone in her room. But outside, the social world impinges. As she sketches a house, pad in hand, absorbed in penciling in the clapboards that offer opportunities for rainbow upon rainbow, a curious passerby asks a what-question. “What are you making?” That’s bad when she’s making cookies, bad when she’s making art. Jessy knows it may happen; she tries to prepare herself beforehand. Still, she may explode if it catches her unawares. Or at a reception, everything going well — she’s enjoying the attention, enjoying the refreshments, enjoying seeing her paintings again (she has no eyes for other people’s), enjoying the praise — I make a mistake. Someone tells her she’s a wonderful artist. I remind her that a compliment deserves a thank-you, and a happy occasion collapses into misery. We must go outside to recover, leaving the bewildered stranger to wonder what he did wrong. Even here, autism’s minuses and pluses are inseparable. But now the pluses last longer.

  . . .

  When Jessy painted her room last year she used, of course, the full spectrum: violet, blue, green, yellow, orange — and pink, for these are pastels. Not just any pastels, however, but mixed to her specifications. A friend, an architect, brought her four huge volumes of color samples. The whole rainbow was there, hundreds of shades, numbered for a fussy client to choose from. Jessy did not deliberate, she knew; her choice was instantaneous. And now her room is not a riot, but a breathtaking harmony of color. Green and orange appear in two shades: mint and lim
e, pale orange and sunny peach. Each window, each window frame, each door, each door panel, each shelf, each alcove, is a different color. A cupboard faced in tongue-and-groove provides the necessary opportunity to display the full spectrum. This too is art, and Jessy is older now. I think even she would agree that these are happy colors.

  PART FOUR

  Living

  CHAPTER 9 “Because can tell by the face”

  It’s late; Jessy has been in bed for hours. We are listening to music with friends when she comes down to tell me her radiator is clanking. She’s quiet, even polite, but she’s annoyed. Her mind is on the sound, the old GAKE of childhood, and she goes straight, not to me, but to another elderly woman, and tells her. I recall similar misidentifications; they happen often when former companions come back to see her. But this is the first time it’s happened to me. Afterward, when we talk about it, she explains. “Both have white hair.”

  And that’s not even true. Mary’s hair is white; mine is a nondescript gray. It’s not that Jessy doesn’t know the difference between an old friend — she’s known Mary for thirty years — and her mother. It’s that her mind was full, too full to make the extra effort to attend to the indicators that a normal two-year-old processes so effortlessly that it seems instinctual. And if she can overlook so clear, so visual an indicator as hair color — Jessy, who distinguishes the minutest differences between shades — how can we expect her to pick up the subtle indicators of emotions? And if she can’t, how can we expect her to manage the ordinary, inescapable interchanges of living?

  . . .

  At times we have the eerie feeling that Jessy is a Martian, a visitor from some pure planet where feelings do not exist. (Autistic people have a similar feeling; many of them watch Star Trek, and feel, with Temple Grandin, an identification with Mr. Spock.) She asks a question, trying to work it out: “Is it a reason to get sad when old people die?” A friend has called to say he won’t be coming to dinner; his father has died suddenly. Well? We had presented the death of grandparents as something to accept without tears — grandfather at eighty-six, confused and depressed, grandmother at ninety-two, incapacitated by a stroke. Jessy believed us. How not? She had picked up no contradictory signals. A normal child would see beneath the apparent acceptance of death to qualify it; our reassurances had unthinkingly assumed that Jessy would recognize our unspoken sadness. Yet we should have known; we knew her cheerful interest in funerals as “a good reason” to miss a day of work and still get paid. It was predictable. “I didn’t know people get sad when old people die.”

  But there is progress. We see a movie. Jessy can follow a film now, if it is simple enough and I am there to provide a running summary; she remembers to this day how the princess in Star Wars was sad when the Death Star destroyed her planet. Another movie is about children lost in the Adirondacks. At a moment when they are in grave danger from a murderous tramp who is stalking the little boy with a gun, Jessy surprises me: “I think I am going to cry.” Empathy! How long we’ve waited for it! I tell her they’re going to escape, as they fortunately do, and it’s all right. Yet two weeks later on a TV western the hero, shot by Indians, has an arrow through his shoulder, obviously a serious wound. A rail-road track is visible, however, and a train has been mentioned, so: “He will miss the train?” Or in the cartoon Pinocchio, she shows interest in the moon rising, but walks out on the scene of Gepetto and Pinocchio embracing when Pinocchio becomes a real boy. I recall how when she was eighteen a psychologist said she needed to talk about feelings. We tried to provide a vocabulary, only to see her delightedly collect words with similar prefixes — discouraged, disappointed, desperate, depressed, disgruntled, dismayed — her mental energies absorbed in the enterprise of arranging them in hierarchies of severity, her emotions untouched.

  Those who live and work with autistic people have many such anecdotes. A woman with an M.A. consoles a friend who’s lost her mother; she tells her she knows how she feels because her parakeet has just died. Or there’s the teenager reported by Christopher Gillberg, a specialist in autism, who “after the death of his mother, when people asked how he was doing… usually answered, ‘Oh, I am all right. You see I have Asperger syndrome, which makes me less vulnerable to the loss of loved ones than are most people.’” 1 Everybody dies sometime, I said to Jessy this year apropos of something or other. She replied with her usual cheerfulness. “Then when you die our house will belong to me!” And that is perfectly true.

  . . .

  How can we expect Jessy to realize that recognizing a friend is more important than worrying about the thermostat setting? It’s not more important to her. So we tell her. She takes it in, but she isn’t a bit upset. Mistakes about people aren’t in the same ballpark as putting two socks on the same foot (she cried and made a book about that), or a mistaken box number. It doesn’t occur to her that a failure in recognition might hurt someone’s feelings. She knows about feeling bad and feeling good. She knows about feeling hurt, in your head, your stomach, your foot. But a mental or emotional hurt — that’s a metaphor, that’s not so obvious.

  What are hurt feelings, anyway? She tells me loudly, “You hurt my feelings!” Her voice proclaims anger. Or she exclaims, “My, my feelings are hurt!” This time it’s sadness; she’s misbehaved, and her friend won’t take her out to breakfast. Or she asks what she’s learned to call a “rhetorical question,” as she so often does when she’s annoyed at somebody else’s mistake. As when her father dropped something on his foot. He said, “Ouch!” loud and sudden, and Jessy, loud and sudden, asked angrily, “Why do you drop it?” But now her father’s annoyed; his foot hurts, and this is a question she knows requires no answer. So he says (loud and sudden), “Don’t ask me that!” And Jessy notes in her journal, “Discouragement. I am discouraged about hurting my father’s feelings.” She knows it’s a feeling, at least, and she knows it’s not about his foot. It’s a bad feeling. That’s as close as she comes. “Discouragement” is a bad feeling too. Desperate? Disgruntled? Dismayed? Let the d-words go; just call it “sad.”

  A page from Jessy’s journal, considering a “discouragement.”

  What is the right word to use in those social contexts she is increasingly aware of? “Is it an insult when I scream? Is it hurt your feelings?” Or when she has been reproved because she accused a guest at table of stealing her napkin: “‘Who stole my napkin?’ Is it an insult?” Well, it’s almost an insult. It depends on the tone of voice, it depends (I discover as I go along) on the value of the object — “Who stole my money?” is different —it depends on the context. “Is it an insult when I say, ‘I heard you making that noise?’” “Is it an insult when I say someone died?”

  How do we learn the right words for these slippery social concepts? Nobody teaches us. Jessy had waited patiently to vacuum the room while her father looked over his slides. He’d said he’d be finished in a minute, but then he looked at some more. Jessy has grown much, much better at waiting, but a good job of patience is hard to extend when you thought it was finished and then it wasn’t. She reports to me, “I told my father he lied. Is that an insult?” It’s an insult, all right, but is it a lie? Jessy begins her bizarre creaky-door noise, once so familiar, now uncommon — because she’s insulted her father, because she’s been corrected, because she’s gotten things wrong. She cares about being corrected now, as she didn’t in the long, unsocial, indifferent years when she only shrieked about lights and clouds and bells and gongs and the other phenomena of her autistic world. She didn’t care then about the niceties of social behavior, or, indeed, whether she could get her shrieking under control, which she does, on this occasion, in less than ten minutes. She really wants to learn, now, to navigate on this mysterious planet of ours, but it’s so hard, and it’s so hard to help her, and so sad when she fails.

  . . .

  Eric Courchesne writes: “The development of normal social and language skills depends upon the comprehension and use of attention-directing gestures and
the coordination of attention among objects and people.” In order to comprehend a situation and respond normally within it, the child must be able to detect “salient changes in the environment,” stay focused on “channels anticipated to provide relevant information,” and effect “smooth, accurate, and rapid shifts of attention in response to attention-directing stimuli such as facial, gestural, and vocal signals during social interactions.” 2 If this ability is impaired, the child — and adult — must make do with what we might call “behavioral echolalia,” learning behavior as she initially learned speech. Both are learned through imitation; both are delayed in autism; and both are “echoed” exactly, not altered according to the situation. From such rote learning, we should expect strange results. What is relevant information for Jessy may well seem, by non-Martian standards, disconcertingly irrelevant.

  So hear Jessy as she mulls over our near accident last week at a dangerous intersection. She was getting a cold that day, or thinks she was — she’s very interested in the exact time of onset of colds. “That means I would have been hurt or killed as well as having a cold.” I’m used to it, but even to me this sounds bizarre. It brings back, once again, a day from the long ago, watching my daughter, not yet two, crawling serenely away from us all. “There’s nothing the matter with Jessy,” I told my neighbor. “She just has a distorted sense of what’s important.” Words like that are hard to forget.

  What’s important? What’s unimportant? How do we know? How does she know, when what’s “salient” for her isn’t salient for you and me? One Sunday I tell her not to cook me any bacon. Jessy knows why; she knows all about cholesterol. “Because I don’t want you to have a stroke.” So far, so good —very good. But then: “Does it count for taking a personal day?” It does, I assure her. And she thinks it over, working out the rule. “Even if not dead. Just in the family.”