Like many for whom reading is hard and understanding partial, Jessy might be expected to prefer visual and auditory media. But it’s even harder for her to extract meaning from movies and TV. The rapid images and talk defeat her slow information processing; what she hears are her “transition phrases.” She understands the maps on the Weather Channel better than I do, but the spoken explanations are only words. As for movies, the ones she likes are based on books she knows already. Though she doesn’t mine them for human relationships, insofar as they show her people in action they contribute their bit to Thinking of Others.
. . .
It would be natural to write here that as Jessy is more aware of others she is more aware of herself. Yet how she could be more aware of herself is hard for me to imagine. She drew a picture of
From left: Jessy (holding drawing of Piper Cleaner Man), Piper Cleaner Girl, Piper Cleaner Fairy, 1967.
herself before she could talk. 1 Among the Piper Cleaner people she placed herself as a major character. She even found a way to represent herself as their creator when she drew herself holding her drawing of Piper Cleaner Man. The picture with which she hailed her eleventh birthday is one of the treasures of the suitcase. JESSICA, she labeled it, in assertive capitals. It shows Jessy — Jessica — at eight, at nine, at ten, at eleven: four Jessies, four years of progress. For each Jessy is taller than the last.
As time went on and self-awareness could move from pictures to speech, she noted other kinds of growth. “I can’t believe it, I read without being coaxed!” “I’m getting better at not insulting people” (her truthfulness compelled her to add, “Only did that last week”). “I had a speech handicap a long time ago.” Who would correct such a comfortable assessment? Jessy’s self-awareness usually is weighted toward the positive. She knows how sharp her hearing is, and often refers to it; she knows she has a remarkable sense of color. She is not at all surprised to find
Jessy at different ages, drawn to mark her eleventh birthday, 1969.
a story about herself in the paper. “Daddy found another announcement of my show!” Her smile is not an autistic, why-areyou-smiling smile; it is the smile of justified self-satisfaction.
Jessy is aware of her abilities and her progress. More surprising, in view of her incomprehension of other people’s thoughts and feelings, is her awareness of her own mind. Mind, of course, is a highly abstract concept, and Jessy was sixteen when she first used the word. But she used it with an understanding that suggested the idea was not new to her. Looking at an old drawing of a tunnel in which her superball went “back and forth, back and forth,” she told me where it happened — not in a real tunnel, but “in my mind.” From then on it was a phrase she used freely; it allowed her to verbalize the difference she’d always recognized between the reality outside and the imaginary within.
Her self-awareness, of course, is intensified as I enlist her memories for this book. But even I am astonished by her consciousness of her mental history. Though I’ve asked her many questions, I never asked her where her wee-alo’s came from; it didn’t occur to me that she knew. So a few months ago I heard their origin for the first time: “I got that wee-alo’s from the hellos at the end of the sentence” — the hellos that were extinguished a quarter-century ago. If she’s aware of that, what else may she know?
She’s aware of her dreams, too; if asked she will write them down. Often she illustrates them, and indeed they recall her earlier comic books. The plots, insofar as they exist, are sequential; there are no “dreamlike” discontinuities. They have generally upbeat endings. They are matter-of-fact even in fantasy. And they display plenty of “I.”
First I went downstairs with the elevator to see some beautiful things. Then I went up to 8th floor. I waited for another elevator for 10th floor. It came and I went high into space. I said, “Come back elevator. I am lost in atmosphere.” I saw the top of this building and came [back] to the 10th floor.
Another, somewhat simpler:
I watched many cartoon movies about the swing set made of trees. Bears and other animals climbed onto it.
Another:
I’m sick and tired of living on Hoxsey Street. I’m moving to Washington. I’m going to live in a friend’s house.
Like her comic books, her dreams are derivative rather than imaginative. Jessy drew the “swing set”; hung between trees, it was recognizably the swing of her childhood. The animals are out of television. The vocabulary of her trip in space — her drawing of the dream had labels like “troposphere,” “stratosphere,” “mesosphere” — came from a scientific picture book. A friend once talked of a summer in Washington. Only the most hardened Freudian could convert such externalities into symbols. There is something uncanny about a dream life so unmysterious, so close to the life of waking. But it is certainly self-aware.
The elevator dream.
. . .
Jessy is aware of herself, but there is a gap in her awareness. She is far more conscious of herself cognitively than emotionally. Mind — the word and the concept — came long before heart, though once she learned that hearts were something more than valentines or anatomical features they became a favorite topic. “I can’t believe it, there are many ways to say ‘-hearted’! There’s ‘lighthearted,’ ‘heavyhearted,’ ‘downhearted,’ ‘brokenhearted,’ ‘chickenhearted,’ ‘lionhearted,’ ‘stouthearted,’ ‘good-hearted’!” It is possible to talk about emotions autistically; what these terms might actually mean is lost in the pleasing formalism. Encouraged to talk about “emotional feelings,” Jessy readily adopts the new word, only recently distinguished from “motion” and still tinged with its meaning. Motion, moving. “I always walk fast if I’m happy and slow if I’m sad. Because of emotional feelings.” She finds this worth thinking about, for next day, all smiles, she has more to add. “This is another reason about the emotional feelings. If my heart is light I can walk fast, if my heart is heavy I can walk slow. Because my feet will be heavy if I feel sad.” Yet affairs of the heart, if you don’t understand them, aren’t really very interesting. Complacently, but only briefly, Jessy considers herself as an emotional being: “Boy, I never fell in love, with male or female!”
. . .
Jessy is not more self-aware as she begins to see herself in relation to others, but she is aware of herself differently. The self-involvement of autism diminishes, with obvious advantages. But with that comes — or might come — a source of pain. Does Jessy know she’s different? It’s a natural question; many people ask it. The answer is more complex than a simple yes or no, or even the “not yet” I put down when I first wrote about it almost twenty years ago. 2 It trails with it another, less natural question: not does she know, but does she care? What does autism — what does a mental handicap — mean to her?
Jessy was twenty-seven when an auto accident got us talking about the benefits of seat belts. I mentioned a child I knew of who had suffered brain damage in an accident before seat belts became mandatory. Jessy, showing some of her medical knowledge, at once picked up on the words “brain damage”; it could, she said, make you paralyzed. I said it could also make you retarded (as had indeed happened), so that you couldn’t think very well or have a job. I could not have predicted Jessy’s reaction. It was better to die in the accident, she said, than be — paralyzed, I expected, but instead she said “retarded.” “Because then I couldn’t have a good life.” Clearly she had some idea of what it meant to be retarded — I suppose she’d heard the word at school. But just as clearly, her nine years in the special class had never suggested to her that it might be applied to herself.
To Jessy, handicaps are physical. A mental handicap is a perfect example of the kind of social generalization her mind has difficulty forming. She knows she took a long time to learn to talk and that she has to work hard to control her behavior — harder than other people. That’s the way we’ve presented her difference to her. But the comparison is ours, not hers. To feel your own difference you have to form a
concept of what other people are like, how they live, what’s expected of them.
. . .
We had never tried to suppress the word “autistic,” either in conversation or as it appeared in various publications about the house. Jessy had never asked about it. She knew there was a book about her; she had even typed the Spanish translation. There were no books about her siblings. She didn’t wonder why; social comparisons were not within her scope. If she was to know she was autistic, we would have to tell her. The years went by and we didn’t. She knew her problems; she went over them every day with her imagery scenes. It didn’t seem necessary to give them a name.
Then, in 1988, Rain Man came along. That extraordinary movie made people in America and all over the world aware of a handicap few had known existed. We saw it and marveled at its accuracy and sensitivity. To prepare for his role Dustin Hoffman had spent weeks with two autistic young men — one was Joe Sullivan, whose multiplications and primes were so like Jessy’s. Hoffman had absorbed the mumbles, the gait, the postures, the characteristic preoccupations of autism. He had sought expert advice; the film’s credits were an honor roll of autism. Here was our opportunity. Jessy was thirty. Should we take her to see it?
We did. She saw it twice. It was the first adult movie — and so far the last — that she really enjoyed and understood. She recognized Rain Man’s obsessions. “He was inflexible about his underwear,” she told her brother. “And he stared at the dryer, clothes going round and round.” He said “I don’t know” a lot. He liked Wheel of Fortune. He mumbled. She could relate to it all, even feel a bit superior. “And he also farted in the telephone booth, and his brother said a bad word, a horrendous verbalization.” She wouldn’t do that — though her brother probably would. Jessy has known she is autistic ever since.
Many autistic adults greet their diagnosis with relief. It explains their problems; it may even put them in touch with others like themselves. But they are less severely affected than Jessy; they feel and understand things she does not. For Jessy autism is not a difficult social condition but a collection of specifics — mumbling, crying, staring at things that go round and round. But those specifics have led her forward; out of her awareness of autism have come her first social generalizations.
“Well, I haven’t cried for a whole month,” she remarks. “Just like the other adults.” Then she adds, “I know some of the other autistic people cried.” Like other adults, like other autistic people. Two comparisons — herself as normal (a word she has never used), herself as autistic. Taking it further: “If I cry I always make faces. If when people cry do they always make faces?” She’s thinking it through; she knows they don’t. Later she will even say, after one of her now rare mumbles, “Mother, I can’t help it because I’m one of the autisms.” The generalization achieved, Jessy has placed herself within it. But the odd diction gives her away. Autism is a plural.
It is also a fact. Jessy takes it behavior by behavior, which is probably the best way. Certainly it saves her a great deal of pain. She doesn’t suffer because she has no boyfriend. She doesn’t yearn for a baby. She has never asked why she is autistic, why, in the searing words of one child, “God made me be like this.” Jessy knows who she is, and though she may wish she’d behaved differently in one case or another, she shows no sign of wanting to be anything but what she is.
. . .
And yet, in the light of her awareness of her “autisms,” she now is able to say that she’s ashamed. What are we to make of that?
Some cynic defined conscience as the little voice inside us that tells us that someone is looking. His joke was deliberately to confound inside with outside, conscience with shame. Our civilization tends to prefer conscience, to respect actions that arise from interior conviction above actions performed — or avoided — because of “what people will think.” The parents of an autistic person, however, have a harder time admiring indifference to other people’s opinions. Our child may not notice the stares and comments, but we do. And though we may be angry and inveigh against society’s insensitivity, we begin to see the advantages of shame, and agree with Homer, who long ago said that it “does much harm to people but profits them also.” For a person who doesn’t care about what people think of her, one of the most effective human motivators is absent. If Jessy can say she is ashamed, if she experiences that bad feeling so familiar to most of us, if it hurts, if it makes her unhappy, surely it’s to be welcomed as a huge step forward, an entrance into a new awareness of herself in society. If she can add actual real-world embarrassment to her STOP and RELAX and imagined rewards, mustn’t their power be doubled?
Jessy says she’s ashamed after she’s done something egregious, like angrily snapping at an innocent what-question. It happens, though she’s rehearsed her what-scenes more times than I could count. “What are you doing?” someone asked her not so long ago. He was a cameraman, and he needed to know. The words came at him like bullets: “Why do you ask me that?!” Then she whimpered, then she cried a bit, then she said, “I’m ashamed.” So he caught on film what must, if we take it at face value, demonstrate exactly that concern for how she appears to others I’ve insisted is missing. 3 But those who know Jessy learn that the words she uses, even when they appear to suit the circumstances, do not always mean what they mean for us. The episode needs some digging; there is more to the story.
The innocent cameraman (of course he felt terrible about it) was part of a documentary team. They had been following us around for five days, guided by Dr. Oliver Sacks, and everything had gone more than well. They were shooting a six-part series on Dr. Sacks; Jessy was the center of attention of the autism section. She was filmed with her paintings, with an ATM machine, with the old sheets of flavor tubes. She was taken for a ride on her favorite routes. She loved it all. But then she snapped.
They got it on camera, and Jessy knew it. She knew that people would see it. And clearly, unambiguously, she said she didn’t want it in the film. It wasn’t the first time she’d said she was ashamed. But she’d never before said anything like that.
Of course they told her that if she didn’t want it they wouldn’t put it in. Months later, however, as the director, Christopher Rawlence, was putting together the footage, he realized that he needed Jessy’s snap. To present autism as all charm and interesting strangeness was to romanticize it past recognition. We read Chris’s letter to Jessy: though of course he would keep his promise to her, would she perhaps be willing to let him show her snapping, and crying, and being sorry? She said yes without a qualm — it was past, it was over, whatever she’d felt, whether embarrassment, shame, or simply the bad feeling that comes with disapproval. The snap went into the picture; it has been seen on both sides of the Atlantic. Chris sent us a video, and Jessy has watched it many times. She likes the route signs and the ATM. But the snap is her favorite part. She doesn’t wince; she doesn’t turn away. “I didn’t know it was so loud!” she says — smiling.
I would like to think that the story of that snap contains some glint of a more fully social, more conscious future. But it pulls both ways; I don’t know. This book will be long finished before I find out.
. . .
I do know, however, that the vocabulary of handicap doesn’t work for Jessy. She doesn’t “suffer from” autism. She doesn’t think of herself as handicapped. “Afflicted” is a word she doesn’t know. As in other things, she’s matter-of-fact. She’s well aware of her obsessions, whether she calls them enthusiasms or whether she calls them autisms and they get her into trouble. She’s aware of her compulsions and rigidities and routines. She knows she must control them if she’s to avoid… shame, perhaps, but certainly unpleasant consequences. She knows she needs consequences to do this, and imagery scenes, and what we call, and she calls, Flexibility Practice. She knows how important flexibility is to her daily life, and to what is perhaps its most important social element, her job.
Jessy was in her midteens before she could understand a concept li
ke flexibility. But when she did, the phrase became another means to focus her mind on the importance of learning to accept the changes that upset her so. We’d been nudging her toward flexibility all through childhood: now we could talk about it. Altered schedules, unexpected guests, lost objects, overlong phone calls, power outages — no household can eliminate them, and no household should try. It’s all too tempting, in the interests of peace and quiet, to imprison a whole family within the unbreakable routines that structure the lives of people with autism. To survive, families, and teachers — and employers — develop ways, not to avoid such disruptions, but to minimize the overreactions they trigger. Jessy can accept changes if she’s told ahead of time; predicted, they can be absorbed into the reassuring order. (She can even accept a what-question if she knows it’s coming.) “I will prepare myself.” Negotiate the change in advance, allow her the time she needs to shift gears, and she can be flexible. Routines can be varied. In familiar areas, negotiation is no longer necessary, or rather, Jessy negotiates the adjustment with herself. It’s another reason to feel proud of herself. “I was flexible!”
Inflexibility, of course, continues. Not every change can be predicted. Jessy gets used to working late at the busy startup of college, but when things calm down and overtime is only occasional she has to get used to it all over again. Best to recognize the uses of inflexibility, limited but real. Our household runs as smoothly as Jessy can make it. Though a quarter of a century has passed since she earned points for taking out the garbage, she has never once had to be reminded. Vitamin pills, accurately distinguished and distributed, appear by our plates every morning. At the risk of being nosy, Jessy checks the calendar for our appointments; she’ll be more upset than we are if we forget one. We enjoy as fully as we can the accuracy and reliability that are the marks of her condition. They are valuable qualities, in the work-place as at home. Accuracy and reliability are what she brings to her job, the job that has been, and remains, Jessy’s greatest social challenge.
Exiting Nirvana Page 16
