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.
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 selfinvolvement 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.[37] 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.[38] 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.
