Yes, she pays taxes, the concrete sign of it, and she understands at least some of the things that taxes go for. But can I take her to register, knowing her interest rides on the simplicity of an obsession— worse, that her vote would be no true choice but a mere echo of what we told her? Yet there are other single-issue voters, after all, and this issue is preferable to many I can think of. I don’t know. I just don’t know.
But I do know there’s progress, that Jessy’s still growing. That she’s not merely, passively, being taught, but taking in hand her own journey toward empathy, thinking about it, wording at it. Now, as I write, she is reviewing, confirming her social rules. Should she refuse when she’s asked to work overtime? «Only if I have another appointment, like giving blood. Because thinking of others is important». To think of others you have to notice how they feel. «I will learn by the voice when someone is irritated. Loud». Four days later: «I will remember how people feel when they get irritated. First the voice is loud and abrupt. But expression could be wrinkle face. Like frowning».
«Sometimes can tell when people are happy even if not smiling because can tell by the face. When people are happy eyes always glow and face shine like sun. And if people are sad face always looks gloomy like clouds. And between happy and sad like partly cloudy». Jessy said that twenty years ago, and joyfully I wrote it down. But did she say it or know it? Years went by and I heard nothing like it again. Maybe Joann told her that; maybe she only picked up on it because of sun and clouds. But now it’s spontaneous, now she’s noticing, now she’s focusing on those subtle indicators. Now she’s beginning to understand. When her load of magazines and catalogs breaks the janitor’s recycling bag, on her own she goes and gets him a new one. And she tells me, I felt so bad for that janitor! Let the millennium begin.
Chapter 10
«I guess Darth Vader learned from consequences! Like me!»
Inside the kitchen folder there is, not an envelope — an envelope’s not big enough — but another folder. It’s full and it grows fuller. It’s labeled Social. Its bulk is a reminder of what we slowly realized: that after the years of easy teaching, years of discovering the possibilities of what Jessy could learn, even excel at, there remained the wide expanse of things she could never excel at, that she could learn only partially and with the greatest difficulty.
Not that the teaching I now call easy ever felt easy. It was years before I got Jessy to feed herself; more years before she used the toilet. Even skills she had mastered, like climbing stairs, or marking with a crayon, or putting together a puzzle, would be lost and have to be introduced again. Teaching and maintaining the ordinary skills of childhood was a continual attempt to coax, to lure her past Kanner’s «obsessive desire for the maintenance of sameness» — past the barriers raised by her desire to continue what she was already doing, her contentment in remaining just where she was. Far more often than not the attempt was fruitless. I collected inspirational maxims to help me through the days — Nietzsche’s «What doesn’t kill me makes me stronger», or, after an especially hard week, the words of the Dutch liberator William the Silent: «It is not necessary to hope in order to undertake; it is not necessary to succeed in order to persevere».
In the midst of these years of mingled frustration and tedium, it’s not surprising that the few areas of Jessy’s clear, quick excellence took on a special importance. We used to say that the world was divided into things you couldn’t teach Jessy and things you didn’t have to teach her. That, of course, was an exaggeration. It might take eight years before she dressed herself completely, but eventually she did. Still, the contrast was striking between the things you must walk her through step by step, over and over, and the things you did not so much teach as show. Colors, shapes, letters (those too are shapes), numbers, later the system of musical notation — for such things her learning was so immediate it seemed we had merely drawn her attention to what she had always known. It was natural, then, that such achievements became for us lights shining in darkness — or, less melodramatically, signals, glimpsed through uncertain and shifting clouds. Peacock green and peacock blue, heptagons and dodecagons, factors and functions, were not merely welcome, they were thrilling. If Jessy couldn’t read — and at the height of her mathematical obsession she could read only three or four words together — if she couldn’t follow a story, we had these to hold on to, to marvel at and enjoy.
We had been glad when the psychologist told us our three- year-old had no intellectual deficiency. We — and the psychologist — should have known. Jessy was brilliant at the form-board, but that was all she could do. She couldn’t identify common objects, even by pointing. She couldn’t follow the simplest verbal directions. She could find nothing to do with the doll family. Silently, accurately, the testing recorded what we would fully comprehend only later: that it was in the ordinary world of human living and human relationships that the hardest work was to come. Inside the folder marked Social, spilling out of it into the suitcase, are the records of that work, continual and continuing, on the necessary conditions of life outside Nirvana. It was, and is, the most important work of all.
Intellectual achievement is useless without social development. My grandmother knew this. Long before Jessy was even thought of she used to say to me (to my intense irritation), «Be good, sweet child, and let who will be clever». But we are a clever family, and it’s natural that we should value intellectual achievement, natural too that in years when there was little to rejoice at we rejoiced in Jessy’s primes. But one cannot live in a world of prime numbers. It helped put things in proportion when we met, as we sometimes did, other autistic young people who were intellectually far more advanced than Jessy, but whose demeanor and behavior made it unlikely that anyone would care to spend much time with them. Unquestionably Jessy has intellectual capacities that have not been developed. She might have learned to work with computers. She might have learned calculus. She might have learned mathematical processes of which I know only the names. Yet though I regret possibilities left unpursued, I do not regret that instead of mathematics Jessy’s energies, and ours, have gone into the development of as attractive a human being as the circumstances allowed.
Until Jessy was in her teens, all our teaching had been what is now called «incidental». We had no set plan, no list of goals. We searched the environment for learning opportunities and took them as they arose. We latched onto her interests — which meant her obsessions — and did what we could with them. Knowing her as we did, we could nudge, even push, and draw back as we approached her level of tolerance, abandoning that particular area of learning to another day, another year. It was a regime that minimized frustration or failure, and it was reasonably successful.
But to the degree that it was successful, it could not last. The more Jessy entered the world, the more she was exposed to the unpredictabilities and uncertainties that were so hard for her to tolerate. New experiences poured in upon her, bringing new opportunities but also new demands. And for a long time it was the demands, not the opportunities, that were experienced most acutely.
It is in the nature of learning and growing that as more is mastered, more is expected. Jessy now had to try to do many more things she didn’t like or that she couldn’t do or did badly. Now not only we, but she herself, experienced failure and frustration, in the bus, in the classroom, in the supermarket, in the street. Because less is forgiven a teenager than a child, she had to work harder than ever before on the do’s and don’ts of social behavior. She couldn’t scream in the school bus (but she did). She couldn’t push the teacher against the wall (but she did). She couldn’t smell people, or go up to them and touch their clothes. She couldn’t cut into the cafeteria line. She couldn’t scream when she typed a period for a comma, or bite her hand. The list of don’ts of social living is endless. So is the list of do’s.
It was at this point in Jessy’s life that we encountered the little mechanism that was to make such a difference, to bring so much, so fast, within her list of capabilities. She was just fourteen.
It was a golf counter. Golfers wear it on their wrists to keep score. Jessy had seen one on another child, much less severely autistic, who had come to visit. It was everything she liked: it was mechanical, it was easy to use, it was predictable, it was numerical, it clicked. Her birthday was coming up and she wanted one — the first present besides candy she’d ever asked for. So it was under the best possible circumstances that we began our homemade program in behavior modification.
Behavior modification is not an attractive term, and the term «operant conditioning» is worse. Who wants to believe that learning is a matter of conditioning, of rewards and penalties, that what worked for B. F. Skinner’s pigeons will work for her child? We knew about behavior modification; we’d heard Ivar Lovaas speak at autism
