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 conventions. We were impressed with his pioneering work with autistic children, but we were also complacent. We’d already managed to teach toileting and self-help skills; we’d come a long way with language. Did we need this? Did Jessy?
But Jessy wanted that counter. We followed her lead, and she led us, all unknowing, as close as we’ve ever come to that thing so often claimed, so seldom found, a breakthrough.
The program had two elements: points for desirable behaviors (leading, if the number agreed on was reached, to a Popsicle at the end of the day), and a written contract. 1 It was important, I think, that Jessy was involved in both, that the process was not entirely imposed from without. It was Jessy who awarded the points, or subtracted them for such behaviors as hitting and screaming, whether or not I was present. Sometimes she made her own bar graph of the week’s numbers, in coordinated colors (lemonlemonlemon lime!). The day she reached 145½ when the goal was only 100, I realized that for mathematical Jessy not the Popsicle but the points themselves were her reward. The Popsicles were dropped unnoticed.
Even more important, Jessy and I negotiated the contract together. Shared attention! We made of our Sunday contract sessions a social occasion, both actually, as we sat side by side on her bed and reviewed the successes and failures of the past week, and theoretically, as I took the opportunity to talk about people’s behavior in general. Her enjoyment was obvious; much as she resisted reading, she loved reading the contracts, which I kept easily within her own vocabulary and comprehension.
One day, after more than a year of this, I set a long-term goal. I had taught Jessy to swim in the usual way, without points, but she would still not go out of her depth or swim more than the two or three feet necessary to reach my outstretched arms. If we contracted for 1000 points for swimming the length of the pool, I thought, we’d have something to work up to during the next year. What happened? That very night she walked up to the deep end of the pool, jumped in, and swam the 75-foot length eight times.
Another incident, though less spectacular, had greater significance for social development. At this time, though Jessy was friendly, even affectionate with people she knew well, we had been unable to persuade her to make the simplest greeting: no hello, no smile, no looking in the eye. On the contract, then, went “Hello” (1 point). Plus a proper name: “Hello, Mrs. Smith” (2 points). Plus eye contact (3 points). Plus a fourth point for doing it all “spontaneously”; in Jessy’s words, “without told.” Suddenly we began to get reports from school; from Mrs. Smith and Mrs. Jones and the speech therapist whose father was a London psychoanalyst and who had been working with Jessy for more than a year. “Hello, Mrs. Smith.” The click-click-click-click was hardly noticeable. And the new greetings, of course, elicited smiles and delight; Mrs. Smith and Mrs. Jones did not have to be programmed to deliver social reinforcement. Jessy was learning far more than mechanical greeting behavior. She was learning something even more foreign to her — to enjoy approval, since points and approval went together. If Jessy can now say, “I’m proud of myself,” and mean it; if she can repeat, “If at first you don’t succeed, try, try again,” and understand it, it is the result not of deep therapy that penetrated fourteen years of autistic refusal, but of clear behavioral specifications and that little counter.
. . .
Autistic refusal. It had been with her from the beginning, that hidden, withheld quality of so much she did and didn’t do, so that again and again we had to lure, almost trick, her into performing even activities that were clearly within her capabilities; so th
at again and again “couldn’t” and “wouldn’t” seemed indistinguishable. I had thought of that inertia as autism’s core, its deepest, most fundamental, most massive handicap.
I could scarcely believe, then, how shallow were its roots. The counter opened up an alternative explanation, less poetic than an existential refusal but closer to the facts of our experience. The contract worked because it showed Jessy exactly what to do and gave her a reason for doing it. The counter worked, with this child who counted before she could talk, for whom numbers possessed mysterious significance, because it provided for the first time a truly significant reward for effort. The tasks of development are hard; hard enough for normal children, harder for Jessy. She had not only to acquire ordinary self-help skills, but to surmount her communication handicap, to attend to speech and practice it, and to control her bizarre anxieties and the bizarre behavior that accompanied them. Why should she try to do these things? What motivates a child to grow?
Why even ask the question? Growth is “natural,” a child “develops,” its potentialities “unfold.” The words themselves, in their root meanings, proclaim inevitability. We think about the process only when it fails to occur. But consider the child born to autism, able to understand unvarying shapes, routines, rules, but lacking the ability to interpret the constantly shifting, interlocking, mutually dependent appearances that make up the contexts in which human beings carry on their lives. Such a child will have no reason to master those hard developmental tasks. The normal child has strong social reasons to undertake them, to use the toilet like Daddy, to tie its shoes like Katy, to say words, elicit smiles, hugs, approval. Praise encourages it to do what comes naturally even to our cousins the apes, to imitate and join the life around it, to grow independent, to grow up. Children want to be like other people, and when they fail they are embarrassed or ashamed. But Jessy had no idea what it was to be like other people; she was as immune to embarrassment as she was to emulation. Praise had been meaningless to her; it came at her out of the inexplicable universe of what other people think and want. When praised she had tuned out, or worse, stopped the behavior that elicited it. Now, in her fifteenth year, it began to take on meaning — as a side effect of abstract numbers, of the mechanical reinforcement of a golf counter.
One Friday, after a year and a half of contracts, Jessy’s teacher called; she had something important to tell me. “Jessy and I have made a decision. Jessy’s not going to work for points anymore, she’s going to work for praise.” And Jessy echoed, “Work for praise!” I was surprised at the suddenness of this unilateral decision, yet I understood it. The school had had nothing to do with administering the contract; Jessy had credited and debited herself, with the autistic, rule-bound exactitude that knows no possibility of cheating. But with her astonishing penchant for categorization, she had subdivided her list of behaviors, originally consisting of a few simple items, into a proliferating complexity of subitems, and true to form was now in danger of occupying herself more with counting clicks than with the behaviors themselves. I had tried to “fade the prompts,” to reduce the number of items — they now covered two full pages — but the system was Jessy’s, and it had taken on an autistic life of its own. Now I was told that Jessy and the teacher had decided to go cold turkey — no points, no contract. I didn’t think it would work; I anticipated a hellish weekend and a return to contract security, but I always support the teacher, and I said, “Fine.”
But it did work. All the behaviors were maintained. Jessy kept on setting the table, taking out the trash, washing her underwear — all the simple, concrete acts that the contract had first rendered possible, then automatic. And of course with every one, we praised. We smiled, we hugged, we said, “Jessy, that’s good, that’s wonderful!” And after each instance Jessy, now smiling in open pleasure, chirped, “Is this praise? Is this praise?” The counter had taught her to enjoy praise, she had agreed to work for it, and she didn’t even know the meaning of the word. Mathematical abstractions might be obvious, but not this kind of abstraction — social, relational, taking all its meaning from human interaction. I recalled an earlier lesson the contract had taught not her but me: that Jessy had no idea what I meant when I included such items as Saying Something Interesting or Doing Something to Help. I’d learned to specify, say, six helpful behaviors, to define subjects of conversation that might conceivably be considered interesting. From those specifics Jessy could begin to grasp the social generalization, even, over the years, recognize new examples of the simple social category that practice had rendered familiar.
. . .
Behavior modification worked miraculously at the swimming pool, when there was no real resistance and only motivation was lacking. It worked miraculously with concrete actions that Jessy could understand, that she could do easily if she would. Doing Something to Help, for example, brought in a host of new activities. Jessy, it turned out, was perfectly willing to wash, to iron, to vacuum the whole house, and soon did it “without told.” For things like these, the word “breakthrough” was entirely appropriate, and the gains were both permanent and significant. Every new occupation, after all, was an alternative to her sterile fallback activities, to sifting silly business or rocking.
In addressing the handicaps of autism, however, no breakthroughs occurred. As the months passed and behaviors like Hitting and Screaming and Touching People’s Clothes remained on the contract, or more discouraging still, were dropped only to reappear weeks later, it became clear that behavior modification was a method, not a magic bullet, a method whose limitations were as significant as its powers. It was too much to imagine that complex social concepts could be built up piecemeal from a collection of imperfectly understood examples. Jessy was enthusiastic about doing a Big Job, Medium Job, or Little Job for a graded number of points. She could even understand how these translated into Something to Help. Doing Something Nice for Somebody, however, was not so accessible. It wasn’t easy to make niceness specific, considering how much individuals and circumstances differ. In social experience, we concluded, the contract could at most begin a process. The writing, the reading, the explanations, the repetitions, could introduce an idea and reinforce it. That was hardly miraculous, but it was worth doing. Though behavior modification couldn’t teach sensitive, imaginative, individualized moral responses, though Thinking of Others was years down the road, focusing on the possibilities of Doing Something Nice was a step forward.
Similarly, points and contracts only made a beginning in modifying autistic behaviors. Yet those behaviors were the greatest obstacles in her social habilitation. These were the things that disconcerted people, annoyed them, upset and bewildered them, frightened them, even on occasion disgusted them. Mumbling, rocking, making faces. Hitting, of course. Screaming. Crying. And the myriad instances of social unconsciousness: how could they be distinguished from deliberate rudeness? So Jessy must learn to notice things she had never noticed. She must try not to push aside people in her way; try not to walk between people who were talking to each other; try not to walk away when people were talking to her. These were the behaviors that brought many penalties and few rewards.
We had held off introducing negative points for the first two months of contracts, until our warm Sunday routines had become habitual. Jessy didn’t like making her first subtractions, but among all the positives she soon got used to them. It was always possible to redeem a lapse by a Big Job, or using tenses correctly (we had put grammar in the contract), or diving from the side of the pool. Nor was it especially hard for her to control her more innocuous misbehaviors — those that bespoke not so much autism itself as immaturity and developmental delay. She could stop staring at dog feces if she got points for doing so. She could manage not to talk about people’s illnesses or handicaps; a penalty for mentioning the art teacher’s diabetes in front of him never had to be imposed. But points had much less power over the world within. The behaviors related to her obsessions and compulsions were much more difficult for
her to control. Yet these were the most disconcerting, the most unpredictable, the most bewildering of all.
She cried when her superball didn’t reach the seventh bounce. She cried when someone took her special seat (only she knew what made it special) on the school bus. She cried about “forgetting to look” at a particular billboard on her route. She cried about politenesses. She cried when somebody had a cold. She cried when she had a cold. And how she cried!
Much later, after she’d seen Rain Man, Jessy would call these hypersensitivities her “autisms.” * We called them her “allergies.” The word was more than a metaphor; her responses were as instant, as involuntary, as any allergic reaction. “Wee-alo, weealo,” she’d cry, “la, la,” her face distorted, her heart pounding, every muscle in her body tensed, her mouth open so wide we could see the flattened tongue within. Desolating for her, terrifying for the stranger, such extreme reactions overwhelmingly suggested a neurological base. So too with the positive reactions, with the shivering, unbearable intensity with which she experienced the too-good. She didn’t cry about too-good names and numbers and special words. But she wouldn’t say them, and lest she should hear them she covered her ears, smiling her secret smile. Harmless as that might seem at home, even, in moderation, charming, it was destructive of the focused attention necessary for school tasks. When Jessy was in Nirvana, she wasn’t learning.
Yet even over autistic behaviors the contract had some power. At the very least it made her conscious of what had been wholly unconscious. On one contract — it was the eighteenth month — I wrote down Jessy’s own triumphant words for her to savor: “This is the first time I didn’t mumble for whole week!” Though she mumbled the next week and many times thereafter, that was all right. Rome wasn’t built in a day.
Exiting Nirvana Page 14
