Exiting Nirvana Read online

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  Jessy’s “allergies” would have been unendurable for her and all around her if they had lasted. But though the pain was acute, it was transitory; when it was over it was over. An hour later she would be eager to talk about the behavior, the circumstances, the penalty, not merely without resentment but with enthusiasm. “I threw a scene in school. And I made a scream and a cry for two and a half hours. And I mumbled. And bang a chair and I broke a chair. And I bang the door! Crying for a long time is serious because it makes people so nervous they have to leave!” Jessy was full of smiles as she told me this. The contrast between the original distress and the subsequent cheerfulness was so striking that we began to think about how social unconsciousness could reduce the power of pain.

  So much of our pain is rooted in the responses of other people, or rather, in our perceptions of what those responses are or (even more painful) what they may be. Will people hate me? Not invite me to their party? Will they think I’m babyish? Worst of all, will they laugh at me? Jessy had many anxieties, but these were not among them. Autism was named from the Greek word for “self,” and self-involvement has its advantages. The common description for an autistic child is “seems to be in a world of his own.” Jessy was the center of her universe; now her own behavior had become not only a focus of attention, but a rich source of interest. We felt for Jessy when she cried and cried. We certainly felt for her teachers and helpers; we knew that for what Jessy put them through, “nervous” was a mild word, and that they did not recover from the experience as quickly as she did. Still, smiles followed tears; they kept working and Jessy kept trying, and together they moved forward.

  . . .

  Mingling pain and pleasure, contract and points, made possible the slow, partial, yet significant social gains of Jessy’s adolescence, while the social unawareness that rewards and penalties could scarcely touch preserved her from what would otherwise have been a continual series of assaults on her self-esteem. Children can be cruel in the face of the abnormal, but Jessy paid no attention to the names they called her. It was her friends from the art room who felt the hostility, not only that directed at Jessy — which, confronted with her indifference, soon stopped — but that which was deflected to them.

  Anna and Diana had become the special ed teacher’s assistants, and they paid a price. They were followed into the girls’ room, peeked at in the stalls, called whores who loved mentals. And here I must pay another of the tributes that are integral to this story. For of all us amateur behavior therapists, Anna and Diana were the bravest and the toughest and the most successful. I didn’t see what they did at school; I heard of the ugly names only much later. But for two summers they lived with us, and I still marvel at what they accomplished. In fact as I return to the notes I wrote then, I wonder if I haven’t undersold the power of behavior modification. It may well be that the limitations I have just attributed to the method, or to the intractability of autism, were in fact my own. For with counter and contract and humor and affection and teenage resilience, Anna and Diana took on autistic behaviors — not all of them but a lot of them — and triumphed. By the end of the first summer, Jessy, with points for Trying a New Food, was eating almost everything. She was no longer insisting that our salads contain only four stereotyped ingredients or that her food be served on her octagonal plate. As a bonus, that was the summer the twins set her to portraiture — for a reward, of course.

  Anna and Diana were much better than I was at thinking up rewards. Points were delightful when there were enough of them, but so were visits to the ice-cream parlor and the shopping trips Jessy loved and I hated. So was fun — fun that comes so much easier to teenagers than to a fifty-year-old mother. Watching the twins with Jessy, seeing that they really liked being with her, I realized once more what we are so ready to forget under stress, the supreme importance of gaiety and laughter. There is no more useful tool in living with autism than a kind of rollicking high spirits. “Assume a virtue if you have it not,” Hamlet told his mother. If you don’t feel like laughing, ham it up anyway. Laugh and the world laughs with you. To add glumness to disability is to double its crippling power. Jessy’s cheeriness still smooths her way.

  But the summer wasn’t all fun. Anna and Diana were also more steadfast in imposing penalties than I had been. Any account of our experience of behavior modification would be incomplete without Jessy’s hellos — not the automatic greeting she learned to make, but something very different. The hellos were so ingrained, so long established, that I had resigned myself to the idea that we, and Jessy, would have to live with them for the rest of our lives.

  For some years Jessy had suffered from a devastating verbal tic. At the end of every sentence —every sentence, sometimes every phrase — came an automatic, meaningless “hello,” often trailed by proliferating syllables that made her speech even harder to understand than it was already. I’d tried everything, I thought — coaxing, withholding favorite foods until they were properly asked for, positive and negative points. Nothing worked. The behavior, I decided, was simply not within Jessy’s powers of control.

  That summer, with Anna and Diana on board and Jessy’s brother to support them, Jessy’s father and I were able to go on a trip. When we came back the hellos were gone.

  They had been extinguished by the very methods I had given up on, applied with the severity I hadn’t been able to muster. A hundred negative points for each hello, hello. Add them up hello, two hundred hello, three hundred in a minute hello, thousands in an hour. Of course Jessy had screamed and wailed and shrieked. The teenage therapists waited it out. They told us how long the miracle had taken: four terrible, successful hours.

  The steadfast deductions were an essential ingredient in the mix that liberated Jessy. But they were not the only ingredient. Without the atmosphere of affection and mutuality the twins had created, I doubt any such miracle would have taken place. The twins did everything with Jessy. They swam with her, mowed the grass with her, hung up the laundry with her, and they did it all because they wanted to. She was their project and their pleasure; I could never have asked anyone to spend as much time with her as they did. They even extended mutuality to points; to Jessy’s contract for July 28, 1973, are appended contracts for Anna, Diana, and Paul, in Jessy’s own handwriting. Anna, like Jessy, got points for Trying New Foods; Diana lost them for Failing to Exercise; big brother penalized himself for Bad Words and Not Writing One Translation of a French Sonnet Every Week. Jessy’s counter got a workout, and everybody had fun. I’ll never know how much I could have accomplished if my love had been as tough as theirs, for you haven’t read this far without realizing that (though the hellos never came back) many of the problem behaviors are still with us. But to this day Jessy won’t snap at Anna as she will at the rest of us. “Anna is strict!” she says cheerfully when I ask her why.

  It was, however, another fifteen years before we came across a method that addressed directly the physical intensities that accompanied Jessy’s hypersensitivities. I met June Groden at one of those meetings of the Autism Society of America where assembled parents and professionals learn so much from one another. June knew autism, and she had been working with behavior therapy for many years. I told her about the obsessiveness, the hyperreactivity, the compulsiveness that still resisted Jessy’s efforts and ours. She suggested that Jessy, the contracts long behind her, might be interested in trying something new: “imagery scenes.” So Jessy, nearly thirty, embarked on a second therapeutic journey.

  What June had developed, in her school for autistic and brain-damaged children, was individualized scenarios designed to enable a person — he or she need not be autistic — to deal with the particular stressful situations that were causing trouble. The method is related to what is called in the trade “desensitization,” in which phobic patients are gradually accustomed to confronting and conquering their crippling fears. The twins had used it before they knew its name, when with rewards and jokes and fun and persisten
ce they had got Jessy to tolerate some too-good music. The Groden method also used rewards. But to desensitization it added relaxation.

  Relaxation, however, went far beyond soothing backrubs and useless exhortations not to be tense. It was a technique, to be taught and practiced. Like the contracts, it was specific, prescriptive, repetitive — exactly the kind of thing Jessy liked and could understand. And she could read about it in a book. 2

  Imagery scenes differed from conventional desensitization in another respect. Phobic patients confront their fears in actual situations. With imagery scenes the process, from original stressor to final reward, takes place entirely in imagination —except for the relaxation. That is real.

  June presented the whole thing to Jessy as an actual prescription, to be taken three times a day. It consisted of a series of five or six index cards. Typical is the scenario “Someone criticizes me at work.” That’s the first card. Then, “I get upset but I say STOP [Jessy has drawn a stop sign], RELAX [written in wavy capitals].” Next card: “I say to myself, ‘Everybody makes mistakes. No big deal.’” Next, “I feel proud that I handled it. My supervisor thinks I am a good worker.” Then the imaginary reward. The sequence was so clear that soon Jessy was creating her own imaginary scenes. And that was the point; that Jessy should control the whole process, from the determination of the stressor and the identification of the problem behavior, to the choice of the reward, taken from her treasury of Enthusiasms.

  Like the contracts, the scenarios work by focusing attention. But with these too autism may shift the focus from the purpose of the process to the process itself. Jessy is delighted to talk about her scenes, which now (of course) have proliferated to several hundred. But she is as likely to fix on the multicolored paper clips that keep them neatly separate, or on the fact that a series has five cards rather than six, as on the problem behavior. Pattern, color, number — these are still the things that are intrinsically interesting, worth thinking about and talking about, over and over again.

  Jessy has practiced her scenes daily since the early eighties, for like the contracts, they are no simple panacea. It is a lot easier to imagine a response than to summon it when needed, especially since in her intensest distress, Jessy doesn’t want to relax. And although I’m not around when she goes through her cards — it’s important that the process be self-administered — I can guess that a process so often repeated becomes a mechanical routine. Nevertheless, Jessy invokes it not less but more and more as she grows older. Caught up in some overreaction, to a what-question, to a cough or a sneeze, she’ll say, “I must practice my scenes,” and depart for her room to do just that. The cards empower her to control — not always, not entirely, but often — behavior that would make it impossible for her to live and work in a normal community.

  A sequence from Jessy’s card system for relaxation.

  A few months ago I congratulated her on how much less she’s been crying these days. “I can’t remember,” I told her, “the last time you cried.” “October 14!” she says, then adds: “Must be the scenes helped!” And she’s just created a new scenario, “Waiting for People to Get Passed (First Come First Serve).” “I want to pass by or use something, but someone is there first. I think to myself it’s not very long. I can do it. I STOP and RELAX. Reward! Then let people finish what they’re doing. I feel proud that I didn’t bonk people, knock on the door, or barge in.”

  Jessy’s had a fine time while I’ve been writing this chapter. A delighted collaborator, she has happily listed for me her recent rewards. They are autism at its peculiar best. Jessy’s rewards are nothing like the imaginary chocolate chip cookie June originally suggested. The twenty-nine items include, along with auroras and four kinds of eclipses, Route 7, south of Great Barrington and north of Manchester Center, and a “refrigerator set at vacation mode.” The only one that is at all predictable is “double or more fortune Perugina Baci chocolates.” We turn to the past: she may not have much interest in her old books, but she reads every word of the contracts — pluses, minuses, the record of almost two years of struggle. She regards it all with happy equanimity. I’m not surprised. I remember her comment on Darth Vader, who was famously bad but “turned out to be a good guy. I guess he learned from consequences! Like me!”

  CHAPTER 11 “Guess what! Some of the people at work are my friends!”

  Jessy is still learning from consequences. Now, however, penalties and rewards arise naturally out of the situation — just as they do for Darth Vader and the rest of us. If she’s rude in the restaurant, she won’t get to go next week. But Jessy is no longer limited to direct experience. Growth and the years continually open up new avenues of social learning. There are movies; there’s TV. Above all there is print. The hard work of her teachers has borne fruit. Jessy can read.

  And she does read. Slowly willingness and skill increase together, and with them knowledge and to some extent understanding of the world she lives in.

  . . .

  When school ended for Jessy some twenty years ago, her reading — after nine years of intensive effort — was just adequate for simple, factual, predictable material. An unwelcome task at school, at home it was limited to things with a clear payoff, like cookie recipes. Without support, reading threatened to join the other skills that had withered from lack of practice. Jessy had learned pottery, knitting, needlepoint, even weaving, from one young helper or another. All, though she had seemed to enjoy them, were abandoned when the companion left. She certainly didn’t enjoy reading. Yet she needed to read daily, and not only recipes. She needed to read stories about people and the things they do. Yet the last story we’d read at home was a four-year-old’s picture book, with no more than a few sentences of text.

  But I remembered how she’d enjoyed reading the contracts. Those too were a kind of story, a story about Jessy and the things she did. That pointed the way. We would read as we had then, together, comfortable, warm and easy.

  We read aloud, to rivet attention through both eye and ear. She resisted at first; I recognized the old inertia. But I didn’t want to tackle it with a reward this time; that wasn’t what reading was about. So I went back to earlier methods, luring her to read as I had lured the toddler who couldn’t tolerate something missing into putting rings on a stick. Then I had put on all the rings but one; now I read, stopped, and Jessy supplied — she had to — the next word. First the next word. Then the next sentence. Then we took turns, so Jessy had to follow each sentence and couldn’t tune out. And then she began to follow the story within the sentences. Touchingly, she asked for stories about “girls who misbehave.”

  We read book after book. Laura Ingalls Wilder’s Little House series might have been designed to fill in the gaps for a person without a childhood. Not only does Laura misbehave, she grows, and the books with her. She’s four in the first book, and her short, simple sentences were easy even for Jessy. Soon Jessy claimed as her own any paragraph that had Laura in it. She was less interested in personalities, of course, than the concrete things she could understand; to this day she can tell you about the long winter (“from November to the end of April”) when the train couldn’t get through and the Ingallses almost starved. But we pressed on through adolescence and got Laura married before we found Beverly Cleary’s Ramona series. That was better yet; Ramona was five at the start and really misbehaved; she had tantrums and lay on her bed and kicked the wall. And as Ramona grew and went to school and struggled to control her temper so people would like her, Jessy’s language and social comprehension expanded together. Year after year we went through series after series about girls and families, in the Midwest, in Norway, in Brooklyn, before we got to Dorothy and Oz. Then we stopped. Jessy didn’t want me beside her anymore. She was probably tired of my running commentary — it was too much like a lesson. But she kept on reading.

  Jessy has been reading Oz books ever since; so far she’s read thirty. (There are thirty-seven in the series, and Jessy doesn’t leave things unfinished.) She�
�s read about witches, good and bad, about princesses and queens, about Polychrome the rainbow’s daughter, who’s particularly interesting to a colorist like Jessy. When she finishes a book she tells me the story, though as the plot dissolves in a jumble of details, my mind begins to wander. She enjoys the queens and witches, but what she uses is the information. When her interests turned from astrothings to real estate and banks, she was ready with what she’d learned from Oz. Banks lend money; Dorothy’s Auntie Em and Uncle Henry lost their farm in Kansas when they couldn’t pay the mortgage, and Auntie Em cried. Fortunate, then, that they could be transported to Oz, where, Jessy tells me, there isn’t any money. Out of fantasy Jessy plucks realism; in Oz there are magic trees, but hanging on them are lunch-boxes with ham sandwiches. In Oz she learns new words and concepts: “revenge” (tit for tat!), “enchantment,” “oblivion.”

  Jessy has read about Willie Wonka and the chocolate factory, about James and the giant peach. But as with other autistic people, her primary interest is not in fiction but in fact. Oz is for vacations, when she has nothing else to do. But she scans every issue ofThe Harvard Health Letter, on the alert for items about drug side effects and the common cold. She checks out diseases in her medical encyclopedia. She reads the stories I’ve marked for her in the newspaper, her interests expanding from fees and ATM’s and accidents on Route 7 to hurricanes in the tropics and blizzards in South Dakota. That’s where the Ingallses had their problems, I remark, but Jessy supplies a nearer point of contact; her supervisor at work, an important person in her life, was stranded in South Dakota when the airport closed and has just got back. Maybe, Jessy suggests, we should send diapers and canned tuna fish to South Dakota; the news report says they are needed. So Jessy reads and thinks of others, as her world grows larger.