Nirvana was increasingly under siege. It had been a long time coming, but Jessy, now thirteen, was at last in her local public school — not for a short morning but for a full school day, with teachers who, however bewildered (few had even heard of autism then), tried every way they could think of to teach. It wasn’t easy, for them or for Jessy. There were bells that outraged autistic ears, demands that infringed autistic aloneness, changes that disturbed the autistic routines that kept her world in order. At home, though banshee shrieking could be more than we could bear we had learned to bear it; school could not be so tolerant. At home there was no boundary between teaching and play, we knew her capacities and kept within them; she knew little of the frustration of failure, and lessons stopped when her attention wandered or she refused to answer. Now there were errors that must be corrected, scoldings when she veered into nonsense or something set her dreaming. „Why are you smiling?“ We had played for years at reading and writing; now she must work.
Jessy’s books from these years are very different. I did not realize how different until I emptied the suitcase and found nine different Books About the Bump. As Jessy explained later, „Somebody bump me, hit me, kick me back“. Because she did kick people sometimes, and hit them too. And she was hit. A schoolmate bumped her. A companion bumped her „because I scribbled“. Her sister bumped her „because I threw a tantrum“. Her father bumped her. I bumped her. And each bump was memorialized in a book.
Rooted not in derivative and stereotyped plots but in daily experience, the books of Jessy’s adolescence were far more creative than the books of childhood. Page numbers were pressed into self-expression: she designed a font of „silly-looking“ numbers for bad days, contrasting with „fancy numbers“ for good days and „a little bit fancy for fairly good day and regular day I wrote down a regular number“. Grotesquely tall and narrow, bad numbers reached from top to bottom of a large page, while bumper and bumpee climbed up a 2 or hung from a distorted 3. The title of one book was made entirely out of small leaves, gathered for the purpose and carefully taped down. In another, every letter of both title and the final THE END was itself composed of neatly lettered BUMP’s, in another, of 70003 s.
Some books were neutral records of events — there are three about local fires. But more typical were the books about anxieties or obsessions. There are three books about seeing the light in the science building. In the books Jessy kicks the building; at home she screamed and screamed. Shadows were an obsession of an opposite kind. They were „too good“ to walk through — she had to squinch her eyes shut — and there are many books in which shadows, of buildings, of furniture, of numbers, even of stick figures, are shown with a startling realism.
Though most drawings are in ink or pencil, one is striking for its color. Jessy wrote Book About the Shadow when she was fourteen. The first three words are in her newly acquired cursive. SHADOW, however, is in my capitals; it was „too good“ for her to write. The shadow of the penciled house on the cover is too good» indeed, its emotional intensity conveyed by a surreal harmony of concentric rectangles in shades of blue and lavender and green. Inside pages (with «fancy numbers») show nine different buildings with their shadows, each as it appeared on a particular date at a particular time of day. All are done from memory; three years later she supplied the dates and times. Usually Jessy appears alone, eyes tight shut, walking in the shadow. In one drawing, however, I am with her. She, not I, recalled that building in a distant city, and how we walked through its shadow together. But I know when we took that trip, and her date is correct. I am glad it was a good day, and that no cloud covered the sun. «I used to care about that. It was important for me having a good day. It isn’t anymore».
There were other good days. Stars were becoming «too good», and Thanksgiving 1971 produced a Book About the Star, a star enclosing each page number. On one page a bowl of star-filled soup is set ready, each bit of chicken and carrot carefully colored in. «Chicken and stars mean too good to eat».
But another book for a good day shows the peculiar doubleness that haunted Jessy’s obsessions. The Book About the Record was «good because I heard the song called ‘The Hangman’» and the hangman was good — too good, as we were to learn. Page numbers are fancy, and both title and THE END are made of phonograph records. The drawings show a record player as its tone arm progresses through the record’s two sides. The hangman song is on side 2, but the record could bring sadness as well as pleasure. «I used to fuss about not hearing the first three songs on side one».
Pages from the Book About the Shadow.
It was the hangman that inspired the most arresting of Jessy’s pictures, one of thirty-two made on a companion’s suggestion that she illustrate each of the songs they sang together. To see the rendition of «God gave Noah the rainbow sign» is to realize the meaning of autistic literalism; on a signpost is an actual sign, striped with the rainbow. But it is the illustration for «Hangman» that grips the attention. Against a purple sky, a figure, flesh- colored, naked, hangs on a brown cross. His large eyes are wide open, and startlingly blue. Jessy had not forgotten the crucifixions in The Treasury of Art Masterpieces, but «Hangman» is not about Jesus. «Hangman, hangman, slack your rope, slack it for a while.
I think I see my mother cornin’, cornin’ from many a mile». Jessy drew no hooded executioner, no «gallows pole»; she knew nothing of these things. The hangman is quite simply a man who hangs, as a rainbow sign is a sign.
The rainbow sign.
The hangman song was good in the Book About the Record; in the Book About the Songs it was weirdly neutral. But there was trouble ahead. A hangman might hang on a cross. He might hang on a tree. He might hang on a clothesline, suspended from an accurately drawn clothespin. He might not hang at all, but skip and jump, depending on. well, what it depended on was so strange that it requires a paragraph to itself.
The hangman, drawn to illustrate a favorite song.
The hangman, drown to illustrate a favorite song.
For years we had tried to get Jessy to say «please» and «thank you». As she grew older we tried harder: good manners are even more important for a handicapped person than for the rest of us. Jessy hated to say «thank you». She would overcome her resistance for birthdays and Christmas, shutting her eyes and rushing the words out as fast as she could. Soon she reacted to the very sound of what she called «politenesses». She would refuse to offer a guest a plate of cookies, lest she should hear a «no thank you». A «late politeness» could ignite a full-blown tantrum, while the bewildered guest wondered what he’d done wrong. «The hangman makes a sad face and this makes me go wild».
«Every time there is a late politeness hangman will hang on the tree and every time a mistaken politeness» — I still don’t know what that might be — «hangman will skip around. How about latest politeness ever? Hangman will hang on the largest tree. How about late mistaken? First skip around and then hang! How about high politeness?» (I.e., spoken in a high voice.) «Hangman will jump way up high».
In short, a system; her drawing shows eight levels of late and/or mistaken politenesses in which eight color-coordinated hangmen jump higher and higher on successively bigger trees. A late «you’re welcome» has its own picture. «The hangman hangs by the clothespin because of new politeness». Jessy, who had understood so few words, was now verbally alert — in her way. On the drawing she lettered YOU’RE SO WELCOME, YOU’RE QUITE WELCOME, YOU’RE VERY WELCOME, YOU’RE MOST WELCOME, YOU’RE SURELY WELCOME, YOU’RE CERTAINLY WELCOME, YOU’RE MOST CERTAINLY WELCOME, and YOU’RE MORE THAN WELCOME. Eventually she told us why she didn’t like politenesses, why she had to shut her eyes. It was so she wouldn’t see the hangman, there in my eyes, in anybody’s eyes, hanging on a pole.
* * *
Obsessive-compulsive disorder is a diagnosis; it is not usually thought of as a kind of thinking. In Jessy, however, obsessions and compulsions supplied both the material and the method of thought. Her systems, her number
s, her elaborate correlations, were integral to the activity of her mind. I don’t know how neatly Jessy’s array of strangenesses fit into the obsessive-compulsive box. Sometimes they seem too strange for any box but her own. Yet it seems a good enough label, though we’ve managed to get by without the drugs that are prescribed for it and that might indeed have made those hard times easier. Categories bleed; diagnoses in a given individual may never quite fit. Hypersensitivities, Obsessions, Compulsions — let the label, then, be a convenient shorthand for the oddities of thought, and feeling, and behavior that Jessy and we lived with.
Can an obsession make you happy? «I had a good time in school today because there was construction in a picture». At seventeen, the very thought made her smile — and draw her own picture of «layers of road which has three different layers of tar». Obsessions can certainly make you sad — along with everybody around you. Colds in the family make Jessy sad, for a very practical reason; she’s afraid she’ll catch one. We’ve learned to hide our symptoms as long as we can, for though she hates colds, she loves to talk about them. She’ll rehearse the dates and circumstances of each of our colds years after they should have been forgotten — tedious talk, obsessive talk, talk that can have the effect of the Chinese water torture, especially when you’ve got a cold.
* * *
Most of her obsessions showed this doubleness. Pleasure might turn to pain; «too good» meant you couldn’t stand it. Bad remembered might bring pleasure, as she laughed about the very thing that had set her crying. What more satisfying than to recall past distress? By the time she was in her twenties she made no more books, but she spent hours on listing her «discouragements» — five pages, twenty-two items with numbered subdivisions in proper outline form. «5. Run away if the refrigerator turns on after or while the door is opened, both bother me». «6. Discouragements at work»: «Making errors while working», «Writing down wrong price and pressing wrong keys on the calculator», «Putting a piece of mail in the wrong box, wrong names in the right box, and repeating boxes after somebody already fill them». She’s bothered by «being helped while working»; a coworker is all too likely to «mix hundreds, like 2471 mixed with 2500s and 3071 mixed with 3100s». These are the kinds of things that can (but today seldom do) cause her to «cry silently» at her desk, only to erupt as soon as she is on her way home for lunch. Today this rarely happens. Still troublesome, however, is number 7, «Questions that bother me».
A. What questions. What? What are you making? What are you doing?
B. Who questions. Who is somebody. I try to prevent them by identify people’s names.
C. Questions of happiness. Why are you smiling? I don’t like them, because they are too good to answer.
A couple of years later Jessy annotated her list, with characteristic precision. Her aversion to being helped was «outworked by fall 1986», number mix-ups «reduced a bit by 1987». Last year, rereading this list, Jessy made a philosophical comment. «This is what my life like. Like anything can be worn away and replaced by new things. Bad or good things. Like good things and discouragements both worn away». Jessy no longer makes a fuss if I forget to take one of the pills she so carefully counts out for me each morning; she can make sure I take it at lunch. She’s more anxious if it rolls under the fridge; she’s anxious if anything is missing, and if she hasn’t noticed, we don’t tell her. Because if we do, she’ll go on and on and on about it, reminding us yet again that her brain is simply not good at switching from one channel to another. Lucky that a helper gave her the phrase «Drop it like a hot potato!» She thinks it’s funny, and if we say it loud and sudden and with a laugh, it can break the connection so she too can laugh and move on.
But only a very few of these discouragements are completely «outworked». Jessy comes back from checking the boiler in the cellar. (Compulsiveness can be a valuable characteristic when tasks must be done regularly, and we need never fear that Jessy will forget to change the batteries in the smoke alarm.) In winter checking the boiler is routine, but today is different. Her face is radiant. She’s made such strides in self-control that I feel I can take a risk. I don’t ask «Why are you smiling?» but I approximate it. «What a happy face!» I say, hugging her. She accepts it, still smiling; she even answers the question she hears beneath my paraphrase. «The dryer going». «You like that?» «Yes — because of things going round and round!» But we’re not home free. «I did get annoyed about that. I smiled about the dryer going» — and she begins to whimper, almost cry. But that’s all this time — it’s over, it’s OK. That what our life like, tears and sunshine mixed. Yet Jessy insists on accentuating the positive. When a friend asked her what was her favorite obsession, he was told in no uncertain terms, «All obsessions are good!»
* * *
We read often that autistic children are deficient in imagination, in «pretend play». «Current diagnostic schemes pay particular attention to the abnormal lack of imaginative activity». «The lack of creative play [is] as unique and universal a feature… as [is] communication and socialization failure».[26] Few who have watched a child repeat the same sterile lineup over and over will disagree. Grown older, autistic people who read tend not to read novels, with their confusing representations of a social world that is confusing already. Secure in the stability of fact, they navigate poorly among fictions.
Yet what about Jessy’s little imitation people? About her house plans with tiny steps so they can reach the china cupboard that is their «hotel»? «They rent different rooms in the hotel, just about a dollar a month. Sometimes they have slumber parties. A long time ago they used to live in the summer house but they moved during fall in 1972». What about the «make-believe forest where the Piper Cleaner family went during the party»?
«Make-believe» — exactly so. Jessy has always been quite clear about what is make-believe and what is real. (She was nine when she drew herself, Big Girl Jessy, crayon in hand, holding what was clearly her own drawing of a Piper Cleaner person — see page 178.) Often anxious, she was never fearful; real fear requires imagination. Jessy was immune to the usual fears; we used to think of her as the child in the fairy tale who didn’t know how to shudder. There were no monsters under her bed. She was never afraid of the dark; it was the neighbor who was concerned when he found her sitting alone, lights out, one evening when her father and I were elsewhere. She wasn’t upset by blood; at twelve, when her periods began she was exultant that what was predicted had occurred: «Blood did come!» Though today she is a regular blood donor, her satisfaction has little to do with altruism. «Into the small tube! It was fast! How fast! Too good to see! That’s why I’m closing my eyes!»
There were dragons in her picture books, but Jessy did not imagine what dragons might do. She did not imagine what dangers might lurk in the dark. Blood did not make her think of wounds and death but of a regular appointment and a heart- shaped sticker. Menstruation was simply something that was supposed to come and did; she did not imagine the social anxieties of puberty. And yet she imagined the little people. Little imitation people, flavor tubes, elaborate, proliferating systems — so many glimpses of what a flawed but vigorous mind may create when, barred from ordinary experience, its energy flows into the limited channels of its comprehension.
* * *
We had no idea of encouraging imagination when we drew so much with her, looked at so many pictures with her, filled her room with dolls and doll clothes and doll furniture. The absence of pretend play was not yet a diagnostic indicator, far from it; in the Bettelheim orthodoxy autistic children suffered from too much imagination, from noxious and terrifying hallucinations they could not distinguish from reality. We were just doing whatever we could think of to enrich her life. Jessy might line the dolls up on the dollhouse roof, as later she would line up her number people, but at least she wasn’t sifting silly business.
But looking back over the record of Jessy’s early years, I am struck by how often our groping play was, in fact, teaching her to pretend and
enjoy it. Jessy was four when her father pretended to put her to bed on the kitchen floor. She was six when her siblings amused themselves getting her to mime them as they «died»; she learned it was fun to gag and choke and collapse on the rug. She’d laugh when her sister played «sad» with crocodile tears, though she knew what crying was. She might line up her dolls, but she gave them names, and once I even heard her tell one to «Eat up, dolly!» Recent work with autistic children shows that though pretend play, like other social behaviors, doesn’t develop spontaneously, it can be taught.[27] Unconsciously we taught it, making the little people possible, making it possible for Jessy to think and say, years later, «Pretend the sun is the parent and the planets are the children and the earth is me!»
Nevertheless, the limitations of autism remained. The Piper Cleaner family were dependent on Batman and Harold for their activities; a year passed, and they were still enacting the same plots. The little people who later lived in our appliances, having no such originals, had no plots. Instead they had elaborate kinship structures, inspired by our lessons on the shifting words for family relationships and by the families of people she knew. «Guess what! The oven is a make-believe family also! Noise of the oven same as the buzzer of the washing machine. This part of the family has only two children and both get married and one of them has children and the other don’t. And there are four parts of the family. Remember our family has two parts. Second part are my cousins. Stove has three sets of cousins. Some of the sisters and cousins are Karens. There are two Karens in two different sets of cousins and both didn’t get married. Too young».
Exiting Nirvana e-2 Page 10