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 numbers, 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
