Thinking, Painting, Living, blended and inseparable. The same week I find she’s put away the onions and potatoes „without told“. I articulate it for her: „You don’t have to wait for me to tell you, you can do it for yourself“. More and more she can, and does.
A week later: I congratulate her not for a new accomplishment but for something she hasn't done. It’s been two days, and she hasn’t mentioned my cold. Of course I’ve hidden it as best I can, but she’s noticed it; I know because she took away my cloth napkin and substituted a paper one. And she hasn’t said anything. But now she beams; she reports she’s been practicing the cold scene slowly — S-T-O-P, R-E-L-A-X — so she didn’t have to cry. Or even snap. At last, she’s really using the scenes as they are meant to be used, for self-management, for easier, happier, ordinary living.
She won’t be, can’t be, fully independent, but she’s more independent every year. Two years ago she was anxious at the very mention that her father and I might take a trip: „But who will stay with me?“ But last year she stayed alone for two nights, having found it much more convenient to sleep in her own bed than at her brother’s. This year, when the housemates who hold the fort when we are on vacation asked was it okay for them to move into the dorms when school started, she answered, „Sure!“ Compulsions too are absorbed into daily life, may even become tinged with Thinking of Others. As I finish one bottle of vitamin drops, she opens the new one, knowing I have trouble with the childproof cap — having previously made sure, a week ahead, to buy the replacement, as the mental energy that once poured into the creation of systems flows constructively into forward planning. She’s decided, she tells me, to omit the canonical bacon from her
Sunday breakfast; she’ll need it to make the chowder tomorrow. Her heavy investment in order organizes the future, and we reap the benefits. She’s even being flexible.
The book progresses; it’s almost done when proudly she shows me a new scene. She’s titled it Thinking of Others and secured the cards with a lime-green paper clip. „I will think of others beside myself“, she writes carefully, and then, astonishingly, „I will think of how people feel“. She can’t make it more specific than that, and the applications will remain problematic. But the thought does count, and she deserves her imagined reward.
And yet — there’s always a yet — compulsions remain compulsions, perhaps all the more noticeable in their everyday setting. Jessy arrives back from work tense in every muscle; there was so much mail she forgot to drink water at 11:30. She d given blood the day before, and the nurse told her to double her fluid intake for forty-eight hours. I help her say the words: „No big deal“. But it is a big deal for her; she echoes another soothing phrase, „People do forget“, but her angry voice belies the verbal acceptance. Still tense, she decides „I will skip it that being what her drug manual recommends for a missed pill. It takes a good deal of logic to persuade her that if she wants to double her fluid intake skipping’s not the way. Autism is a lifetime condition.
These days, however, most of her discouragements and satisfactions are like those of other people — less interesting to read about than the joys and anxieties of her private universe, yet reassuring in their very ordinariness. Life for all of us is full of commonplace annoyances — things break, the hot water runs out when we’re in the shower. Jessy overreacts to these, and if she thinks she’s alone she may still invoke one of her bizarre phrases: „Oh well about the water hang hang!“ But life is also full of ordinary pleasures — chocolate chip pancakes, shared laughter, the return of friends. Such pleasures are less intense than the pleasures of Nirvana. But Jessy doesn’t spend much time in Nirvana anymore. Though Ecstasies are enveloping while they last, they don’t last long. She’ll happily emerge to tell us about them — if we don’t ask why she is smiling.
Thus life blends strange and ordinary, however the proportions change. Job, daily tasks, cookies to bake, perhaps even dinner to cook — Jessy is busy. And painting. How ordinary is that? She paints buildings now, and buildings are certainly more ordinarily found in paintings than the heaters and radio dials and electric blanket controls that were her chosen subjects fifteen years ago. And yet her buildings are extra-ordinary. The incandescence of their colors escapes the finest reproduction. There’s a rainbow in the boarding of a barn, set off, below the drainpipe that appears in so many of her paintings, against a deep, pure red. A small, high window is — let her tell it — „purplish ultra- marine“. The sky behind a multicolored skyscraper is strange too: „two different shades of salmon“, because „cloud disrupt the blending of stratification“.
Such colors seem so surreal that we like to imagine we are seeing the colors of her secret world. And in a sense we are; rainbows were for years a major Enthusiasm, and even now there are few paintings that don’t include some version of the full spectrum. Nevertheless, Jessy insists on the plainness of fact; she tells those who ask that she sees the same colors they do, just changes them to „make it more beautiful“. Similarly, if the inclusion of a drainpipe seems strange, it is our eye, not Jessy’s, that has turned autistic literalism into surreality. The drainpipe is not emotion-charged but ordinary; it is there because it was there, as her foot was there as she looked at her father in his wicker chair. Nor does it occur to her that there is anything odd about the migraine lightning behind her church. Lightning is lightning and migraine is migraine; why not combine the two?
If the paintings open into her private universe — and they do it is only secondarily through the color that reaches us. What reaches her, what illuminates the painstaking hours spent with her tubes and brushes, is the obsessional material. Shades of salmon are good, but what sets her smiling is the stratification. The word, with its many syllables, is a recent acquisition, but the Enthusiasm is not. Layers have been special ever since the days when she thrilled to road construction and pebblestones and tar. Heaters were special; lampposts were special; odometers were special; there are paintings of them all. Merrill Lynch and Godiva are special still, doubly special if you put them together. Left to herself, Jessy would paint an ATM machine; one day she prob-ably will. It’s such happy obsessions Call obsessions are good) that make visible the emotional intensity of her secret life. Realizing that, we realize that as we no longer even dream of a triumphant emergence into normality, we no longer even want her to exit Nirvana all the way. In a development we could never have envisaged, it looks as if she, and we, can have it both ways. Through art she can keep in touch with the underground springs of her emotional life without threatening her life in the everyday — that emotional life that is so much more thrilling than our own. It’s a life she has no words for, but it’s part of— perhaps it s at the bottom of — her oddly resistant happiness. Even if we could, we wouldn’t deny her that.
Yet painting, with its bills and checks and record keeping, is very much part of the everyday. Jessy paints, paintings bring checks, the numbers rise in her bank account as they once rose on her golf counter. The checks are a significant motivator for her, as the growing recognition is for us, who must answer inquiries and learn to negotiate the world of galleries and shows — social complexities forever beyond Jessy’s ken. But for us, and for her, what’s important about this demanding, absorbing activity, valued and rewarded by society, is not what it brings to her bank account or her reputation (a concept much harder to understand than stratification), but what it brings to her life. It interests people, predisposes them in her favor, encourages them to overlook behavior that needs overlooking. In autism, that’s important. Yet her painting’s real meaning for her life is even more ordinary. It gives her something to do. Something to do when she’s not forwarding mail, or changing the cat’s pan, or mending her clothes, or changing her sheets, or attending aerobics (a scheduled, repetitive, predictable, satisfying autistic activity), or making applesauce, or, as they say, whatever. But there isn’t any whatever for Jessy. Her expanded skills do not and cannot embrace the huge range of normality; she doesn’t know what to do with leisure. With nothing to do, she won’t go for a walk or call a friend. She reverts to the old, stereotyped behaviors. She still likes to rock.
So it is that her real achievements are in the realm of the practical, the necessary, the unromanticizable — the things that make her employable in the community and useful and welcome at home. How important it was that as a baby, however indifferent she was to others, she be attractive to them: clean, nicely dressed, no runny nose, no disgusting habits. We worked hard on that. Today she is still attractive, though not as lovely as that golden baby. Not that she cares. She has her hair cut unbecomingly short as soon as summer comes; when I suggest it’s nicer long she says it s cooler. She dresses neatly, but it’s not from any interest in her appearance that she lays her clothes out so carefully the night before; it’s because if she feels hurried in the morning, if she sleeps a single minute past seven-fifteen, she will be intensely, irrationally distressed at the deviation from this one of the many routines that structure and maintain her world.
Routine, autism’s curse and gift. Jessy is at ease only when what’s to be done is done. The distresses of deviation are balanced by the reliability and exactitude that make her an efficient mail clerk, and the daughter I couldn’t do without. Once there was no motivation, then there were points, now there is routine. Does she enjoy these tasks? The question is meaningless. She does them because she does them, because she is radically uncomfortable if they are left undone. However trying her compulsiveness may be for those around her, routine gets the work done, makes life livable.
