Jessy was in her midteens before she could understand a concept like flexibility. But when she did, the phrase became another means to focus her mind on the importance of learning to accept the changes that upset her so. We’d been nudging her toward flexibility all through childhood: now we could talk about it. Altered schedules, unexpected guests, lost objects, overlong phone calls, power outages — no household can eliminate them, and no household should try. It’s all too tempting, in the interests of peace and quiet, to imprison a whole family within the unbreakable routines that structure the lives of people with autism. To survive, families, and teachers — and employers — develop ways, not to avoid such disruptions, but to minimize the overreactions they trigger. Jessy can accept changes if she’s told ahead of time; predicted, they can be absorbed into the reassuring order. (She can even accept a what-question if she knows it’s coming.) „I will prepare myself“. Negotiate the change in advance, allow her the time she needs to shift gears, and she can be flexible. Routines can be varied. In familiar areas, negotiation is no longer necessary, or rather, Jessy negotiates the adjustment with herself. It’s another reason to feel proud of herself. „I was flexible!“
Inflexibility, of course, continues. Not every change can be predicted. Jessy gets used to working late at the busy startup of college, but when things calm down and overtime is only occasional she has to get used to it all over again. Best to recognize the uses of inflexibility, limited but real. Our household runs as smoothly as Jessy can make it. Though a quarter of a century has passed since she earned points for taking out the garbage, she has never once had to be reminded. Vitamin pills, accurately distinguished and distributed, appear by our plates every morning. At the risk of being nosy, Jessy checks the calendar for our appointments; she’ll be more upset than we are if we forget one. We enjoy as fully as we can the accuracy and reliability that are the marks of her condition. They are valuable qualities, in the workplace as at home. Accuracy and reliability are what she brings to her job, the job that has been, and remains, Jessy’s greatest social challenge.
* * *
It is also a challenge for everyone around her. Jessy’s supervisor knows her as well as anyone outside her family and longtime companions. Though she has not studied autism, she is an expert. The employee evaluation forms she fills out could stand as a textbook review of autism’s diagnostic indicators. „Jessy performs her work swiftly and thoroughly, if routines are not changed. She is a creature of habit, and does not like to be interrupted. So knowledge of the job, productivity, accuracy, and neatness are all marked Above Standard, as are punctuality and adherence to work schedules. There, however, the good news ends. „Jessy is unable to work without supervision“. Initiative, ability to accept new procedures, acceptance of constructive suggestions, and adaptation to changing conditions are all marked Unsatisfactory. „Jessy follows daily routines, and dislikes changes in work conditions. She does not accept criticism well, and usually answers ‘I don’t know’ [like Rain Man!] to most inquiries. She is unable to judge what to do in emergency situations“.
Relationships with the public and other mailroom workers are Fair to Poor. „Jessy is friendly, but has the tendency to correct her student coworkers. We would hope that Jessy, in the future, could concentrate on her own work and leave corrections and supervisory matters to the designated individuals. She needs to be more polite with the students who use the mailroom“. Jessy’s supervisor is kind and patient. But there’s a limit to the amount of patience we can or should expect. So we work hard with Jessy. Don’t be nosy. Don’t check the work on someone else’s desk. Don’t touch anything on someone else’s desk, especially your supervisor’s. Don’t correct your coworkers; „be silent like a cat“. Be flexible. And Jessy does her best; she tries hard to control her overreactions when somebody makes an error that anybody but Jessy would recognize as trivial. But though she can talk about getting her priorities right, it’s hard for her to do it. She’s known for twenty years that she cannot scream on the job; that she would certainly be sent right home and lose a day’s pay; worse, that she might, in her own words, „get a pink slip“. Though after twenty years that’s probably not strictly true, it helps her to think so. Points long gone, the principle remains: there are some things that if they are to be controlled require a really significant penalty. As far as I know, this one has been effective; she has never screamed at work. Nor does she snap as she does at home. A workplace snap, in fact, provided one of her few „Knightmares“.
„I dreamt about snapping at work about what-questions, that I lost my job“. I’m sorry about the nightmare, but I’m glad she cares about the possibility of a pink slip, that she knows how much she needs her job.
Jessy works a six-day week in the mailroom, 9 to 4:30 with a half day on Saturdays. Jessy’s job provides the structure for her day, and for a life that, lacking ambitions and goals, is made up of days. It is her job, and only her job, that ensures daily contact with people outside her family. Her job, not her painting, is her greatest achievement. Her painting, however brilliant, is solitary. The job is social. I know of autistic adults with higher degrees who have been unable to get, or keep, the job for which their education seems to qualify them, because they have not adapted even as well as Jessy to the social requirements of the workplace. They are some of the unhappiest people I have ever seen.
* * *
There was a time when Jessy kept her journal regularly. In it she recorded, along with Discouragements, her Enthusiasms, even Ecstasies. I copy here two very different Ecstasies, because they are both work related, and because they express, better than I could, the satisfactions and challenges of autism. The first, dated 5/10/94, reads as follows:
The solar eclipse started at noon and ended at 3:30 PM. I looked through the Eclipse Shades, alternate with the pinhole cardboard. It was almost annular at 1:40. I noticed the shadows were sharper. The leaves were crescent.
That, though it took place in working hours, was a wholly solitary ecstasy. Out on the grass outside the mailroom, surrounded by people also looking heavenward, Jessy was alone, caught up in autism at its happiest, as the brightest and best of astrothings went into the rare wedding ring eclipse that would later find its way into a splendid painting. But autistic happiness is no better adapted to the workplace than autistic distress. Jessy, as I learned from her supervisor, was continually running in and out to check on the shadow’s progress. Ecstasy meant the employee whose best attribute was reliability was not on the job.
A few months later, however, Jessy recorded another work- related Ecstasy. This one was at the opposite pole, not solitary, not a distraction from work, but social. „Just before going to bed“, she wrote, „I got a 100 % dinner invitation“, the college’s reward for employees who in a whole year had not missed a day of work. That Jessy was pleased, proud, that she went to the dinner and enjoyed it, that she was recognized as a good worker in a way she could understand — all that is a measure of social growth that could only take place in the context of her job. This year — incredible anniversary — she’ll go to the luncheon for twenty- year employees. She’ll go alone. Though I accompanied her to the 100 percent dinner, that was six years ago. I don’t need to anymore. She knows how to do it now. There won’t be much casual conversation, but she’ll manage.
Still, social growth in autism is an uneven process. There’s the student who told me that when Jessy smiles at him it makes his day. But there are also less encouraging incidents. Jessy went to the restroom one day, a year or so after the recognition dinner, and came back to find the chair she’d vacated occupied by a coworker. Without a word, she plumped herself down in the young woman’s lap. It didn’t make her day. „She criticized me“, Jessy told me. I can imagine she did. Some things are funnier to read about than experience. But it is her supervisor, who observes so carefully and records so truthfully, who should have the last word on autism and employment. When she saw Rain Man she commented, „I don’t see why he h
ad to be in an institution. If Jessy can hold a job, he certainly ought to be able to“. And with a lot of help, Jessy can.
* * *
Friendliness is learned among friends and social behavior in society. That society has opened up a place for Jessy is what, more than anything else, has made it possible for her to live in, even contribute to, the community she was born in. Ordinary people will be extraordinarily helpful when they know how much they contribute to Jessy’s development. Storekeepers, bank tellers, checkout clerks, like supervisors and coworkers, will be patient, smile, and make allowances, as long as the behavior they see is not too disruptive and bewildering. They will smile out of the goodness of their hearts, and once they involve themselves they will smile because they see progress and know they have a part in it — a part more important than they can ever know. Let Jessy herself close the chapter:
„Guess what! Some of the people at work are my friends! Jim, and Betty, and Mary, and Diane, that pretty girl, and Ginny, and Karl, and Carol that I pounded on the door, and Gary who is fat but I won’t say that to him. And I will make them all paperweights for Christmas!“
Chapter 12
Valedictory
I will make them paperweights“. It comes out easily, as it should. It feels easy, in her mouth and at her painting table, where soon she will transform beach stones into colorful gifts. Jessy’s used to giving Christmas presents. But of course the giving of presents, like any other social transaction, is easy only if you know how. Even for normal people, Thinking of Others requires education. Jessy’s learned the general principle: you should do it. But that’s quite different from applying it in particular cases.
Seven years ago, entirely spontaneously, Jessy gave me a Mother’s Day present. I was accustomed to Mother’s Day cards; Jessy never misses a holiday. But I wasn’t expecting a present. I certainly wasn’t expecting this one. Elegantly wrapped, it contained a can of cat litter deodorizer — Jessy takes care of the litter pan — and one of those little give-away packets of strawberry jam.
Now, Jessy’s not a tightwad. She long ago became acclimated to taking money out of the bank as well as putting it in. She was perfectly willing to contribute five thousand dollars to the renovation of our kitchen. But with the best will in the world, Thinking of Others runs into problems if you haven’t got a working theory of mind. So most of the time we prompt and suggest. Painted paperweights, one step up from cards. For very special friends, a painting. Repeated suggestions become internalized; for birthdays, Jessy knows we all like a homemade cake (although if it’s to be anything but chocolate we put in a special order). Beyond that, it’s best to follow the example of Anna and Diana, always practical, who specify exactly what to buy and where.
* * *
The experience of autism has many ports of entry. Presents are as good a way as any to begin this valedictory chapter, the chapter of Where Is Jessy Now? Categories bleed; Strange morphs into Ordinary, and back into Strange again. Or we can reverse the terms, since with Jessy they have no clear boundaries. If it ends with Ordinary, it will still be Strange enough.
* * *
The identification of suitable presents is a regular pre-Christmas activity for Jessy, and for us as well. If practice doesn’t make perfect, still, as we talk about friends and the things they like, individualities come into sharper focus. Rachel likes cats; Drew likes football; Betty likes flowers. Different people like different things. But finding the right present for Jessy herself presents its own challenges. Rachel likes cats, but what does she crave? Back in Nirvana the two-year-old wanted nothing enough even to reach for it. Even now, any one of us could list ten desires for every one of Jessy’s. Forget jewelry. Forget clothes; her attitude toward them is strictly utilitarian. Records, once „too good“ to listen to, she now doesn’t play at all. Stars and rainbows, the old standbys, are too familiar to cause a thrill. But study her current enthusiasms. How about a birthday cake iced as a bank? A copy of The Physicians’ Desk, Reference for Nonprescription Drugs? A medical dictionary? Find the right present, and Jessy’s face will light up to illuminate us all.
Her siblings, with forty years of experience, are artists in choice. Sheets emblazoned with Hershey’s Kisses. Sweatshirts bearing her own magic phrases. An assortment of cold remedies. And, this Christmas, a stroke of genius: a regime, a system of skin care. An array of tiny bottles, face creams, body creams, lotions; a brochure of complicated instructions for each; night/day, dry/oily, sensitive/normal; permutations and combinations, endless material for contemplation — and conversation, for Jessy’s enthusiasms are no longer too good to utter. All unbelievably expensive — except that the little bottles were advertising samples and the brochure was free.
The cosmetics company, however, lost nothing by such generosity. Jessy’s next stop after Christmas is urgent; the person who craved nothing (unless you count chocolate) has something to buy. Where is she now? She is at the mall at opening time, engaged in what is surely a typical, age-appropriate American activity, shopping. There are no other customers so early, which is fortunate, because Jessy requires the sales clerk’s undivided attention. Society, in its representative, reaches out with kindly interest to this forty- year-old woman who speaks so laboriously yet asks such well- informed questions. Can you use the day cream for night? What will happen if you switch the creams for dry and normal? She’s spent hours over that brochure; she’s mastered every detail. She’s searching for a rational system, which the charts suggest exists, but which of course doesn’t. Encouraged by me, the salesperson concedes you can switch creams, it doesn’t really matter. But Jessy insists; rules are what a regime is all about. The minutes tick past.
Jessy wants a particular bottle; the saleswoman looks everywhere and finally finds it in a drawer. After an hour I can’t stand it anymore; gently I bring the transaction to a close, pointing out that other customers are beginning to arrive. Jessy has spent a happy hour and seventy-six dollars; later, in another store, she’ll spend fifty dollars more to fill out the set. And no, she still doesn’t look in the mirror. Why should she?
* * *
I write, and anecdotes are all around me, new ones every day. Few of them, by now, are even as bizarre as this one. Everything she does is what she is; everything she does encapsulates the absorption of autism into the everyday. As I press to conclude a story that can have no real conclusion, I find a slip from the very week I began this book — one more record, a minuscule triumph. It’s breakfast time. Jessy has filled the kettle, brought it to a boil, and taken it upstairs to flush out the bathtub drain, a self- appointed weekly routine. I’ve sat down to read the paper, since the kettle isn’t there for me to make tea as I usually do. And now she’s back with the empty kettle; I ask her can she make my tea, and get her cheerful, confident „Sure“. She’s done parts of the process before, so I know the job isn’t beyond her. Still, I’m impressed. I’m not even looking at her, I’m absorbed in the paper, and she’s refilled the kettle, set it to boil, gotten the teapot, put in the right amount of tea, set the pot above the kettle to warm, poured in the boiling water, and left it to steep. She’s gone when I look up — it’s time to leave for work, and Jessy’s always on time. But to crown it all, when I come to pour the tea — real tea, not a wilted tea bag — there beside my cup is the tea strainer. I never asked for that, it’s not part of the process. But I always use it. She noticed!
Such a commonplace incident. That’s the point. Categories bleed. Strange into Commonplace, Talking, 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.
Exiting Nirvana e-2 Page 17
