The innocent cameraman (of course he felt terrible about it) was part of a documentary team. They had been following us around for five days, guided by Dr. Oliver Sacks, and everything had gone more than well. They were shooting a six-part series on Dr. Sacks; Jessy was the center of attention of the autism section. She was filmed with her paintings, with an ATM machine, with the old sheets of flavor tubes. She was taken for a ride on her favorite routes. She loved it all. But then she snapped.
They got it on camera, and Jessy knew it. She knew that people would see it. And clearly, unambiguously, she said she didn’t want it in the film. It wasn’t the first time she’d said she was ashamed. But she’d never before said anything like that.
Of course they told her that if she didn’t want it they wouldn’t put it in. Months later, however, as the director, Christopher Rawlence, was putting together the footage, he realized that he needed Jessy’s snap. To present autism as all charm and interesting strangeness was to romanticize it past recognition. We read Chris’s letter to Jessy: though of course he would keep his promise to her, would she perhaps be willing to let him show her snapping, and crying, and being sorry? She said yes without a qualm — it was past, it was over, whatever she’d felt, whether embarrassment, shame, or simply the bad feeling that comes with disapproval. The snap went into the picture; it has been seen on both sides of the Atlantic. Chris sent us a video, and Jessy has watched it many times. She likes the route signs and the ATM. But the snap is her favorite part. She doesn’t wince; she doesn't turn away. „I didn’t know it was so loud!“ she says — smiling.
I would like to think that the story of that snap contains some glint of a more fully social, more conscious future. But it pulls both ways; I don’t know. This book will be long finished before I find out.
I do know, however, that the vocabulary of handicap doesn’t work for Jessy. She doesn’t „suffer from“ autism. She doesn’t think of herself as handicapped. „Afflicted“ is a word she doesn’t know. As in other things, she’s matter-of-fact. She’s well aware of her obsessions, whether she calls them enthusiasms or whether she calls them autisms and they get her into trouble. She’s aware of her compulsions and rigidities and routines. She knows she must control them if she’s to avoid… shame, perhaps, but certainly unpleasant consequences. She knows she needs consequences to do this, and imagery scenes, and what we call, and she calls, Flexibility Practice. She knows how important flexibility is to her daily life, and to what is perhaps its most important social element, her job.
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 %
