To Seem Is Not To Be : And Other Rules of Life, Love and Autism Donna Williams Taught Me
Three years ago, shortly after publishing “Nobody Nowhere, The Extraordinary Autobiography of an Autistic,” Donna Williams met me in the lobby of Manhattan’s Mayflower Hotel. That is, Donna avoided me. After emerging from the elevator, she immediately shielded her face behind a sheaf of papers--her written answers to the questions I had submitted--and quickly bolted out the door. Wispy blond curls around a prettily freckled face gave her a waif-like appearance, camouflaging the iron will that led her to liberty after more than 20 years in what she calls the prison and sanctuary of autism. Avoiding any brush with passersby, she fled down the street and headed into Central Park as I trotted breathlessly behind. Donna didn’t have much use for people then. Even less for journalists.
I spent my first two hours with Donna trying to conduct an interview as she walked briskly through Central Park. Pacing reduced the terror of speaking to strangers, and provided a rhythmic pattern for conversation. She didn’t lower her defenses until she could be sure I had mastered the rules: No touching, no inflections, no fluttery gestures, no tape recorders, no changes in plan. Especially, no eye contact. Interviews had to be conducted outside. Sentences had to be simple--subject, verb, object--until she got used to strange voices. Questions had to be drawn in pictures if words didn’t work. Goodbys had to be speedy, without any emotion. These were the strict terms of Being with Donna.
Symptoms vary among individual autistic people--about 1% of the U.S. population--and have been blamed on everything from demonic possession to bad parenting to sleep deprivation. Today, autism is known to be a neurological disorder in which sensory information floods the brain. It is, as Donna experiences it, “like having a brain without a sieve.” When people speak to her, especially excited people with booming voices, she sees only waving hands and hears only “blah, blah, blah.” Overstimulation can trigger a “shutdown"--the catatonic stare and frozen body that Donna has said is like being “involuntarily anesthetized.”
With obsessive concentration, another symptom of autism, she managed to write her first astonishing autobiography in four manic weeks. She had plopped the 500-page manuscript on the desk of a child psychiatrist at the London clinic where she was a temporary clerk, asking him “to read it and tell me what kind of mad I was.” At age 25, she finally learned that the massive confusion and mighty frustration she had been wiring around all her life had a name: autism. Despite severe sensory and neurological impairment, she is a high-functioning autistic individual with exceptional talents (“idiot savant” in psychological lore). The doctor passed the manuscript to a literary agent in London; it became a bestseller in the United States and abroad.
Donna has now completed another memoir describing the obstacles she overcame to move from “Donna’s world” to “the world.” The New York Times described Donna as “prodigiously talented. . . . And oh, can she write. The windows through which she allows us to view her experience are metaphor, perfectly rendered details and wonderful surprising phrasing.” “Somebody Somewhere” is an almost incomprehensible achievement for someone who never thought of words as her first language.
Throughout childhood, Donna communicated mainly through gestures and objects. Objects had life: “My bed was my friend; my coat protected me and kept me inside; things that made noise had their own unique voices which said vroom, ping, or whatever. I told my shoes where they were going so they would take me there,” she wrote.
Since words were meaningless strings of sound, she was never moved to ask the ubiquitous childhood question: But why, Mom? Why do I have to look both ways/turn off the TV/kiss grandma goodby? Instead of learning how and why people did what they did, she learned to copy conversation and behavior, exhibiting the echolalic and echopractic habits of autistic children. During her childhood in Australia, she memorized episodes of “The Brady Bunch.” Whenever a situation triggered this stored dialogue, she would become Marcia or Greg or Alice. She responded to questions at school or home with the answers she thought people expected: “I said a lot of yes, yes, yeses. Cups of tea arrived without any connections between their arrival and the yes that had brought them there.”
“Life was just a great long game of strategies and battle tactics to hide the flaws, holes and deficits,” she wrote. Information did not translate from one situation to the next. “If I learned something while I was standing with a woman in a kitchen and it was summer and it was daytime, the lesson wouldn’t be triggered if I was standing with a man in another room and it was winter and it was nighttime,” she explained.
Her alcoholic mother interpreted Donna’s strange behavior as a sign that she was possessed by evil spirits. Aside from a weekly paycheck, her father largely absented himself from his troubled family. At age 16, Donna left home. She supported herself with routine factory jobs, but the next 10 years were a constant struggle, including episodes of homelessness and unemployment.
Eventually she moved to London, where her exceptional ability to store facts helped her pass the entrance exam for college. (Donna has scored both genius and retarded on IQ tests.) Haunted by the constant threat of institutionalization, she hid her difficulties from most of her teachers and fellow students. After watching Donna for a few months, however, an observant classmate tried to confirm her hunch:
“Donna, you’re different, aren’t you?” she asked.
“I guess so,” Donna said.
“Just how different are you?” she pressed.
“Put it this way,” Donna replied. “I’m a culture looking for a place to happen.”
Passing a London consignment shop on her way home from work one day, Donna saw a used typewriter and decided on impulse to buy it. She put in a sheet of paper and, four sleepless weeks later, had the book that “both saved me and destroyed me.”
Dr. Lawrence Bartak, an Australian specialist in autism, offered to help Donna begin building bridges instead of walls between worlds. “I think I can now accept that I am disabled, with a very big abled and still quite a dis,” she says.
While Donna had much to gain by joining “the world,” there were excruciating losses as well--she learned that without a nervous system, inanimate objects could not think or feel. Her treasured objects lost their life with this concept. “I realized I’d lived in a world of object corpses. God has a curious sense of humor,” she wrote. She braved the initial loneliness and shock because “I was in love with my own aliveness and completeness.” The alternative was not to give a damn. “I gave a damn bigly.”
I HAD NOT IMAGINED THREE YEARS AGO that this woman from another world would move me so deeply, introducing me to another way of seeing, another way of knowing. Donna and I stayed in touch after our first memorable meeting, by fax and phone and once, when she returned a year later, through a long weekend visit at my home in Connecticut. Conversations with her are often a humbling experience--though that is never her intention. “What have you been doing all summer?” I’d ask. Well, she’d learned French and German, written another book, composed a musical score for a movie, finished several paintings and was preparing an instruction manual for teachers of autistic children. “What have you been doing?” she’d ask. Well, I was almost finished with the essay I started three months ago. One of us was once thought to be retarded and one of us was not--and all of us, it seems, should rethink the usefulness of labels.
Ours was not to be a conventional friendship. Donna is a wholly mature intelligence with a highly original take on life, questioning the meaning of everything and forcing me to do the same. Last year, as we were walking through my neighborhood, Donna looked up at the sky, stopped abruptly and sang a tune I had never heard before. Did she write that song? I asked. No, she replied, the birds wrote it. She pointed to the telephone lines where dozens of blackbirds were perched. At least I saw birds. Donna saw a musical phrase. The universe is full of unsung music most of us never hear.
A lot has changed in the past three years. She has gained greater insight into the ways of Red People (the “so-called normal people” who are like noisy, vibrating colors to her) and though one is never cured of autism, Donna now grasps more meaning from speech. “You don’t have to speak so slowly now,” she told me recently.
She’s also found a way to reduce the distracting visual overload. Donna’s earliest companions were bright spots of translucent color dancing before her eyes--a mesmerizing light show no one else seemed to notice. Much later, she learned that she wasn’t hallucinating--the spots were real: Because of her acute vision, she can see air particles of reflected light that are invisible to Red People. Now, she has more visual mastery with a pair of special glasses that “provide context,” minimizing the distracting details that could lock her attention for hours.
She has also ceased the tapping, pounding, beating behavior commonly observed in those with autism, “the outward sign of the earthquake nobody saw,” Donna wrote. When her senses overloaded as a child, she would bite her flesh like an animal bites the bars of its cage, not realizing the cage was her own body. “My legs took my body around in manic circles as though they could somehow outrun the body they were attached to. My head hit whatever was next to it, like someone trying to crack open a nut that had grown too big for its shell.”
Before she learned new strategies, the rhythmic tapping, pounding and slapping also helped her keep track of where the edges of her body left off and the Big Black Nothingness began. In “Somebody Somewhere,” she describes the two painful extremes of autism, both of which obliterate any concept of self: “Autism makes me feel everything at once without knowing what I am feeling or it cuts me off from feeling anything at all.”
Though human touch and emotions present the risk of shutdown, Donna discovered she could brave these hurdles between autism and intimacy with Paul, her new husband. She met Paul, a musician, in a London music store. After noting his shy mannerisms and abrupt conversation, she correctly concluded that “he is like me.” She wrote her phone number on a piece of paper and gave it to him. Four weeks later, he rallied the courage to call.
For an autistic couple, the recognition of love is not a wholly pleasant sensation. As her emotions approached “five on a scale of one to five,” Donna battled to keep the self she had worked so hard to uncover from submerging again.
“Something awful is happening,” she told Paul. “I have a feeling I don’t understand.”
“Is it something you ate? Are you upset? Do you need to eat?” Paul asked.
She finally worked her feelings out on paper and wrote him a letter: “The safer and happier I feel, the more it will make me want to run and escape. Do you realize this? Do you care enough, have patience enough and understanding enough, to support my fight against this stupid compulsion? If you do not, it is OK. But it would just be too hard if you didn’t understand.”
He did understand. Together, they developed systems to keep the “self” from disappearing during frightening emotions--Donna into her characters, Paul into his “faces,” both manifestations of memorized behavior that they had used previously to cope with everyday life. They established what Donna calls their “ongoing specialship, a place of belonging.” They had to talk a lot about sexual desire--or the lack of it. They could both remember sexual experiences in their past when there was no “self” involved. An adult going through the motions of sex without a self, Donna said, feels much the same as a child who is “molested, abused and confused.” The worst part, they agreed, was having to pretend to feelings they didn’t have because that’s what the Red People expected. “We were a pair of comrades discussing a decade each of self-rape,” Donna says, “a pair of prostitutes talking trade.” The desire to touch came slowly, with respect for their acute sensitivities.
Conducting their courtship was tricky--the usual gift exchanges held no appeal for Donna, who rarely wants to own anything. The things she most enjoys are clouds, sunshine, trees, plants, flowers, wind and waves, a fire in a fireplace. How to wrap up the ocean? Paul once adopted the persona of man-romancing-woman and tried to buy a crystal Donna had admired in a gift shop. She told him to put it back--she didn’t want it. “There was too much ‘I want to please you’ in the air,” she wrote, “too much ‘let me escape me by focusing totally on you.’ I could accept nothing in this atmosphere.” Such blunt honesty is crucial to their relationship. Maintaining the self--not characters, not facades, not routinized behaviors or patterns--was perhaps the first and most critical rule of specialship.
I FELT MY ANXIETY RISING AS I DROVE INTO MANHATTAN TO MEET Donna and her husband for the first time. Traffic was moving at a crawl after a blizzard had dumped a foot of snow on the streets. I was already an hour late that February morning when I parked outside the Lyden Gardens, hoping their rule against changes in plan was flexible during natural disasters.
Donna had always stayed at the Mayflower because familiarity was necessary to a sense of security. Whenever she enters a new room, she feels secure only after memorizing every detail: the windows, the blinds, the wallpaper pattern, the color of the furniture, the marks on the floor and, of course, the position of the door. Change frustrates autistic people because this memorizing is hard work. If one item is moved, the whole room has to be memorized again. When Donna returned to the Mayflower last year and asked for the same room, she instead was given an identical room with exactly the same furniture, colors, paintings, floor plan. But it might as well have been a tent in Central Park. What was so different, the concierge wanted to know? The view from the window.
But this time, they had switched hotels so as to have a suite with a kitchen. Because of their multiple food allergies--to milk, cheese, wheat, onions, among many others--Paul preferred to cook their meals rather than risk eating unidentified ingredients in restaurants.
“Our suite looks like a biscuit,” Donna had said over the phone, meaning that it was beige. “It gives me a floaty feeling.” Strongly affected by color and light, she was unmoored by beige.
Donna opens the door when I ring the bell, then steps immediately back into the foyer. She hums softly, makes a chuckling sound, then hums again. I recognize this pattern as her way of reducing terror. Though we have spoken freely on the phone, the initial moments of being together again are still frightening.
“Hello-Donna,” I say evenly, looking over the shoulder of her yellow sweater. She puts her fingers on her lips, as if deciding whether to bite her nails or invite me in. I stand still as she hums, chuckles, hums, letting her take me in peripherally through her dark, tinted glasses. Finally, she speaks.
“Please take off your hat,” she asks in her flattest, most mechanical tone, like a voice in a car telling me to put on my seat belt. I realize she can’t see me yet. Even with the special glasses that provide context, I am The Friend Donna Mistook for a Hat. I remove the obstacle and she smiles in recognition.
She introduces Paul, a slim, tall man standing very still in the foyer. He looks past me and says hello, then disappears. Behind his colored glasses, the lower half of his handsome face appears stoic and solemn. Paul seems ill at ease, which I attribute to the presence of a stranger, my being late and their jet lag after a harrowing trip from London to New York. The blizzard had delayed their flight, the airports at both locations had been filled with frenzied crowds and they were living in a biscuit that made them feel floaty.
When Donna sits on the carpeted floor and immediately begins talking to me, I sit down on the floor, too. Our plan for the morning had been to take care of business first--she had called the night before, greatly upset, because her printer wasn’t working. Since Donna did her thinking on paper first, the broken printer rendered her mute, as it were, just as she was headed into a full week of media interviews. I had offered to take them to a computer store first, then visit for a while, then take a walk through Central Park together, blizzard or no.
Paul had picked up his coat as soon as I arrived, preparing to go out, then had put it down again when Donna and I sat down and began talking. He keeps walking in and out of the room. Half an hour later, his level of anxiety seems to escalate.
“Are you doing an interview?” he asks.
“Not really an interview,” I explain. “We’re just visiting.” He gives no sign that he appreciates the difference, but my remark triggers a question about whether we want a cup of tea. Paul is the member of their team in charge of food and refreshments. We both say yes.
While Paul makes two cups of chamomile tea, a loud knock on the door abruptly halts all conversation. Donna, startled by the sudden sound, stares at the door as a key slips into the lock. The hotel maid materializes in the doorway.
“Stop!” Donna calls. “Don’t come in!” Paul hollers from the kitchen. A clamor of raised voices--from Donna and Paul, from me, from the maid--fuse in mutual alarm. “We told them at the desk . . . do not disturb . . . I’m sorry . . . thought you were out.” The maid quickly disappears but all equanimity is destroyed in an instant, as if a tear-gas bomb had dropped into the room.
Paul delivers two cups of tea, then sits down on the couch away from Donna and me. Then he gets up. Then he sits down. He becomes absorbed in making a list of some sort. His jaw is set in grim endurance, as if he is lifting weights. Donna sees his distress, recognizes a case of the “jubblies” coming on--"the yukky, gripping things inside your stomach under stress.”
“Paul, what’s wrong?” she asks.
No response. Paul looks straight ahead, his face frozen. Emotional overload. Her words aren’t getting in, so Donna steps over to the couch and gently bows, putting the crown of her head in Paul’s face. Humming softly, she holds perfectly still for a few minutes, letting him smell and feel her hair. Then she reverses position, burying her face in his hair. This must be what they call a “jubblie-ectomy--a ritual to get rid of the jubblies.” Paul’s jaw finally unlocks.
Words now flood out. He reminds Donna of the plan--and how anxious she had been all morning about the broken printer. Having absorbed her anxiety, he was prepared to take action as soon as I arrived. Now here we were, sitting on the floor, acting like two talking heads. All order and structure had disintegrated. Donna apologizes for abandoning the agenda. My appearance had started a chain reaction of triggered behaviors--the compulsive speaking, the rote social questions, the automatic “yeses” that once more brought cups of tea seemingly out of nowhere.
In record time, we don our coats, get in the car, complete our chore. After a brief autistic tour of the city--noticing the honking horns and the loud behavior of the Red People, seeing how the air conditioners just outside of apartments form a pattern like black boxes in a crossword puzzle--we return to the hotel. Errand accomplished, everyone is more relaxed. I am invited to stay for lunch.
Quicker than I can make a peanut butter sandwich, it seems, Paul arrives with three plates of steak, broccoli, cauliflower and beans.
“We don’t talk while we eat,” Paul informs me when I start to chatter. “If you start talking, Donna won’t know what she’s eating.” We click knives and forks and “simply be.” Occasionally, a hum meets a good bite or signifies a private thought.
I mention after lunch that Donna doesn’t seem to be interested in “buzzing” on colors and sounds as much as she used to. I remembered standing under a pink street light with her late one evening, our faces turned up to catch the falling snow directly--it felt like we were speeding through space, rushing through a field of tiny pink planets. Did the willful control of autistic symptoms that imprisoned her also mean giving up the extraordinary pleasures of her acute sensory perception? What activities does she now enjoy?
She says the concept of “enjoy” is a whole new realm. She and Paul have “developed a checking procedure which gives us, for the first time, an ability to tell compulsion from ‘want’ or ‘like.’ ” That was a huge breakthrough in autism terms; now that she knows the difference, she buzzes only when she “wants” to and not because the snow is there.
I put on my coat and prepare for terse farewells. The first time Donna and I parted company, she said, “Good-by” and closed the door. The next time, as if teaching herself to be more social, she said, “Goodby . . . and thank you. You have been a great bagful of information.”
Now, with the blunt honesty of her real self, she says: “I can’t say I’ve enjoyed your company. But I didn’t mind it.” She means to be clear, but then worries.
“Did that hurt your feelings?” she asks. Red People have complicated feelings that are always cropping up unexpectedly, getting hurt unintentionally.
“No,” I answer honestly. After three years, I understand that while I may be enjoying Donna, she is most likely enduring me.
AFTER A WEEK IN NEW YORK with another week of interviews to go, Donna calls to ask whether she and Paul can come to Connecticut for the weekend. When I come to pick them up, Paul asks me to look directly at him before we leave. It’s a necessary hurdle to surmount before he can move into close proximity with me. I make eye contact, which, just like loud voices and fluttery gestures, can cause sensory pain. He jumps, then laughs loudly, then shivers. “It’s like being pelted with ice cubes,” he explains. It hurts, but it’s done. Now he can bear my company for the weekend.
Donna mentions that she and Paul have a firm house rule: No leaving soap suds in the sink after doing the dishes. Suds contain rainbows of color, and they can nearly paralyze an autistic person. If one of them happened by the sink, he or she could get stuck until the bubbles burst. I ask Donna if they have any other household rules. Here is a partial list:
No reading newspaper headlines in gas stations or newsstands. No watching Oprah Winfrey or Sally Jesse Raphael without checking first if I want to. No making the fruit bowl symmetrical. Attempt to keep track of your face and your body at all times. Say, “It’s important to me,” instead of just going ahead and doing things when you face opposition and can’t battle verbally. Don’t force yourself to stay in rooms or situations, eat food or be with people that are allergenic or that force you to disassociate or overload. Say “time” instead of throwing wobblies. Don’t talk or answer people in a triggered way--triggering gets out of control and the consequences are entirely out of your hands. To seem is not to be. No lining feet up with the furniture. Scrub your underarms--just putting soap on your body is not washing. Take your glasses off before dressing (and put them back on afterward). Dare to mess. Don’t use stored voices, stored intonation, stored movements or stored facial expressions. Never buzz on a road. Be nice to your body.
I have instructed my son Ryan, who is home from college, on the basic rules of Being with Donna and Paul. He’s a gregarious kid with a ready handshake and hearty laugh. I tell him to reverse all his usual instincts: “You’ll make them most comfortable by ignoring them.” When we enter through the back door that afternoon, he quickly turns off the TV and disappears so that they can get acquainted with the house. After depositing their copious luggage, computer equipment and grocery bags in the guest room and kitchen, they begin feeling my house--touching objects, tapping walls.
“What’s that noise?” Paul asks suddenly. I recognize the faint electrical hum of the refrigerator--which Paul hears reverberating off the walls, blasting his ears. When they are acclimated, I bring Ryan back into the kitchen to introduce him.
“Hello-glad-to-meet-you” he says, looking down at his feet and speaking like a robot. He stands awkward and still for a moment, like a rookie actor who doesn’t know where to put his hands. Donna wonders whether he is autistic or well-educated. She asks: “Are you always this quiet?”
Simultaneously, we answer, “Never” and “Sometimes.” I mean that Ryan is not autistic; he means that he can handle the rules. Getting a straight answer from the Red People is a trial.
Ryan and I go out for lunch to give Donna and Paul the kitchen to themselves. When we return, they have cooked, eaten, done the dishes and are now outside in their snowsuits. My yard, front and back, is filled with exquisite snow sculptures: A perfect cat, with thin twiggy whiskers; a penguin on an iceberg with a fish at its webbed feet; a large snail with antennae. Their masterpiece is a two-story cottage landscaped with shrubs and trees; Paul is placing lighted windows in the second story. He asks if it was OK to take a few yellow Post-It notes from my office.
Without a word, Ryan goes to the front porch and picks some flakes of chipped concrete off the steps. As Paul puts the last Post-It in a second-story window, Ryan makes a flagstone path to the front door. Donna hums. “There are other ways of communicating besides language,” as she often says.
Aware of their food allergies, I ask whether Paul would like to cook dinner. Paul freezes at the suggestion. I don’t know what part of my question has thrown him. Donna, reading his expression, calmly begins what I now recognize as a familiar litany of questions:
“Does Paul want to cook?” No response.
“Does Paul not want to cook?” A faint smile.
“Do Paul’s defenses want to cook?” No response.
“Does Paul want Mary Kay to cook?” A faint smile.
“Does Paul want Ryan to cook?” A big smile.
So now we know.
AS WE GET INTO THE CAR the next day, Paul says, “Look, Donna! The big black arm is swinging back and forth instead of around in a circle!”
“Oh, yes!” she says, like a tourist spotting a cultural peculiarity in a foreign country.
I look up from the ignition to see what they’re talking about. What black arm?
“There,” Paul points to the house next door. I look at the broad white exterior, the windows, the shrubbery. I see no arms.
“In the electric meter,” he explains. I squint and focus, finally spotting a tiny black dot moving along a slotted opening. Even with perception glasses, Paul and Donna take in every minuscule movement. I start to understand Paul’s earlier comment that 80% of the information overload is visual. I have lived next door to the big black arm for four years and never noticed it.
Donna’s agent has invited us all to her country house for Sunday brunch. It qualifies as a “dinner party,” which is never fun--but Donna knows Ellen will appreciate the effort and she chooses to go. She and Paul have established their decision as a “want to” and not a compulsion to be polite. (“Mary Kay can take care of the ‘blah, blah, blah,’ ” Paul says.)
During lunch as Ellen and and I talk, Donna overhears a remark that gives her a new insight.
“So you don’t just sell books for the money--you keep them for a while and make them better. You have feelings about the books?” Donna asks. “You care about them before you sell them?”
“Yes, that’s right,” Ellen clarifies.
“So, you are like a baby-sitter of books?”
“Yes,” Ellen says, smiling broadly. They connect.
Ellen walks us to the car after lunch. “Goodby, Donna,” she says warmly. “I’ll miss you.”
“Good-by,” Donna says, and closes the car door.
We drive in silence for a while. “Why did she say, ‘I’ll miss you?’ ” she asks. I explain the concept of missing.
“Why didn’t she keep that feeling to herself?” There is no accusation in her questions--she is merely consulting her bag of information, trying to understand the mysterious ways of the Red People. We like to blah-blah, we get attached, we love and enjoy, we miss.
AFTER DINNER SUNDAY night, we realize we are getting close to our own goodby. Donna starts twirling a napkin on the table, buzzing on the spin. “Stop that, Donna,” Paul says, then looks toward me. “She’s doing that to make you irrelevant,” he states matter-of-factly. Donna laughs her real laugh. She is delighted to be understood so perfectly, to be called on her “autie” behavior.
When a similar exchange occurred the day before, Paul wondered if I had taken his comment as criticism of Donna. He explained their agreement to help each other this way, to recognize autism and assist each other in controlling it. Several times throughout their visit, one or the other had issued a reminder--"Don’t use ‘voices’ when you tell a story” . . . “That’s a ‘stored dialogue,’ not a ‘conversation’ ” . . . “Build a sculpture but don’t ‘perform’ for people.” The No. 1 rule: Be your real self. Which means you have to have a self.
Donna can mesmerize audiences with her ability to recite whole books on the subject of autism--and just about anything else--but Paul recognizes that those compelling speeches are not always what she means to say. Her own conversation is much more of a struggle. Much harder, but authentic. “It’s like if someone you knew could walk sat down in a wheelchair and wouldn’t get up,” Paul explains. “You could push her around, but that wouldn’t be good because you know she really wants to walk.” He sees his role as her companion walker.
Donna now looks directly at Paul. “I think you are a good man,” she says. It is a whole, emotional speech. His real smile lights up as he simultaneously laughs and cries in soft, quiet gulps. It’s painful, but he stays with the emotion. He doesn’t overload.
I realize then that their rules for an autistic marriage would be useful to all married couples: Pay attention to details--they matter; don’t aggravate each other with compulsive, thoughtless habits; don’t assume you understand--check feelings out with each other; be tolerant of comforting quirks; teach each other what you are learning about the world; get out of your wheelchair and walk on your own two feet.
My sister hopes that Donna will write another book, called Everybody Everywhere, a kind of etiquette manual that would teach people to be more sensitive and less presumptuous about the rules and expectations we impose on other people.
“I am an accidental educator,” Donna says when I tell her she has taught me a lot about my own life. She had no choice about instructing the Red People in the ways of autism if she wanted to come out of her private world. Now that she has, maybe she doesn’t need to write any more books. All she wanted, for nearly 30 years now, was to find a specialship where she could belong--a place where her culture could happen.
I drive my odd couple to their next destination. Then, after speedy goodbys, I drive home, numb with exhaustion. Being a chauffeur to two autistic people in love--explaining, learning, running interference between small planets--I feel like I’m approaching overload myself. I recognize shutdown not as an absence of emotions but too many at once. A surge of affection rises, a fierce yearning for happiness and safety and cosmic understanding. The two small red taillights from the car ahead disappear around a bend and my mind goes blank.