Hurricanes and Land Mines
I work with the autistic, in France. I founded an institution there, a day clinic dedicated to the treatment of extreme cases. I have always been most interested in extreme cases.
When I was a child I wanted to be a doctor-I didn't want to become a doctor; I wanted to be a doctor, now! I'd found a copy of Morris's Anatomy in my cousin Bettie's attic when I was eight years old. I read the whole thing. There were lots of pictures. I memorized the appendectomy procedure-incision, artery, hemostat, suction, section, suture. I felt like a doctor.
At the time I also felt like a ventriloquist; my mother had been a vaudeville performer in her youth, and she'd taught me to sing and dance, so ventriloquism seemed to be the natural next step. I taught myself the basics of the art with the help of a book entitled So You Want to Be a Ventriloquist? which I'd come across in the elementary school library while searching for a book that didn't exist but which would have been entitled, had it existed, So You Want to Be a Brain Surgeon? Inspired by these two parallel studies, I took to performing two or three appendectomies a week on my ventriloquist dummy (his appendix was a shoelace, inserted in his abdomen the night before, frequently inflamed). A year later my success, as well as that of Christiaan Barnard, allowed me to move on to open-heart surgery (a knotted maroon sock). Both my careers unfortunately came to an abrupt halt with the untimely demise of my dummy, who died of postoperative complications (falling apart at the seams) a few weeks before my tenth birthday.
By the time I was twelve, I was already pursuing three "careers" at the same time: scientist, novelist and performing artist. I wrote my first novel at age twelve, and continued writing a new one every few years. Two years after the tragic death of my ventriloquist dummy, I as scientist won first prize at the Detroit Science Fair for my life-size papier-mâché "Visible Man." As a stage performer, I sang, I danced and I mimed; studied the violin (no talent), the trumpet (almost no talent), then the drums (talent). And by the time I was fourteen, I was spending the first half of my summer vacations as a volunteer in the pathology lab of a large teaching hospital in Detroit where my father knew somebody, cataloguing paraffin samples, carrying test tubes, looking into microscopes. Best of all, I got to wear a white coat, like Dr. Kildare. The second half of my summer vacations, I worked as a volunteer at various camps for various kinds of special children. I spent the first summer as a counselor's aide at the Michigan Muscular Dystrophy Camp. It was here that I perfected my peerless wheelchair-pushing technique: the continuous pushing down and pulling up on the handles from behind, the eye always on the next five yards, anticipating nooks and crannies and hills and dales-a human suspension system ever ready to ensure a smooth ride wherever your destination might take you.
Over the years I worked with inner-city kids, underprivileged psychotic kids, "mongoloid" and retarded kids, inner-city underprivileged mongoloid psychotic kids. I learned the primal lesson of the ineffably narcissistic: doing good for others makes us feel good, the ultimate ego trip. One day, suffering from a broken heart and needing to feel good about myself, I took out the Yellow Pages and looked under R, for "Retarded." I thought I'd brush up on Down syndrome-kids so special that they're hardwired for kindness. I was referred to "Special Schools," and there I came across an address not far away. I called. I was given an appointment. I went. What I saw when I got there is why I'm writing this book.
It is 1974. I am twenty-four years old. I am sitting alone in the waiting room of the Children's Orthogenic Center in Detroit, wondering what "orthogenic" means. Suddenly the room is deluged by a hurricane. The hurricane comes in the form of a boy, bursting through the door, throwing himself to the floor, sitting up suddenly, legs out straight and back stiff, rocking back and forth, hands in his lap, eyes staring into middle space, his hoarse voice spitting out syllables as if he'd swallowed something, but hadn't. I have never seen anything like this before in my life. It is stunning. I am stunned . . . and somehow delighted. At twenty-four it is already rare to suddenly see something one has never seen before in one's life. My immediate instinct is to fall on the floor and do as he is doing. I want to know what in the world it could possibly feel like to be him.
I didn't know at the time that this was to be the most burning unanswerable question of my life.
"Extreme cases" may be defined in several ways. One might describe an autistic person who is particularly violent, one who bites, scratches, slaps, spits, bludgeons the people around him-caregivers, family members, other patients-and himself. The term might also apply to those autistics whose pathology makes them extremely hard to get through to (by definition, if you're autistic you're hard to get through to): inert, retarded, difficult to motivate, impossible to move. Or it might also refer to a person who has an extreme effect on the family or on the institutional staff: someone who may be neither violent nor inert, but whose behavior is so disturbing, disruptive or obnoxious that the weight of his or her presence pushes us to extremes.
It was an extreme case that initiated me into my profession, that day in 1974.
The hurricane's name was Adam S. He was four years old. I was to learn later that of the twenty-five-odd youngsters of the Children's Orthogenic Center (orthogenic may be defined as for the care and education of children with emotional or cognitive disturbances), Adam S. was the most difficult, the most dangerous. He bit. He bit and he head-butted and he pinched and he pounded, himself as well as others. He had no language. He did not come when called. He would not sit still in a chair. He would sit on the floor at length, however, rocking back and forth, tapping his head backward against the wall; I can still see the bald spot where he'd worn the hair away, a small tempest-tossed island of scalp in a turbulent afro sea.
Adam threw fits. Suddenly, for no apparent reason, he would hurl himself to the ground, flailing his arms, churning his legs, hitting his forehead against whatever surface he found himself on, rolling across it, beside himself, a banshee. We would try to subdue him; it usually took three or four of us. Sometimes we put him in the time-out room; sometimes we'd stand there, impotent, waiting for the storm to pass.
Adam, autistic, was invulnerable to everything, including pain. I once watched him climb a hurricane fence, slip and fall to the ground five feet below, flat on his back, then pick himself up and walk off without so much as a whimper. It eventually dawned on me that the boy had an extraordinarily high threshold for pain. (Certain studies in the 1980s were to demonstrate that some autistic people have elevated levels of substances called endogenous opiates-endogenous means made by the body itself-that act as natural painkillers; one of those opiates is beta-endorphin. This finding would also help to explain these people's self-injurious behavior: living in a state of perpetual semi-numbness, they could be driven to self-mutilation in an unconscious effort to feel themselves.) I reasoned that if it was true that Adam did not feel pain as you or I do, he would understandably have trouble distinguishing a caress from a scratch, a friendly slap on the back from a punch in the nose. This had to be explained to him. But how? Given his low level of verbal comprehension, what could we do to make him understand the difference?
An act of aggression inflicted by someone who does not distinguish violence from tenderness is aggressive only if the person receiving it experiences it as such. If a coconut falls on my head but, thanks to the football helmet that I always wear, doesn't hurt me, no aggression or violence exists; the coconut didn't fall on me on purpose, and I experienced nothing unpleasant.
I decided to create a microcosm wherein Adam's violence would simply not be experienced as such, and thus would not exist. During the summer, the Children's Orthogenic Center was closed for classes, but the building stayed open for consultations. We decided on one-hour sessions, three days a week. I chose a small empty office which was rarely used, with one small window and carpeting on the floor. In the beginning I spent most of my time dodging Adam's teeth, fingernails and fists. I learned to do this calmly, through minimal, fluid movements, a kind of Aikido invented for the occasion. I showed no signs of panic, stress or unpleasantness. What I couldn't avoid I simply took, stoically, betraying no reaction whatsoever, practicing a sort of self-hypnosis that renders one invulnerable to pain-or, rather, invulnerable to the slightest reaction to pain; enabled, I suppose, by some primitive survival instinct as well as an extremely self-indulgent Zorro complex. This aside, I spent most of my time imitating Adam, mirroring him: rocking when he rocked, flapping my hands when he flapped his hands, screaming and humming when he screamed and hummed. We crossed our eyes at the same time, flung ourselves against the walls as one, bit ourselves on the hand together, banged our heads in sync.
Outside the little room, Adam followed me everywhere, came when I called, did whatever I asked. My colleagues were dumbfounded.
Time marched on.
It is early August. Adam and I are in session. Adam is standing there in the corner of the little room, making his favorite noise, "sih-sih-sih." (This afternoon's program will also include "Ah-um, ah-um, ah-um UM!" as well as the ever popular "Tik-a-tik-a-tik.") I sing along, standing in the opposite corner. I realize again how pleasant it is to make these noises-the way the air catches in your sinus cavity, the little slapping in your throat, the tiny perpetual suffocations that squeeze and release, squeeze and release. It beats speech by a mile. Suddenly my knees give way-I fall to the floor in sitting position, my legs out straight in front of me. I say, "SIT!" Without the slightest hesitation, Adam falls to the floor in like position and says, "SIH!" A miracle! I can't believe my ears. I grab him and hug him, shake him with joy. He smiles wide. This smile is worth a million dollars, and I want to see it grow. I start to tickle him. I say "Tickle-tickle-tickle" and Adam rolls around the floor, laughing. Now I stop, my hands hovering low over his ribs. He looks at me in anticipation, stares, smiling-then . . . "Ticka!" He says it suddenly and I pounce on him, all ten fingers roiling in his ribs. I stop again. His eyes meet mine. "Ticka!" Adam repeats. (Cue music.)
In the coming year Adam will acquire a vocabulary of fifteen words, most but not all of which appear through reciprocal imitation, and all of which are reinforced by a particular pleasure attached to the sense of the word said, an answer to a request on his part-"Rye hoss" (Ride horse; we had a rocking horse at the school), "Yowt" (Yogurt, one of his favorite foods), etc. As his communication skills increase, Adam's violence dwindles.
The question of what autism is-what it looks like and where it comes from-will be discussed many times in the course of this book. We will see again and again how clear definitions and descriptions turn out to be frustratingly elusive; how they differ from author to author, specialist to specialist, country to country, school of thought to school of thought. This is largely because how autism "looks" often differs from one autistic person to another, from one psychological evaluation to another, from one brain scan to another, from one genetic profile to another. In defining autism, Blakiston's Pocket Medical Dictionary makes reference to "thinking unduly influenced by fantasy and daydreaming," whereas, on the contrary, many specialists draw attention to the literal, totally unimaginative nature of autistic thought. Temple Grandin, an autistic woman who is herself a specialist on autism, describes her own inability to mentally conceive metaphors: when she hears someone speak of a "golden door to the future" (at a stockholders' meeting, say), she imagines a very real door, perhaps with a knob and a door frame, that's made of gold. No fantasy and daydreaming here.
There are violent, hyperactive autistic people and there are inert and gentle autistic people; verbal ones and nonverbal ones; heartbreakingly retarded ones and astonishingly brilliant ones; graceful ones and clumsy ones; obsessive-compulsive ones and easy-to-please ones; beautiful ones and ugly ones.
The psychiatrist Leo Kanner, who named the condition in 1943, probably had the simplest, most telling point of view. His distinguishing descriptive criterion was the "air of aloneness" that he observed in these children-the quality they had of behaving as if they were absolutely alone when they were not alone: not noticing others, not reacting to others. To me, it is the presence of this invisible wall that most distinguishes autism from other handicaps and pathologies, and the reason for which autism has often been classified as a communication disorder. This distinction having been made, though, I must confess that I have never encountered, even among the most extreme of the extreme cases, a single autistic person with whom I could not communicate at all, a single autistic person whom I did not, in the end, consider to be "good company."
In certain institutions the most difficult patients are the ones most loved. I consider this to be a good sign. When I came to the Children's Orthogenic Center, Adam S. was the uncontested favorite. He bit.
Adam bit often, bit everyone, bit hard, children and adults alike. He was scolded, screamed at, exiled and upbraided. He was isolated in the time-out room. (In those days "timing-out" was the negative reinforcement of choice. It only dawned on us later that since by definition most severely autistic children seek to be alone with themselves, they are only too delighted to be left in a small room with nothing in it but themselves.) Adam bit; nothing worked. It became evident that radical measures had to be brought to bear. These measures were conceived using the principles of "operant conditioning," a concept to be discussed shortly. Our hearts in hand, it was decided that each staff member be furnished with a small plastic bag, to be worn on the belt, inside of which was a small sponge saturated with Tabasco sauce, of which Adam was to receive a dab in the mouth each time he bit someone. It was loathsome to do, heartbreaking to watch-he shrieked in pain, squirmed on the floor, threw himself against the wall, flailed. Three interminable minutes later we'd grab him up in our arms and collectively comfort him. This protocol, which put everyone's ethical and moral fiber to the test, only served to deepen our affection for the boy.From the Hardcover edition.
Excerpted from Through the Glass Wall by Howard Buten, M.D.. Copyright © 2004 by Howard Buten, Ph.D.. Excerpted by permission of Bantam, a division of Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.