How Oliver Sacks Helped Introduce The World To Autism
Autism and its many forms may be widely discussed today, but it wasn't until the famed neurologist and writer told the story of identical twins George and Charles Fin in his book The Man Who Mistook His Wife for a Hat. Sacks died Sunday from cancer. He was 82.
Oliver Sacks: 1933-2015
Oliver Sacks, the famed neurologist and author, died Sunday from cancer. He was 82.
He had revealed to the New York Times in February that he had received a terminal diagnosis after a melanoma in his eye spread to his liver.
"When people die, they cannot be replaced," Sacks wrote for the Times. "They leave holes that cannot be filled, for it is the fate — the genetic and neural fate — of every human being to be a unique individual, to find his own path, to live his own life, to die his own death."
"I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers."
"Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure."
Steve Silberman's post on Sacks, published by BuzzFeed News on Tuesday, follows below.
In 1966, a young neurologist began working on a residential ward at the Bronx Psychiatric Center after serving an internship at Mt. Zion in San Francisco and a residency at UCLA. He already knew that, in addition to being a doctor, he wanted to be a writer like Freud or Darwin — a precise observer of the world who wrote literarily but with scientific accuracy. He would fill up hundreds of pages in his notebooks (with an occasional boost from methamphetamine), staying up all night in transports of inspiration. In the nocturnal underground of San Francisco where he consorted with Hells Angels, poets, leather queens, and other members of the bohemian demimonde, this bearded, burly doctor-in-training — who set a state weightlifting record with his six-hundred-pound squat — called himself by his middle name, Wolf. But now that he had moved east and left his druggie days behind him, he resumed using the name he was born with in London: Oliver Sacks.
In the dismal warehouse for hopeless cases known as Ward 23, he met a pair of identical twins named George and Charles Finn who had been variously diagnosed as autistic, schizophrenic, and mentally retarded. Despite the impoverishment of their surroundings, the twins carried a glory of numerical symmetry in their heads. "Give us a date!" they would cry in unison, and they were instantly able to calculate the day of the week for any date in a multiple-thousand-year span. As they executed these seemingly impossible cogitations, they would focus their attention inward — their eyes darting back and forth behind thick glasses — as if they were consulting an internal calendar that spanned dozens of millennia or more. The twins' calendar-calculating abilities were just one aspect of their extraordinary cognitive gifts. The next time that Sacks saw the twins, they were raptly enjoying a conversation that consisted solely of numbers. George would utter a string of digits, and Charles would turn them over in his mind and nod; then Charles would reply in similar fashion, and George would smile approvingly. In a case history published twenty years later in The Man Who Mistook His Wife for a Hat, Sacks wrote that the brothers (called John and Michael in the book) looked like "two connoisseurs wine-tasting, sharing rare tastes, rare appreciations." At first, he had no idea what they were doing, but he took notes on these cryptic exchanges anyway.
"I was attracted by their uncanny twinship, their twin bonding," Sacks told me over Lapsang Souchong tea and smoked salmon in his West Village apartment in 2012. He added that he felt a special kinship with the Finns because he had "a thing for numbers" himself. Upon consulting a book of mathematical tables at home, he was shocked to discover that the twins were instantaneously calculating six-digit prime numbers, a feat that even a computer would have found difficult to pull off at the time. The next time he visited the twins, he made sure to bring his book of tables along, so he could raise the bar by casually dropping an eight-digit prime into the conversation. Surprised and delighted, the Finns invited him to join in their ethereal exchange, seeing him and raising him with even longer primes. Yet George and Charles were incapable of performing simple multiplication, reading, or even tying their own shoes.
Then Sacks met José, a twenty-one-year-old autistic man afflicted by frequent seizures. A ward attendant openly referred to him as an "idiot" and said that he was unable to comprehend language and rudimentary concepts like the passage of time. But when Sacks handed the young man his watch and said, "Draw this," José gazed at it in intense concentration and took up his pencil. The neurologist was astonished by what happened next:
José had drawn the watch with remarkable fidelity, putting in every feature (at least every essential feature — he did not put in WESTCLOX, SHOCK RESISTANT, MADE IN USA), not just "the time"… The general grasp of the thing, its "feel," had been strikingly brought out — all the more strikingly if, as the attendant said, José had no idea of time. And otherwise there was an odd mixture of close, even obsessive, accuracy, with curious (and, I felt, droll) elaborations and variations.
"I had never seen such an ability before," Sacks told me. "José was fond of the non-human world, and especially the botanical world, as I am. Like his drawing of my watch, his images of dandelions and other things had feeling as well as great accuracy." Inspired by his experiences with José and the twins, Sacks began exploring other ways of forging connections with the other patients on Ward 23. He started taking them for walks in the New York Botanical Garden, invited them to join him at the pool table in the day room, and brought in his own piano to entertain them with music. "They would gather around me when I sat down to play. They might keep time; they would smile; they might dance; they might sing," he said. "Some of them had musical talent and might play a few notes, which meant, 'Can you play that?'"
On one of his walks with patients in the botanical garden, Sacks saw a boy named Steve pick a flower, gaze at it, and say the first word that any of the doctors in the hospital had ever heard him say: "Dandelion."
Using his acute powers of observation, Sacks came to realize that, instead of being incommunicative, his patients were communicating all the time — not in words, but in gestures and other nonverbal forms of utterance, particularly among themselves. He wrote an essay called "Culture and Community among Mental Defectives" for the hospital journal to make his colleagues more aware of the subtle forms of interaction unfolding all around them.
But his days on the ward were numbered once he started raising objections to the brutal forms of behavior modification employed there, which were all the rage in state hospitals and other custodial-care facilities in the 1960s, and were euphemistically known as "therapeutic punishment" among the staff at Bronx Psychiatric. Straitjackets were common, and "uncooperative" patients were left in isolation rooms for days to sit in their own waste.
"I finally spoke up at one of our Wednesday meetings and said that I thought it was morally reprehensible," Sacks told me. "I emphasized that I did not want to be associated with it, and that I was happy to have found other ways of contacting the patients." Looking around the table, he saw a circle of dark faces. Later that week, a hospital administrator transferred him off the ward. The day after Sacks was forced to leave, Steve escaped the hospital and climbed onto the Throgs Neck Bridge, intending to leap into the East River. Luckily, he was rescued before he could jump.
In the weeks that followed, Sacks consoled himself by writing his first book: a collection of case histories that he called Ward 23. In a fit of self-doubt, however, he tossed his only copy of the manuscript into the fireplace. "Jonathan Swift had thrown Gulliver's Travels into the fire, and his friend Alexander Pope pulled it out," he recalled, wincing at the memory. "But I didn't have a Pope."
That night, he had a vivid dream of hearing passages of melancholy vocal music in German, a language that he didn't understand. These unwelcome melodies continued playing loudly in his mind throughout the following day. After hearing Sacks hum a few bars over the phone, a friend identified the score as Mahler's Kindertotenlieder — songs of mourning for dead children.
Two decades later, Sacks heard about a mature autistic woman who had seemingly done the impossible: written an autobiography. The book was called Emergence, and its author was a professor of animal science at Colorado State University named Temple Grandin.
The notion that an adult could have autism — much less earn a graduate degree and a teaching post at a university, and become a leader in the field of industrial design — was still so new when the book was published in 1986 that Bernard Rimland, co-founder of the first association for the parents of autistic children in America, introduced Emergence as "the first book written by a recovered autistic individual." It soon became obvious to Grandin, however, that she had not "recovered" from autism, but had learned, with great effort, to adapt to the social norms of the people around her. "When I said that early stuff, I didn't realize how different my thinking was," she says. "I was doing a lot of construction projects in the early nineties, and I could draw something and test-run that piece of equipment in my mind. I started asking other designers to describe how they think, and they told me they could draw the layout for a meat-cutting line but couldn't make the conveyors move. I could make the conveyors move."
She had a similar revelation when she asked a speech therapist what came into her mind after hearing the phrase church steeple. "I was shocked when she said 'vague pointy thing,'" Grandin recalls. "I saw pictures of specific steeples." She began to think of herself as having a powerful digital workstation in her head, capable of running instantaneous searches through a massive library of stored images and generating 3-D videos from the sketches on her drafting table.
Grandin also noticed how many parents at autism conferences were gifted in technical fields. "Early on I met a family with two severely autistic nonverbal kids. Dad was a computer programmer and Mom was a chemist. Both super-smart," she says. "I saw lots and lots of cases like this. I started to think of autistic traits as being on a continuum. The more traits you had on both sides, the more you concentrated the genetics. Having a little bit of the traits gave you an advantage, but if you had too much, you ended up with very severe autism." She warned that efforts to eradicate autism from the gene pool could put humankind's future at risk by purging the same qualities that had advanced culture, science, and technological innovation for millennia. The maker of the first stone spear, she observed, was likely a lone autistic at the back of the cave, perseverating over the subtle differences between various types of rocks — not one of the "yakkity yaks" chattering away in the firelight.
Aware adults with autism and their parents are often angry about autism. They may ask why nature or God created such horrible conditions as autism, manic depression, and schizophrenia. However, if the genes that caused these conditions were eliminated there might be a terrible price to pay. It is possible that persons with bits of these traits are more creative, or possibly even geniuses. If science eliminated these genes, maybe the whole world would be taken over by accountants.
Sacks' own views of autism were also evolving swiftly, informed by the insights of Lorna Wing, Uta Frith, and other cognitive psychologists in London who were reframing autism as a broad and diverse spectrum that includes both children and adults, instead of as the rare and monolithic form of "infantile" psychosis described by psychologists for 40 years.
When he first read Emergence, however, he suspected that Grandin's co-author, Margaret Scariano, must have ghostwritten it. "The autistic mind, it was supposed at that time, was incapable of self-understanding and understanding others and therefore of authentic introspection and retrospection," Sacks told me. "How could an autistic person write an autobiography? It seemed a contradiction in terms." After reading dozens of her papers, however, he found that Grandin's distinctive persona — that of an irrepressibly curious observer of society from the outside, an "anthropologist on Mars," as she put it — was consistent throughout. She was clearly writing in her own voice.
Before meeting Grandin, Sacks had spent the summer visiting camps for autistic kids and acquainting himself with a California couple he called the B.'s. Upon meeting in college, Mr. and Mrs. B. felt like they had known each other for a million years. As fellow Star Trek fans, they liked to say that they had beamed down on the transporter together. Both of their sons turned out to be autistic — one nonverbal and one with Asperger's syndrome — so they put up a trampoline in their backyard where the whole family could jump and flap their hands to their hearts' content. Their walls were emblazoned with surrealistic cartoons, their bookshelves were laden with science fiction, and notes posted in the kitchen offered meticulously explicit directions for cooking and setting the table. Sacks initially assumed that these detailed directives were an expression of the B.'s need for order and routine, but he eventually realized they were a family in-joke at the expense of those who thought that autistic people were incapable of "getting" humor.
The B.'s were well aware that the protocols and conventions of nonautistic society were opaque to them, and that they were required to "ape human behavior" at work, as Mr. B. put it, to avoid alarming their professional colleagues. But Sacks reported that they had come to feel that their autism, "while it may be seen as a medical condition, and pathologized as a syndrome, must also be seen as a whole mode of being, a deeply different mode or identity, one that needs to be conscious (and proud) of itself." At home with other members of their tribe, in an environment designed for their comfort, they didn't feel disabled; they just felt different from their neighbors.
Eager to observe Grandin in her native element, Sacks spent several days touring cattle farms and meatpacking plants that she helped design, sharing a meal of ribs and beer with her in a cowboy-themed restaurant, and visiting her at home, where he gamely climbed into her squeeze machine to try it out himself, finding a "sweet, calming" feeling in its mechanical embrace. They also took hikes together in the mountains, where he was impressed by her knowledge of the names of the local birds, plants, and rock formations, even if she seemed unimpressed by the feelings of sublimity and awe that they evoked in him. In turn, Grandin was amused to discover that the eminent neurologist was nearly as eccentric as she was. "He was like a kindly absentminded professor who zoned out a lot," she recalls. "When he had to pee in the woods, he announced that he was going to 'fertilize the ground.' He had me stop the car so he could go swimming in a lake, but he didn't notice that the current would have carried him right over a dam. I probably saved his life."
Their interactions made such a profound impression on Sacks that he ended up writing an in-depth profile of the lanky, gruff industrial designer that became the centerpiece of his next best-seller, An Anthropologist on Mars. After fifty years of case reports describing autistic people in terms befitting robots or "imbeciles," Sacks presented Grandin in the full breadth of her humanity — capable of joy, whimsy, tenderness, passion about her work, exuberance, longing, philosophical musing on her legacy, and sly subterfuge (she smuggled him into a plant by giving him a hard hat and telling him to act like a sanitary engineer). He acknowledged the prevailing theory that autism is "foremost a disorder of affect, of empathy," but also explored her deep sense of kinship with other disabled people and with animals, whose fates she saw as intertwined in a society that views them both as less than human. She came to see her profound emotional connection with animals as essentially autistic, and crucial for her work. "If I could snap my fingers and be non-autistic, I would not, because then I wouldn't be me," she told Sacks. "Autism is part of who I am."
After the publication of An Anthropologist on Mars, Sacks's office was deluged with letters from readers who saw aspects of themselves, their relatives, or their coworkers in his descriptions of a mature person on the spectrum with a complex inner life. "It was overwhelming, like opening a floodgate," recalls Kate Edgar, the neurologist's longtime assistant and editor. "There was such a pent-up desire to have a name for this cluster of traits in older people and to hear someone talk about autism from the perspective of acceptance."
Soon, using tools for communication at a distance like the internet, autistic adults would start to build their own communities and launch a movement to demand acceptance from mainstream society, coining the term "neurodiversity" to celebrate the varieties of human cognitive styles and the contributions of people like Grandin to the evolution of technology and culture. In many ways, these developments were a logical evolution of the approach that Sacks took in his books.
Reflecting back to his days on Ward 23, he told me that meeting George and Charles Finn was the first time that he realized that autism could convey special gifts as well as challenging deficits. "19th Century neurology was largely based on lesions and agnosias and all the things that can go missing or wrong" in the brain, Sacks explained. "But I've always been more interested — in both in a neurological way and a human way — in what is spared or enhanced. The twins were the first enhanced autistic people I ever met."
Adapted from NEUROTRIBES by Steve Silberman, published by Avery, an imprint of Penguin Publishing Group, a division of Penguin Random House LLC. Copyright © 2015 by Steve Silberman.
Steve Silberman is the author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published this month by Avery Books.