Remapping the World of AUTISM
Autism in Unexpected Places
When Isabel was first diagnosed, in April, 1994, things were
just starting to change for people with autism. That month
was a beautiful month in Washington. The cherry blossoms
were in full bloom and there was even some good news in the
world. In India, the Untouchables, or outcastes, were out in
the streets for everyone to see, protesting for better jobs and
pay. South Korea, a country whose people barely knew what
a North Korean person looked like, had just accepted 100
North Korean defectors from Siberia. And in South Africa,
President F.W. de Klerk conceded to Nelson Mandela in an
election that would finally give Blacks the political rights and
representation they deserved. And in my little corner of the
world, a suburb of Washington, D.C., more and more special
needs children were being included in mainstream classrooms,
being challenged and succeeding academically to a
degree that few educators ever thought possible. These changes made visible the formerly invisible. Autism is becoming more visible too, and in some unexpected places.
In the winter of 2005,
Mamta, a young mother from Nainital, in the foothills of the Himalayas, brought her three year old boy,
Ohjyu, on the 7 hour train ride to New Delhi, despite her family’s protest. She was convinced he had autism, even though none of the doctors in Nainital believed her. She was going to learn how to interact with him and help him learn, even if it meant abandoning her husband and parents-in-law in their mountain village for months, an action many of her friends and neighbors thought was outrageous. Manta could only imagine the insults hurled behind her back. Within days after arriving in Delhi, her son was diagnosed with autism and she had a treatment plan in place.
In KwaZulu-Natal, in South Africa, Suzanna and Golden Khumalo didn’t know what to do about their six year-old son, Big Boy. He had stopped talking, didn’t respond to his name, made strange movements with his hands, and avoided all eye contact. Suzanna and Golden fought with Golden’s parents, who insisted Big Boy go to a nyanga, or witchdoctor. But Suzanna and Golden were scared of the witchdoctor. He would likely arrange goat sacrifices to please the ancestors, give Big Boy an emetic to make him vomit, and a laxative to expel the evil inside of him. Finally, Suzanna and Golden surrendered to custom, and brought Big Boy to the nyanga. After three days in the doctor’s village, he finally gave Big Boy a diagnosis. It was “autism,” he said, a word no one ever expected to hear from a nyanga’s mouth. Suzanna and Golden now know a lot about autism. Suzanna even told me that in South Africa 1 in 166 children have autism. She couldn’t tell me where the figure came from—I knew there hadn’t been an epidemiological study conducted anywhere in Africa—but she promised to find out. When I saw her in the parking lot of Big Boy’s school the next day, she called out to me, “It’s from Brick Township, New Jersey!”
Just outside Lima, Peru, in 1975, a young school teacher named Lily Mayo, visited a church hospital, where children and adults with autism were kept in cages. Over the adult cages the priests had hung a sign that read “No Te Acerques Por Que Muerdo” (“Beware, I bite”). The villagers and the priests believed the children were either possessed by the devil, or were being punished for the sins of their parents. Lily recalls those days from behind her desk at the Anne Sullivan Center in Lima, an autism treatment and education facility she directs. Her assistant, a thirty-two year old man with autism, brings her papers to sign. In 2005, exactly thirty years after her first encounter with autism, Lily is writing agreements with some of Peru’s largest corporations to hire young adults with autism, people who will become a visible part of their communities.
On winter mornings, when I took our daughter, Isabel, to her preschool at the Smithsonian Institution, you could see the glow of sunrise above the Capitol building, sometimes turning the Washington Monument a light shade of orange or yellow or even purple, a color so pale you weren't sure what it was. There are twenty-foot Saucer Magnolias around the museums, lindens, hollies and weeping birches, whose shapes and textures made Isabel stop and stare. I recall, most vividly, the occasional patches of Corylus "contorta," one of the strangest looking trees you'll ever see. The branches of the Corylus, revealed in winter, twist and curl as if afflicted with a mysterious disease. It doesn't grow the way a tree is supposed to.
In 1996, Isabel's teachers at the Smithsonian showed her a book, Linnea in Monet's Garden, that tells the story of a Swedish girl who travels with her elderly neighbor, Mr. Bloom, to Monet's house and garden in Giverny, France. Isabel carried it with her everywhere.
She couldn't read or write, and like many other children with autism, she didn't like to talk to anyone but herself. Though she was five years old, she could speak only about two hundred words, all nouns, most of them Disney characters or the sixty Thomas the Tank Engine trains. She had just learned to say "Mommy" and "Daddy." My wife, Joyce, and I had worked hard for three years, using various therapies to battle Isabel's inability to relate to people, and she had made steady, slow progress.
But Linnea had a power we didn't. As we read the book to her that year, maybe a hundred times, Isabel started to sound out the words and read. It had cast a spell on her.
Three years later, when Isabel was eight, she rediscovered the book. Joyce bought an animated version, and Isabel became hooked on that too. We took her to the National Gallery of Art, to see one of Monet's paintings of the famous water lily pond and the Japanese bridge. Isabel stared at it from around a corner, peering at it only briefly, then darting away, seeming to take in the entirety of the image in a split second.
Sometimes she stood on the shiny, circular, marble coffee table in our living room, dressed in a black tee-shirt, sun dress, black shoes and hat, just like Linnea, and said "Japanese bridge." As she focused on the surface of the table, I imagined she saw in it Monet's double garden, the pool with its water lilies and the reflection of the sky and landscape. She was uncharacteristically calm at these moments, a calm that would not return until August of the next year, when we took her to Giverny to spend the day - as Linnea - in Monet's Garden.
We went to Giverny to help Isabel make the leap from the book's finite words to other realities like French culture and language. The place was a marvel. In the late morning, after a rain shower, the garden was overwhelmingly green. Like Monet's painting at the National Gallery, the land and the water blurred together at the edge of the mirror Isabel knew so well. She raced toward the Japanese bridge and stood at its apex for an hour.
She seemed mesmerized and was more serene than I had ever seen her - like Monet, I thought, who must have watched the pond for hours waiting for the just the right impression to inspire him. Did Isabel notice how the pond changed with every new wind or movement of the clouds? There were carpets of flowers, streaks of color that she probably never noticed because Giverny was, for her, the repetition of a script. Dressed like Linnea, she sat on the same steps Linnea did, picked up her right foot and stretched her arms above her head in joy the same way Linnea did and, like Linnea, took a small green leaf to press inside a book. She was getting her own impressions, but I think they were impressions of completeness: the book, the video, and now reality.
Call the trip extravagant but a single day in Giverny would transform her, and in a way we never anticipated. She started saying words in French, so often that we enrolled her in a French class. It was like speech therapy, simple conversation in pretend social settings, and she blossomed. I had to sit with her to keep her on task, but she absorbed the vocabulary and pronunciation with amazing speed. After the second week, the teacher asked me if Isabel's mother was French.
Then, one day, she approached a stranger, walking his dog, and asked, "Le chien est gentil?" I translated - "Is your dog nice?"- he nodded yes, and Isabel, who had been terrified of dogs for years, touched the top of its head.
Few experts would ever suggest that a child with autism study a foreign language. But it worked for her. She applied the lessons learned in French class to new situations, at home and in public. The people she spoke to - the cashier at the grocery store or the man walking the dog on the street - didn't speak French, but it didn't matter to us. She was interacting with the world.
Today, Isabel is more social than we ever expected. She also has her own dog, a French Bulldog named Linnea. She's registered with the American Kennel Club under the name Linnea of Monet's Garden.
When the Austrian doctor, Leo Kanner (1894-1981), the father of contemporary understandings of autism, took his first job as a psychiatrist in the United States, he had to go to an asylum. There was little else he could do. Almost all psychiatric work was done in big institutions, many of them warehouses for the “chronically insane.” During Kanner’s medical school years, the American Psychiatric Association was still called the Association of Medical Superintendents of American Institutions for the Insane.
Most of these institutions were less than thirty years old but, by 1904, 2 in every 1,000 Americans lived in one. By mid-century, more than 500,000 Americans lived in mental institutions, more than 3 in every 1,000. The patients, many of them violent and with signs of psychosis, were often locked in barren cells, strait-jacketed. Not surprisingly, they usually got worse the longer they were there. Most asylums were depressing and inhospitable, unsanitary and with poor ventilation. And the psychiatrists, working in miserable conditions and having little hope of actually helping anyone improve, questioned the goals of their discipline. Was it simply to decide who was abnormal and then separate them from society, or was it to treat people and make them productive members of society? They were demoralized and found themselves denigrated by the medical establishment as second-rate caretakers. In 1928, the psychiatrist Werner Heinz poked fun at himself and his colleagues, saying that those doctors who decided to become psychiatrists were “afraid of failing,” “physically and intellectually inadequate.” They enjoy the asylums, he joked, because “they stand out there less.”
This was the same period during which my grandfather, Roy R. Grinker, Sr., became a psychiatrist. His career spanned most of the 20th century, from the early 1930s to his death in 1992, and for much of that time he was, like Heinz, cynical and pessimistic about psychiatry’s future. For a time, he thought the only hope for psychiatry was psychoanalysis. At least psychoanalysts treated patients, usually fairly healthy patients, people who were capable of making real progress. Psychoanalysts listened too, rather than shut their patients away in silent cells, believing the patients had something important to say. In 1935, my grandfather founded the Department of Psychiatry at the University of Chicago, with an annual salary of less than $10,000, just weeks after he returned from Vienna and his expensive analysis with Sigmund Freud ($25 an hour, equivalent to $330 in today’s money, all paid for by the Rockefeller Foundation).
But there wasn’t much they could do for the most severely ill patients, other than sedate them, and little would change until May, 1954, the month Smith, Kline, and French introduced Thorazine, the first antipsychotic medicine. Before that time, doctors used hypnotics, like chloral hydrate and paraldehyde, or mixed them together in a colorful concoction many doctors called the “Green River.” It wasn’t metabolized by the liver, so the patients exhaled it, and, because it had a fruity odor, it attracted insects. “You would always know the patients with schizophrenia,” my grandfather told me, “because they’d be the ones with flies buzzing around their faces.”
Leo Kanner was born Chaskel Leib Kanner, at home, to orthodox Jewish parents in a small Austrian village called Klekotow, in 1894 and he would struggle with these names for the rest of his life. He hated the sound of the name Chaskel, a Yiddish version of Ezekiel. Nor did he like Leib, so he changed it to Leo. And in the United States, despite telling people that Kanner should be pronounced “Connor,” only one person ever got it consistently right, a long-time Irish patient of the Phipps asylum in Baltimore who consistently called him Father O’Connor and said he was ready to give confession. In his retirement, Kanner would often ask himself whether all the fuss over names and naming in the world was really worth it.
Kanner described his father as abnormally short, socially awkward, obsessively dedicated to Talmudic studies, but also eager to absorb large amounts of useless information on just about anything in the world. Had his father lived in the 21st century, he might very well have been diagnosed with Asperger Syndrome. Kanner recalled that his mother played with his father’s unusual skills as if he was a toy, getting great pleasure by having him perform his amazing memory in public. If she had a skill, it was the art of opposition. She strayed from Jewish tradition often, and would eventually place Kanner in a public, non-Jewish high school where he felt isolated and unusual.
He was the only Jew in the school. Kanner, his four other siblings, and their parents—especially his mother—knew that for the children to get anywhere in life, they had to leave Klekotow. So at the age of 12 Kanner went to live with his uncle in Berlin, soon followed by the rest of his family. The Kanners lived simply, managing a small hotel while Leo’s father became a middleman in the rag business, and living in a small ghetto occupied by Galician immigrants. Kanner was one of the top students in the school, but he was isolated and lonely as the sole Jewish boy.
Now that Kanner didn’t live near his paternal grandparents he visited them as often as possible. He never understood why he liked them so much but it could be because they were as socially awkward as he and his father. They were both emotionally flat to a fault, matter of fact, seemingly incapable of showing much emotion. In later years, Kanner would remember how odd it was that their personalities and emotions seemed unchanged during and after tragedies, as when their son was called to military duty during World War I, or when their seventeen year-old daughter died from Typhoid. When his grandfather died, Kanner didn’t shed a tear. He wrote in his unpublished papers, now lodged at the American Psychiatric Association, that both grandparents were “paradigms rather than real people of flesh and blood.” How can you love or mourn people, he reflected, who were almost shadows of real human beings, people whose feelings never break the surface?
So Kanner was a lonely boy raised by bizarre, unexpressive people. And he often felt himself to be on the margins of society. Is it any wonder, then, that as an adult, he would be so sensitive to the needs of the handicapped, and so acutely aware of the social deficits that would become the hallmark of autism diagnoses?