HEALTH

Autism’s rich reality

A sufferer sheds light on a mysterious disorder

PATRICIA CHISHOLM November 9 1992
HEALTH

Autism’s rich reality

A sufferer sheds light on a mysterious disorder

PATRICIA CHISHOLM November 9 1992

Autism’s rich reality

HEALTH

A sufferer sheds light on a mysterious disorder

As she walked through the streets of downtown Toronto late last month, Australian author Donna Williams suddenly stopped and pointed to a solitary maple tree with yellow autumn leaves. “It’s as though it were covered with pears,” she said excitedly. "And it’s nicer than a lot of maple trees together. In a group, they just look like a jumble to me.” Spontaneous and observant, Williams is engaged in a constant struggle with the world, a struggle to sort out images that may be too bright for her to absorb, noises that may be too loud, and conversation that may carry no meaning, although the individual words are understood. Variously described as “weird,” “a retard,” or “spastic” by her own family, Williams, now 29, was in her mid-20s before she learned that she suffered from autism, a devastating neurological disorder that affects about 10 out of every 10,000 Canadians. To an unusual degree, Williams has managed to rise above the limitations of her disability and now is able to reveal to the world much of the mysterious inner life of the autistic.

The condition has long confounded researchers. In 1943, Leo Kanner, a psychiatrist at Johns Hopkins University in Baltimore, first identified autism as a distinct disorder. But the cause and precise nature of the syndrome remain surrounded in mystery.

Afflicted children appear withdrawn, speak late or not at all, and some recoil from any kind of physical contact with other humans. And while about 10 per cent of people with autism are eventually able to live and function independently, many others have great difficulty developing even rudimentary interpersonal skills. In her autobiography, Nobody Nowhere, published last month by Doubleday Canada, Williams offers a rare view of what autism feels like from the inside. Williams’s book is part of a wave of new information and research that is slowly beginning to shed light on one of medicine’s most poorly understood disorders. Said Margaret Whelan, executive director of the Torontobased Geneva Centre, which provides support and education for the autistic and their families: “Because it is a silent affliction, this is one of the few remaining medical frontiers. But new research is beginning to shake the bedrock of what we know.”

Williams’s book provides a penetrating view of the radically different world that many autistic people inhabit. As well, it sheds light on the painful misunderstandings that can result from autism’s most crippling effect—the inability of many autistics to communicate with other peo-

ple. Born in Australia, Williams was raised in a family that refused to accept her alienating actions as anything other than a form of wilful misbehavior. (To protect her own privacy and that of her family, Williams refuses to disclose some biographical details, such as her exact birthplace.) When she was two years old, a local doctor tentatively diagnosed Williams as being autistic. But her family rejected the label out of shame and ignorance. Instead, her mother and older brother subjected the child to verbal, emotional and physical abuse. In Nobody No-

where, Williams says that one of her first memories is of “bright spots of fluffy color” that seemed to float before her eyes and surround her. The “bright spots” were dust particles reflecting sunlight in the air. But typically, when she tried to follow the spots by looking into the light and rubbing her eyes, her mother would command her to “stop that.” To her, the words were no more than intrusive babble and when she continued to rub her eyes, her mother harshly slapped her.

Later, experts in autism told Williams that her perception of the dust particles was the result of hypersensitive vision, which is found in some people with autism. Until she was four years old, Williams exhibited echolalia—a classic symptom of autism in which the child repeats the words of others precisely, but without apparent understanding of their significance. Even after she learned to respond appropriately, the normal pace of human conversation was usually too rapid for her, making school a torment. In her desperate efforts to feel secure in a frightening world, Williams would submerge herself in activities that felt reassuringly safe: she would check and recheck to see that the family’s set of encyclopedias was in alphabetical order or leaf through a telephone book and systematically call the first and last name listed under each letter.

Williams recalls that by the time she was 12, she began to notice that she was extraordinarily skilled at some activities. A prodigious memory helped her to achieve a spectacular score on a comprehensive school test, and she was able both to play the piano by ear and to compose her own pieces. Still, her first job in a clothing factory at the age of 15 ended in disaster. She was fired after she mined several expensive coats by putting buttonholes in sleeves, collars and back panels. “I hadn’t realized the buttonholes were meant to go anywhere in particular,” she relates.

A series of brief dead-end jobs followed, finally culminating in a pivotal meeting with a psychiatrist at a hospital where she fled after a suicide attempt. Within a few years, the therapist had convinced her to return to secondary school. There, she found teachers who were willing to give her special help. Her success encouraged her to go on to university, where she studied sociology and linguistics. Although she sometimes missed the flow of words in lectures, she worked hard and relied on her memory and facility with written language. She graduated with high marks. Even so, it was not until after she had travelled to Europe in her mid-twenties, written the story of her life and showed the manuscript to Dr. Sebastian Kraemer, a psychiatrist at a hospital in London, England, where she was working as a secretary, that she discovered she was autistic.

After that, Williams says, the world seemed to open up to her. She consulted experts in autism, who helped her to understand her disability and provided strategies for communicating. After experts explained some of the differences between the way people with autism and others relate to the world, Williams says that she has begun to understand much of what had been mysterious to her. To others, autistics often appear to lack human emotions because they fail to respond to accepted social signals, such as smiles and conversational cues that indicate pleasure, anger or other emotions.

Despite the difficulties she describes in her book, Williams in person is talkative and responsive. She prefers to meet people outdoors, and although she is almost incapable of ordinary small talk, she responds clearly and honestly to questions. She is also brave. As she approached Yonge Street in Toronto’s downtown core during an interview in October, fans of the world champion Toronto Blue Jays baseball team, who had just won the World Series, were filling the air with loud cheers. Although Williams was clearly intimidated by the noise, her determination to visit a drugstore on the other side of the intersection won out and she crossed, with a sharp warning to her companion not to touch her. When she entered the brightly lit store, Williams put on dark glasses, because she says that bright lights cause her to feel intense discomfort.

Still, Williams says that the world in many ways has become an easier place for her. Because she is able to tell others about her disability, they now take account of her needs, and do not frighten her by expecting her to respond as other people do. She has also come to recognize that her talent for music can help connect her emotionally to other people. Said Williams: “I now feel that emotions are the key to experiencing life instead of just functioning. It is the difference between appearing and being.”

Williams’s own victory over adversity has coincided with a growing interest on the part of medical researchers in autism and its causes. Until recently, some experts believed—erroneously—that most autistics were mentally handicapped. There was also a widely held theory that autism was the product of so-called bad mothering. That belief has now been discredited. Dr. Peter Szatmari, a consulting psychiatrist at the Chedoke-McMaster Hospital in Hamilton, Ont., says that autism is now thought to be caused by defects in the brain, possibly in the limbic system, an area deep inside the brain that is believed to be the centre for the regulation of emotions. In some cases, the defect appears to be genetic, while in others it is associated with viral diseases. But in

most cases, the causes are simply not known, Szatmari said.

Meanwhile, a new way of teaching people with autism to communicate appears to be helping some victims of the disorder and their families. Known as facilitated communication, the method includes the use of computers,

typewriters and alphabet boards to help autistics express their thoughts. Elizabeth Millar of Kettleby, Ont., 60 km north of Toronto, says that the system seems to have helped her autistic daughter, Jessica, 11, to express some of her emotions. Now, after years of visiting specialists and receiving special schooling, Jessica is able to maintain a close relationship with her younger sister, who is not autistic. Millar, who says that she felt lost when she learned of her daughter’s disability, now has hope that Jessica may someday be able to function independently, or at least semiindependently.

That is not unlike the optimism that has permeated the life of Williams, who says that she has always known many happy moments, despite the terrible obstacles she faced. “I’m always captured by the wonderful sense of things,” says Williams. In learning to communicate so lucidly with others, Williams has made it possible for the world’s nonautistic majority to know something of the strange, rich reality in which she and other autistics live.

PATRICIA CHISHOLM