LIFE

Altered states

MARY NEMETH April 4 1994
LIFE

Altered states

MARY NEMETH April 4 1994

Altered states

LIFE

MARY NEMETH

A visitor enters the darkened library, discarding her heavy coat in a pile by the door. Donna Williams, slender and wispy and wearing tinted glasses, appears agitated, squirming in her chair at the centre of the room. “I was feeling buried,” she explains, the stranger’s clothing lay on top of her own discarded coat, an item that feels like an extension of herself. The offending coat can be moved easily enough, but Williams resists—showing a glint of the iron will that belies her slight stature. “Leave it,” she orders. “I’ll just sit and stew.”

Williams, a 30-year-old Australian author who suffers from autism, knows her coat is not really an extension of herself. Her discomfort, she adds, “is not my personality, it’s just a compulsion”—the product of a neurological disorder that makes it difficult for her to process information and to understand the chaotic world that bombards her senses. But it is a disorder she is intensely determined to overcome. “I CAN FIGHT AUTISM,” she writes in capital letters at the conclusion of her just-released second book, Somebody Somewhere. “I WILL CONTROL IT... IT WILL NOT CONTROL ME.”

Her first book, Nobody Nowhere, appeared in 1992 and, along with the writings of other highly able individuals with autism, helped to shed new light on a mysterious disorder that affects about one in every thousand people. ‘We finally have a group that can tell us what it’s all about” says Margaret Whelan, executive director of the Geneva Centre, an autism treatment and resource agency in Toronto. First identified in the 1940s, autism is defined chiefly by its symptoms: difficulties in communication, social interaction and behavior. Its root causes remain unclear and it is sometimes compounded by other mental disorders. As well, capabilities can vary enormously: for instance, some autistics do not talk at all, while others are highly articulate or have remarkable abilities, like the encyclopedic memory of the autistic character portrayed by Dustin Hoffman in the 1988 movie Rain Man.

Williams insists that she speaks only for herself. But she has learned how non-autistics experience the world and can offer a compelling explanation of how her experiences differ. Although she can hear, she sometimes has difficulty processing verbal information. If people talk too fast, or if she is otherwise distracted, she writes in Somebody Some-

An Australian author writes of her intense determination to overcome autism

where, the meaning “falls out” of the words. Her sight is also hyperacute. She perceives light bouncing “wall to wall” and writes of frequent episodes of sensory overload. Once, walking along a street in London, she glanced in at “the colored lights and rainbows shining brilliantly in the reflected light of a chandelier in an Indian takeout shop”—when, suddenly, she blew a fuse. “Meaning entirely fell out of all things visual,” she writes. “I didn’t know what the visual image of the form next to me, which a few seconds ago had been my publisher, meant any more. I looked desperately at this image trying to get the meaning back.” Williams’s experience appears consistent with that of other autistics. The Geneva Centre’s Whelan refers to one girl who has eyesight so acute that she can see each individual strand of hair on a person’s head. “Can you imagine how distracting that would be?” asks Whelan. “It would be punishing.” Many autistics appear to have such acute tactile sense that even a gentle stroke can be painful. And one girl—after undergoing a process called auditory training to soothe her hearing—explained that she had always been terribly uncomfortable on the beach, where even gentle waves sounded like crashing tidal waves. ‘The literature used to talk about kids holding their hands over their ears,” says Whelan. “Now, these people are saying that the sensory channels work differently.”

Williams herself did not know she had autism until her mid-20s, when she wrote out her life history to present to a psychiatrist. He encouraged her to publish and Nobody Nowhere appeared in 1992. It traces her upbringing in Australia (she will not reveal the exact location to protect her family’s identity). Early on, she exhibited some classic symptoms of autism—she mimicked others’ words until she was 4, for example. And she would immerse herself in reassuring, repetitive activities like checking, over and over, that the family’s encyclopedias were in alphabetical order. But her family, she writes, viewed her actions as wilful misbehavior and she was verbally and physically abused by her mother and older brother. Despite her difficulties, Williams has a prodigious memory; she eventually earned a university degree. And she developed alternate personalities—a practical character she called Willie and an ebullient one she called Carol—through which she imitated “normal” behavior whenever she went out into “the world.” Somebody Somewhere begins as the imminent release of her first book is about to shatter the emotional fortress Williams had built around her secret, inner world. That fortress had already exacted too high a price—her alternate personalities were so all-consuming that there was very little “self’ beneath them. Determined to know herself and experience the world directly, Williams discovered it could be an inhospitable environment for someone who would not pretend to be “normal.” Classmates at university, where she returned for a teaching degree, ignored or even tormented her. And often, she writes, it was difficult to persevere. “Being numb and unaffected, being someone other than yourself,” she writes, “is simply too addictive when being affected is so difficult and so sensorially overwhelming.”

Autism obstructed Williams’s efforts to know herself: she had difficulty perceiving the outer world as well as her own inner one. She explains that she usually did not experience feelings in response to specific events, although occasionally unidentified, stored-up emotions would flood over her, overloading her senses and forcing her mind to shut down. But Williams was determined to “feel” in order to experience closeness to others—something that terrified her. She writes movingly of the first time she drummed up the courage to touch a favorite aunt’s hand, how the aunt cried uncontrollably, and how Williams fully realized for the first time the hurt others felt at her inability to communicate affection. “I’m hurting for me and for all of them now,” she writes.

Williams does not believe in overnight cures, she says, as she sits in the library at her publisher’s offices in Toronto. Fighting autism has been a long, hard battle that she continues to wage. Since she fin-

ished Somebody Somewhere, she says, she has acquired special tinted glasses designed to cut down on her visual processing problems. “It is hard to care or be interested in what a person feels,” she explains, “when you perceive a body and then a hand and an eye and a nose and other bits all moving but not perceived in a connected way, with no perception of the context.” With her new glasses, and with considerable effort, “I get a lot of visual context now.”

Williams has also made progress identifying her feelings, although she concedes that it is still a struggle—“if I’m so distracted with what’s on my coat, for example.” And her progress on closeness is self-evident: Williams last year married a man named Paul (he asked that his surname not be published), who is also autistic and who sits with her during the interview. “When we first knew each other,” says Williams, “I’d think, ‘I’m too tired, it’s too hard, it’s like climbing mountains every day.’ ” But determination paid off. Now, she says, they help each other cope. “Now, on a good day,” she adds, “when I wear my glasses, and we don’t put ourselves in situations where we’re bombarded, it’s not like climbing mountains any more.”

MARY NEMETH