Somebody Somewhere

By Margaret Welwood

In her first book, "Nobody Nowhere," (reviewed in ABILITIES, Fall 1995), author Donna Williams takes the reader into a world inhabited by only four in 10,000 people: a world of "meaning-deafness" and "meaning-blindness" known as autism. She explains why she experienced panic attacks, slashed her face, threw her toys out the window, and called a stranger because he was the first "A" in the phone book. It all made perfect sense within her world.

"Autism had me in a cage for as long as I had ever known," she writes. William’s first words were "the meaningless echo" of the conversations of those around her, and "every facial expression or pose was a cartoon reflection... I had been both echolalic and echopractic, able to mimic sound or movement without any thought whatsoever about what was heard or seen," she explains.

As a toddler, Williams memorized and mimicked entire conversations with correct accents, never speaking directly to anyone. As an adult she could "drive, paint, compose, and speak several foreign languages, all without thought or effort."

She created "characters" to interact with the real world: Carol, who was cute and promiscuous, and Willie, who was intellectually gifted and highly competent. After her diagnosis of autism at the age of 25, Williams abandoned them in search of the real Donna. In her struggle to be "normal," she also let go of the "beautiful side of autism" -- a world of pattern, colour and sound without meaning. Her world became, for a time, even lonelier and more incomprehensible and terrifying.

Few of us can relate to the emptiness Williams must have felt when the therapist’s words finally hit home: Things without nervous system don’t have feelings. The rug that had sensed her presence, the chair that had felt the pressure of her body, leaves that had danced and furniture that had "stood around her -- all were without feelings. Normal" people relate to chaotic, incomprehensible, terrifying being like themselves. Their actions were a profound mystery to Williams, who recounts her father’s annoyance when she tried to get along with his girlfriend. "’You’ve ignored her friends. You leave the room whenever she speaks to you. You go out and sleep in the car whenever we try to take you out with us...’" he complained.

Williams was mystified. "I had treated her with some kind of respect I would have appreciated," she recalls.

She visited a "friend" named Tony when she was 14. What happened during the visit was unclear to her, but after putting her clothes back on and wandering outside for two hours, she deduced that she must have made a mistake and went back to apologize.

As a university student, she never knew how to interpret, "We’re going for a drink after class." Were the other students inviting her, or trying to hurt her by making her feel excluded?

Williams worked hard at responding "normally" in social situations. When bitten by a child, she experienced a "funny sensation to which I didn’t know how to respond. You should say ouch,’ I reminded myself silently. People say ouch’ if they get bitten."

Deep frustration and panic struck when she began to connect with her emotions. Williams writes of her brother’s attempt to comfort her after a small altercation. "I cried hysterically and hyperventilated in panic as the moving, fleshy, noisy thing that was my brother tried to swallow me up in what was called ’holding.’"

With intelligence, perseverance and courage, Williams forged a path into our world. "...Now I can distinguish between my personality and my difficulties," she wrote to her therapist in 1991. "I think it is this sharp contrast that makes me try so hard."

"By the end of the year," she reports, "I was able to hear directly with meaning about 50 per cent of the time, and 70 per cent on a good day (given one-to-one conversation, a familiar voice, and familiar surroundings). I began to experience ’self’ and ’other’ at the same time... I began to understand why people enjoy conversing and saw a glimpse of what I had been missing." She compares her disability to a seesaw. "When it is up or down I cannot see a whole life. When it is passing through the middle I get to see a glimpse of the life I would have if I were not autistic.

"Autism is just an information-processing problem that controls who I appear to be," she says. "Autism tries to rob me of a life, of friendship, of caring, of sharing, of showing interest, of using my intelligence... it tries to bury me alive."

The final chapter details a continuation of her struggle, and her determination: "I CAN FIGHT AUTISM... I WILL CONTROL IT... IT WILL NOT CONTROL ME."

"Somebody Somewhere" was published in New York by Random House, 1994, 238 pp.

(Margaret Welwood is a freelance writer living in Beaverlodge, Alberta.)