Inside the Autistic Mind

PURE JOY: A child on a swing belies the stereotype of the autistic automaton.

STEVE LISS FOR TIME

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Autistic people have been shown to use their brains in unusual ways: they memorize alphabet characters in a part of the brain that ordinarily processes shapes. They tend to use the visual centers in the back of the brain for tasks usually handled by the prefrontal cortex. They often look at the mouth instead of the eyes of someone who is speaking. Their focus, says psychologist Ami Klin of Yale's Child Study Center, is "not on the social allegiances — for example, the longing gaze of a mother — but physical allegiances — a mouth that moves."

Do these differences reflect fundamental pathology, or are they downstream effects of some more basic problem? No one knows. But the fact that early intervention brings better results for children with ASD could be a clue that some of the odd brain anatomy and activity are secondary — and perhaps even preventable. Studies that look at whether early therapy might help normalize the brain are beginning at York University in Toronto, but results are probably years away.

AUTISM FROM THE INSIDE
In the meantime, 300,000 school-age American children and many adults are attempting to get through daily life with autism. The world has tended to hear from those who are highest functioning, like Temple Grandin, the author and Colorado State University professor of livestock behavior known for designing humane slaughterhouses. But the voices of those more severely affected are beginning to be heard as well. Such was the case with Sue Rubin, 27, a college student from Whittier, Calif., who has no functional speech and matches most people's stereotyped image of a retarded person; yet she was able to write the narration for the Oscar-nominated documentary about her life, Autism Is a World.

What such individuals have to say about their experience is offering new clues to their condition. It also conforms remarkably to what scientists see inside their brains. By and large, people with ASD have difficulty bringing different cognitive functions together in an integrated way. There is a tendency to hyperfocus on detail and miss the big picture. Coordinating volition with movement and sensation can be difficult for some. Chandima Rajapatirana, an autistic writer from Potomac, Md., offers this account: "Helplessly I sit while Mom calls me to come. I know what I must do, but often I can't get up until she says, 'Stand up,'" he writes. "[The] knack of knowing where my body is does not come easy for me. Interestingly I do not know if I am sitting or standing. I am not aware of my body unless it is touching something ... Your hand on mine lets me know where my hand is. Jarring my legs by walking tells me I am alive."

Such descriptions shed light on seemingly self-destructive behavior like biting, scratching, spinning and head banging. For people like Rajapatirana, banging against a wall can be a useful way to tell, quite literally, where their head is at. "Before we extinguish [such behaviors], we need to understand what they are telling us," writes Judith Bluestone, a Seattle-based therapist who is autistic, in The Fabric of Autism.

In his new book Send in the Idiots, British journalist Kamran Nazeer, who is also autistic, describes the need for repetitive motions or words as a search for "local coherence" in a world full of jarring randomness. He also conveys the social difficulties: "Striking up conversations with strangers," he writes, "is an autistic person's version of extreme sports." Indeed, at a recent retreat for people with ASD, attendees wore colored tags indicating their comfort level with spontaneous conversation: red meant don't approach, yellow meant talk if we've already met, green indicated, "I'd love to talk, but I'm not good at initiating."

Perhaps the worst fate for a person with ASD is to have a lively intelligence trapped in a body that makes it difficult for others to see that the lights are on. Neuroscientist Michael Merzenich at the University of California, San Francisco, studied an autistic boy who is unable to speak or even sustain his attention to a task for more than a few moments, and yet is aware of his condition and writes remarkable poetry. How many other autistic kids, Merzenich wonders, "are living in a well where no one can hear them"?

Luckily for Hannah, her voice and thoughts are being heard. Since learning to type, she has begun to speak a few words reliably — "yes," "no" and the key word "I" — to express her desires. All this seems miraculous to her parents. "I was told to give up and get on with my life," says her mother. Now she and her husband are thinking about saving for college.

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