Erasing Autism

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?

Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very ex-hausting act."

He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.

One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.

© 2009