It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman-he'd mentioned it when we first started talking more than a year ago-but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.
Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening-a behavior experts call perseveration. Later it was constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music-the Beatles were a favorite-but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered-how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says.
He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults-and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.
Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."
The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.
I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says.
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