Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat, organized by an autistic self-help group called Autism Network International.

Ne’eman’s deliberate use of the phrase “the autistic community” was more subversive than it sounds. The notion that autistic people — often portrayed in the media as pitiable loners — would not only wear their diagnosis proudly, but want to make common cause with other autistic people, is still a radical one. Imagine a world in which most public discussion of homosexuality was devoted to finding a cure for it, rather than on the need to address the social injustices that prevent gay people from living happier lives. Though the metaphor is far from exact (for example, gay people obviously don’t face the impairments that many autistic people do), that’s the kind of world that autistic people live in.

Now, as the first openly autistic White House appointee in history — and one of the youngest at age 22 — Ne’eman is determined to change that.

In December, he was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for people with all forms of disability.

Ne’eman spoke to Wired.com in July in his first interview with the media since his appointment.

His nomination proved controversial, in part because some self-proclaimed allies of the autistic community think national dialogue on the subject should focus primarily on finding causes and cures so that autism can be prevented in future generations.

In March, the editor of an anti-vaccine website called The Age of Autism challenged Ne’eman’s ability to serve the needs of more profoundly impaired autistic people. “Do the highest functioning with the community,” wrote Kim Stagliano, “have a right to dictate the services and research that should be available for their less fortunate ‘peers?’ I don’t think so.”

Some of these online attacks escalated into threats. One anonymous emailer to a federal agency in Washington wrote that “assholes like Ari Ne’eman” should “have their tongues cut out” for suggesting that autistic people need respect, civil rights, and access to services more than they need pity and a cure. This conviction has made him a leader of the emerging neurodiversity movement, which Ne’eman sees as a natural outgrowth of the civil rights, women’s rights, and disability rights movements of the late 20th century.

In the wake of the controversy, an anonymous Senate hold was put on Ne’eman’s nomination. While this hold was in place, he was unavailable to talk to the press. But just before the coming-of-age ceremony at Autreat, the hold was dropped, and he was finally able to take his seat on the council. Now, Ne’eman says, he’s eager to clear the air about what he really believes about autism, neurodiversity, the controversy over his nomination, and what autistic people really need.

Wired.com: Much of the national conversation about autism in recent years has centered around statements by celebrities like Jenny McCarthy and Jim Carrey who claim that autism is caused by vaccines and other environmental factors, and can be cured by things like special diets, behavioral interventions, and alternative medicine. Is that the most productive conversation we can be having about autism as a society?

Ari Ne’eman: No. There’s a disturbing lack of attention to science in that conversation, but the problem goes deeper than that. What we have is a national dialogue on autism without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

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Authors: Steve Silberman

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