The intro to the interview in
Wired Science:
When Ari Ne’eman (pictured) walked onstage at a college campus in Pennsylvania in June, he looked like a handsome young rabbi presiding over the bar mitzvah of a young Talmudic scholar.
In truth, 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.
Growing up in New Jersey as a kid with Asperger’s syndrome, Ne’eman struggled with an inability to parse the social cues that most “neurotypical” people take for granted — such as the little smiles, ironic eye-rolling and other forms of nonverbal expression — which made him the butt of endless bullying. Instead of being able to attend a good school in his hometown, Ne’eman was forced to attend a segregated school for special-needs kids located more than an hour from home, an experience that the bright, aspiring policy wonk found immensely frustrating.
Shortly after graduating high school, Ne’eman launched a national organization called the Autistic Self-Advocacy Network, which helps people network with one another to gain access to crucial support services and fight for their civil rights. Ne’eman’s nomination to the NCD was hailed as a milestone by groups like the American Association of People with Disabilities.
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 Carey 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.
Wired.com: The most prominent and well-funded autism advocacy group in America is Autism Speaks. Is this group not doing its job?
Ne’eman: The core of the dispute between autistic people and Autism Speaks is a problem that’s very common in the disability community: organizations that claim to speak for disabled people without including them in the conversation. Groups like Autism Speaks have taken tremendous amounts of money out of local communities, but haven’t included the people they claim to be serving in their decision-making structure. Promoting fear of autism and pity for autistic people may be good for their bottom line, but it actually hurts us in our efforts to have the kind of lives we deserve to have.
Autism Speaks raises lots of money through their walks for a cure, but only four cents on every dollar goes to services for autistic individuals and families. That’s surprising and concerning, given the kinds of challenges that people are facing in today’s fiscal climate with state budget cuts leading to the gutting of services. Instead, the money goes to advance Autism Speaks’ research and advertising agendas.
Obviously, funding autism research is very important. There’s a lot that could be done to significantly improve autistic people’s quality of life. But instead, groups like Autism Speaks have been prioritizing things like developing prenatal tests to detect autism in the womb. That doesn’t help the millions of autistic people who have already been born. Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need.
Wired.com: Many Wired readers work in the tech and software industries. How could they help improve the lives of autistic people?
Ne’eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily — so-called augmentative and alternative communication [AAC] — we’d have a vast improvement in the quality of life for autistic people and their family members.
We’ve already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won’t pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.
Second, I’d love to see research into ways of using social media to improve access for disabled people. If there was some kind of web-based tool or mobile app that enables people to flag buildings with “very good” or “very bad” access, it could spur a lot of positive social change.
Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors. The internet has proven to be very important for autistic people, because it’s given us a chance to connect with each other and start to form a culture of our own. We’ve barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education across the whole life span of autistic people — not just when we’re kids.
Wired.com: The news of your appointment to the National Council on Disability was greeted with praise from groups like the Autism Society of America and the American Association of People with Disabilities, but also stinging attacks. On one site, a mother of two autistic kids compared you to a “blind surgeon” who would be unable to do an effective job on the council. Were you surprised by the intensity of these attacks?
Ne’eman: I was, actually. The level of prejudice was pretty shocking. Some people relied on outrageous but all-too-familiar stereotypes to claim that it doesn’t make sense to have an autistic person on the National Council on Disability, such as the bizarre notion that autistic people are emotionless sociopaths. The weirdest accusation was that I got the appointment because my parents are Israeli — a reminder of the anti-Semitism that lurks behind many types of conspiracy theories.
But I think other people raised understandable concerns, and I want to engage with them. After my first meeting with the Interagency Autism Coordinating Committee at the Department of Health and Human Services, a woman told me that after hearing me talk about the dangers of over-prescribing psychiatric medication to autistic kids, she felt more confident that my work on the council will be relevant to her kid’s life.
For anyone who’s wondering if my service on the council will have a positive impact on the life of their child, I invite them to take a close look at what we’re trying to do. I think they’ll be pleasantly surprised. My intention is to be a voice for the issues that matter for all autistic people and our families, such as services, support, and education.
