Ari Ne’eman, 27, co-founded the Autistic Self Advocacy Network when he was 18. He was appointed by President Obama to the National Council on Disability in 2009. He lives in Washington.
How old were you when you were diagnosed with autism?
Twelve. I remember my mother took me for a walk and sat me down on a park bench and explained this new diagnosis to me.
How did you react?
It didn’t really mean much to me at first. It was only when I started to read what other people were saying about us that it began to carry a meaning. And at first a very negative, frightening meaning. People do not talk about welcoming autistic people to their communities. People talk about fear and tragedy and burden. Initially it was very frightening. My saving grace was connecting with other autistic adults and finding out that there was this larger community of autistic people who weren’t willing to just passively accept how the world defines us.
What is the Self Advocacy Network?
It’s a national advocacy organization run by and for autistic people speaking for ourselves. We founded ASAN, in part, because there was, and is, an extensive public conversation about autism that includes everyone except the people most impacted: those on the autism spectrum. Those of us who are autistic want to see the focus on services and supports, rights, protection. In the parent and provider community there’s more emphasis on trying to cure or fix us, and that’s not something we consider a priority.
How does your autism manifest itself?
Like many autistic people, one of the big things that comes up for me is the effort and energy that needs to be expended to act more normal in a nonautistic world. An example that many of us on the spectrum find familiar is that there’s a very strong emphasis on eye contact. Many autistic children are taught at a young age that they have to make eye contact, even if making eye contact is a stressful and anxiety-provoking experience.
Do you feel able to integrate with mainstream society?
It’s very interesting. It’s a classic tension in the experience of any minority group in America. The tension between reaching out to other people in your community and integrating and assimilating in the broader society. ASAN’s work has always been about fighting for our right to be included. We’ve always been strong about promoting inclusive education, inclusive workplaces. Some of our biggest policy achievements have been in promoting more integrated forms of service delivery. At the same time, it’s very important that there be opportunities for autistic people to connect with other autistic people. We’ve worked to encourage a shared cultural narrative and cultural space. I think those moments of community make being part of a larger society easier. It tells us that we’re not some lone freak out there, but that we come from a place and from a people and that gives many of us a strength to be successful in the larger world.
We hear a lot about autism and children, but not much about what life is like for grown-ups with autism.
Some of it relates to what gets presented to the public. There are a lot of organizations out there that make a lot of money fundraising off of the image of the sometimes adorable, sometimes presented as tragic or very pitiful young child. Unfortunately that has real consequences in terms of public policy. If you look at the NIH’s autism research budget, only 1.5 percent goes to research on the needs of adults. If research is society’s investment in its future, our society does not prioritize the future of autistic people. And some of it just comes back to the fact that in many circles, autism or autistic people are always something that’s just around the corner but not in the room. For a lot of people there is a difficulty in visualizing the broader autistic community, including adults.
Are perceptions about autism changing?
I think they are. It’s very much still a battle. In 2006, Congress passed the Combating Autism Act. Even the title, and more than just the title, was a very negative portrayal of those of us on the spectrum. And it’s no surprise that that legislation passed without input from a single autistic person. Last year Congress made a number of changes to that legislation, not least of which was renaming it the Autism CARES Act and placing more of an emphasison services across the lifespan. Does that mean that the problem is over? Of course not. But it means we’re in a position to fight back. We’re in a position to have our voices heard.
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