Fri, Jun 10, 2011 page9

• Stop trying to ‘fix’ autistic people and concentrate on inclusion

  US autism campaigner Ari Ne’eman explains why he is fed up with the emphasis on curing the disorder and the controversy that his approach has caused

  • By Mary O’Hara / The Guardian, LONDON
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  Ari Ne’eman rubs some people the wrong way. Why? Because he is an outspoken autism campaigner who has risen to prominence in the US by demanding that policymakers and wider society stop trying to “fix” autistic people or “make us normal” and concentrate instead on including people with the condition in the decisions that affect their lives.

  Ne’eman, who is in the UK to give a series of talks, claims that for too long, even the most well-meaning advocates in the US and in Britain — including parents — have been obsessed with molding autistic people to fit with society’s expectations of “normal” behavior.

  Simultaneously lauded and vilified since founding the Autistic Self Advocacy Network (ASAN) as a teenager just out of high school in New Jersey, Ne’eman, now 23, is a polarizing figure. He stirred up controversy by suggesting that more research investment be directed toward improving support for autistic people, rather than toward finding a cure to eliminate the condition.

  When US President Barack Obama nominated Ne’eman to the National Council on Disability — a government body that advises legislators on disability policy — one critic equated the decision to sending a “blind surgeon” in to perform surgery.

  Despite objections, Ne’eman’s appointment to the council was confirmed in July last year when he became the first known autistic person to serve on the body. It cemented his role as a leading light in the autism “self-advocacy movement” in the US. It also placed him on a collision course with detractors who argue that he fails to grasp that “high functioning” people like him (he was diagnosed with Asperger’s syndrome, a condition on the autism spectrum, at age 12 and is an erudite communicator) cannot speak for those at the lower end of the scale who have much more serious impairments. Autism symptoms include difficulties picking up social cues and communication problems ranging from severe to mild.

  Ne’eman says he is “happy to engage” with his critics, but insists that they fundamentally misunderstand what he and others like him are trying to do.

  “There’s a lot of prejudice out there, but I think the majority of people aren’t prejudiced. The majority of people just don’t understand what our message is,” he said. “The objective of autism advocacy should be to create a world that includes and supports autistic people rather than to create a world without autistic people. In short, we need to refocus autism education and research, and interventions and policy toward a quality of life and a quality of opportunity agenda for all persons on the spectrum.”

  “I have a list of every research study funded from a major funder, public and private in the US, around autism in 2009,” he said, pulling pages from a pile of documents. “Less than 1 percent goes to research around adults. Only 3 percent goes to research around services. The vast majority is focused around causation, detection, ideas around prevention and cure. What aggravates me is the idea that it’s so inconceivable that we should have something to say about our own lives.”

  When he talks about his early life and how he felt “knowing I was different, but not knowing why” until he was diagnosed, it is clear to see why Ne’eman invests so much of his energy in autism advocacy (he is also on several general disability rights panels in an advisory or part-time capacity).

  He talks about “a tremendous amount of bullying at school” and of how teachers did not understand him, either in the mainstream schools he attended or in the “segregated” school he was placed in for a short while after diagnosis.

  “My experiences growing up with the bullying, the social exclusion, being placed in a segregated educational environment and suffering from the low expectations that are too often present for students with disabilities — they have all directly shaped my advocacy work and my policy work today,” he said. “People, society, told me that I wasn’t any good, that I shouldn’t have the opportunity to achieve the things I wanted to achieve in life and I rejected that. I ran away from those kinds of assumptions about my diagnosis.”

  His parents were important advocates for him growing up, Ne’eman says, but as he got older the systemic and cultural obstacles he and other autistic people faced galvanized him to set up ASAN. Now represented in 15 US states and affiliated to numerous disability organizations across the US, the organization has ambitious goals. It started as a policy-focused lobbying organization, but has since evolved to address broader “much more challenging” wider societal attitudes. Ne’eman positions his campaigning firmly within the broader civil rights struggles. It is, he says, about empowering people.

  Projects run by ASAN include producing a series of leaflets for young people with autism on how to navigate high school and initiatives to foster “young autistic leaders” at college and beyond.

  The organization also makes a point of directly challenging “offensive and damaging media stereotypes and advertising that talks about us without us,” he said.

  Understanding the big picture, as well as the minutiae of policy and personal experience, is critical to advocating successfully, Ne’eman said. He believes that the disability rights movement for autistic people is “decades behind” the wider disability rights agenda and that this has led to policymakers in the UK and the US, in particular, systematically excluding people with autism when “they wouldn’t dream” of doing the same to other, more established disability rights groups.

  “There hasn’t been the recognition in both countries that the [autistic] population needs to be included in the conversation,” he said.

  If anything frustrates Ne’eman, it is that for all the opprobrium he faces the central tenant of his argument — “having a seat at the policy table” — is far from radical.

  “These ideas wouldn’t even be considered controversial in the general disability world. This isn’t anything other than basic common sense. You should involve autistic people instead of trying to make autistic people ‘normal,’” he said.
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