Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder its cause, its treatment, the way it is diagnosed, how it is studied is subject to bitter dispute, sometimes to the point of death threats.
The most impassioned disagreements are propelled by desperate parents of autistic children, but increasingly, people who themselves have an autism spectrum disorder diagnosis are speaking up. And their priorities, surprisingly enough, are not always in line with the advocacy groups who seek to represent their interests.
The latest example is the eruption over a video produced for Autism Speaks, the nation’s largest autism advocacy group. The slickly produced video, written by Grammy-nominated songwriter Billy Mann and directed by Academy Awardwinning director Alfonso Cuarn, shows a series of images of children with autism, accompanied by an ominous voice-over: “I am Autism … I know where you live … I live there too … I work faster than pediatric AIDS, cancer and diabetes combined … And if you are happily married, I will make sure that your marriage fails.”
Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.
Ne’eman’s group has organized protest rallies around the country. These advocates argue that if Autism Speaks had more people with ASD on its board, its messages would be more sensitive to the individuals it seeks to help, and it might also devote more resources to improving services to people with autism now as opposed to basic research and genetic studies that may not pay off for years. “Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives,” Ne’eman charges. He notes that other disability groups have moved away from using fear and pity in their media campaigns.
Peter Bell, executive vice president of Autism Speaks, said the video got plenty of positive responses from the autism community. “But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website,” he said.
The video, Bell said in an interview, is a personal expression by Mann and Cuarn, each of whom has a young child with autism. “They are at that stage of life where they are grieving and unsure what the future holds,” he said.
“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.
Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.
That may help tone down the “fear and pity” image of autism that Ne’eman and other self-advocates protest. But perhaps more effective and certainly funnier are the parodies, some created by people with autism, that skewer the Autism Speaks video, including “I Am Socks” and “I Am Autism Speaks.”
Read “Inside the Autistic Mind.”
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