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Autism speaks video fuels further controversy
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Autism Speaks; largest autism advocacy group
Different people can see the same thing and get something very different.
Autism Speaks, an advocacy group promoting the research for a cure, released a video for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. The video is called "I am Autism" and has raised concerns in the autism community.
The video as written by Grammy-nominated songwriter Billy Mann and directed by Academy Award–winning director Alfonso Cuarón who both have children with autism. The video 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."
The tone of the video has added strain to an already touchy relationship between many adult with high functioning autism and the largest autism advocacy group.
According to a recent Time article, 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 Cuarón, 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.
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.
It is obvious that both sides are really working toward the same thing; working to raise awareness and assure help for all people with autism. In future let's hope their good efforts can be combined.
What do you think? Did the video go too far?
More articles by Seattle Special Needs Issues Examiner:
Special needs parenting: connecting with others is key
UW autism center hosting event in Kirkland: parent's perspective
Special Ed teacher wins retaliation suit for flagging IDEA non-compliance
Autism Speaks - I am Autism
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