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Maddino87
Toucan
Joined: Jan 10, 2009
Posts: 256
Location: Chapel Hill
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 Posted: Fri Nov 06, 2009 11:48 pm Post subject: TIME: "I Am Autism": Advocacy Video Sparks Protest |
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Currently Number 1 on the most read list
http://www.time.com/time/health/article/0,8599,1935959,00.html
| Quote: | TIME- 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 (ASD) 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 Award–winning director Alfonso Cuarón, 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 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.
"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 more: http://www.time.com/time/health/article/0,8599,1935959,00.html#ixzz0W96XHVWg
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velodog
Glock armorer of the Aspie Elite
Joined: Mar 16, 2008
Posts: 1512
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| Posted: Sat Nov 07, 2009 5:19 am Post subject: |
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Good article. I detest that I Am Autism fear mongering POS video. Good post Maddino87.  |
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budgenator
Raven
Joined: Aug 03, 2009
Age: 55
Posts: 105
Location: SE Michigan
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| Posted: Sat Nov 07, 2009 11:41 am Post subject: |
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| I noticed that the almost $18 million is salaries vs. the less that $67 thousand in individual and community grants flew under Time's Radar |
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CockneyRebel
Mick Avory
Joined: Jul 18, 2004
Age: 35
Posts: 22490
Location: 1965 London with Ruby the Routemaster by my side
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| Posted: Sat Nov 07, 2009 5:33 pm Post subject: |
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That's really good news. 
_________________
Mick Avory is my favourite Kink. He always has been and he always will be. Him and I are two peas in a pod. |
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