Fear and Fundraising in Autism

October 26, 2009 by  
Filed under Blog, The Epidemic

A fascinating controversy has erupted in the autism community over a new video produced for Autism Speaks. The slickly produced video, written by songwriter Billy Mann and directed by Academy Award-winning director Alfonso Cuarón, carries an ominous voice-over declaring that “I am Autism… I know where you live… 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 members of the autism self-advocacy community are furious over the tone of this video. “We don’t want to be portrayed as burdens or objects of fear and pity,” Ari Ne’eman, president of the Autistic Self-advocacy Network told me.  “Apparently, should my parents divorce it’s all my fault,” says Ne’eman, a 21 year-old activist and college student with Asperger’s Syndrome.

Ne’eman’s group, which has about 15 chapters around the country, has organized rallies and protests around the country. These advocates argue that if Autism Speaks had more people on the spectrum on their board, their messages would be more sensitive to the individuals they seek to help and they might also devote more resources to improving services to people with autism–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.

Peter Bell, executive vice president of Autism Speaks, says the video got plenty of positive response 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.”

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.

The video, 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 admits that Autism Speaks does not have any individuals with autism serving on its board. “We are looking at adding individuals with autism to various advisory committees.”

Perhaps more effective and certainly funnier than the rallies and protests are the many YouTube parodies that skewer the Autism Speaks video, including “I am Socks” and “I am Autism Speaks“.

Comments

One Response to “Fear and Fundraising in Autism”
  1. My friend and I were arguing about this! Now I know that I was right. lol! Thanks for making me positive!

    Sent from my iPhone 4G