A video made for an event designed to mobilize worldwide activism and help raise money for autism research, services, and awareness has ended up sparking controversy within the autism community.
“I Am Autism,” a powerful video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann, both fathers of children with autism, was screened on Sept. 22 at Autism Speaks’ Second Annual United Nations World Focus on Autism.
It starts out with a horror-movie-style soundtrack. Then the narrator speaks as the voice of “autism.” Here are a few lines spoken by the autism voice:
-"I am visible in your children, but if I can help it, I am invisible to you until it’s too late.”
-"I know where you live, and guess what? I live there too.”
-"And if you are happily married, I will make sure that your marriage fails.”
-"I will make it virtually impossible for your family to easily attend the Temple, a birthday party, a public park without a struggle, without embarrassment, without pain.”
-"Your money will fall into my hands and I will bankrupt you for my own self gain.”
-"I don’t sleep, so I make sure you don’t either.”
-"I will fight to take away your hope.”
The second half of the video shows families standing up to autism and fighting back. “You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?” says one parent. “We are a community of warriors,” says another parent. “When you came for my child, you forgot, you came for me,” say the parent voices.
The video was inspired by a poem by Mr. Mann. The home movie footage seen in the video was sent in by other parents of children with autism. But not everyone in the autism community agrees with the portrayal of autism, or whether the video would be good for raising awareness.
“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and president of the Autistic Self Advocacy Network. “This type of fear mongering hurts autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of autistic adults and children.”
Marc Sirkin, chief community officer for Autism Speaks, said the video was received well at the event. But controversy came later when it was posted on the Web. It won’t be used as a PSA, in an ad campaign or for fundraising, he said. The video has been pulled from the Autism Speaks Web site, but remains on Youtube.
“It is an artifact,” he said. “It exists.”
He said it was an intensely personal poem from one father’s perspective, and not intended to offend anyone. Autism is a disorder arrayed along a spectrum, and everyone’s experience is different, he said, which might explain the variety of reactions to the video.
“We’ve gotten letters,” Mr. Sirkin said. “We’ve gotten really positive feedback and really negative feedback.”
It is certainly a stirring video bound to spark strong reactions. Please share your thoughts about the video in the comments.
A version of this news article first appeared in the On Special Education blog.