Autism Speaks (Again...)

Once again the Autism Speaks folks are fund raising to find a "cure" for autism. They seem to think autism is the scourge of the 21st century. I wonder if they ever speak to people (there's a hell of a lot of us out here) who don't ascribe to their false claims about divorce, poverty, and destroyed lives; a direct result of autism? Seems to me they're mainly a bunch of lazy Hollywood types, unwilling to do the work it takes to support someone with autism! Maybe I'll do a fund raiser where the money I take in can go to getting them free training on how to do so. What do you think? What follows is how many others think.


"Autism Speaks" (For Themselves)


Have you seen the ad from "Autism Speaks" on tv? They seem to be working hard to hold back people with autism, along with their civil and human rights. There are many in the disability community (including me) who have taken issue with their message...


'Poetic' autism film divides campaigners


17:36 29 September 2009 by Celeste Biever


For similar stories, visit the Books and Art and The Human Brain Topic Guides


http://www.newscientist.com/article/dn17878-poetic-autism-film-divides-campaigners.html


"I have no interest in right or wrong… I will plot to rob you of your children and your dreams."


These words come from a short film called I Am Autism, which has sparked a spat between people with autism across the US and a charity that aims to represent them.


The film contains clips of children with autism and their parents backed by a voiceover that suggests autism has no morality and breaks apart families (read the transcript here). The charity Autism Speaks, based in New York, first screened the film on 22 September at its annual World Focus on Autism event.


I Am Autism was made by two fathers of children with autism: Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. The narration is a "personal poem" written by Mann, says Marc Sirkin, chief community officer at Autism Speaks.


'Embarrassing and offensive'


But some people with autism say the film projects a damaging image of them. They are protesting online with a spoof video on YouTube and a Facebook group. A few have also taken to the streets to protest.


"This makes people afraid of us. What will people think about me and other autistics if they have watched this damaging video?" says Elesia Ashkenazy, director of the Portland, Oregon, chapter of the Autistic Self Advocacy network (ASAN). She helped organise a protest against the video in Portland on 26 September.


Ari Ne'eman, president of ASAN, based in Washington DC, says the film is "embarrassing, offensive and inaccurate". "It has practical consequences," he says. For those with autism and looking for a job or a relationship, or trying to fit in at school, he says, "this adds to the fear and prejudice and stigma".


Ne'eman particularly objects to one segment of the video, in which the narrator, representing autism itself, says: "And if you're happily married, I will make sure that your marriage fails."


Ne'eman points to a 2008 survey that contradicts this notion, carried out by the disabilities charity Easter Seals, based in Chicago, Illinois. Looking at 917 parents who have children without any special needs and 1652 parents whose children have an autism spectrum disorder, the survey found that that 30 per cent of parents of people with autism spectrum disorders were divorced, compared with 29 per cent of parents whose children didn't have special needs.


Profit motive?


Sirkin admits that he knows of "no evidence that having a child with autism spectrum disorder in the family leads to higher rates of divorce" but says the film is "a personal statement based on the viewpoint of the two parents who created the film".


Ne'eman also accuses the charity of using "fear and pity-mongering" to raise funds. Sirkin responds that Autism Speaks did not pay for the film to be made, and that the film is not intended as a fundraiser, only to raise awareness.


The soundtrack to the spoof online video, I Am Autism Speaks, goes, "I work hard to make people believe your children are suffering worse than cancer or AIDS victims," and, "Your money will fall into my hands and I will bankrupt you," and "Your advocates don't have the money to fight me."


Right to speak


Meanwhile the Facebook group page set up in protest against the film calls it "a grotesque travesty of a film, filled with falsehoods, bigotry and hate… It does not represent our views on autism and autistic people. It vilifies autistic people, and we will not stand for it."


Sirkin says this is all par for the course. "We have received both positive and negative feedback. Some parents have found the video inspiring and have thanked us for showing it. Others have been offended by it. We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism."


Morton Gernsbacher, an autism researcher at the University of Wisconsin-Madison, says the film could be destructive. "Any organisation that claims to support individuals with disabilities and those individuals' families should familiarise itself with the decades of research which has investigated the deleterious effects of fear-eliciting messaging," she says.


It's not the first time that Autism Speaks has provoked anger from people with autism. In 2008, the charity demanded that an autistic blogger take down a parody of its website because it infringed copyright. This sparked outrage from ASAN and many autistic bloggers.


I Am Autism: transcript of video


I am autism.


I'm 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. I hover around all of you.


I know no colour barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.


I work very quickly. I work faster than paediatric AIDS, cancer and diabetes combined.


And if you are happily married, I will make sure that your marriage fails. 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 make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.


You have no cure for me. Your scientists don't have the resources, and I relish their desperation.


Your neighbours are happier to pretend that I don't exist, of course, until it's their child. I am autism.


I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.


I will make sure that every day you wake up, you will cry, wondering, "Who will take care of my child after I die?" And the truth is, I am still winning, and you are scared, and you should be.


I am autism.


You ignored me.