āI have no interest in right or wrong⦠I will plot to rob you of your children and your dreams.ā
These words come from a , 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.
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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 āpersonal poemā written by Mann, says Marc Sirkin, chief community officer at Autism Speaks.
āEmbarrassing and offensiveā
But some people with autism say the film projects a damaging image of them. They are protesting online with a and a . A few have also taken to the streets to protest.
āThis makes people afraid of us. What will people think about me and other autistics if they have watched this damaging video?ā says Elesia Ashkenazy, director of the Portland, Oregon, chapter of the (ASAN). She helped against the video in Portland on 26 September.
Ari Neāeman, president of ASAN, based in Washington DC, says the film is āembarrassing, offensive and inaccurateā. āIt has practical consequences,ā he says. For those with autism and looking for a job or a relationship, or trying to fit in at school, he says, āthis adds to the fear and prejudice and stigmaā.
Neāeman particularly objects to one segment of the video, in which the narrator, representing autism itself, says: āAnd if youāre happily married, I will make sure that your marriage fails.ā
Neāeman points to a 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 didnāt have special needs.
Profit motive?
Sirkin admits that he knows of āno evidence that having a child with autism spectrum disorder in the family leads to higher rates of divorceā but says the film is āa personal statement based on the viewpoint of the two parents who created the filmā.
Neāeman also accuses the charity of using āfear and pity-mongeringā 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, , goes, āI work hard to make people believe your children are suffering worse than cancer or AIDS victims,ā and, āYour money will fall into my hands and I will bankrupt you,ā and āYour advocates donāt have the money to fight me.ā
Right to speak
Meanwhile the set up in protest against the film calls it āa 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.ā
Sirkin says this is all par for the course. āWe 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.ā
, an autism researcher at the University of Wisconsin-Madison, says the film could be destructive. āAny organisation that claims to support individuals with disabilities and those individualsā families should familiarise itself with the decades of research which has investigated the deleterious effects of fear-eliciting messaging,ā she says.
Itās 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.
Iām visible in your children, but if I can help it, I am invisible to you until itās 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 donāt sleep, so I make sure you donāt 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 donāt have the resources, and I relish their desperation.
Your neighbours are happier to pretend that I donāt exist, of course, until itās 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, āWho will take care of my child after I die?ā And the truth is, I am still winning, and you are scared, and you should be.
I am autism.
You ignored me.