Autism Speaks: Don’t Speak for My Family
Autism Speaks recently released this video. I fully concur with the reaction of the Autistic Self Advocacy Network (ASAN)[1] in their press release, printed below. I invite you to watch, and form your own opinion:
Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign
Washington, DC (September 23rd, 2009) – The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re 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,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.
“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 (ASAN). “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.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.
In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530
ADDENDUM: Liz Ditz is compiling responses to the video at her blog, I Speak of Dreams.
- 1. I do have one point of contention with ASAN’s statement: The autism community does not speak with one voice, and, like whether we like it or not, the people who run Autism Speaks and support its activities are part of the community, despite the apparent exclusion of actual autistic people within their leadership.
Speaking of elaborate frauds in autism. You think Autism Speaks sucks? Well, yes they do, and so that makes me wonder, do you also SEE the real Amanda Baggs. She is not autistic. Never was autistic. Indeed, Amanda Baggs is a mentally ill person with drug induced autistic traits. ASK Amanda about her drug past. She took a lot of LSD and then, after scrambling her brain, got “autism.” OKAYYYYYYYYYYYYY sure. All rightly then….c’mon folks use critical thinking skills here. Check out Amanda’s background and come to a conclusion. You’ve been DUPED. Amanda Baggs is not autistic. She’s a drug induced presentation posing as autistic. She should be evaluated by a psychiatrist, not a medical doctor who has no experience dealing with this type of person. She’s very bright. Very deceitful. Very crazy. Wired Magazine, New York Times reporters and the embarrassing CNN medical guy, Dr. Gupta (aka, goofed up) need to seriously understand the difference between mental illness caused by drugs that lead a person to THINK they’re autistic, and real autism. You are BORN with true authentic autism or aspergers. it is NOT an acquired drug induced or vaccine related condition, as seen in Amanda Baggs. Now, that’s in my language. Truth. “Amanda Baggs Exposed:, will soon be the title of the next media coverage.
Autism Speaks, you have NO idea who you are dealing with. How DARE you make a video portraying autism as an enemy. How DARE you increase the already epidemic ignorance regarding autism. You cannot speak for us! Contrary to what you neurotypicals might believe, when someone has autism, there is no normal person trapped “behind” the autism. Autism is a part of the person who has it, and to cure autism would be to make us no longer who we are. It is true that many autistics cannot function in mainstream society, but that is not to say that we don’t have our own societies. The low-functioning nonverbal children whose lives you portray as horror stories are innocent in a way that you can never be. They do not need to be CURED, they need to be HELPED. Taking away that beautiful innocence is a crime that would taint your morality until your dying day. Higher-functioning people like myself should be looked upon as intelligent, opportunistic human beings. It is a well-known fact that many great scientists in history–Albert Einstein and Nikola Tesla included–had autistic spectrum disorders. Where would we be without them? They changed the course of history, something that they could not have done without the abnormally brilliant minds with which they were blessed. Autism Speaks, since you speak for us, this is an autistic speaking for you:
“I am Autism Speaks. I plot to rob you of your money, which you so wholeheartedly believe is going to benefit autism research. The truth is that you are funding our employees’ paychecks, not the children you care about. I will make sure that every day when you wake up you will cry needlessly, bombarded by statements about autism being ‘the new epidemic’ and hearing autism compared to deadly illnesses like cancer. I am Autism Speaks. I plot to rob your community of high-functioning autistic people who may actually find cures that are necessary, like cures for cancer, Alzheimer’s Disease, and HIV/AIDS. I am power-hungry, so I will use your caring personalities as a tool to gain the money and popularity that I desperately want. I am Autism Speaks. You did not ignore me. That was a mistake.”
Make another video, I found translating this script extremely amusing.
Please see You Tube video titled: “Severely Autistic Boy Beaten by Big Government”
It’s an eye opener. Mom takes you inside the crazy system serving autistic children/teen/adults/ and exposes some of the apathetic people we have working in our agencies. Amazing. Shocking. Sad. We need big change with less government right now. Screw finding cures! What’s needed is practical right now helps and supports for families who are trying to protect their autistic children from a very mixed up Godless neurotypical run mess of an American system.
Very interesting, I didn’t know about the divorce rate study.
I agree that the autism community doesn’t speak with one voice, but what Paula was referring to is the *autistic* community.