Autism Speaks has an illustrious history of spreading fear and misinformation.
In 2009, Autism Speaks released the short film “I Am Autism,” featuring an ominous voiceover personifying autism. Statements included “I know where you live … I work faster than pediatric AIDS, cancer, and diabetes combined. … I will make sure that your marriage fails … 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.”
Autism Speaks was also responsible for “Autism Every Day”, a video which has since been removed from their YouTube channel. Not only did it center on caregivers, portraying autistic people as a burden, but it also features a member of their board talking – in front of the child – about how she contemplated killing her daughter.
Apparently they did not learn from either of these debacles, because in 2013 co-founder Suzanne Wright published a “Call for Action” that referred to autism as a national emergency and highlighted the fear, exhaustion, and despair caused by having a child with autism. It also made some pretty huge generalizations about the capabilities of autistic people:
“Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.”
Around this same time (November 2013) Autism Speaks included the Judge Rotenberg Center – which uses aversive interventions such as electric shock – as a service provider in their resource fair at the DC Walk Now for Autism. The JRC has been condemned by the U.N. Special Rapporteurs on Torture and under investigation by The U.S. Department of Justice’s civil rights division (source). Promoting this institution in any way is beyond irresponsible; it is appalling.
However, that was not the first time that Autism Speaks supported harmful practices in the name of a cure, nor would it be the last. For the longest time, the organization failed to take a decisive stand on the issue of vaccines. They affiliated themselves with public figures that repeatedly advanced the anti-vaccine message in media. In 2009, Alison Singer resigned from Autism Speaks with the following statement: “I’ve concluded that as a matter of personal conscience, I cannot vote in favor of dedicating more funds to vaccine research that has already been undertaken and which I and many others find conclusive.”
Despite all the evidence debunking any connection between vaccines and autism, Autism Speaks continued to issue statements such as “it remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic condition.” It wasn’t until 2015 that they revised their official stance on vaccines, although their Strategic Plan for Science still stated: “Autism Speaks is funding studies on the underlying biology of autism, including studies to better understand medical and genetic conditions that are associated with autism that could potentially be linked to adverse responses to immunization” (Christine Vara).
This is not the kind of research that I want to support. Theirs is not the type of message I want to promote. What about you?
I know a lot of people who have no idea why Autism Speaks is harmful. Perhaps even more who are aware of one or two items on the long list of controversies trailing the organization, but don’t consider them significant enough reason for boycott. This goes beyond an isolated incident or the actions of a single person. We’re talking about an entire organization which routinely, systematically ignores and dehumanizes the population that they are supposed to serve.
“Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.
No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day.” (John Elder Robinson, in his letter of resignation)
This post is part one of three. See also: Autism Speaks: Cost and Expense Report, Why I Won’t “Light it Up Blue.”