The ableism of Autism Speaks
March 17, 2021
Trigger Warning: Suicide, Ableism and Murder
Ableism, discrimination against those with disabilities of any kind (including cognitive disorders), has been a popular topic of conversation as of late, especially with the release of Sia’s abhorrent film, “Music,” and Gabbie Hanna’s thoughtless digs at tone indicators. Given ableism’s flourishing state these days, many activists and members of the neurodivergent community have been pushing for people to educate themselves so they can recognize ableism and be a better ally to those who are neurodivergent. This is a wonderful goal and one I agree with. Neurotypical people should educate themselves on what it does and doesn’t mean to be neurodivergent, so they can support our community in a time when so many don’t.
Unfortunately for those looking to educate themselves, resources claiming to educate people about the neurodivergent community, particularly about autism, are ableist. Chief among these deceptive organizations is Autism Speaks (AS), who Google directs people who search “autism” to. Autism Speaks is an organization that has existed for 16 years. According to their financial statements from March of 2020, their total net assets were $43,194,006. AS does not sound ableist from what you can see initially as their mission statement speaks about “promoting solutions” and “advancing research,” but their past mission statement had a concerning story
Until 2016, their mission statement included talking about their search for a “cure” for autism. AS apologized for this, but words are wind, actions speak much louder, and AS’s aren’t good. In 2007, they purchased an organization named Cure Autism Now, and I imagine you can guess the goals of Cure Autism Now. This notion of autism needing to be “cured” was supported by AS and their messaging. AS consistently treats autism spectrum disorder as an awful demon that ruins the lives of everyone who has it, as well as their families. This approach also infantilizes all people with autism, treating them as people with a deadly disease who need to be cured of their affliction.
Nothing demonstrates AS’ incredibly ableist belief and message that autistic people are afflicted with ruined lives than an infamous ad AS ran in 2009 called “I am Autism.” This three minute ad created by Billy Mann compares autism to pediatric aids and cancer saying, in an ominous voiceover, “I work faster than pediatric AIDs, cancer, and diabetes combined.” That is well, just wrong. First off, autism spectrum disorder is not comparable to pediatric AIDs or cancer. Autism is first and foremost a cognitive disorder. It can and often does come with health problems for those on the spectrum, such as epilepsy and heart problems, but these result in nowhere near the scale of deaths caused by AIDS and cancer. In 2007, pediatric AIDs took 270,000 lives, and in America in 2019, pediatric cancer killed 51% of the children who had the disease. Medical complications from Autism Spectrum Disorder are also far more treatable than AIDS and cancer. In fact, the second leading cause of early death for those on the spectrum is, according to the Autism Awareness Centre, suicide. Keep that in mind, as I tell you more about this ad.
The ominous voiceover continues, saying, “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,” and “I derive great pleasure from your loneliness.” This ad makes it sound like people with autism are nothing more than vehicles for a demon that’s possessing their body. That is wrong on so many levels, utterly dehumanizing and scientifically inaccurate. This organization that is supposedly dedicated to those on the autism spectrum, a population that faces discrimination at every level in society and has a higher than average suicide rate, told everyone with autism that they will ruin their family’s lives and take all their money, due to their diagnosis. That isn’t “help” or “support” or “speaking for those with autism,” that is cruel bigotry.
AS supporters may say “Oh but that was from 2009, it’s ancient history!” You know what’s not ancient history, though? Billy Mann, the man who conceived and directed that awful ad. Mann posted a long, self-serving non-apology to Facebook with excuses galore. That’s awful on its own, but the even worse part? He posted that non apology in 2019, a decade after the video, and he is still, as of Mar. 10, 2021, on the AS board of directors. His role at the head of the I am Autism ad is conveniently left out of his biography on the organization’s site.
The cruelty of that ad is not unusual for the organization. Here is another video that’s just as bad, and quite arguably worse. That mess is called “Autism Every Day,” a video made in 2006 by Lauren Thierry for AS. This video features young autistic children having meltdowns and tantrums, due to Thierry instructing families not to prepare the children for camera, they decided not to have therapists or any comforting presences present for the children and appeared at their homes without notifying them. Thierry did this so she could capture tantrums and physical struggles with parents. Somehow, though, that is nothing compared to the worst part of the video. Allison Singer, who was at the time an executive Vice President of AS, said to Thierry and her crew during filming, that she sometimes thought about committing murder-suicide, killing both herself and her daughter because of the difficulties that came with her daughter being on the spectrum. That conversation made it into the final film that you can watch on YouTube. You can watch a woman who was an AS VP casually talk about contemplating killing herself and her daughter because her daughter’s autistic. That is monstrous, that is evil and that was said by an AS executive in a film that AS published and promoted as spreading Autism awareness. AS seemingly has no remorse for this video, as Thierry spoke at AS’ annual investor conference in 2014.
These things that I’ve brought up are the tip of the iceberg of awful things AS has done and said. If you’re interested in finding out more about why exactly AS is more of a hate group than an altruistic charity, this is a resource compiled by Kirsten Smith on Medium of posts detailing why AS is by no means a positive force for the autistic community and most certainly doesn’t speak for them.
Dave Gusse • Sep 15, 2021 at 8:42 am
Working with students with cognitive disorders every day, this is a difficult read. A group that should promote awareness and understanding about autism is instead adding confusion to the issue. Empathy is in short supply these days. The best advice I can give to anyone who is in class with a student who is on the autism spectrum is to treat them like a friend. Say “hi” to them with a smile on your face. Understand they may or may not respond in a way you would expect them to respond. However, regardless of how they react, or don’t react, just keep treating them in a kind and friendly way.