Why Autism Speaks Will NEVER Speak For Me

Autism Speaks is one of the most well-known autism advocacy organizations in the United States, but their history of anti-autistic rhetoric also makes them a major source of autism misinformation.

Autism Speaks’ Logo

Autism Speaks was founded in 2005 by Bob and Susan Wright after one of their grandchildren was diagnosed with autism. Since then, Autism Speaks has become one of the most well-known and influential autism-focused organizations in the world, even earning Bob and Susan Wright spots on the 2008 Time list: 100 Heroes and Pioneers.

Over the years, Autism Speaks has combined with other well-known organizations, such as Cure Autism Now, increasing their influence on the public’s view of autism. Susan Wright is responsible for the launching of the blue puzzle piece symbol, one of the most widely recognized symbols for autism (read here about my thoughts on the puzzle piece).

But, despite their household name status, Autism Speaks has a history of harming the autistic community. Their use of anti-autistic rhetoric, dedication to pseudoscience, and inappropriate uses of funding make Autism Speaks an unethical organization whose spotlight should be revoked.

Although their homepage states their goal is to increase acceptance and support for autistics, Autism Speaks has a long history of comparing autism to a disease, a comparison that is not only offensive but factually incorrect. They have used phrases such as, “this disease has taken our children away, it’s time to get them back”, insinuating that there is a neurotypical child hidden within an autistic one. Susan Wright has called the 3 million autistic children in the United States a “crisis” that is on par with 3 million children going missing or becoming gravely ill.

Autism Speaks has exhibited some of their most harmful rhetoric in their commercials and short films, such as “I Am Autism” and “Autism Every Day”.

Autism Speaks’ “I Am Autism” commercial from 2009
Autism Speaks’ “Autism Every Day”, a short film from 2006

Their commercial, “I Am Autism”, uses narration resembling a 1954 short film called Taming the Crippler, which personified polio as a grim reaper-like figure. “I Am Autism” outright compares autism to deadly diseases, even going so far as to say that autism “works faster than pediatric aids, cancer, and diabetes combined.” It states that autism causes marriages to fail and families to go bankrupt.

“Autism Every Day” is no better. It too portrays autism as a disease that traps neurotypical children inside their own minds. At one point, one of the mothers being interviewed states that she has considered committing filicide (the act of a parent deliberately killing their own child). The woman smiles while admitting that she had contemplated putting her daughter in her car and driving off a bridge. She says this with her autistic daughter standing behind her, able to hear her conversation. The mother then says the only reason she didn’t murder her autistic daughter is because she also has a neurotypical child.

In addition to treating autism like a disease, Autism Speaks also has a long history of promoting pseudoscience.

One of the major controversies people’s minds go to when they hear the word autism is the anti-vaccine movement. This stems from Andrew Wakefield’s infamous 1998 study that falsely claimed there was a link between autism and the MMR vaccine. Almost immediately after Wakefield’s study was published, further epidemiological studies were conducted, proving there was no link between autism and vaccinations. Despite this, the anti-vaxxer movement has clung to the pseudoscientific results of the Wakefield study, including Autism Speaks.

Autism Speaks made research into an association between immunizations and increased autism prevalence one of their highest priorities. Even though the association was proven nonexistent many times over, even in 2010, Autism Speaks said it would not stop researching a potential link between autism and vaccines, stating they would support “research to determine whether subsets of individuals might be at increased risk for developing autism symptoms following vaccination”. It wasn’t until 2017 that Autism Speaks finally admitted vaccines do not cause autism.

In addition to their mistreatment of autistics and their promotion of pseudoscience, Autism Speaks proves to be unethical in their use of funds.

As you can see in the flyer above, Autism Speaks, despite claiming to help autistic people and their families, uses very little of their money to do so, only 1%. On top of this, their executives are paid more than anyone else in other autism organizations, with salaries that exceed $600,000 a year. Personally, if I’m going to donate my money to an organization claiming to help a marginalized group of people, I would hope that more than 1% of my money would go to those people.

In summary, I urge my readers to not support Autism Speaks. Their treatment of autism is not ethically permissible and there are much better organizations out there. Both ASAN and AWN are run by actually autistic people for actually autistic people and promote acceptance of autistics, not their elimination. My hope is that groups such as ASAN and AWN can be given more of the spotlight that has been monopolized by Autism Speaks, allowing them to quell the public’s fears regarding autism and promote more positive, accurate depictions of life as an autistic person.

Sources:

  1. https://www.autismspeaks.org/about-us
  2. https://web.archive.org/web/20110707191354/http://autismresearchcentre.com/docs/papers/2008_BC_Review_of_Living_Googles.pdf
  3. https://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/?sh=60030ab73152
  4. https://www.nature.com/articles/d41586-020-02989-9
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136032/

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