Scores of Autistic people vehemently denounce the organization, you should know why
When neurotypical people think of Autism Spectrum Disorder (ASD), they often think of organizations such as Autism Speaks, which is one of the most internationally recognized autism groups. However, as an organization, Autism Speaks remains one of the most hotly debated aspects of the autistic community, given the questionable actions of those who run the foundation and what it fundamentally stands for.
In 2009, Autism Speaks released a three-minute advertisement which depicted Autism Spectrum Disorder as a stalker that knows where you live and is constantly watching you. Perhaps even more concerning: The advertisement suggested ASD is far worse than cancer and AIDS and is guaranteed to make your marriage crumble. Don’t believe me? Read an excerpt from the transcript below.
“I [in the POV of autism] work faster than pediatric AIDS, cancer and diabetes combined. 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,” the excerpt reads. “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, birthday party or public park without a struggle, without embarrassment, without pain.”
Emily Willingham, a former contributor to Forbes Magazine and the mother of an autistic son, said in a 2013 article that the depiction of autism as a threat and a condition in desperate need of curing only further stigmatizes neurodivergency and de-emphasizes acceptance and unconditional positive regard for those with ASD.
“Parenting can be tough and can leave you tired, mentally, physically and emotionally. It’s true. But I can’t begin to say how offensive it is that someone would distort our lives with our wonderful children as not even living, as nothing but ‘despair’ just to buy attention from people who don’t know any more about autism or autistic people beyond that blue puzzle piece,” Willingham wrote. “Or that this cherry-picked representation of parental hardship, with no mention of the needs of autistic children, is used to paint a sort of forthcoming reign of terror over our nation if we don’t do something about it.”
“Parenting can be tough and can leave you tired, mentally, physically and emotionally. It’s true. But I can’t begin to say how offensive it is that someone would distort our lives with our wonderful children as not even living, as nothing but ‘despair’ just to buy attention from people who don’t know any more about autism or autistic people beyond that blue puzzle piece.”
In Autism Speaks’ 2018 annual fiscal report, 49% of their funds went towards “awareness and acceptance,” while only 20% went towards actual support and services for autistic people and their families. While lobbying for legislation in support of autistic people is not inherently bad, many of Autism Speaks’ stances do not appear to support those with ASD.
“Though, as stated before, their advocacy is not really helping the autism community; in fact, it’s promoting many of the stigmas that the community is seeking to shake,” wrote Armon Owlia, a contributor for The Triangle. “Indeed, it creates the perception that people on the spectrum, no matter where they lie, are anomalies in everyday life.”
In 2014 for example, Autism Speaks lobbied heavily against an amendment to the Autism Cares Act which set policies in place for the inclusion of autistic people in policy and research decisions, effectively silencing the voices of the community they are slated to represent. The most recent edition of the Autism Cares Act, signed into law by President Trump in October 2019, injected nearly $2 billion into research programs for autism and virtually nothing for families and those actually afflicted with autism.
Bob and Suzanne Wright, who founded Autism Speaks in 2005 after their grandson was diagnosed with ASD, have also come under fire in the years since for their concerning rhetoric regarding autism and how it affects loved ones of those afflicted. In 2013, Suzanne wrote a controversial call to action to legislators on Capitol Hill where she referred to ASD as a “crisis” and said families of those with autism are “not living.”
As recently as 2016, Autism Speaks also openly (in their mission statement and elsewhere) advocated for a cure for ASD, suggesting that there is something inherently wrong and fixable with those who are on the spectrum. They have since changed their mission statement to include the word “solutions” for the needs of autistic people, which many opposers have called a “substitute” to their original goal of finding a cure while still failing to consider the thoughts and feelings of those who are neurodiverse.
The Board of Directors for Autism Speaks, by and large, is chiefly composed of those who do not have ASD, a critique pointed out by several autistic people and organizations that aim to prioritize the needs of this community first. Only three autistic people in Autism Speaks’ 15-year history have served in administrative roles in the foundation.
“No reasonable person would dare suggest that an organization composed entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color,” wrote Lydia Brown, an autistic adult advocate who champions a blog called Autistic Hoya. “Yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.”
“No reasonable person would dare suggest that an organization composed entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color.”
While it is entirely possible there are individuals within Autism Speaks with nothing but good intentions, the backlash from the autistic community against this organization for very reasons cannot be ignored or understated. A slew of other mishaps, such as an underlying belief valid by the founders that vaccines cause autism (a myth which has been debunked numerous times) as well as the organization’s partnership with a day school in Massachusetts that used shock therapy as recently as 2019 before a ban, have effectively destroyed any semblance of trustworthiness and respect in the organization.
“Many companies believe supporting Autism Speaks is good for business despite its controversy, and ignore the autistic community. As an autistic person, I oppose Autism Speaks and related ableist organizations,” wrote Cassandra Crosman, an autistic graduate student at Western Oregon University, in a blog post from 2019. “I refuse to allow its pathologizing language to dictate my self worth. And I will try my hardest to persuade people and organizations that support Autism Speaks to think otherwise and listen to the autistic community.”