Column: Against Autism Speaks: A voice of my own
I am on the autism spectrum. It’s part of my identity. It shapes the way I interact with people on a day-to-day basis, and I’m proud to say it’s a part of who I am. Autism affects different people in different ways, and to varying degrees, but it tends to involve impaired communication and repetitive behaviors.
As of 2014, one in every 68 children in the United States is diagnosed with autism — and that’s probably less than the number who actually have it, considering that autism tends to be underdiagnosed in girls. With so many people living with autism spectrum disorder, it was inevitable that a number of organizations would spring up around the goal of helping people “on the spectrum,” such as the Autistic Self Advocacy Network and Autism Network International. Unfortunately one the most prominent of these organizations, Autism Speaks, is prejudiced against the very people it claims to help.
According to Autism Speaks, the way my mind works (which is notably different from that of a non-autistic person’s, whom we might call “neurotypical”) needs to be cured, and this is the main concern of their organization. Only 3 percent of the Autism Speaks budget goes toward funding services, such as family grants, occupational therapy and assistive communication technology. Which, if handled correctly, might actually help autistic children and their parents. Instead, the bulk of the organization’s funds go toward bureaucracy, propaganda and their search for a “cure.”
The organization once released a video entitled “Autism Every Day,” in which a member of the organization talks about how she wants to drive herself and her autistic child off a bridge, and the only thing that kept her from doing so was the fact she also had a neurotypical child. She said this while her autistic child was playing behind her. For some reason we are expected to sympathize with her situation.
When we are not burdens ruining our parents’ lives, Autism Speaks frames autistic people as diseased and incapable of self-determination. People who are to be pitied and used as props in their search for a “cure.” Calling for a cure for autism is as insulting as calling for a cure for homosexuality — and the treatments they endorse resemble those same “reeducation” methods. Autism Speaks has promoted the Judge Rotenberg Educational Center, an organization that has used electroshock therapy on autistic children as negative reinforcement to compel them to behave in a more neurotypical way.
Advocates on the autism spectrum almost always oppose these searches for a “cure.” These objections aren’t only the opinion of “high-functioning” autistic people, but also of “low-functioning” autism advocates such as Amy Sequenzia, who has called Autism Speaks a “hate group” based on the definitions given by the FBI and the Southern Poverty Law Center. There are aspects of autism that can be beneficial: studies have shown that autistic people are up to 40 percent faster at problem solving and are more likely to think of innovative ideas than their neurotypical counterparts. Considering the deficits of neurotypicals in these fields, perhaps we should consider trying to find a cure for their condition instead.
Until 2015 the only autistic board member of Autism Speaks had been John Elder Robison, who actually resigned from the organization in 2013 over its policies and currently is a strong supporter of the neurodiversity movement — which works to promote the acceptance of autistic people as they are, rather than trying to “cure” them. It was not until late 2015 that the organization added any new autistic members to the board of Autism Speaks.
As late as 2009, Autism Speaks held the position that vaccinations are a contributing cause of autism. While I must give them credit as they have now renounced this pernicious and blatantly incorrect position, the “vaccines cause autism” crowd remain an unfortunately vocal group, and feed on similar anxieties of autistic subhumanity.
Even beyond the blatant lack of evidence, and the vast amounts of proof to the contrary, what is especially horrifying about anti-vaxxers is that these people would rather their children die from easily preventable diseases than have them “become” autistic. A number of celebrities and political figures, including the president of the United States, all believe in this unsubstantiated, pseudoscientific garbage.
Donald Trump has even reached out to the prominent left-liberal Robert F. Kennedy Jr. to lead a “vaccine safety commission,” despite the multiple agencies that are already concerned with vaccine safety, motivated by their shared fear of autism. This coalition truly shows that even in times of extreme political division, Republicans and Democrats can come together to do the wrong thing.
Instead of searching for a “cure” to something that’s not a disease for people who don’t even want to be “cured,” or panicking over Hollywood pseudoscience that views dead children as better than “broken” ones, we should be providing resources to help autistic people adjust to their environments, receive the same rights and opportunities as neurotypicals, and retain their autonomy and identities. Once again, I have to speak in favor of the Autism Self-Advocacy Network, an organization led by autistic people to actually help other autistic people. If you actually care about autistic people, you should consider supporting them instead of Autism Speaks.
Thanks for reading.
Read more in Opinion,
Share on social media?