Letter to the Editor

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In eighth grade, I scored high on an autism test. I’ve been placed in staff-facilitated groups with other students on the spectrum to handle my socializing issues since the fourth grade. Eventually, I was diagnosed with an emotional and learning disability so I could get accommodations that better reflected my academic needs.

While some autistic people are debilitated by their symptoms, the disorder is not inherently harmful; widespread ignorance does the most damage.

During these social groups I was placed in, students would converse while teachers offered feedback on what we did right, and how we could improve our social skills—usually by repressing who we were.

Adorned in puzzle pieces, teachers told us not to flap, to give eye contact despite our discomfort, and in one activity, to act out personality traits that weren’t our own to supposedly build “empathy,” as if we were the only ones who had to learn it.

Helping students develop social skills is not wrong, but insisting we hide who we are based on arbitrary standards is.

This is what Autism Speaks implicitly advocates. Every April, students wear their puzzle-piece t-shirts and participate in the annual Autism Speaks Walk, hosted at the Northfield Campus, in the name of “Autism Awareness.” And every April, my complaints about this sponsorship have been ignored by the school. The closest I’ve gotten to acknowledgment was in my junior year, where after presenting packets of sources regarding Autism Speaks with two other peers, the activities coordinator said she could not prevent the annual walks, as Autism Speaks is entitled to rent New Trier facilities.

In 2009, Autism Speaks released their “I am Autism” commercial, where a menacing voice representing autism describes itself. The ad claimed that, “I [Autism] work faster than pediatric AIDS, cancer and diabetes combined.” No, autism is not a progressive condition, it’s a developmental disorder, and no, it’s not worse than three lethal diseases. One year ago, Autism Speaks posters decorated New Trier High School, claimed that autism is simply diagnosed more than the three diseases, which, while true, is still an odd comparison meant to invoke fear.

With the expressed purpose of funding global biomedical research into the causes, prevention, treatments and a possible cure for autism, Autism Speaks was founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed with autism. By introducing the unheard-of disorder to the public as a danger to be eradicated while silencing the voices of autistic people, Autism Speaks has garnered support from the pervasion of misinformation and mischaracterization.

According to their 2017 Strategic Plan for Science, their most recently published plan, their goal 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.” This has been a fundamental aspect of AS’ platform since its conception. According to their 2017 990 Form budget, 32% of their budget was spent on this research, and not counting scientific grants, only 3.8% was for “Family Service” grants. The organization continues to prioritize erasing autism over serving those living with the condition.

Of their 26 board members, only 2 are autistic, meaning the direction of the organization is still run by allistic people. In other words, Autism Speaks speaks over autistic voices. As if we don’t know what’s good for us.

It’s time we stopped letting an allistic-run organization represent a disorder as diverse as autism. Celebrate Autism Acceptance and consider supporting autistic-run organizations like the Autistic Self Advocacy Network and the Autistic Women & Nonbinary Women Network.

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