Graciously edited by disability advocate & sibling to Autistic person, Sinjita Bhattacharya
Content warning: this piece discusses heavy cases of ableism.
April is Autism Awareness Month.
That title should make you cringe. You probably grew up celebrating Autism Awareness Month in school. Posters were hung up, assemblies were held, and some hallways were even redecorated to “Light It Up Blue,” all to raise awareness about the developmental disorder autism. These annual celebrations were such a normalized part of our childhoods that many of us don’t question the continuation of these messages. However, the concept of autism awareness is outdated. It was created entirely by those who are neurotypical, or non-autistic.
Autism Speaks in particular has been incredibly vocal about autism awareness. Yet the organization’s approach to awareness is built on fear mongering. Most infamously, the group created the video I Am Autism in 2009. The video is shot as a short horror film. In it, Autism is a character separate from both child and parent. Rather than a part of an identity, the disorder is personified as an invasive monster that plots to break apart families. The character Autism narrates the video and fills it with threats such as, “I will plot to rob you of your children and your dreams.”
The group’s demonization of autism was then used to push for their own personal and harmful agenda for the community. Much of their “research” goes toward genome sequencing. Their written objective is that genome sequencing will help create individualized therapies for those with autism. However, the suggestion that families with an autism diagnosis undergo genetic testing is worrying. The group’s end goal of identifying genetic markers for autism draws eerie parallels to the eugenics movement.
Autistic advocates have long spoken out against Autism Speaks. They push for acceptance rather than awareness, and criticize the group for their lack of representation. Their first autistic board member, John Elder Robison, resigned in 2013 after his views were continually dismissed. In an open letter to the organization, Robison criticized the group’s harmful portrayal of autism, and noted his efforts to divert research funding toward creating greater societal support for those with autism. By boxing out the only autistic voice on their team, the neurotypical board members of Autism Speaks excused and continued their demonization of the community.
Because I myself am neurotypical as well, I cannot tell you the best way to spend Autism Acceptance Month. What’s critical, though, is to properly research your goals before following through with them. As Autism Speaks has proven, inaccurate advocacy is worse than none at all.
For more information from those with autism, check out:
Organizations
Autistic Women & Nonbinary Network
Autistic Self Advocacy Network
Autism on the Mighty
People
The Autistic Cats @The.Autisticats on Instagram, and @autisticats on Twitter
Teona @tee_spoonie on Twitter
Hari Srinivasan @HariSri108 on Twitter
Paige Layle @paigelayle on TikTok and Instagram, and paige layle on Youtube
Lydia X. Z. Brown @autistichoya on Twitter
Sara Jane Harvey @agonyautie on Instagram
Drewy Curious @drewynovaclara on Instagram
PJ Au @pj_au_ on Instagram
21 and Sensory @21andsensory on Instagram and Twitter, and 21and Sensory on Youtube
The Chronic Couple, Matt and Brandy, @the.chronic.couple, @brandyhaberer, and @spectrumy_matt on Instagram, and The Chronic Couple podcast available on Apple and Spotify
Works
Keep the Change movie available for purchase or with Amazon Prime Video subscription
When Autism Speaks Ted Talk available on Youtube
I Resign My Role at Autism Speaks, John Elder Robison’s letter which can be found online
Look Me in the Eye by John Elder Robison
Sincerely, Your Autistic Child by Autistic Women & Nonbinary Network
Loud Hands by Autistic Self Advocacy Network
Neurotribes by Steve Silberman
The Reason I Jump by Naoki Higashida
Stim: An Autistic Anthology by Lizzie Huxley Jones
All the Weight of Our Dreams: On Living Racialized Autism by Autistic Women & Nonbinary Network
These resources come directly from autistic voices. Many contain a more realistic, hopeful tone than the harmful portrayals of autism pushed by outside organizations. By following these resources closely and gaining insight into the pride that can be felt by autistic people, hopefully, you’ll be ready to celebrate the annual Autistic Pride Day alongside these creators on June 18.