Autism Acceptance (Not Awareness) Month

Disclaimer: I feel it necessary to point out, preceding a blog urging people to listen to autistic voices, that I am not, in fact, autistic. I am not neurotypical either. I am a proud Attentionally Different, Hyperinterested Dude (ADHD). I have various family members, friends, and colleagues who are autistic, and I participate in autism advocacy. I also work with many autistic individuals in my private practice.

In April, 2016, my family and I participated in an event called Chico Walks for Autism. Overall, it was a great event. There were booths from various programs that worked well with autistic people, fundraising for organizations that directly work with autistic folks, food, music, camaraderie, and people of all neurological types. But one negative image stood out, and has become prototypical of how well-meaning Allistic (not Autistic) people inadvertently have created programs that are dismissive of actually autistic people.

The walk itself was a beautiful stroll through Bidwell Park, with volunteers (mostly high school and college students) lining the road and passing out beverages and praise to participants. Near the end, we were required to walk through a small tunnel. At the end of the tunnel was a group of bubbly, excited college women jumping up and down and cheering as the children reached the end of the course. This resulted in many overwhelmed children and adults frantically putting their hands over their ears and squelching up their faces in pain as they navigated through the tunnel.

Clearly, the women were well-meaning. But they had little understanding of what it feels like to actually be autistic. They were unwilling to understand the autistic experience and modify their behavior from their privileged position of being the neurological norm. They didn't pay attention to the pained looks on these people's faces nor understand what it was like from the autistic point of view. In their mind, they were being supportive allies, not engaging in a potential harmful behavior. This is a corollary to many misguided interventions and programming for autistic people. Instead of accepting them for who they, accommodating their needs, and giving them skills to communicate, they are forced into unbearable situations or turned into tools for awareness movements whose main objective is to get rid of the autism - something inherently impossible to do.

Which brings me to this month, officially International Autism Awareness month. The Autism Awareness movement has been perpetuated mainly by Autism Speaks, a group readers may be surprised to learn has the ire of many autistic people. The reason is illustrated above in the way well-meaning people created an event that was unbearable, in part, to many autistic people. Take that example, and then apply it to the entirety of available interventions for autistic people. Some have even accused Autism Speaks of having genocidal intent - in that their ultimate goal is for get rid of autism completely - something that many autistic people see to be as a horrific goal.

Imagine if the NAACP had only white people in their leadership. Imagine if policy regarding women’s health were dictated solely by white men (oh wait…).?Autism Speaks has never incorporated the voices of actually autistic people. Far worse, the rhetoric of the organization has led to terrible stigmatization of autistic people, crank “cures” that have resulted in the deaths of autistic people, support for therapies that have traumatized autistic people, empathy for parents that have murdered autistic people, and created the anti-vaxxer movement. In recent years, John Elder Robison, an autistic writer was on the board of Autism Speaks, but soon left after his concerns went unheeded.

Addendum (April 2019): Since this was first published, Autism Speaks has changed their mission statement and has included autistic voices as a result of the growing backlash - but the organization still has not truly owned up to and apologized for harm in the past, continuing the distrust from autism advocates.

So this month, I am not “Lighting it up Blue” – a signature of Autism Speaks and autism awareness. The concept itself smacks of the same insensitivity as the tunnel example above. Why would we want to light it up a bright vibrant color when autistic people are known for their profound sensory sensitivities? Also, blue was used because of the incorrect stereotype that autistic people are predominantly male. This is untrue and damaging - as discussed in another post. So instead, as an act of opposition, autistic people have created "Tone in Down Taupe" and "Red Instead." Full disclosure – our family used to be Autism Speaks people. We are no longer. We get it. The entire world is aware of autism.?Now, can we learn to accept autistic people? Can we learn to give them support, accommodations, love, and membership in our groups and communities without requiring them to act in a way that is inherently against their nature? Can we appreciate them for their unique gifts and make room for their profound sensitivities without requiring them to act "normal"?

?One way to do so is to turn off that blue light and research alternatives. If you are on Twitter, follow #ActuallyAutistic, #RedInstead, and #ToneItDownTaupe. If you are not, check out the Autism Acceptance movement and the Neurodiversity movement. Start here. And if you or your loved ones are part of the autism family, consider tearing up that check to Autism Speaks, and instead send it the Autism Self Advocacy Network – a counter to Autism Speaks run by actually autistic people. And most importantly - listen to the autistic people in your lives. Get to know the world from their point of view. You may find yourself enriched and connecting in unexpected ways.

Dr. Joel Schwartz is a Clinical Psychologist in San Luis Obispo, California specializing in working with the misunderstood. He can be reached at [email protected]