Another year. Another April. Another month of watching well-intentioned people perpetuate some really ableist stuff in the name of “Autism Awareness.” Another month of Autistic folks pushing back against damaging narratives and representations in hopes of baby-stepping society a little further toward acceptance. Admittedly, this year has been nowhere near as trying as I anticipated—it’s still April.
Though it was initially posted in January, because of all the folks trying to “promote awareness,” I’ve seen the initial Shutting Down Bullsh*t about Autism video resurface on social media (CN: linked video contains use of an ableist slur, perpetuates ableist ideas about autism, and features the literal silencing of an Autist’s voice). Dylan Marron, who hosts Shutting Down Bullsh*t, was taken to task by any number of Autistic self-advocates and has since acknowledged that the initial video was pretty messed up. He also made a second video, wherein he interviews four Autistic self-advocates that—even limited by the short format—is far more nuanced and representative than the original.
So much better.
More accurately, the second video is more nuanced and more representative of the myriad and dynamic experiences of Autistic folks. Unfortunately, the first video is a completely veracious representation of how Autists are often treated in the world, particularly by those well-intentioned, “woke” folks. That the first video so uncannily replicated the silencing of Autistic folks is definitely, for me, why it was so hurtful and enraging. And I think a substantial chunk of the reason why those of us on the Spectrum are silenced in these ways is summed up quite well in that first video: “Autism is a neurodevelopmental disorder characterized by impaired communication, repetitive movements, repetitive behaviors…” *immediately cuts away to allistic* parent explaining autism*. Welp.
I think it is important to note who is being labeled and who is doing the labeling. To allistic people, autism is “characterized by impaired communication.” To me, being Autistic is characterized by people around me being inflexible when it comes to communication and dismissing what I am communicating as a result. I once described it like this:
‘I feel like I’m FOREVER answering multiple choice questions with the instructions “choose the answer that fits best,” but the question is something like: “How much wood could a woodchuck chuck, if a woodchuck could chuck wood?” and the available answers are “ham,” “lightbulb,” “sex,” and “David Duchovny.” …I am incessantly jury rigging language so that I can attempt to communicate – I am straight up MacGyver-ing this shit.’ – me, circa July 2012
Our worldviews are different enough that what most allistic people consider “good communication” is something I can approximate, but it’s just a half-step off. It’s not that I don’t understand, it’s that I understand things differently and the nuance of that difference is difficult to communicate to folks who have not experienced something similarly.
Allow me to supernerd on you for a second. It’s like the Star Trek: The Next Generation episode “Darmok”: Captain Picard has to figure out how to speak with someone who only communicates in imagery, in metaphors (and whose reference points for those metaphors is entirely foreign to Picard). It is literally a matter of life and death that they find some means of communicating. Neither is communicating wrong. Neither are impaired in their ability to communicate. They are just different.
I ran across a quote on Facebook a few weeks ago and I’ll be a monkey’s uncle if I can remember the exact phrasing or who said it. Nevertheless, the general sentiment of the statement is incredibly salient. In not so many words, this quote intimated that functioning levels—“high functioning” and “low functioning”—are not about how Autistic folks experience their autism, but how allistic folks experience us. Basically, our relative usefulness is defined by folks with an entirely different frame of reference and is based on our relative ability to meet the demands of allistic inflexibility. Take eye contact, for instance. I can make eye contact. It makes me *super* uncomfortable, but I do it because it makes neurotypical people more comfortable (more accurately, it reassures neurotypical people that I’m not a liar—there’s quite a lot that is read into a lack of eye contact). That would be fine, if it were a give-and-take, if allistic folks made an effort to meet me where I am. But they don’t. It’s unthinkable to most allistic folks to conceptualize communication in any other way than what is believed to be “normal.”
For me, this is normal. This is who I am. This is how I experience the world. I am okay with that. I know no other way of being. But I also know that I—according to a lot of folks—shouldn’t be the way I am. That the way I am is tragic. That the way I am is dangerous. That the way I am is developmentally off. To those folks, I would like to give some instructions as to what they can do with themselves and with the horse they rode in on. I am the way I am; I am often as hilarious and uplifting as I am “tragic;” I am resilient; I developed fully into me and, while I’m no saint or hero or role model, I’m pretty damned okay.
As April winds to a close, I ask that allistic readers watch that second Shutting Down Bullsh*t about Autism video. And rewatch it. Please take the time to consider just how damaging “functioning” labels are. Please take the time to imagine what the emotional and societal violence of being silenced feels like. But, above all, please—please—take the time to do research, to listen to the voices of Autistic folks, and to consider the ways in which you can welcome Autists—in all of their glory, not just the ways in which we can “pass” as allistic—into your world. We’re here. We’ve been here. We’ve been reaching out. It’s time for neurotypical to stop passively being “aware” and to start actively accepting, to start reaching out to us too. Meet us in the middle (sorry, not sorry).
And don’t forget: soon…