But, You Don’t Look Autistic…
April is Autism Awareness and Acceptance month. I’m taking over my own social media with posts centring Autism, based on prompts from the #30DaysOfAutisticVoices calendar by @livedexperienceeducator. Today, I chose Dispel a Myth.
The myth I want to address is that Autism always looks like the Hollywood-style stereotype.
I hate to have to admit it, but I fell prey to this myth for the better part of my life. I can’t count the number of times, prior to my very late-diagnosis, that I said, “I think I’m Autistic”. But it was always with that, ‘sort of, but not really’ kind of energy. I recognized and resonated with so much of what I heard described about Autistic experiences, but because I didn’t present like the stereotype, I didn’t think it was actually possible that it could apply to me. And because I didn’t (knowingly) have any Autistic people in my circle, I didn’t dig any deeper than my misguided, surface understanding of what it actually means to be Autistic.
I mean - I get it. I’m old enough that for the first part of my life, Autism wasn’t even recognized as a distinct diagnosis in the DSM. And when it finally was, in 1980, it only included young, white boys who presented with very specific, obvious impairments that couldn’t be lumped in with childhood schizophrenia or psychosis, or explained away as character flaws, or with terms such as over-sensitive, high-anxiety, hyper-active, stubborn, defiant, difficult child, and so on.
Anyone who was born before this, who was born female, who was a person of colour, who was an adult, and many others, was not included in or made visible by the DSM criteria. Even now, decades later, those of us who don’t present as the stereotype, who have largely invisible support needs, and/or who are high-masking, are habitually missed, misdiagnosed, undiagnosed, or dismissed due to ignorance, misinformation, stereotypes, stigma, and general disregard.
The first time I came across an Autistic person who ‘looked’ like me, I broke down and sobbed. I don’t think I’ve ever experienced such relief, such disbelief, such grief, such awe, such affirmation, such hope, and such a sense of belonging all at the same time - before or since. It was like everything in my life suddenly made a kind of sense that no amount of effort, self-reflection, therapy, self-deprecation, or striving ever had, or could ever have afforded me.
I mean - here was someone who was intelligent, articulate, accomplished, and who for all intents and purposes, looked ‘normal’. Here was someone who made eye contact, who cracked jokes, who had empathy. Here was someone who was living independently, who was married, who had children and pets they actively cared for. Here was someone who wasn’t flapping, or spinning, or yelling, or reciting numbers, or any number of other things that can be part of some Autism profiles, but don’t define Autists, as people… Here was someone I could imagine having dinner or coffee with - as a friend or colleague, not as a caretaker or support person.
Jeezus… Saying that out loud makes me appalled at the depth of my own ignorance, all over again… I want to say, “I am so sorry” - to my younger self, and to every Autistic person I ever diminished by thinking this way. “I didn’t know” is no excuse, but I promise you - the minute I knew - I changed. And I’ve been studiously educating myself, centring y/our voices and working to make amends in every way I can, ever since.
Since my diagnosis, everything in and about my life has changed. And at the same time, nothing in and about my life has changed.
The most impactful part of diagnosis for me is that I now have the knowledge I need to be able to practice the kind of self care that can keep me healthy, safe, and ultimately - move me toward greater success. I am way better able to advocate for myself and others, and no longer keep pushing myself so far past my limits, that I end up chronically burnt out, sick, and suicidal.
I now know that the reason I struggle with the things I do is not that “everyone experiences this” and I’m just a failure of a human who can’t cope as well as other people. The reason I experience so many of the things I do is that I am a PDA Autistic, and I have an uncommon, sometimes challenging, and often beautiful neurotype that creates certain conditions in my brain and nervous system that require specific care.
Admittedly, it took me way too long to discover how narrow and heavily influenced by stereotypes my concepts of Autism were. That cost me. It cost me ease. It cost me self-compassion and understanding. It cost me self-worth. It cost me connections. It cost me accommodations that could have supported my success, and my mental, emotional and physical health.
It cost other Autistic people. It cost them an advocate, a friend, an informed therapist, and a powerful ally.
And it cost you too. It might still be costing you. If not because you know or love me, then because you most likely know or love someone who is Actually Autistic - even if one or both of you don’t know it yet.
Autistic or not, I hope for everyone’s sake, we will all keep learning, connecting, listening, dispelling myths, addressing our own biases, and making more and more space for each of us to actualize - authentic, empowered and whole - in all our Neurodivergent and Neurotypical expressions.
-Teron