April is Autism Acceptance Month
This is my diagnosis story
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April is Autism Acceptance Month, so it seems as good a time as any to talk about my own autism diagnosis!
I was diagnosed just last year, at the age of 43, with Autism Level 1. The “Level” refers to the degree of support I require in order to navigate the neurotypical world. There are three levels, and 1 indicates the least degree of support. Basically, with the help of my husband, my sister, my therapist, and my literary agent, I can more or less cope with anything that comes along in the neurotypical (NT) world. (My sister—my identical twin—is also autistic, was also diagnosed last year, and she makes videos on autistic burnout here.)
For people who are like, “Is that Aspergers?” the answer is: it depends what country you’re in and who’s doing the diagnosing. Here in America it’s Autism Level 1. The DSM folded the diagnoses together for a variety of reasons that… it’s a long story. A foolishly short version: maybe there’s too much eugenics and, um, Nazis tied to the story of Asperger? It’s complicated, people disagree, but I’m generally on the side of, “Let’s name fewer things after the people who studied it and more after the people who ARE it,” regardless, so. It’s autism.
Anyway. My story has two parts that I think might be helpful both/either to other autistic folks and/or NT folks who want to understand their autistic friends. Part 1 is about how I came to be diagnosed. Part 2 is about how autism shows up for me, and I’ll save that for another post.
This is my diagnosis story.
On a handful of occasions over a course of about five years, my therapist would wonder aloud, “Have you ever thought you might be on the spectrum?” and we would both shake our heads and go, “Naaaaaah.” Which goes to show how warped our understandings of autism were.
But then I consumed two pieces of pop culture in 2020. First, there was Hannah Gadsby’s Douglas, (Netflix link) a lot of which is about her experience of autism. I loved it, but the whole time I was thinking, “Is that what autism is like? Because that’s a whole lot like me, and I’m not autistic….?”
And then I saw the Pixar short Loop, (Disney+ link) which is when I didn’t wonder anymore. If you haven’t seen it and you have Disney+, I hope you’ll watch it. If you don’t have Disney+, I hope you’ll find a friend who does so you can watch this short. It broke me in the best way, in the way that changes your life forever.
It’s the story of two kids in a canoe, Marcus, who is neurotypical as far as we know, and Renee, who is autistic. She’s nonverbal and communicates with Marcus via her phone and nonverbal communication. Her phone is also a “stim,” a soothing stimulation in the form of a ringtone that includes a jingle and some dog woofs.
He rows them, at her direction, to some reeds poking out of the water and swaying in the breeze. Renee closes her eyes, holds out her hands, and lets the tips of the grass brush her palms and forearms. Marcus, recognizing an opportunity to create a sensory experience, rows them under a bridge, where that ringtone echoes in the darkness, which is great—until a speedboat roars by them, rocking the kayak and making a terrible noise. Renee panics and he rows the boat to the nearest shore. The canoe turns upside down and Renee hides under it, screaming and crying for a long time.
Marcus doesn’t know what to do. Eventually he just sits beside the canoe and waits, as her crying grows quieter.
Eventually, Marcus says the thing that kicked me in the gut: “You can be kinda intense, you know? Anyways, I think I’m just gonna hang out and wait until you tell me what you want.”
Okay, so there’s this approach to literary analysis (and dream analysis and Tarot analysis…) that says every part of the story is YOU or the main character.
In this case, in that moment when Marcus sits by the canoe, I was both Renee and Marcus. I recognized, deep in my body, both the experiences of crying under the canoe and of sitting beside the canoe, waiting for the crying part to find her way to calm. That whole scene, that whole moment, has happened inside my own body more times than I can count. I melt down or shut down, and I wait patiently for this intense part of me to come back from wherever she needed to go. Yeah. That image of one kid under the canoe, one kid sitting by the canoe? As the kids say: It me.
I cried through the rest of the short film, and I kept crying for another hour. I thought, “If that’s autism, I’m autistic. I’m autistic. I’m autistic.”
I thought autism was boys who are really into trains and can’t be taught to be socially appropriate. I thought it was Temple Grandin or Rain Man and all the absurd, destructive stereotypes. But if Renee is what autism can be like… It me.
The rest of the film’s story: As Marcus waits, Renee comes out from under the canoe. He waits some more as the sun sets and she plays with a blade of grass against her palm. She hands him the grass, she makes eye contact and smiles. And they get back in the canoe and go home.
The rest of my story: In spring of 2021, I saw a local neuropsychologist and did many hours of testing for lots of things. We did it online, of course, because: pandemic. It was expensive and not covered by my insurance. The result was a big ol’ report that said, “Yah. 100%, definitely autistic. It is not a close call.” Also “wicked good verbal memory and thus spent four decades leaning hard on books and memorization to compensate and mask.”
So here I am. I’m the lady who gives the TED talks, and I’m also Renee under the canoe.
There’s more to me, too, of course, just as there’s more to you than the self you present to the grocery store and the self you present to different family members and the self you present at work.
And this is just my experience. Everyone on the spectrum has their own story, different from everyone else’s—hence, “spectrum.” Being hyperverbal means I can tell my story in a way the NT world might be able to hear more comfortably, but it doesn’t make my story “more autistic” or “less autistic” than anyone else’s. People vary. Listen to them.
And look, I’m new here. I couldn’t be a spokesperson for autistic people, even if I wanted to be. I barely understand myself, much less autism in general. After four decades of believing I was just a highly sensitive, intensely introverted weirdo, I’m rethinking every experience I’ve ever had, every job I’ve been fired from or quit before they could fire me, every relationship I could feel someone trying to start when I had no idea how to respond, every moment I felt like an alien dumped on Earth and forced to pretend to be human to survive.
It's a lot. It’s… well, it’s kinda intense. Maybe I’ll just hang out and wait until my brain figures out what it wants.
Hey. Confidence is knowing what’s true. Joy is loving what’s true.
My diagnosis has been great practice at both.
Questions or comments? Please email my very tiny team at unrulywellness@gmail.com
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Signed copies of Come As You Are can be obtained from my amazing local bookseller, Book Moon Books.
Stay safe and see you next time.
