“Refusing to perform neurotypicality is a revolutionary act of disability justice. It’s also a radical act of self-love.”
-Dr. Devon Price, Unmasking Autism
I didn’t want to write about autism in April. It felt like too much of a cliche. And to be perfectly honest? I was scared.
In case you didn’t know, April is autism acceptance and awareness month. It seemed like the obvious choice for an April newsletter, and yet I tried to write about literally anything else. I am fully aware of the irony in having an entire newsletter dedicated to vulnerability and yet being afraid to post something because it’s too vulnerable. I’ve come to realize lately that vulnerability is a double-edged sword — a thin blade between fear and freedom. It can be downright terrifying to show the world exactly who you are, and yet real connection is impossible without doing just that.
So here it is: Happy April! I’m autistic! Let’s talk about it.
I was diagnosed with autism and ADHD in the spring of 2022, but I’ve known I was “different” for as long as I can remember. Pretty much every neurodivergent person knows long before they get any kind of diagnosis (if they even get a diagnosis at all). We might not know entirely why we feel the way we do, but we can tell that the way we move through the world is fundamentally different than it is for most people.
I began suspecting I might be autistic after struggling with severe anxiety that wasn’t getting better no matter what I did. No amount of meditation or medication was helping. In fact, it was all just getting worse the older I got. So I did what I do best: let myself fall down the rabbit hole of the internet. I stumbled across an article that mentioned a variety of conditions that are commonly misdiagnosed as anxiety in women, with autism and ADHD at the top of the list. Soon after, I came across a video of a woman around my age talking about what being autistic felt like to her. She said, “I feel like I’m acting in a play where everyone got a copy of the script except me.” I realized I had felt that way for my entire life, but had never heard anyone else explain that feeling before. Something clicked for me then, and I just knew.
The more research I did, the more clear it became. Despite my gut feeling and all the research to back it up, doubt (and internalized ableism) still crept into my mind. I had studied autism in grad school when I was getting my master’s degree to be a speech-language pathologist. We had been taught a very stereotypical version of it: mostly boys, mostly non-speaking, lots of hand flapping, very into trains. I had worked with dozens of autistic kids, and our lives looked vastly different. But the more research I did, the more I learned about how autism presents differently in women than it does in men. And to no one’s surprise, most autism research has been done on men.
Autistic women are often mislabeled as shy, awkward, or anxious. We tend to mask much more than men, so people don’t see how much we’re struggling. Our special interests are more socially acceptable (celebrities, fictional characters, literature, etc.). A little boy who loves to line up all of his trains? Autistic. A girl who can tell you every single thing there is to know about Taylor Swift? Just a typical teenage girl.
When I look back on my childhood, I can see the traits and behaviors that had been brushed off as just shyness were very clearly autism. Making my mom speak for me in social situations? Autism. Dreading and failing miserably at small talk? Autism. Not knowing how to join in and play with other friends unless explicitly asked? Autism. Inability to have a conversation when emotionally overwhelmed? Autism. Chronic insomnia? Autism. Stomach issues? Autism. My deep obsession with Buffy the Vampire Slayer? Autism (and also probably lesbianism).
Growing up, I struggled to understand tone and how people often say one thing but mean another. I was an avid rule-follower and didn’t understand why people followed some rules but others were considered okay to break. I had a hard time gauging people’s intentions and would often be taken advantage of by people I assumed were just being kind. I sit here now and think about all the times I was made fun of to my face but had no idea because I couldn’t pick up on the cruelty. My heart breaks for that younger version of me.
Over time, I became an expert at masking (hiding) my autistic traits. Learning how to appear “normal” by mimicking other people. Putting myself in incredibly uncomfortable social situations way beyond my threshold. Ignoring my sensory needs until it was physically painful. I had this idea that if I just pushed through, eventually it would get easier. I slid under the radar for years, never letting anyone else see how hard things were for me and how much effort I put into hiding it all. After all, I was “a pleasure to have in class!” How could that girl be struggling?
For the longest time, I thought I was just bad at being a person. I thought maybe it was this hard for everyone but other people were just better at pretending. With each passing birthday I would think this is the year I finally get it right. This is the year I become a social, not awkward, capable adult human person! But it never happened. In fact, it only got harder. In his book Unmasking Autism, Dr. Devon Price writes that masking is “[…] not necessarily a conscious choice. Masking is a state of exclusion forced onto us from the outside.” For me, masking is so deeply ingrained it’s like muscle memory. It is an exhausting attempt to fit in that only leaves you feeling even more left out.
Being a high-masking autistic person means people constantly assume you’re neurotypical just because you’re good at pretending. And I get it. Most people don’t look at me and automatically assume I’m autistic because I’m not a three-year-old boy obsessed with trains or space. But this also means people feel comfortable making a lot of off-putting and frankly ableist remarks about autistic people right in front of me. In fact, I can’t even begin to tell you the amount of downright cruel things I have heard about autistic children come straight out of the mouths of the very adults who applaud themselves for “helping” them. I worked professionally in the field of disability for six years and part of the reason why I left was the constant exhaustion of working within a broken system that didn’t work for me or the kids I was trying to help.
Even doctors who claim to be “autism specialists” still tend to have a very narrow and stereotypical view of what autism looks like. In fact, the first doctor I saw for a diagnosis essentially told me I couldn’t be autistic because I had a job and lived by myself. And yes, I understand that I have the privilege of being employed when around half of the nearly 6 million autistic adults in the US are under- or unemployed (I also suspect that number is higher than 6 million due to the amount of adults who are misdiagnosed, self-diagnosed, or missed completely in the diagnostic process). I understand that I appear “high-functioning” (I hate functioning labels, just FYI). But why are we more focused on how other people experience our autism than how we — actual autistic people — experience it? Because isn’t that more important? When people tell me I don’t “seem autistic” what they really mean is “I don’t see your autism because your autism doesn’t affect me.” But it doesn’t affect them because I spend an exorbitant amount of energy making sure it doesn’t by acting differently, by pretending. It affects me every second of every day, and that should be all that matters.
So yes, I have a job. But I can’t tell you how many times in my life I’ve cried on the way to work. At work. On the way home from work. How I used to have to lock the door to my old office and sit with my hands over my ears because the noise and people were too much. Yes, I live on my own. But some days I physically cannot leave my bed or feed myself. Yes, I have friends and can get by in social situations. But maintaining friendships is difficult and I have a constantly-running inner dialogue that’s something like okay make eye contact but not too much / now you’re looking too much look away for a minute / but not for too long of they’ll think you’re not paying attention / oh shoot what did they say? / smile / laugh / ask a follow-up question / now they’re asking you a question / say something / literally anything! / SPEAK!
Receiving my diagnosis was initially a huge relief. I realized I wasn’t just bad at being a person and there wasn’t anything inherently wrong with me — my brain was just wired differently. In fact, I was so happy upon receiving my diagnosis that I started crying as soon as I hung up on the Zoom call with the doctor. I even have embarrassing photos of me crying happy tears as proof I could look back on later. Soon after, however, the reality began to settle in: if it’s the way my brain is wired, then I will always be like this. The fantasy of magically becoming this idealized version of myself disintegrated before my eyes.
I often worry about people finding out I’m autistic and then treating me differently because of it. Even as I’m writing this, I’m terrified that even the most well-meaning people reading it will suddenly think differently of me, and not in the way I want them to. Because the truth is, I do want people to treat me differently when they find out I’m autistic. I don’t want them to infantilize me, talk down to me, think I can’t do things that I’m perfectly capable of. What I do want is for them to be more compassionate, more patient, less judgmental.
It’s been two years since I was diagnosed and I feel like I’m only just beginning to figure out what being autistic looks like for me. I’ve become more attuned to my sensory needs (noise-cancelling headphones are truly a lifesaver). I ask for more clarity and structure when I need it. I set reminders on my phone for literally everything. Despite making all of these accommodations for myself, it is still not easy to exist as an autistic person in a world not designed for me. I still frequently experience sensory overload that leads to a full-on meltdown. The smallest change in plans can throw off my entire day. I still rehearse social situations ahead of time and replay them over and over again in my mind, analyzing and over-thinking every single word and facial expression.
It’s exhausting, never being able to take a break from your own brain.
One of the hardest parts of being diagnosed at 29 is that I am here at 31 feeling like I am only just now getting to know myself. I spent 29 years of my life trying to contort myself into a box that would never fit, and now here I finally am with room to breathe and I’m not always sure what to do with all this extra space.
I realize, in coming to the end of this, that there is so much missing here. How autism is a spectrum, but not a straight line with “autistic” at one end and “not autistic” at the other. The barriers to accessing professional diagnosis and the validity of self-diagnosis. The intersectionality between autism and queerness. It would be impossible to cover everything with the nuance it deserves in one newsletter, and frankly, I’m not the right person to be telling many of those stories. I’m just here to tell my own, and even then I’ve barely scratched the surface. But I guess the point is that I’ve told it at all, and that counts for something.
I want to end by discussing some of my favorite representations of autism in media. These two television shows were some of the few times I’ve seen my autistic experience reflected back at me and I can’t even begin to explain how validating they were for me. Sometimes all we need is to see just one other person experiencing the same thing to know we’re not alone. Sometimes, that’s enough.
Heartbreak High is an Australian television show streaming on Netflix that follows high school students through all of their drama-filled ups and downs. The show is a reboot of a popular Australian series from 1994. Aside from being some of the best autistic representation I’ve ever seen on screen, the show also does an incredible job weaving in characters and storylines that touch on queerness and gender identity, race and Indigenous issues, mental illness, and trauma.
My favorite character on the show is Quinni. Quinni is autistic and is also played by autistic actress Chloe Hayden. Quinni is bubbly and sweet and always has the coolest, most glittery makeup that I would die to be able to pull off. The show could easily play into the Manic Pixie Dream Girl trope with Quinni, which is a fate reserved for many autistic female characters in various forms of media. Instead, we’re given an incredibly honest and authentic look into Quinni’s autistic experience.
In one scene, we see her out at dinner struggling to focus on what her date is saying because of the overwhelming lights and sounds happening around her. She anxiously wrings her hands and fidgets with her rings — a stim I know all too well — with a blank look on her face while she tries to process and take in everything happening around her. Quinni’s date, Sasha, appears visibly annoyed at Quinni’s behavior.
Later on in the same episode we see Darren, Quinni’s best friend, do an amazing job at helping her calm down after her overwhelming experience on the date. Quinni, on the verge of tears, explains to Darren how she was trying so hard to listen on the date. “Every time I tried to talk or tried to listen or tried to focus Sasha would look at me like I was weird,” Quinni says. Struggling to listen and pay attention and appear “normal” in the midst of sensory overwhelm is bad enough, but being able to tell from the look on someone’s face that you’re not doing a very good job at hiding it feels even worse.
Quinni eventually confronts Sasha and tells her she’s autistic, explaining that when she gets overwhelmed it gets difficult for her to speak. Sasha’s response is to essentially say “but you don’t seem autistic!” and to comment on Quinni’s emotional intelligence. This is a very common experience for highly-masking autistic people, and something I’ve had many well-meaning people say to me when they find out I’m autistic. The problem with this kind of response is that it both stereotypes autistic people and downplays our experiences. We can be emotionally intelligent and still be autistic — the two are not mutually exclusive.
In a later episode, Quinni and Sasha go to a book talk by Quinni’s favorite author. Quinni gets all dressed up and is so excited to see and talk to the author, all the while Sasha acts bored and irritated by Quinni’s enthusiasm. As someone who has often downplayed my special interests in front of people as to not come off overly eager or annoying, this scene broke my heart. But the most heartbreaking scene of all is later on in the episode where Quinni and Sasha get into an argument on the bus. Sasha tells Quinni not to pull the “autism card” and says that Quinni being autistic is “a lot” for her sometimes. Quinni’s response to Sasha? “It’s a lot for me too, Sasha. It’s my whole life.”
Most autistic people will tell you that we understand it can be difficult for other people to accommodate our needs. We often feel like a burden and this can make it difficult for us to advocate for what we really need. But if you think it’s difficult to accommodate an autistic person, imagine how difficult it is to live as one in a world where you’re constantly reminded of your differences and how they inconvenience other people. I often find myself focusing more attention on how other people experience my autism than I do. I’m constantly reminding myself that I need to be understanding as to how other people might be inconvenienced or irritated by me or my behavior. But it’s really not a lot to ask for what you need, and Heartbreak High’s Quinni is a much-needed reminder of this.
Everything’s Gonna Be Okay is a comedy series written by Australian comedian Josh Thomas that ran for two seasons on Freeform and is currently streaming on Hulu. The show follows Nicholas (Thomas) as he becomes the legal guardian of his two half-sisters Matilda and Genevieve after the sudden death of their father. The character of Matilda is autistic and is also played by autistic actress Kayla Cromer. The character I really relate to, however, is Nicholas.
Nicholas discovers he’s autistic toward the end of season two, and Josh Thomas actually discovered he was autistic while working on the show. The scene where Nicholas discusses the possibility of his autism with Matilda is one of my favorite depictions of the autistic experience — what it’s like to work so hard at masking thinking everyone else is doing the same, only to learn they’re not. Matilda doesn’t believe Nicholas is autistic at first and denies the possibility multiple times, saying “you’re fine, you’ve always been fine.” Nicholas then explains to her that he knows he appears fine, but it’s all an act.
“I put an embarrassing amount of work into camouflaging how confused I am, how twitchy I am, and just generally stopping myself from behaving the way I want to behave […] I thought everyone was doing as much work as me but it turns out no. It turns out some people — well actually most people — just know how to be.”
For the longest time, I thought everyone else was pretending and putting in just as much work as I was to appear “normal.” I’ve always been amazed by (and jealous of) people who just are who they are — no trying, no pretending. I am still trying to figure out how to just be.
Thanks for reading this edition of To Be Tender. If anything from this edition resonated with you, let me know in the comments! I’d love to hear your thoughts.
As always, you can find me rambling about books over on Instagram @catherineslibrary
See you next time, sweet friends. Stay tender <3
Loved this so much, thank you for sharing!! 🩷