In a recent critique group, people reading my story with an autistic character didn’t understand how she was trying to hide her recent autism diagnosis from her friends. One reader said something to the effect of: “What’s the problem? Everyone has something these days. Kids aren’t ashamed of their neurodivergence.” Another said, “Wouldn’t others just know? I have an autistic kid and everyone knows he’s autistic.”
I know these people meant well, but I walked away from the group feeling gaslit about my own experiences as an autistic person. I felt angry. The reality is, I do feel afraid to tell some people about my diagnosis, because no, people have known me my whole life and do not know that I am autistic.
Like Sally Pla describes in her article Of Girls and Glass Boxes, people don’t always embrace my autism diagnosis. You don’t look autistic, you’re normal, you’re fine, there’s nothing wrong with you, people will say. Someone I grew up with even insisted, “You’re not autistic.” When I said I was diagnosed, he continued, “Who was the doctor that gave you that diagnosis? Have you gotten a second opinion?”
I know this response came from a place of love and care. Because his—like many people I know perceptions of autism are based on a very specific autistic experience. A very specific experience that has become a stereotype in the media, and incredibly limiting for understanding what autism
really is.
Whenever I’ve expressed struggles or issues, my mom has always insisted with the advice that’s always given her comfort: I’m afraid to tell you you’re very normal. She wasn’t wrong, but she wasn’t exactly fully right either. She wasn’t trying to downplay or invalidate my experiences, though I think this further reinforced to me this denial of my autism: that how I experienced the world was how everyone experienced the world. That the things I struggle with are things everyone struggles with.
I think this is why I never really wondered if I was autistic until college, why I was not sure until I hit burnout in adulthood. My family has been so incredibly supportive of me and created such a safe, positive, neurodivergency-friendly home. In our house, being different and being your own person was a good thing. It never even occurred to my parents that my stimming as a kid was anything more than cute. For me, this was such a positive experience growing up that gave me confidence in who I am, and pride in my autistic brain.
But it also means it’s been hard at times for me to identify as autistic, that when I do struggle, I invalidate myself and my needs. I tell myself that I shouldn’t struggle with those things because no one else seems to struggle in that way. I know that I have so much privilege, and have seen few direct consequences for disclosing my autism. But many autistic folks see concrete consequences to disclosing their condition, like author Elana K. Arnold’s experience with the insurance ramifications of disclosing her condition.
Many spectrum folks are reluctant to seek help or call themselves autistic because they desire so greatly to be perceived as “normal,” and see the label as yet another way they would be othered. I’ve had diagnosed students insist that they didn’t need DSS accommodations, which I can only speculate comes from a place of wanting to prove to others they can do it, that they don’t have to be treated differently because of their autism.
In the Amazon Prime show The Way We See It, we see the character Jack insist that he’s “not like” his other autistic roommates, using his job and other factors to point out his independence and functionality in a neurotypical society. He shows distress that his girlfriend discovered his autism, and expresses this disappointment to his aide that he thought he was masking well. I cried in this scene, because even though my autism grab bag is different than Jack’s, I deeply understand the sentiment of internal disappointment, realizing that I’ve ultimately failed to pass as neurotypical.
In many ways, I’ve seemed to succeed. I’ve masked so well that most people had no idea I was autistic, even myself. But in hitting adulthood, I suddenly hit roadblocks. A traditional workweek is an impossible marathon for me that I can’t seem to sustain for longer than a year. I watch my friends work full time, have committed D and D campaigns, plus energy to go on outings on the weekends, and am left baffled. How do they do it? How do they work, feed themselves, pay bills, have a social life and hobbies so consistently? How do they sustain their existence in this neurotypical world?
What feels strange about my experience—or maybe it’s not strange at all, it’s just that I’ve so rarely seen it represented that I doubt myself—is that I did so well in a neurotypical world for so long. Childhood, and even my late teens, posed minimal challenges for staying afloat in a neurotypical world. I exceed academic expectations, had a flourishing social life, and did well in many hobbies. But then I had my first difficult roommate in college, and entered the workforce, and moved out. Typical milestones of entering adulthood, but ones that quickly made clear my differences. That I had been an imposter this whole time.
While I am here, writing articles and books that openly discuss my autism, I know I also have great privilege. I have great privilege to work a job that works well with my skillset, with my unpredictable energy levels, and gives me flexibility to recharge. I get to be my own boss in many ways, and don’t have to carry fear of what an employer might think of my autism. While I have people in my life who don’t always understand my diagnosis, most people I’ve talked to have been incredibly supportive.
But there is a completely different possible timeline for my life: That my autism could risk my job, my insurance, my relationships, and my ability to feel safe as I navigate the world around me. I never grew up with the label thrust upon me, partitioning me away from my classmates or limiting how others perceived my functionality.
Every autistic person is going to carry their own complicated relationship with their autism, and their own stakes for what it means to be labelled as autistic. As the saying goes: you meet one autistic person, you meet one autistic person. The initial responses to my book Good Different indicate to me that I’m not the only one, especially the only female-identifying person, who has grown up largely passing as neurotypical—and hitting a crisis point when the mask stops working.
I think I still fume about this workshop experience because—for a minute I believed these people. I wondered: Are they right? Am I the only one still trying to figure out this autism thing? Is the rest of the world just OK with autism and I missed the memo? I’m angry that neurotypicals have so much power to determine what “normal functionality” looks like in everyday survival of society, and that I still seek—and often feel like I have to seek—their approval, to make sure my ideas “make sense.”
I’m angry that often when I’ve written autistic characters, neurotypical readers have found them “inconsistent” or “hard to relate to.” Maybe there’s a reason autistic authors have often opted to write neurotypical characters. Maybe it’s proven to be more sellable and “believable” than their own experience. I’m upset, wondering how many wonderful autistic stories we’re missing out on as a world because of neurotypical gatekeeping.
There are good things happening, but we still have so far to go for neurodivergent equality. But I’m excited that I’m being encouraged now to write autistic characters like Good Different’s Selah. I’m excited by all the great Actually Autistic books coming out in recent years, and shows like BBC’s A Kind of Spark showing authentic depictions of autistic lives (with autistic actors and crew!). I’m excited that I have the language now to write an article like this, language I didn’t have for the first twenty-some years of my life.
