I don’t think anything took as much from me as the institutional failure to evaluate me for autism. This April, dubiously named “Autism Awareness month,” will be the first I’ll spend knowing that I’m autistic. I’m not looking forward to this year’s parade of false information filling social media, knowing what I do now about the toxic culture that hurts autistic people more than it helps.
I’m the eldest of two children. My sibling and I share many traits, and always have. Back in elementary school we were both feral little gremlins, so our parents had us tested for behavioral disorders. We came out with matching diagnoses of ADHD and epilepsy. Our treatment was conducted in tandem. We shared medication, appointments, and ostracism.
My sibling was assigned male, and I female. While that detail means little to us, since both of us are extremely gender apathetic, it’s important in understanding what happened next.
Receiving treatment for our conditions did little to improve our social lives. In seventh grade, I was pulled out of public education to explore education at home, sans the ruthless bullying. My sibling transferred to a charter school. Noting that my sibling’s behavior was still abnormal, the school administration had them undergo further psychological testing. In my ideal world, when my sibling’s results come back with an autism diagnosis, the doctors, who are also treating me, decide to test me as well.
Looking back, I still wonder if this was the point in my childhood where things might have gone differently.
I often daydream about what my life could have been. In this dreamy, idealistic hypothetical, the abuser who helped raise me is not in the picture. My sibling and I are taken to psychologists and neurologists at the first sign of dysfunction, instead of being force-fed naturopathic supplements that promised to make us normal. We get helpful diagnoses from a doctor who will not flee the country to escape being charged for tax fraud and experimenting on children (true story). We are treated early and effectively, with productive cognitive therapies and medication that doesn’t hurt to take.
The adult version of me who lives in this false reality is not suicidal. Well-intentioned self-esteem exercises do not bring zir to angry, dismayed tears. Ze doesn’t take eight medications daily, nor does ze block out twenty-three years of consciousness. Ze has funny stories about time spent with long-term friends.
Back in the real world, I contemplate the repercussions of my medical neglect. As a fat, disabled queer person, I experience these repercussions daily. When you're good at masking your trauma, you become a special kind of forgotten. That seems to be why doctors don’t evaluate assigned female children for autism at the same rate as assigned male children.
Nearly every mainstream “fact” about autism is heavily influenced by suspect propaganda and institutionalized medical sexism. It is often stated that autism is characterized by lack of empathy, niche obsessions, difficulty expressing emotions, and problems with communication. Using many of these symptoms as a metric, many organizations—most notably the pro-eugenics hate group, Autism $peaks—purport that there are more autistic boys than there are girls.
The reality is not that boys are more likely to be autistic; they’re just less likely to hide it. The different social expectations and gender roles assigned to boys and girls excuse those certain behaviors in disabled boys to a much greater degree than in girls. It would be a social death sentence for girls (or those perceived as girls) exhibiting the same behavior. Despite both me and my sibling identifying as genderless, my assigned sex afforded me stricter gender expectations than what they faced. The combination of assigned sex with basic personality differences resulted in a ‘masking’ of my symptoms. I have this in common with a lot of other people who, for gendered reasons, mimicked acceptable social behaviors. Of course, that doesn’t mean we mimicked them well.
Through my entire adolescence I would make friends, then get into these never-ending dysfunctional loops. Conflicts would ensue, followed by breakdowns, self-loathing, and then eventually ostracism and self-destruction. Autistic girls often grow up with critically poor self-image, tend to view themselves as disappointments and social failures, and believe that their problems are due to laziness or lack of discipline. To be autistic but have no idea what ‘neurodivergent’ means is slow torture, like being the frog in a pot of water who doesn’t know it’s about to be boiled alive. I grew up hating myself.
Today we have buzzwords to describe these experiences: Hyper-empathy. Executive dysfunction. Stims, fixations, and sensory overload. Back then, I didn’t know that there was more to autism than the most obvious traits exhibited in boys. These concepts characterize my existence presently; now, after I’ve lost fifteen years to confused hatred, wondering why my attempts to fit in were never good enough.
This goes beyond bullying, traumatized hallucinations, and entry-level sexism. Underdiagnosing autism goes into every day I spent sobbing in a supervisor’s office because I just couldn’t figure out why everything was so much harder for me than for my coworkers. It's in the background of every failed attempt, dropped class, every meltdown, every opportunity lost because my self-worth was in the toilet and I didn’t know how to fish it out. Eventually I didn’t want to fish it out. The effects of failing to diagnose people with autism based on slapdash assessments of their gender or genitals are life destroying. They are soul-crushing.
Do I think that my flowery fantasy is really what my existence would be like if I had received an autism diagnosis at the same time as my sibling did? Not particularly. But it would have saved me a few suicide attempts.
When someone finally suggested that I might be autistic, I was twenty-five years old. I spent that entire year making excuses for why I couldn’t be autistic, basing my rejection on sexist myths and misunderstandings, and citing flawed and shallow research to prove my point. Fighting the belief that I was just wrong, instead of the presence of a tangible influence affecting the way people responded to me, was not an easy battle. All my life, starting at seven years old, I’ve had suicidal meltdowns. I was broken inside, and I couldn’t figure out why, or how. You can’t fix what you don’t understand.
At what point did I realize that I didn’t have to hate myself? At what point in my childhood should I have realized I wasn't a failure, if given the tools to do so? What finally pushed me over the edge to acceptance and realization was a study discussing the interactions between PTSD and autism. To summarize, the symptoms of autism can be exacerbated by a traumatic experience. If the autistic person develops PTSD, the symptoms may be much more dramatic than those of a neurotypical person, especially if the trauma happened during childhood (as mine did).
After reading this paper, I was unsettled, and went to my mum. I knew I had complex PTSD due to the abuse I experienced, but couldn’t explain entirely the host of symptoms and difficulties I was facing. I asked her if I had always been “like this.” What did I mean by “like this?” Suicidal, awkward, embarrassed, ashamed, anxious, fearful.
“No,” she said. “You changed.” She said I used to be vivacious and imaginative and unapologetically weird. “You weren’t afraid of anything,” she remembered.
At that point, everything clicked in my head. The questions that I’d been rationalizing out of existence came back in full force. The more I read, the more everything made sense. My sibling said they always had wondered why I wasn’t diagnosed like they were. My doctors weren’t particularly surprised when I asked about being evaluated.
That wasn’t the end of the journey though. Accepting that I’m autistic goes beyond looking resentfully over my shoulder at my history and trying to put paste on the crumbling infrastructure of my sanity.
Accepting that I’m autistic means accepting myself.
In the months after I came to the sloppy, painful conclusion about the diagnosis I’ve been missing my entire life, I have struggled to unwrite some of the internal dialogue painting me as a worthless, unsuccessful person who is incompatible with even the weirdest corners of society. Instead of thinking that I might as well die, I make myself think about how other autistic and neurodivergent people have become a beautiful centerpiece in my social life.
Hilariously, myself, my best friend, and my life partner are all autistic lesbians. Experiencing our relationships through the lens of autistic joy is part of what has kept us so closely bonded after over a decade of friendship. We don’t judge each other for stims, even if they’re annoying, or meltdowns, even if they’re inconvenient. Reuniting our diagnoses has also improved my relationship with my sibling, which suffered throughout our childhood due to complex environmental issues. The four of us, along with our many neurodiverse friends and partners, relish in the unique way autism allows us to perceive the world.
It’s hard to mourn my lost relationships with neurotypicals when I think of how viscerally important my bonds are when formed with other neurodivergent folks.
I don’t really believe in New Year’s resolutions, but after my best friend practically begged me to stop constantly beating myself down, I made one this year. I said in 2018 I’d change the language I used to talk about myself. Less than two weeks later, someone told me I had a cute face and I responded automatically with: “Thanks, I’m hideous.” It’s a long process to unlearn these habits, but I’m undoing the knots thread-by-thread.
Autistic-positivity doesn’t stop ableism from affecting my life, and others as well. I used to love theatre, but I stopped going because I can’t even do minimalist self-soothing gestures to deal with chronic pain without some older white patrons talking loudly about how weird I look. Despite my attempts to be friendly and approachable, everyone at my former workplace practically broke into a run to escape having a conversation with me. That makes me concerned about my ability to mesh with future work environments. Finally, we can’t forget the autistic children being tortured by their parents to make them less autistic. Whether it's through bleach enemas or ABA “therapy,” these “solutions” are more likely to give children PTSD than to “cure” them. Autism has no cure.
I’m glad that there isn’t a cure. Now I know that I’ve never been broken, just different. I don’t deserve the hate I’ve been piling on myself since I was laying on my mother’s floor at seven years old, screaming that I wanted to die. I don’t need to feel like I have to change for people anymore. Maybe if I’d known more about what autism was, and how to best manage life with it (and PTSD, and Bipolar II, and…) I would have some pleasant childhood memories. As it is, what little I remember of my life is mostly marked in traumatic milestones. It’s okay, though. I mean, it’s not okay, but I will be okay. I’ve picked up the tools I need, the ones I had to forge myself because they were never handed to me. Going forward I will live my life authentically as an autistic person.
This April, don’t just be “aware” of autism. Make sure you accept it, too.
Jem Zero is a disabled queer person with an art degree and poor volume control. By day, ze masquerades around the local community college disguised as a mild-mannered accounting major. All other times ze can be found hissing at technology or having an existential crisis about the vastness of space and sea. Zir writing and art can be found on zir website and facebook.