I’m a self-diagnosed Autistic. There, I said the controversial statement. You can go ahead and gossip about me now.
It’s Autism awareness month and therefore, I wanted to discuss why I personally self-diagnosed myself as autistic. And no, before you ask, I’m not getting a formal assessment done.
Now, there’s a lot of discourse surrounding whether self-diagnosis is valid or not when looking at neurodiversity. Many people claim that it takes an official assessment to be able to claim that you’re autistic. From the outside, having a professional to diagnosis you is absolutely obvious, a no-brainer. Various types of medical professionals diagnose every other condition. Why would autism be any different? I used to think the same. However, after listening to more and more #actuallyautistic people, I began to understand why self-diagnosis is valid.
What is self-diagnosis?
Self-diagnosis is actually pretty simple. It’s the act of someone doing intensive research, doing self-assessments, reflecting on their experiences, and then coming to the realization that they are autistic. It is most often used for someone to better understand themselves and their experiences. Self-diagnosis is not medically recognized. Self-diagnosis will not get someone access to specialized therapies or resources. Therefore, self-diagnosis DOES NOT take away resources from those who have been formally diagnosed.
There’s a common sentiment that social media has made self-diagnosis seem “trendy.” But what if it’s not a trend, but a collective group coming to terms with who they are? After all, autism is classified as a developmental disorder. This means screening is primarily done as a child, however but 80% of afab (assigned female at birth) people remain undiagnosed at age 18. This makes sense, because up until 2012, women were largely ignored in scientific studies for autism. But today, research often still leaves identities such as race, ethnicity, gender identity, sexuality, and class out of studies. Because of the social expectations and nuances that happen between the overlaps in identity, there still isn’t a solid diagnostic criteria for everyone.
Entire generations have been left without answers
This makes for entire generations of people, particularly women and gender non-conforming autistic folx of color, that have been left without answers as to what’s wrong with them. So they turn to the internet for answers.
Then guess what they find? They find that nothing is wrong with them, they’ve just often been misdiagnosed with mental illnesses and given no support. They find the autistic community, who shares their experiences and welcomes self-diagnosed people warmly. They find support, coping mechanisms, recommendations, and friendship-and perhaps most importantly, an answer.
I was always considered different…
From the time I was in elementary school, I wondered what was wrong with me. There was some innate difference that I couldn’t quite explain, however I never really considered I was autistic. I knew what autism looked like-or at least thought I knew. I was always close friends with autistic people growing up-often preferring to hang out with them as opposed to neurotypical people. I understood them, and didn’t understand why others struggled. But I was also friends with the popular girls, I enjoyed dressing up, I was a relatively adventurous eater, and I made “eye-contact” well enough by staring at peoples’ foreheads. I was awkward, quiet, different, “old-souled,” but not neurodivergent.
At least, I thought. It was after another therapy session fell flat that I went searching. And in 2020, I had a lot of time to search. I wanted an explanation as to why I just didn’t get it. How did people understand their emotions well enough to put a name to them? How did everyone understand the unspoken rules of life? How did everyone feel so comfortable with small talk, or know when they could leave social interactions without seeming rude? In this new, adult phase of life, I was held to a higher standard of social etiquette, one that I couldn’t quite grasp. I had faked it my whole life, had studied what others did and then copied them. But here, it was harder to fake. I was making faux paus. At points, I was even told “normal people don’t say/ask that” and each time I was perplexed. I had slid by in childhood, allowed to sit in silence if I didn’t know what to do. However, in adulthood, I was struggling.
So I reflected on my child and young adult years. I read at a college level in first grade but struggled with complex math. I would get easily frustrated with my friends when they wouldn’t follow along the script I created when playing Littlest Pet Shop, or when the table wasn’t set exactly “right.” I oftentimes couldn’t name my emotions, instead just accepting the emotions offered to me. I didn’t understand that my parents conceived my tone as “attitude,” and eye movements as eye-rolling, something I adamantly denied having or doing. This led to “tantrums” during which I found it hard to verbalize and sometimes banged my head. The texture of foam and wool repulsed me to nausea. I only listened to one band on repeat for seven years, and I knew every single fact about them. Extended periods under fluorescent lights gave me headaches, causing me to down Tylenol every day when I came home from school. I was already diagnosed with EDS. I flap my hands over the cute Zoopals plate I put my lunch on. It all began to click. I took every test I could find and created a pamphlet of research for my therapist.
A formal diagnosis can be both a danger and a privilege
However, when I approached my therapist with my suspicions, I was told that they had, in fact, suspected I was neurodivergent but they couldn’t formally assess me. While they were willing to refer me to an assessment clinic, they warned it could come with some downsides. Aside from a formal assessment often dismissing and altogether missing signs of autism in women and afab people, there were other things to consider. It would take years of me being on a wait-list for me to even be seen. My insurance wouldn’t cover an assessment, so it would cost me several hundred dollars out of pocket. A formal diagnosis would make it more complicated, or even impossible, to move out of the country or join the military-as well as being a negative factor in any future custody battles, adoption/fostering, and being taken seriously in medical settings.
While I don’t care about many of those things, I care deeply about being taken seriously in healthcare. I have already experienced the gaslighting and abuse that stems from being a queer, afab, person of color in those settings. I don’t want to add one more layer of complexity to my identities that may or may not strip away my chances of getting care. I might sound like I’m spreading conspiracies, but my fears are justified. Covid proved that eugenics are alive and well. I don’t want to die because I was formally diagnosed as autistic. It’s not right that myself and others have to take this into consideration when getting diagnosed, but it’s a simple truth that medicine is biased. Therefore, to me, the cons outweigh any pros there are of a formal diagnosis.
In short, self-diagnosis serves as a pathway for people. They can stop traveling when they find an answer that feels right, or they can continue along the path to get a formal assessment. It’s a pathway to connection and community. Perhaps in the future, there will be enough scientific and social advancement that people decide to pursue formal diagnoses, but for now, we know ourselves and we know we’re autistic. And we certainly aren’t going anywhere.