I am on the autism spectrum. April is Autism Awareness Month, and April 2nd is Autism Awareness Day. Given the occasion, I’d like to take a moment to talk about my experiences. Obviously this is a sensitive topic; my story contains mentions of depression and mental health, just so you know.
For most children in the U.S., the only kind of mental health screening that is actually guaranteed is grades in school. Throughout elementary and middle school, I never fell below a C on my report cards. I was regarded to be “smart”, so there was no way I could ever be even considered for the possibility. It just had never crossed anyone’s mind. In fact, I was in my school district’s “gifted and talented” or “GT” program. Even still, I knew I was just a little different than my peers, but I didn’t think it would be anything more than just different types of personalities.
Why did I think this? Well, I knew I was really shy and just couldn’t talk like the others could. I could also tell that I had a different sense of humor. I knew I was different emotionally as well. I was frequently asked why I was sad, because apparently I was always frowning. I was okay with all that, though. I was okay with being slightly different, because all that really mattered was performance in school. In elementary and early middle school, I was absolutely killing it. I reveled in being seen as the “smart” kid, and even looked down my nose at the students who couldn’t do their work.
Like I said, I was in the “gifted and talented” program in my school district and received constant praise from the adults in my life. As life and school moved on, I think I started to notice my quirks with more frequency. Cliques and social groups start to form in middle school, and I gladly self-identified as a “nerd”. But again, that word had no negative connotation to me, because all that mattered was grades and receiving more praise.
School getting marginally more difficult had an adverse effect on my mental health. I started getting different diagnoses, like OCD and Anxiety Disorder, and I did start receiving some proper help for them. That was all well and good, but I had a long way to go before grades would no longer be my only modus operandi. I was never entirely friend-less, but I couldn’t really make new friends. I wasn’t capable of it, and the idea of “popularity” seemed like a distraction anyway.
I remember at some point in middle school thinking to myself “What if there is some kind of… secondary autism?”. (This is an actual thought I had, verbatim, that I remember distinctly.) I dismissed this thought, because my understanding of psychiatric diagnoses at the time was limited to you either do or don’t have a disorder. Even in that era, autism was increasingly understood as a spectrum of patterns and effects that will have very different presences in different people. But I had no way of knowing that – my only perception of autism was the stereotypes in media and the use of the word on the internet as an insult.
I was not diagnosed until well into my adolescence. This is very late – typically, diagnoses of Autism Spectrum Disorder can reliably be made from age 2 to 4. In a lot of ways, I exhibit exceptions to a lot of patterns used to diagnose autistic people, so I went undiagnosed for most of my life. But I think part of me knew.
The “gifted child” stereotype has a reputation for breaking down in high school, and it definitely did for me. My mental health deteriorated into depression as school was no longer a cakewalk and the constant praise from parents and adults turned into occasional disappointment and even anger. Only after at least one major mental health episode which resulted in a psychiatric hospitalization did anyone in the sphere of my mental health treatment point out that I should probably be screened for autism.
Sure enough, I was tested and diagnosed with Autism Spectrum Disorder sometime around my 16th birthday. It made a lot of sense. It was news to me that it was actually called Autism Spectrum Disorder, and that there was such a thing as “high-functioning autism”, but I could definitely see how a handful of the patterns lined up with my life and my experience. The diagnosis was more than just a label, because with it I could actually get proper help with it, and later down the line, use resources for autistic people.
Because of the late diagnosis, I don’t consider it a fundamental part of my identity. I also do not consider myself disabled. I phrase it as “I have a disability, but I am not disabled.” I don’t wish to be judged on the basis that I am autistic, but I do appreciate when people respect my boundaries because they know what the autism spectrum actually is.
The biggest example I can give of a symptom of ASD is that I generally don’t want to be touched, especially in the chest area. I have a reputation in my family for giving “side hugs”, or hugs with just one arm. A large part of that may be the fact that I was born with a severe deformity and had a major, painful surgery to fix it, but it it still a boundary I have and one that I really want people to respect. (The surgery thing is a whole story that I am sure I will make another blog post about some other time).
Another common indicator is hyperfixations. No doubt, my hyperfixation in recent years is competitive Smash Bros., but I take care to not enthuse about it entirely unprompted. I also don’t determine my entire self-worth based on how good I am at the game, unlike some people. I think it is accurate to say that I have a hyperfixation for technology, as I really, really like knowing, observing, and beholding how video games and just computers in general actually work. I love watching reverse-engineering content. I think we really take for granted just how beautifully complex modern computers are. I do some hobbyist type of work with coding, and I am seeking a career in some form of computer science.
So, great, now that I know what’s actually up with me, how’s life been since the diagnosis?
Before I moved out, my mother got a bit complex-y about it, if that makes any sense. Even back then, I didn’t want the diagnosis to fundamentally change anything about how I conducted my life, but my mother had some weird ideas. For whatever reason, in 2017 a couple of shows and other media popped up with an autistic main character, namely ABC’s The Good Doctor and Netflix’s Atypical. I never really watched these shows, and I’m not qualified to talk about autistic representation in media, so I won’t – I bring them up because the popularity of these shows and my mother’s reaction to them gave her this grand idea that being autistic was popular. This borders on tokenism. At one point she even claimed that I was, quote, “the next step in human evolution”, which I rejected as sounding a tad too close to the Pandora’s Box of eugenics. It was difficult to navigate my mother’s enthusiasm for the diagnosis.
Luckily, in my small high school friend group, it made next to no difference. I told a handful of friends about it, one of whom was surprised that it was even possible to be diagnosed this late. But, just as I had hoped, nothing had really changed between us. It is just a footnote in the grand scheme of my friendships.
In the online and in-person communities I participate in, I don’t offer up the label unless it is asked or is relevant to a conversation. The label itself or what effects it has on me has never caused any issue. In fact, on at least one occasion it was brought up that there is a high concentration of neurodiverse people in one of these communities, so if anything I am more likely to get along because of it.
I don’t strongly engage with any autism-focused communities, online or otherwise, because again it is not a fundamental part of my identity. But still, I can recognize parts of myself when interacting with people that are more affected by autism.
I have been able to have access to some fantastic programs and resources for autistic people, and although I am very far from a typical autistic person, they have helped me navigate the neurotypical world with an approach that works for me in my adult life. I am very glad I did end up getting diagnosed. Otherwise, I am sure I would have been forced to enter conventional higher education and entered more mental health crises as a result.
All in all, while I wish I was diagnosed a lot sooner, I think I am navigating the adult world alright. I have the beginnings of a path to a career in computer science and/or information technology, whatever you want to call it. I think I can safely forget about my mom’s initial perception about it. At the end of the day, the diagnosis is just something to help me understand myself.