Let me address the asterisk in the title: at the current moment, I have yet to be diagnosed with autism. I have a great degree of certainty that I have autism, due to a variety of factors in which I’ll discuss in this article, but I do not have a diagnosis due to my current time and money situation (it’s not easy being a student after all). So, what I will be referring to in this article is technically better described as “a set of eccentricities in the way I process and communicate, particularly with regard to emotions, that has changed the way I interact with people.” That definition is strongly in line with many of symptoms and definitions of autism, so I will be calling that “set of eccentricities” autism.
Autism, officially Autism Spectrum Disorder (ASD), is generally diagnosed in childhood. In particular, from the “Diagnostic and Statistical Manual of Mental Disorders, 5th Edition” (DSM-5), one of the key criteria for diagnosis is the presence of symptoms “in the early developmental period.” The symptoms themselves are incredibly varied, and manifest in ways so complex and different from one individual to the next that I could not properly do justice for myself. However, individuals with autism tend to express deficits in social-emotional reciprocity, conversational behaviors, and developing relationships when compared to their neurotypical counterparts. Additionally, individuals with autism may exhibit repetitive motion, an insistence on sameness, hyper-fixations, and unusual reactivity to sensory input, again compared to their neurotypical counterparts. It’s important to address a common misconception: ASD is not an intellectual disability but rather classified as a communication disorder. This is all from the DSM-5.
Early childhood
My early childhood, though far from extraordinary, was also fairly atypical compared to my peers, as I would come to learn. Throughout elementary school, I was generally a good student. I was fairly quiet and smart. I did all my work and never really struggled with anything in particular. I had a few friends, but in general never really talked to most kids. Throughout elementary school, I was constantly selected for gifted programs, once even being invited to a private school. Unfortunately, for that opportunity, as well as for my opportunities to make friends, I also moved around a fair bit. In total, between K-6, I moved three times, staying at any elementary school no longer than three years at a time. I also had access to a computer this whole time, and generally took a strong interest to it. I became fairly skilled at navigating computers and would put hundreds, if not thousands of hours into a select few video games. For where I lived during the time I grew up, computer gaming was far from a popular hobby for kids, and I stood generally alone compared to my peers’ Xboxes and Play Stations. This is also where I got into astrophysics, a field I knew I wanted to get into before my age reached double digits. Somewhat confusingly, I was really into roller coasters and water parks, but my face never really showed it. I was rather stoic when going down even the most intense of rides. Getting a bit more personal, I also had a bad habit of picking at scabs or getting incredibly excited while watching others play games, both things that I would be shamed out of doing around my parents as they’d joke about it, but I would continue to do in private.
If you are more familiar with autism, you may already recognize many of the warning signals that I now cringe at their obviousness. Unfortunately for me, I was not around people who were familiar with the complexities of autism. My lack of friends was likely chalked up to my school smarts and my family’s constant moving, which, while certainly exacerbated the problem, would not solely explain everything. My special interest in computers, computer gaming, astrophysics, and general academia was chalked up to me growing into the archetypal nerd, which makes sense until you realize this was used to describe a six-year-old kid. My other behaviors were likely ignored as mild concerns or eccentricities — a statement probably true in a vacuum but falters when considered in combination with everything else. My hyposensitivity to roller coasters and other attractions was also notable, especially for a young kid. I also never had the time to develop any long-term deep friendships during my elementary school years, which likely prevented the outward display of more serious communication deficits that I would come to learn of.
At the end of elementary school and going into middle school, I moved from my familiar environment of Phoenix, Arizona to middle-of-nowhere, Arkansas. The culture shock from this move only further exacerbated a difficulty in making friends. I sheepishly floated around between a few groups, rarely feeling like I could connect with anyone in particular due to the differences in my hobbies and interests. No one had heard of astrophysics, neither did any of my peers own a personal computer. The nerd archetype began to truly manifest in this Southern environment, where stereotypical school roles genuinely developed a la “Highschool Musical” style. I got really into reading through middle school, and continued to pour thousands of hours into what was once a small indie game, “Minecraft,” and an old-school shooter that none of my peers heard of known as “Team Fortress 2.” It got to the point where I’d make spreadsheets of stats and characteristics of different ingame items and statuses, for the fun of it. Inverse to my intense commitment to video games, Christmas always fell flat for me. Don’t get me wrong, I liked it, but I never reacted when opening presents. When a camera was pointed in my face, any reaction I did make was forced. It was also during this awkward middle school phase that I discovered my own sexuality. I also grew out my hair and dyed it in an area where that was not accepted for young boys to do so. Not anticipating the religious hostility I would face from most of my peers, I responded not with meek self-censorship, but rather brazen pride, celebrating in a small party of myself alone. My birthdays were celebrated with similar attendance, and towards the end of this phase, I would begin to get into heated arguments with the few people I called friends, often ending in inexplicable silence from my part as I literally lost the ability to communicate. I would even get into fights with some of my family over misunderstandings or due to my nonadherence to social norms.
Again, the flags were everywhere. Social convention meant nothing to little me, resulting in me continuing to develop odd hobbies, interests, and taking up a social identity that I believe most neurotypical people would have been shamed out of years prior. But I was (and still am) incapable of understanding that social pressure. I never really felt shame, costing me social opportunities and development. In general, I didn’t react to things the same way other kids did. The few times I did manage to stick with friends and begin to develop social relationships would see the rise of various communication difficulties. I would consistently run into misunderstandings that led to frustration on both parties, which would then fall into an incapacitation of my ability to talk at all. Kids, for better or for worse, generally give in to social pressure, and especially in middle school, grow to be self-conscious. Making spreadsheets of a small video game is not something I’ve generally heard done by neurotypical people, especially kids in late elementary/middle school, only further adding to the list of flags. But because I could be described to a general nerdy stereotype, again these flags were ignored by school staff and family alike.
Highschool
The first half of high school, still in middle-of-nowhere, Arkansas, was much the same. I continued to either be oblivious or deny social norms, got into frequent misunderstandings with my friends, and in general just struggled communicatively and socially. I also picked up the horribly rigorous habit of popping the joints in my fingers, a habit I still engage in probably hourly to this day. I found myself bouncing my leg a lot, not out of anxiety or anything similar, but out of boredom. I gained a new hyper fixation in the form of the clarinet. Band for me was a slight escape, and I found it to be a great way to communicate emotions. I felt a strong bond with the music I both produced and got the chance to listen to and would become incredibly emotional. I would tear up during my own performance or when hearing others, a reaction I did not observe in my peers or parents attending their children’s performances. I also became really good at the clarinet respective to my school and region, though started falling off when compared to statewide prodigies. I occasionally got into administrative trouble despite teachers generally labeling me as a good kid in their classroom, especially regarding rules that I felt made little to no sense. At some point, I also realized I was somewhat resistant to pain. A tumble off of stairs that left me bleeding, a rather large shock from plugging in a fridge, or an entire table being dropped on my foot that led to my foot being put in a boot for a few weeks felt a lot less painful than I think others would have reacted to. One time, my mom said that she would trust me most to act rationally if she went into labor suddenly, a weird thing to tell a 13-year-old kid. I also got into politics a bit before my peers, and it was not the politics conducive to polite conversations in that part of the United States, further ostracizing myself.
The second half marked a stark change in my life once more. For the first time since elementary school, I changed school district again, but this time by choice. I went to the Arkansas School for Mathematics, Sciences, and the Arts (ASMSA), a similar residential school to Illinois Mathematics and Science Academy (a name likely familiar to the Illinois natives here). For those unfamiliar, it’s very similar to a college experience. Juniors and seniors live on campus, taking college courses with all the irregularities of a college schedule. Most notably, I was in an environment surrounded by people like me. Kids who were often socially ostracized, nerdy, and who wanted to be somewhere new. For the first time in my life, I actually made close friends, and also made my first real girlfriend. However, despite feeling closer to these people than ever, I still constantly ran into communication problems. I’d argue myself into silence. I never wanted to argue, I didn’t want to hurt these people. Increasingly, I realized that these arguments were due to my sense of unfairness, where I thought something was conducted unfairly and I wanted to speak up about it. At prom, I became very confused and disoriented. I felt wrong and as if I wasn’t enjoying or doing the things I was supposed to. I mostly sat at the table, refusing to dance, and after a while, even the table became too much, and I stepped outside, head-in-hands on concrete steps. I also got into deep trouble with the school’s administration over what I thought was unfair treatment of a friend, and got threatened with suspension, a punishment this school rarely ever had to threaten or hand out.
Early high school was much of the same things I had dealt with through my early childhood, just further developed and matured. Though the realization of resistance to pain was somewhat notable, an unusual hyposensitivity to that sensation. I believe my mom’s comment about trusting me the most if she went into labor was indicative of the difference in how I process stressful but non-social situations. What really became notable was late high school. For the first time, I proved to myself that my lack of friends growing up wasn’t out of some unwillingness to make friends, but rather social circumstance. It also allowed me to really begin to discover my inability to communicate properly. In particular, issues of justice and emotions were consistent blocks for me. My emotions were strong, a strength that sometimes felt misplaced. An intense sense of justice is a symptom that some people with autism exhibit and should have been another indicator that something was up. I also had an intense instance of overstimulation due to factors beyond emotion when I was at prom, a sensation I probably had not felt since early early childhood. My bouts of silence were also becoming a notable issue, in particular with my close friends and my first girlfriend. I can recall one time being silent with her in the room with me, unable to say anything. I desperately wanted to claw out the words but couldn’t, and resorted to tracing out the individual letters on her arm, which she eventually caught on to. But by this time, as I am turning 16, 17, and 18, the idea of autism as a diagnosis was increasingly out of the question. I had made it this far, so whatever made me, me, was dismissed as just an eccentricity of personality rather than a deficit in communication and socialization.
College
Early college saw a return to normalcy. I’ve met some great people since being here, but my social network is far from as developed as it was at ASMSA (I suspect there were probably a good number of undiagnosed individuals at that school). My first relationship continued to develop, however increasingly it became clear that I was not socially reciprocating her. Though I loved to share my hobbies and interests with her, I found it hard to reciprocate that love for her, even if intellectually, I did want to. Through early childhood to here, I also never really cared for fashion or makeup. It always felt forced, arbitrary, and so I always just wore a t-shirt and jeans, a hoodie slapped on if it got cold (this was possible in Arizona and Arkansas). I got in trouble with the school administration again, again related to a strong sense of justice in which I reacted to a situation disproportionately compared to my peers. I was explicitly called a “social justice warrior” by a school administrator, that was certainly interesting. I also take weird paths through the grass instead of the sidewalk. It’s not like I don’t know the sidewalks are designed for walking, but I just always found it troublesome.
If you’ve been waiting for the part where it finally clicks for me, here it is. January of my senior year of college, I finally realized that something might be up. Shortly after my breakup with my girlfriend, I took a class that was intro to special education, a requirement for my masters in secondary education. When we got to the section about ASD, I kept sending it to a close friend of mine, remarking to her how much I related to me. As I continued to read it, I had essentially sent her every major point of the section, saying “relatable.” It then hit me. Around the same time, a friend remarked how punctual I was about them showing up on time to a hangout. I was waiting for them at my driveway door to pick me up about 10 minutes before they said they’d pick me up, and the moment they pulled up, I was immediately out in the driveway, to which they made their comment. I had always been like this, and got upset and antsy when people showed up late or plans suddenly changed. But now I had something to tie it to: a strict adherence to plans, wording straight out of the DSM-5.
The last year and a half has been much of what this article has been: a retrospective on my entire life. I’d remember something that happened in my past, and then ask myself; “Wait a minute, is this something a normal kid would do?” More often than not, I found my answer to be an obvious no upon reflection. Since my discovery, I have been able to do so much. I know how to better regulate myself during more intense social interactions. At parties I can step out without feeling guilty, and know that with some time, I’ll be able to step in. I still run into misunderstandings with my friends, but I am now able to better navigate those situations, now knowing that I am interpreting the situation far differently than they may be. I’ve allowed myself to get into fashion while still recognizing its often-arbitrary nature in society, instead embracing it as an opportunity to express myself. Since my discovery, I have saturated myself in content from others with autism, and discovered that many of the random eccentricities I find myself doing are actually more common with autism. Weighted sleeping was a random fun one for me.
Closing thoughts
Today, I have accepted the likelihood of autism into my own personal narrative. I also learned that the older of my two younger siblings has suspected they might have autism as well. We talk about the youngest sibling, and suspect she is showing symptoms now. With this lens, I’ve also been able to guess that my dad and his brother might have it too, which would track with the genetic nature of ASD. I hope to start getting evaluated in the near future, so maybe you’ll hear from me one more time a fair while in the future, writing as an alumni, where I talk about what that was like.
If for some reason you actually read all this, you are probably thinking to yourself: “Why the hell would Nova publish something so personal and not at all related to news?” Well, one, its because I have no sense of self privacy (oversharing is another thing I’ve come to learn may be more common in those with autism). But two, I wanted to document the process of my own self-discovery, as well as list the symptoms and feelings I personally had growing up. All too often, this conversation is not had, and I believe by sharing my story, I may help someone come to a similar realization. I didn’t know so many things in my life could be well explained by the presence of autism, so many more than I listed even here. Even if it’s not autism, if you consistently have felt different from others in some way that is appreciable but yet somehow unmeasurable, I’d recommend giving something like the DSM-5 a read. If you don’t think that’s you, that’s also fine. At the very least, I hope I have equipped someone with the knowledge of what a disability might look like in a kid, and to use that knowledge to help that kid out.
