How I felt, suspected, dismissed, rediscovered, and accepted(?) Autism.
There’s an experience and state of being that I’ve had my whole life that aligns really well with what some folks refer to as “Wrong Planet Syndrome”. I only learned it had a name a few months ago and that it is apparently a common and persistent feeling amongst people on the spectrum. As a youth I would interrogate why I felt this way but couldn’t figure it out. At different times I found different reasons to dismiss and suppress the feeling. Maybe it’s some manifestation of arrogance. Maybe it’s just typical teenage angst, or because I’m an “old soul”, more cerebral, a deep thinker, generally anxious, or maybe I’m like a covert vulnerable narcissist. None of those conclusions actually ever got rid of the feeling or the the distress. It is telling that Disney’s animated movie Hercules and the WB/CW show Smallville resonated with me so profoundly. I felt like they were telling my story. Since I was a kid I’ve felt and knew that something was wrong with (vasty different about) me. I didn’t know what it was but I’ve directed so much of my energy towards making sure no one ever noticed or realized it. I’d show them instead how clever, talented, funny, intelligent, capable, resilient I am and can be. Prove my worth and never be a drain.
In college, before I ever sought any diagnosis, I had a few brushes with confronting what I wanted to ignore. One classmate saw a page of my notebook during a sociology class and said my ADHD was obvious. We both laughed it off. I was casually hanging out with two friends and it turned into a very probing conversation about me being so guarded. As confused as I was by how the conversation had even evolved to this subject, I was much more appalled that they were perceiving this. Another classmate, who has Asperger’s* herself, asked me if I had it. No idea why but I deflected with humor and flirting. A roommate, commenting on the lack of variety in my wardrobe, joked about me having Asperger’s. We both laughed. During my abnormal psychology course, where we were studying the DSM, I wondered if I actually did have it. I ask the on campus therapist I was seeing at the time about it. They said that it’s common for a psych student to see themselves or their friends in the DSM and that I didn’t have Asperger’s. I also suspected that’s what was going on and was happy to not be.
Some time after college I interviewed for a behavior analyst role at an autism treatment center. Grateful that I didn’t get an offer until many months later after I already had a job elsewhere. The role involved employing ABA and working with cases that were “severe” and “profound”. Some things about it seemed cruel and abusive.
As an educator I got (acquainted with the subject again since I had students with sensory processing disorders, developmental delays, and a few learning disorders. Some of these things I needed to reeducate myself about and others I didn’t even know existed. Did I have have a sensory processing disorder? Is that why I have trouble reading or find some voices to be dreadful? Is it misophonia? I also gain an understanding of autism that’s a bit beyond the surface. Some of the stuff is relatable but not enough made sense to or matched up with my life. I think to myself, well if it’s a spectrum then I guess we all have some amount of these traits to some degree.
A few years ago, my old college roommate’s therapist suspects that he’s Autistic. That leads to learning about the online screeners that have been developed. I take them and only ever score 1-2 points below or above the thresholds. Many of the questions don’t make sense, are too vague, and don’t consider context. I’m a curious person but I actually don’t want to be Autistic. I conclude that I’m just so intelligent and creative that I am bound to be a bit odd and that’s all it was. All the great visionaries and geniuses are known to be lacking in people skills.
Summer 2023, my therapist of 5 years delivers a screener. I didn’t even realize it was happening until the last 2 questions. He says he suspects I have Autism and that he first suspected it a year prior. He recommends I get a formal diagnosis. I investigate and decided not to because of the time and cost. Self knowledge would be fine enough. But because of ongoing issues at work and life, he recommends and pushes formal diagnosis again. Something about accommodations and accepting limitations. I go on to book the appointment. While I wait for the appointment I also take an even deeper look at and learn about Autism beyond the surface level, classical manifestation. It becomes more clear that this likely describes me. I get an official ASD Level 1* diagnosis and I realize that I really need to take my neurodivergence more seriously.
If I had stopped at self diagnosis I likely would’ve minimized or discounted it. Despite the months of reflection and research I’ve done and the conclusions of two professionals, I still occasionally have doubts and wonder if this diagnosis is accurate. Because my impairments are not as apparent or severe as others, and because I am so accustomed to struggle and suffering I am not sure how to judge my experiences. It seems like there are some discrepancies between what I thought the neuro majority was experiencing and what actually happens. It’s been a lot of work to figure this out. I’m still figuring it out.
*In the DSM-IV Asperger’s was categorized as separate from, though related to, Autism. In the DSM V, some labels were reorganized under the umbrella of Autism Spectrum Disorder and Levels 1, 2, & 3 indicate the level of support the person would need. Many people who would have been considered to have Aspergers are now considered Autism Level 1. There is still much disagreement and conversation about this decision.