Today, I am following up on yesterday’s Part 1 of this two-part series on my diagnosis journey, where I talked about the (relatively) straightforward and direct path from deciding to pursue assessment to actually receiving my diagnosis. In this second part, I want to write about the much longer, more emotional, and trickier portion of that process: how I first recognized myself and my differences as being on the autism spectrum, how I came to terms with and accepted the label for myself definitively, and eventually how I decided it was time to invest the time, money, and emotional energy in making that “official”.
I could fill pages (and I did--as part of my diagnostic process) with the stories of my peculiarities from early childhood up through young and now not-so-young adulthood. [I’m 31 at the time of writing.] For the sake of making all that blog-sized (and saving some content for later), I’ll put it this way: I always knew that I was “a bit different”. I remember my first day of Kindergarten (I did not attend pre-school, so this was more or less my first experience of regular contact with people outside of my immediate family) like it was yesterday.
I was bewildered and genuinely convinced that there was something wrong with the other children. They seemed to be some kind of alien species, or maybe the majority of them were just developmentally delayed (the irony!). I am not kidding here: I remember actively puzzling over which kids in my class were somehow neurodevelopmentally “different” from the other kids because they all just seemed so foreign to me. I couldn’t connect with any of them like I connected to my own (older) family members.
Without trying to armchair diagnose anybody or throw people under the bus, I will just state that I strongly suspect that the majority (if not entirety) of my immediate family is also autistic, and I can point to several extended family members who are almost certainly on the spectrum as well. And on top of this, my immediate family members are all highly educated (all have terminal degrees in their fields), and many of my extended family members have been as well. I was raised in an environment of, well, pure arrogance.
When I went out into the world and noticed that “everybody else” seemed different from me and my family, it never occurred to me that there might be something weird or wrong or disadvantageous about us. We were the “smart” ones, everybody else was somehow inferior. Ew, ew, ew. It’s gross, but I have to acknowledge it here for any of my process of unlearning this and accepting myself to make any sense at all.
I’ll also state what should be pretty obvious at this point: my immediate family and I also experienced a great deal of privilege across many axes (not just the educational privilege, but the economic privilege that comes with it, the racial privilege that realistically made all of it possible, and other axes of privilege I have yet to even consider I’m sure).
So I can fast-forward through elementary, middle, and high school, since they all followed more or less this same theme: I’m really different, that’s because I’m super smart like my whole family, look how smart I am, that’s why I don’t have any friends, I guess I’m not sure why I’m sick and miserable all the time and trip over my own feet but it’s okay because I’m really smart, wow I can’t wait to get out of this sad little town and go to a fancy college where I’ll be surrounded by other cool, smart people. It should be no surprise at all that I didn’t successfully make and retain really any friends from this time period. If you’re cringing and you kind of hate me at this point, that’s cool. We’re on the same page, then.
Spoiler: I did end up going to a small but “fancy” little college just for nerds like me! I studied mathematics because I was good at it and was (somehow?) led to believe that I would be unemployable if I studied anything other than physics (and I was terrible at physics, but I thought maybe math was close enough?). A big part of the school’s marketing material and attraction had to do with their students being “quirky” (hmm…) and extremely trustworthy (double hmm…), like “timed, closed-book, take-home exams” trustworthy. In hindsight, I feel like they might as well have put up a big neon sign saying “Autistics Welcome!!!”
Ironically, my first few days of college were not so different from my first few days of Kindergarten. I looked around, thought “wow all these people are really weird!!”, and genuinely wondered if some of them might be neurologically different from the average person. I was sort of perplexed by this callback-to-Kindergarten experience because… this was a school for people who had performed really, really well academically in high school. So… I had no mental model to explain what I was witnessing. I had virtually zero understanding of the autism spectrum at the time.
Glossing over four of the most transformative years of my life: I survived college largely by taking the exact opposite strategy I had done in high school: I had watched what “cool” and “popular” people looked and acted like, and I could see that many of my peers were fumbly and clueless like me, so I did my best approximation of “cool” and “popular” while making sure never to hang out with anyone who seemed remotely neurotypical. It was sort of a “I don’t have to outrun the bear, I just have to outrun you” strategy, and I can tell you right now it did not work very well for me. I approached graduation in a panic having built (again) no real lasting relationships or plans for the future beyond, “Uhh… graduate school? I guess? What’s the next step after college? When do I do the thing where I just make a bunch of money like you told me I could do with this degree and then I can relax and spend time with animals? Help?? Structure??”
On a full-blown whim, I took a high-paying, high-stress job and moved to the downtown area of a very big city. I was in such a perpetual state of sensory and social overwhelm (and drinking constantly to handle it) that I felt like my life was such a brutal rollercoaster that I couldn’t even keep my eyes open. I experienced one assault and/or dangerous situation after another, had lost all sense of what I was trying to do beyond stay alive, and on a regular basis wondered how the heck I had gotten on this ride and when was I going to be able to get off???
Again, in hindsight, it’s easier to understand how and why I made the decisions I did, given that I was constantly trying to convince myself that: 1) I was just like everybody else, just maybe somehow smarter or better in some way, and 2) life is basically fundamentally fair, structured, orderly, makes sense, etc. I was soaked in privilege and genuinely believed that if I just took things at face value and followed the steps in front of me, I would eventually come out “ahead”. Or something. I had basically no clue that what made me different actually made me significantly disabled in some contexts where others would not struggle at all, and that life (at least in the time and place where I live) is actually pretty horrifyingly unkind to people who are “different”. Virtually anyone growing up with less privilege than I did would already have known this, and I was mortified when I finally came to that realization and discovered that I was several hundred years late to the “the system is pretty fucked” party.
Oh, and no, I’m not “better” or “smarter” (just in case it seemed like I might still think that), at all, not even a little bit. I have a particular range of skills and deficits (like everybody else) and some of my skills are highly exploitable… as are some of my deficits. Again, my autism discovery puts all of that into sharp focus. Highly skilled in pattern-recognition? Lucrative! Completely incapable of accurately assessing the motives of others? Suuuuper dangerous!
As I started to hit rock bottom emotionally and still not a single person in my life had said anything to me about autism, I turned to some of the more “out there” ideas from the New Age world, pop psychology, and elsewhere. I continued to cling to the narrative that I was not just different but somehow special or better because I knew in my heart that whatever made me different also came with unique gifts that I could see others didn’t have. I missed the glaringly obvious deficits (or didn’t want to admit them--convincing myself that some day I would learn how to do these basic tasks and that maybe I just hadn’t really tried yet).
I resonated with the notions of the “highly sensitive person” and “empath” and all kinds of other things. The concept of autism crossed my radar, but only in its very stereotypical form and as a kind of caricatured “opposite of me” context. Autistic people have no empathy--I have tons of empathy! I ignored the voices of autistic adults saying “actually, we have a lot of empathy… neurotypical people just don’t recognize it in us.” I similarly ignored the people telling me that I came across as lacking empathy. And on and on.
And then the meltdowns took over. In the midst of what was not my first (and would not be my last) severely unhealthy romantic relationship, I started to have such severe meltdowns that I would lose the ability to speak. I remember vividly the first day it happened, I could feel my tongue refusing to obey my mental commands, and I could hear the noises coming out of my mouth and throat. The thought crossed my mind that this is what some of the nonverbal autistic children in the horseback riding therapy program I used to volunteer with sounded like… and it was terrifying. It must have been terrifying for them, too.
It wasn’t until even my New Age specialness crutch fell away that I had to start facing the truth: there was something really, seriously, neurologically different about me, and it wasn’t all good. Somewhere in there I started questioning everything, including the caricatures I had read about autism, and I came up somewhat dumbfounded. What people were describing (especially women) sounded exactly like my experience. And I came up off the charts on any online quiz I could find. But I still struggled to accept that this was autism. I had a lot of learning to do. And so I began reading.
I read book after book and blog after blog until I could feel the bridge forming. I could start to connect all of my own experiences of being different with the experiences I was reading about, and I remember the thought finally forming in my mind that: if what I’m reading about here doesn’t describe me, doesn’t apply to me, I can’t think of a single person I know that it would apply to. That’s when I knew. And that’s when I decided that no matter what anybody said to me, I knew I was autistic, and I wasn’t going to bother with the time and energy and money to get diagnosed because I didn’t think I would ever need it.
And then I… forgot. I just moved on with my life and completely ignored this critical part of my identity for nearly two years. I focused on my work, my relationships, my health, my spirituality, and conveniently neglected to consider the impact that being autistic would have on all of the above. And so once again, I tumbled headfirst into “completely unexpected” crises and this time when I came face-to-face with a reminder that my neurology is not like other people’s, I accepted help. I accepted the reality that I am autistic, that this is not strictly some kind of “superpower” but actually in many ways a huge challenge in my life, even as it comes with gifts. I sought diagnosis as a way to solidify that for myself: so I would not run from this Shadow again.
I dealt with (and still deal with) many individuals, including (and especially) trained mental health professionals who mock even the suggestion that I could be non-neurotypical (I’ve learned not to bother trying to convince someone--I just keep them at arm’s length, or further, if they’re so confused about what autism looks like that they can’t recognize it in me). I’ve come to intimately recognize the two-pronged cost that masking has had on my life -- the “spoon depletion” from the masking itself and the way it has set me up to be disbelieved when I need support the most.
And I’ve had some of the most beautiful recognition and validation that any autistic person could hope for, from many dear friends. This was a long and heavy (and frankly, kind of awkward) ramble of a post for today, so I will leave it on this sweet note. One of my friends, someone I dearly admire, happens to be a (neurotypical) parent of an autistic child. She was one of the first people I told, and I held my breath because I knew that there can sometimes be animosity between “autism moms” and adult autistics (the kind, like me, who often get mocked when we even suggest there might be something different about us…). I was braced for suspicion, doubt, unfair comparisons, and mostly I just hoped she would still respect me even if she didn’t believe me. Her response was the sweetest and gentlest I could have imagined: “I actually already knew this about you.”
Today, if you’re doubting yourself, if you’re stuck in a rollercoaster place or you’re struggling to embrace or even accept any labels or language for yourself, I hope you give yourself this level of tenderness and care. You already know who you are. And that’s enough.
Some pertinent though eclectic references
Intersecting Axes of Privilege, Domination, and Oppression and some other terminology
The Highly Sensitive Person -- Elaine Aron's website
Reddit conversation about the connection between Aron's "HSP" and autism (particularly in women, or how it often shows up in women, though it can show up in a wide range of ways across a wide range of genders)
How old were you when you realized you saw the world differently VS when you found out you were Autistic? A relevant question posed by Neurodivergent Rebel
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