An Ongoing Post-Mortem Of Pre-Diagnosis Life
|Jul 22 2018||Public post|
ONE CONTINUING OBSTACLE for me is the question of trying to look back over four decades to see if I can find signs of being autistic, or signs of how no one ever noticed that I was. It didn’t help when exactly the wrong person bluntly questioned my contention that I never knew there were diagnosable reasons behind difficulties I’ve had.
I’ve talked a little bit about related things here, such as how unknowingly engaging in lifelong masking could have led to autistic burnout (my “masking leaves psychic residue akin to arterial plaque that increass the risk of a kind of autistic stroke” theory). I’ve also talked about how, pre-diagnosis, use of a toolkit meant for introverts could have helped me mitigate some of the social stresses of unknowingly being autistic.
During a particularly stressful day last week, as I was rocking back and forth against a railing waiting for public transit, I had further thoughts about how being autistic without knowing it could have played out in my interactions with the world around me. These thoughts aren’t especially built out or built up, but I do think they add small points of understanding when it comes to trying to decode my past.
There’s a lot of discussion about autistic people’s penchant for focused and obsessive interests. There are two periods of time in my life during which this was especially true for me, in ways that secretly and happenstantially might have been providing outlets for those aspects of being autistic.
I first got online in 1993, via a dialup gopher server run by a local public library in upstate New York. Through it (30-minutes at a time, because that’s when it would disconnect on you), because of an article in the debut issue of Wired magazine, I ended up on an internet-connected bulletin board system out of New York City called Mindvox.
Descriptors of MindVox in that Wikipedia article generally are true. “In many ways MindVox was a harder, edgier, New York incarnation of the WELL.” “Members who met through the conferences often became acquainted in person, either on their own, or through what were termed ‘VoxMeats’.” “MindVox was deeply connected to the emerging non-academic hacker culture and ideas about the potentials of cyberspace.”
All of these things made for an online space perfect not just for hyperfocused and obsessive interests but a space both online and off that tended to accumulate a large variety of awkward or quirky behavior by the standards of the larger, normative world. There were losers and professionals, extroverts and introverts, alliances and enemies, and generally speaking most everyone was building for themselves a social persona that genuinely reflected who they were (or thought they were, or were trying to be), come what may. You meshed with others, or clashed with others, essentially on your own terms.
This is not always true for autistic people navigating the allistic world, and I do wonder now if this outlet for individuality (the mid-90s internet was rife with a libertarian attitude) in some ways meant that for the mid- to late-90s much of my social communication both online and off required little to no masking. I wouldn’t have been aware of it in those terms at the time, and indeed my entire point is that this is only occuring to me now, but during this period as far as the outside world was concerned I was being who I was and that was that.
In no way did this outlet preclude all of the other struggles that we now know at least in part were due to other aspects of unknowingly being autistic (and therefore, because unknowing, all of it was going unexamine and unaddressed). All of the things that I’m now trying to mitigate or nevigate when it comes to employment, for example, were the case back then, too. Having an authentic outlet for one aspect of being autistic didn’t magically solve the difficulties I was experiencing elsewhere. But I do wonder today if things would hae been even worse for me in the 90s without that outlet.
Getting online in the early 90s also meant experiencing the early days of the web, which meant that easy access to other interests increased. While pre-web I was active on Usenet groups such as alt.tv.twin-peaks, the arrival of the web rapidly meant that pop culture discussion not only was everywhere but was easier to find and to navigate. Even some producers of pop culture latched on relatively early, which was how I ended up on Fox’s official website and discussion forums for Firefly, and then on the now-defunct Whedonesque, in 2002. I would spend the next decade firmly entrenched in Whedon fandom. Firefly fandom, especially, was home.
Here, again, we have an environment where hyperfocus and obsessive interest run rampant. Here, again, we have a social scene that both online and off (through conventions) tended toward acceptance of the allegedly quirky and awkward. During my time in this fandom, I went from being active in these discussion forums to creating (or co-creating) probably a dozen different websites that helped fans find where a movie was still in release, curated fan-recorded audio commentaries, followed Firefly DVDs into space, mocked ill-conceived fan campaigns to “buy” the rights to a TV show, tracked information about an unproduced movie script, ran fan-directed social media campaigns for a TV show that had almost no support from the network, and more. Hyperfocus? I had it. Obsessive interests? I had it. I also had yet another outlet for being who I was, and being accepted for who I was.
Like my time as part of MindVox, I do look at my time in fandom as another period in which perhaps I was not subject to the stresses of masking, at least in the realms of social communication and my issues with performance distress. At the same time, the later years of my fandom period were exactly the years in which I started to utilize a toolkit meant for introverts to help manage certain stresses. Yes, I could attend large, sprawling, crowded events such as San Diego Comic-Con, but only if I had my own hotel room, shared with no one else, so that there always would be a place to which I could escape. I’d often sit as far toward the back of panel rooms as I could, unless I was sitting with friends, who were a kind of buffer.
During the middle of my fandom period, there was something else happening, too. I spent three years covering local Portland politics, an experiment in what came to be called, at the time, “stand-alone journalism”. It was just me, my self-hosted website, and a lot of lurking around the edges of meetings and protests and public discussions. Arguably this was the highpoint for hyperfocus and obsessive interest. My experience in committing acts of journalism was that people tended to leave you be. I didn’t have to interact. I just had to watch, listen, take notes, and then go home to write things up. While there was a greast deal of freedom to be who I was, there was also a lot of exposure to the most annoying, aggressive, and venal attitudes of which people are capable. After three years, I was burned out on subjecting myself to that. The obsessive interest vanished into thin air.
In the end, then, I do wonder if in some ways my pre-diagnosis life being unknowingly autistic could have been worse. I could have stumbled into not a single outlet for any parts of my particular autistic feature set. I could have never found any online or offline spaces where what the normative world considered quirky or awkward were accepted in fact as normal.
Having those outlets did not address any of the other parts of my particular autistic feature set. All of the things that gave me trouble in finding, securing, and keeping employment continued unabated and, perhaps worse, unseen, helping to generate a resume that to this day does not instill a great deal of confidence in prospective employers.
Having those outlets, however, did provide me with something of a stable piece of ground to stand on when it came to letting me be myself. Those two decades from MindVox to Whedon fandom arguably would have been better had I known I was autistic, at least in terms of having had the opportunity to chase down those other trouble spots. Without those oases, however, who knows where being unknowingly autistic would have left me.
That doesn’t do much of anything for me today, but I suppose it’s useful to try to figure out what it might have done for me then?