Among the many questions prompted by a midlife autism diagnosis is some variation of “how did you go forty years without anyone noticing”—sometimes framed, as it once was for me by an actual social services professional, as an incredulous and insulting “did you really not know”.
It’s a question that looms large as my therapist and I slowly edge closer to a disability filing—a process which by necessity will have to be almost entirely narrative, since I lack any medical or psychological history of autism prior to 2016.
Since very early after my diagnosis, I explained it in part by describing what I termed society’s background radiation of conformity. When other people do not seem to be bothered by the things that bother you, it’s possible to interpret this not as being different, per se, but as everyone else in fact also being bothered by those things but simply “sucking it up” and not talking about it.
(There’s always—always—that quiet but nagging feeling in the back of your mind, though, that maybe you really are different, and these things really don’t bother other people, and maybe, after all, you are just a failure and a fuck-up.)
Another way to think about it is as a kind of unconscious regression toward the mean. We don’t make waves; we mimic the outward behavior we see in others. (Not so incidentally, this is why behaviorism is garbage.)
I’ve hit upon other, additional explanations for the decades-long delay. Recently, I’ve come to view them all as existing within a single umbrella I’ve termed masking agents.
For twenty years, until my father’s death from cancer, I smoked. The thing about smoking is that it is rife with mannerisms—the tamping of a fresh pack, the tapping of a cigarette out of the pack, the flicking of the lighter, the conversational gesturing with your cigarette hand. All of these act as hidden stims that mask other more natural stimming behavior I might have exhibited in another timeline. (After quitting, I kept my lighter for months, to light other people’s cigarettes—a stim I couldn’t stop.) Even talking to people while smoking veiled some social communication issues: you often don’t look people in the eyes while smoking because you turn your head so as not to exhale smoke in their faces.
For decades, my socializing nearly always involved drinking. For years after moving to Portland, I spent almost every night out at a bar. The thing about alcohol is that is disinhibits both behavior and judgment—internally for oneself and externally among others. Social communication is both smoothed over and social foibles forgiven if even noticed.
For ten years I was deeply embedded in a particular pop culture fandom, and the thing about geeky people is that social awkwardness simply isn’t seen as anything unusual. Spending time both online and off with quote-unquote weird or quirky people functions as a kind of hidden accommodation. The reason behind any given fans quirkiness effectively is irrelevant, and differences (or similarly-presenting differences) elided if not necessarily celebrated.
For some years I had something of a photography hobby, and it functioned as a very real sort of incidental hyperfocus (pun acknowledged), allowing me to navigate the enormous crowds of a comic book convention or a political demonstration. Looking through the lens of the camera for the perfect shot becomes an attention tunnel keeping the jostle and jumble of sensory and social input at bay.
For as long as I can remember, I’ve thought of myself as an introvert. While there are extroverted autistics, the toolkit I used as an introvert functioned as a set of happenstantial mitigations for what otherwise might have been recognized as my particular autistic featureset. I survived the onslaught of Comic-Con by having a hotel room to myself, and by having specific and particular locations around the Gaslamp District to which I could escape, where I felt comfortable and safe, and where there were people I knew who wouldn’t find it strange that I was lurking about.
These, then, seem to be the two key elements of ignorance in my pre-diagnosis narrative: an unconsciousregression toward the mean, and a repeated emergence of masking agents which kept any potential questions at bay.
Not long after my diagnosis—what I’d now argue in fact was too soon—I took a stab at a disability filing. I did it because I felt it was what was expected of me at the time, being as I’ve been, for decades, almost entirely family-dependent even if living on my own.
Diagnosed in late 2016, I almost immediately leapt to sign up with Vocational Rehabilitation, rather than attempting to do any kind of work on processing and contextualizing my diagnosis and what it meant both for the before-me and the after-me. Yes, I did a lot of writing about it, in public, but there were no outside eyes, no outside mind—meaning professional eyes and professional mind—helping me do that work.
All that speeding into a VocRehab process did (intake was in mid-2017; I’d been pushed into a job placement before I was ready by late-2017 only to have it implode by early-2018) was cause further damage and prompt an epic autistic burnout so severe it even sent me running from the nonprofit I’d helped launch and manage and which offered my life’s only real sense of joy or purpose. Even today, were I for some reason to be asked to return in some capacity, I know that I can’t.
The disability filing during this period of course failed. I didn’t understand enough about my life myself to be able to offer it up to judgment by the guardians of public benefits.
Nearly everything about the things I did after diagnosis only added fresh trauma to the trauma already visited upon my autistic brain through more than four decades of trying to navigate the world while not knowing I was autistic.
This fall it will be five years since my diagnosis. The realizations about what I call masking agents really only came together as that cohesive, singular idea in the past month. In no small way this is due to last year (in the midst of the pandemic no less) having finally found a therapist I could work with who was covered by my insurance.
(I’d spent in 2018 the last three months of the abortive job placement, and then also three months afterward, back in session with my diagnosing psychologist, because that cost was covered by VocRehab. I’d then proceeded to having no luck finding a therapist who had any conception that their normal checklists of psychotherapy might not necessarily be usable as-is with an autistic.)
The reality is that the therapist I have now tells me that it’s not unusual for people to go much longer than five years before being able to tackle a disability filing.
I’m not there yet.
There’s still work to do, and I know that if I’d tried to file again without the work I’ve now been able to do over the past year, it would have been just another denied claim. There’s no guarantee that it won’t be denied again anyway, when the time comes. The thing is, if it does, it won’t be because I wasn’t ready for it. The thing is, I’m not going to do it until I am.
There’s a financial imperative here, to be sure. What’s also sure is that I now know what I didn’t know before, because I simply could not find a compatible, insurance-covered therapist for years: I was never going to be able to do this myself, because I was never going to be able to do the necessary and prerequisite work by myself.
Even absent any eventual disability filing, the work needed to happen, and that work only just started, finally, just last year.
I spent forty-six years feeling like a failure and a fuck-up—made all the worse by friends and family who (out of love and affection, not malice) kept trying to tell me I was capable of so much, despite all the evidence to the contrary that showed how clearly I just…wasn’t.
Now, though. Now I would be very much both the failure and the fuck-up if I didn’t take the time to do the work, and to do it right, before doing the thing that comes next. That’s the point: the thing that comes next comes next.
There’s work to do first.