In Which My Pre-Diagnosis Life Haunts Me Post-Diagnosis
|May 15 2018||Public post|
MORE ACCURATELY, I learned of autistic burnout last week, but set it aside for this week as something to read up on. It turns out to be useful new knowledge as lately I’ve been thinking a lot about life post-diagnosis as compared to life pre-diagnosis.
Rather than trying to craft an overview of autistic burnout, or capture here everything I’ve been learning, for context I’m simply going to link articles and posts I’ve found to be relevant or resonant. Most if not all of these links appear in the first-linked piece, which also offers some helpful pullquotes. If you don’t have time for reading, try the video linked at the top.
While on the one hand there’s the general ebb and flow of stresses and recovery on a daily or weekly basis, wherein you can try to map out a regimen of self-care that allows for recuperation and rejuvenation, the notion of autistic burnout suggests that the stresses of autism, no matter how well you manage them in those short terms, nonetheless leave a kind of psychic residue, building up like plaque does in your arteries.
Over a period of years, then, it’s a ticking time bomb. Like arterial plaque increasing the risk of heart attack or stroke, the longterm masking of your autism in order to navigate a neurotypical world increases your risk of burnout.
This got me thinking about the 47 years I lived before receiving my autism diagnosis. I was autistic throughout my life, I just didn’t know it. What effect did that have? To what degree, for example, was I masking throughout those decades without consciously realizing it? If intentional long-term masking (and the other tactics and techniques autistic people use to navigate) can lead to autistic burnout, to what degree would such unconscious efforts explain why my life in middle-age seems so much harder than it did earlier on?
Masking, to be sure, sucks. As do the other tools of navigating the allistic world.
When you know you’re autistic, at least you know the nature of the act you’re putting on. For most of my life (to varying degrees of self-awareness), like most other people, I believed that I was a neurotypical person living in a neurotypical world — but badly, as a failure and a fuck-up. I spent decades doing my best to behave as a neurotypical person, because I had no reason to believe I was anything other than that. I didn’t even think in those terms of art, of course; I simply was like everyone else, just far worse at it than most of the other people around me.
But instinct is interesting: for the past couple of decades, I self-identified as an introvert.
It seemed pretty clear to me that while, if necessary, I could navigate certain kinds of high-population, high-impact, high-energy environments — say, the crowds at San Diego Comic-Con — they were, in the end, enervating. I found my energy, or at least my sanity, in low-population, low-impact, low-energy environments — say, living alone. Even in my convention-going days, I could only go if I had a hotel room by myself; I needed a place to escape, even if I didn’t always retreat to it. Knowing it was there helped me get through the day.
You can be both autistic and introverted, of course, but I find myself wondering how much of what I identified as introversion in reality was my autism secretly presenting itself. At the time, the only language I had to address how it felt was that of introversion.
As far as I knew, I was a normal person who was terrible at doing normal person things. Then I came to believe that I was an introvert, which gave me a way to erect certain barriers for my own protection. It didn’t help me when it came, say, to employment, but it guided me socially. Introversion as a concept, then, perhaps gave me a toe-hold into autistic self-care, long before I knew I was autistic.
Introversion and autism aren’t interchangeable things. The levels on my autism soundboard are set differently than on yours, and there are autistic people who are far more extroverted, and those who are far more introverted, than I am. It’s just that the feature set of introversion happened to overlap enough with the feature set of my undiagnosed autism to make it, for a time, a passable if incomplete substitute for addressing some social components of my life.
What I’m getting at here is the idea that living my life as a presumptively-neurotypical person who was just extraordinarily bad at so much of the life of neurotypical people, while all the while actually being unknowingly autistic, was a de facto form of masking. One in which, unawares, I was engaged for my entire life.
All the while, then, that psychic residue was building up in the arteries of my undiagnosed autism.
In recent years things got harder for me and the negative impacts increased, which likely is what prompted family members to urge me toward psychotherapy to see if there was something real behind my adult lifetime of troubles. Something other than me just being a failure and a fuck-up at living a normal life in the normal ways like normal people do.
My diagnosis at 47 was liberating and relieving, to be sure, but also terrifying and exhausting: that’s decades of self-understanding I could have had, if only I’d known. The biggest sense of relief came from having boxes to put things in. Boxes with names. Autism. Anxiety. OCD. Having the diagnosis became taking that diagnosis to Vocational Rehabilitation to find a suitable job placement. Wanting to seem responsive to the VR process became taking a job placement that overwhelmed me. Pushing myself to stay in that job for six months became experiencing what my psychotherapist deemed “depressive episodes” for the first time in my life.
The metaphorical stroke, arguably, was on its way sooner or later. It’s possible that I simply hastened its arrival by pushing so hard once I had gotten into the Vocational Rehabilitation process.
My reading up on autistic burnout led me to two posts on Medium that I did not link above. I wanted to separate them out because they are full of things I feel like I should have tattooed on my body for people to read before dealing with me, except that all that staring itself would overwhelm me.
It literally would be unfair for me to include here each and every one of the paragraphs I highlighted in these two pieces.
Every now and then, someone else on Medium happens to have the words for things I’ve only just barely been able to express to anyone. Finding two pieces was one of those moments. I’d actually read these two posts before any of the sources linked earlier, because I tend to check Medium for anyone writing about concepts I run across elsewhere. While I was thrilled to recognize myself in their descriptions of burnout, I worry about how they suggest that recovery from an autistic burnout can be a long-term prospect.
Just as my diagnoses themselves provided me with much-needed boxes in which to put aspects of my life that until then simply had seemed like some sort of moral failing, having this new box labelled Autistic Burnout comes as something of a relief, but the prospect of being in the midst of such a burnout creates some deep complications.
It’s a story for another time, but I am not today, and have not been for quite some time, self-sufficient. Receiving a diagnosis that I could take to Vocational Rehabilitation was supposed to help address that. As noted above, that attempt blew up in my face. Just this month (and only a month after leaving that job placement) I tried returning to a temporary position I’ve worked twice a year for six years, a job and a work environment to which I am accustomed and where I’m generally comfortable. I managed to work just one shift, and had to bow out of the remaining two, because that first day, and the two after, unexpectedly came with other outside pressures that conspired to wipe me out. I simply couldn’t handle one day of work, three days of pressure, one day recovering, and then immediately two more days more of work.
For decades, without knowing it, I was navigating an allistic world as an autistic person. Thinking it simply was that I was a failure at life, I had no tools at my disposal to minimize or mitigate the ways in which that allistic world will impact an autistic person. By the time of my diagnosis it perhaps was too late to avoid that metaphorical stroke. My zeal to turn my diagnosis into a job placement as quickly as possible might have even hastened its arrival.
So I’ve little doubt: I am suffering autistic burnout.