The Experiment Of Not Knowing
“IF YOU DIDN’T KNOW you were autistic,” I was asked today, “and were (as you are) strung out with the herd move issues, worried about money, and dealing with sleep and muscle pain issues, would this situation have affected you the same awful way? Would you have been able to deal with it better?”
The thing is, that experiment has been run, in more than just thought. It’s called the four decades prior to me being diagnosed in midlife.
In those prior decades, I had stomach aches that kept me out of school sometimes. I remember getting so frustrated with something that I kicked and broke my bedroom door. I freaked out after just one semester of college and never quite recovered a sense of direction. I slept with people I shouldn’t have, because I didn’t know who I was and deference is something I did.
If you go back and read the things I’ve posted elsewhere about autistic burnout, you’ll find me talking about the idea of masking—be it intentional by a diagnosed autistic or just the hidden force of social conformity pushing down on an undiagnosed one—generating a sort of psychic plaque.
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.
At some point it causes the emotional equivalent of a stroke, and your psyche is ravaged by decades of scar tissue suddenly flaring up in pain.
Autistic burnout, let alone its concomittant increased sensitivities, is tough to explain to some people. Especially for the late-diagnosed, it can sound to other people like you’re simply taking advantage of your midlife diagnoses to do less, to shirk responsiblities. In my case, the problem literally ends up being the opposite. I took my diagnosis to Vocational Rehabilitation precisely to use it to attempt a return to gainful employment. Then the increase in stressors due to those changes in my circumstances — going from no paid work to twenty hours a week of paid work plus an hour commute both ways — landed atop the “psychic plaque” of those four decades not even knowing I was masking, and I broke. Now I can’t tell from one week to the next what thing is going to turn out to be a stressor that puts me on the edge.
Late diagnosed adults often talk about how things seemed to “get worse” after diagnosis, but that’s doesn’t mean the dams were not going to break someday even without that diagnosis. It’s just that diagnosis brings it all to the conscious fore.
What happened in that four-decade experiment of not being diagnosed was that rather than going through life as an autistic person who could seek ways to mitigate the downsides, I instead went through life as a failure and a fuck-up.
Things are so bad now not because I was diagnosed in the comparative today but because I was not diagnosed in any of its yesterdays.