Diagnosis As Retcon

Upending Your Entire Story, In Midlife

I ONCE WROTE, “I don’t seem to have the same degree of sensory issues as do other people writing about their autism.” I wrote this early on in my writing about being autistic and while I understand why I said it, and believed it, at the time, and while it’s true that I think I have fewer sensory issues than do many other autistics, it’s also true that I’ve since learned that it understates things a bit.

It turns out that bright lighting does bother me. It turns out that noise does bother me. It turns out that the hot sun does bother me. What also bothers me is that for four decades apparently I just assumed that was what living in the world was like, period. The world, apparently, simply hurt. I guess I simply assumed it hurt that way for everyone, and that it was just that no one talked about it, or was supposed to talk about it?

Today, post-diagnosis, I wear my mirrorshades pretty much everywhere I go. I wear my ear defenders on public transit, and in cafes that are crowded or playing music. I bought a cooling vest for when I have to host visiting hours at the goats during the summer heat.

I moved recently, from an apartment on a relatively well-traveled road (all my previous apartments were similarly situated) that had noisy neighbors to an apartment on a quieter residential street, set back behind the main house. I don’t think I understood it was possible to live this quietly until I realized that I had stopped taking the two ibuprofin I’d been taking every morning for years. (Yes, I know, bad idea; I’ve pretty much wrecked my stomach.) It turns out I was medicating myself every morning because the headaches that inevitably would come were the result of some very definitive sensory issues regarding sounds.

When I first went to therapy to be evaluated for potential autism, all of my answers to questions about sensory issues were that I didn’t have any. It was only the post-diagnosis freedom to self-examine (or, re-examine, I suppose) without suppositions and preconditions that led me to realize.

Which is a lot of what late diagnosis is about, I guess. Finding out that much of what hurt about your life (if you even consciously were aware of it) wasn’t just life as everyone knows it, but your brain suffering for years, or decades, and you simply not knowing it.

(How is this even possible, you, or the fine folks at Social Security, might ask? Society’s background radiation of conformity is powerful. You learn to suppress difference without it ever even entering your conscious mind. This is how people like me happen.)

Being diagnosed in midlife is a a bit like a kind of trauma, because it upends the story of how you got to be where and who you are, and the real story turns out to have a bunch of hurt in it that went unaddressed, unacknowledged, or, more likely, completely unnoticed.

But it also provides new reasons for the hurt you already knew had been there. Suddenly, it wasn’t that you’ve been a failure and a fuck-up, incapable of “applying yourself”. It’s that there no one ever told you that your brain needed a different toolkit for navigating a world that wasn’t made for it.

That’s not a magic wand. I still don’t have the toolkits I need, be they internal or external. Whether you subscribe to the medical or the social model of disability when it comes to autism, I am still disabled and without the supports I need to survive properly. I can work on the internals (although, apparently not right now), but the externals require authorities like the Social Security Administration to believe I’m disabled at all.

In fiction, “retroactive continuity” isn’t a lie. It’s a newly-revealed explanation for existing history. Being a late-diagnosed autistic means that while you still lived your life as you lived it, it wasn’t what you thought it was.

That’s tricky, and traumatic.

There’s no going back, only forward, but whether that forward leads up or down depends on a depressing number of other people making decisions about whether they believe the retcon, or are sticking with their head canon that I am not disabled.