Old Lady, New Diagnosis?

I don’t even remember how it started, but somehow the answer finally came to me: Autism. I must be autistic. My social awkwardness, my inability to sail through the simplest tasks, my ineptness at mom-stuff. If I’m autistic I can stop feeling so incompetent and guilty, right? Right?

So, like any good addict, I started researching autism and learning about it and then obsessing about it. Wait a minute -- that sounds like addiction and autism.

Of course, when you're 62, people don't take you very seriously if you come up with something goofy like this. But I persisted and found a doctor in Rochester who specializes in treating adults and teens on the spectrum. (Thank you, Caroline Magyar, Ph.D.)

The process was intense. I admitted things I've never told anyone. I did my very, very best to be honest, even though I knew it would doom me to a diagnosis of garden-variety alcoholic fuck-up. 

After three sessions, I got my diagnosis. Sure enough, there is nothing wrong with me. I am perfectly normal. And I am autistic.

Wow.

I’ve spent most of my life exhausted and trying to figure out why. I’ve been formally assessed for vitamin deficiencies, chronic fatigue syndrome, cardiac disease, sleep apnea (twice!), hypothyroidism, and more. I even went on disability for a couple months. I thought it was a nervous breakdown. Turns out I just have a different operating system.

In my search for answers I've gotten some really valuable information. I was diagnosed with depression and, thankfully, the meds have taken the edge off of that. And I got clean and sober. And I got treated for an eating disorder. All very, very important, and life saving. 

But none of it has fixed the exhaustion. None of it has made it easier to get up in the morning and navigate a normal day: Calling the electric company about a bill. Refilling a prescription. Taking a shower. 

There’s an analogy I saw on a VidCon neurodiversity panel that really resonates for me: Autistics experience double the Earth's gravity. So where other people walk, I slog. The mechanics get easier the more I do a thing, but doing it is still hard. 

The worst part is the shame. I've spent most of my life believing I'm just too lazy to try harder. Through working the steps and through therapy I’ve learned to ignore that voice most of the time. But when I let myself listen, it's still very much there. I still believe deep down that I am a waste of energy and space. A failure-in-hiding. A liability, all in all.

But maybe... 

Maybe I have been doing the best I could all along. I mean, it always felt like I was doing my best in the moment, but intellectually it didn’t compute.

It turns out doing life in double-gravity feels hard because it is hard.

But it’s not doing life that has worn me down so completely. It's beating myself up so relentlessly for fifty years because I thought I should be able to do it better.  That, and the constant effort to hide the struggle from you. (If you ask me to help with dinner, there’s no way I’m going to admit to you that I don’t know how to slice the tomatoes.)

That’s why I’m always exhausted. 

So where does that leave me? Relieved! So relieved! Sad, for being so hard on myself. Still very much aware of the effect my actions have had on others, so, still guilty.

I wish someone else would take over for just a little while. Walk me through the should-be-easy stuff I already know, and help me decide what more I'm ready to learn. Point me toward the path to self-forgiveness. Or maybe just nurture me. You know, just for a few days so I can catch my breath and power down that malicious voice inside. 

But of course, that someone is going to have to be me. And it’s going to take a lot more than a few days. 

Meanwhile, it turns out there’s a whole big world of neurodiversity to explore, a robust culture similar to the Deaf and LGBTQ+ communities, one with it's own vocabulary and political etiquette and activists and even villains. 

So next time you ask me to cut up some tomatoes, I won’t pretend I know what you’re talking about. I’ll ask you. What shape? How big? How thick? How many? And what do you want me to do about that place where the stem used to be? Because, you know, some people throw it out, and some people don’t, and I don't want to screw it up. 

Yeah. Like that. I think it's gonna be good.