I’ve been diagnosed with autism for about 2 years now. It feels like a long time to me, the longest any diagnosis has ever felt “right”. It’s long enough that I’ve started to feel like I get all the autism things about myself. For a while after the diagnosis I would regularly have moments of realizing “oh shit that’s autism!” and having pieces fall into place. Each time it happened, it helped me understand myself, navigate when I was struggling, or explain myself better to other people.
But after a while that stops happening as often. You feel like you understand yourself. The diagnosis fits, time to live life. Of course if that were the case I wouldn’t be writing right now, so you know there’s more to the story. A diagnosis like autism is something that you will never stop understanding. You’ll look back at things you did and behaviors you thought everybody did, and realize nope. That’s an autism exclusive.
I’ve had a few of those moments recently, and I want to talk about how hard it can be to realize that autism sometimes makes you an asshole, or affects the people around you in ways you didn’t expect. How do you parse what’s you and what’s the diagnosis? How do you ask for accommodations without expecting people to cater to shitty behavior?
These aren’t new questions, but it’s something that all neurodivergent people have to grapple with over and over as we find new ways that our brains are assholes. Sometimes they’re assholes to us, and sometimes they’re assholes to other people.
Let’s take a recent example for me. I’ve known about the concept of theory of mind for a while, and known that sometimes I struggle with it. But for some reason it never really hit me where I struggle with it until last week. I’ve had a number of people give me feedback in my life that I share too much information about others: there was that time I went to an “Undie Run” and took pictures that I posted online without people’s permission. There’s the fact that every person I’ve dated, I’ve shared our fights/their issues/our small disagreements with friends and family with nary a thought for whether or not that’s shareable information.
Until last week, when I was in a therapy session with my husband and he mentioned that it’s something he finds really tough. “Sometimes you don’t think about the fact that what you tell others will change how they view me or interact with me,” he told me. And I don’t know why, maybe it was the therapist sitting across the room from us, but a light bulb went on over my head and suddenly I was in the perspective of all those people whose privacy I had violated and I felt AWFUL.
I realized that one of the challenges with autism is that you don’t always know what you don’t know (cliche, I know, but true). I know a lot about autism. I spend my life immersed in it. I thought I knew what theory of mind was and had identified all the places that it affects me. But it took a very deliberate effort on the part of my spouse to really help me see where this was affecting him, our relationship, and me.
It’s fucking weird to have those moments. Something you thought was just normal, or a difference of opinion, or just basic human variation starts to look more…pathological. You wonder where you end and the diagnosis begins, what can be attributed to you as a person (your flaws, your preferences, whatever), and what makes sense to label as “autism”. And it’s this awful moment of realization that you’ve been doing something “wrong” your whole life. You can get paranoid that you’ll never be aware enough, never know how different you are, or all the ways that people judge you or find you weird or off putting or bad.
At the same time, it’s a reminder of growth. Ok that sounds corny. But it’s a reminder that I am never “done” processing my diagnosis, and I’m never done learning new coping skills and ways to thrive in a world that doesn’t fully make sense to me. It’s easy when you keep having these realizations over time to feel like you can’t trust your identity or your perception of the world, to feel like your sense of self is always changing or as if you’ll never fully understand your diagnosis.
Being unquestionably different from typical people and having a brain that isn’t fully understood not only by yourself but also by medical professionals means that you’re always working. Yes, it’s exhausting. But it’s also opportunities to improve. Every realization, every piece that falls into place is something that I don’t have to worry about in the ways that made me so anxious when I was younger and was always concerned I was hurting people. In the example above, I suddenly have a way to improve my relationship right at my fingertips. I know how to move forward.
Sometimes finding the balance of accommodations is as simple as identifying what the problem is, like in this case. It will take me practice to exercise that “theory of mind” part of my brain, and to get in the habit of imagining how my actions will affect others. That’s where the accommodation comes into place: my husband knows that it isn’t a desire to hurt him, but simply something that doesn’t come naturally to me. He’ll give me feedback, be more understanding when I make mistakes, and help remind me when I need that.
It’s easy to think when you get a diagnosis that you’ll do all of this at once. That’s just impossible, not only because you’d have to do SO MUCH WORK in one go, but also because only over time do you notice the places where your life needs these kinds of accommodations. You also start to realize that the diagnosis is a helpful tool for framing out problems like this. Before autism, I might have just gotten very frustrated with myself and wondered why I screw up so much. With the understanding of autism, I know what theory of mind is and can understand why it isn’t intuitive to me. I can understand that what I need to do is consciously ask people, rather than try to intuit. It gives me more information, whether or not this particular habit is “autism” or not. That’s why we diagnose: to move forward. That process never stops. What have you unearthed about yourself lately?