#022 Living on a Spectrum

Hello. My name is Amy, and I have autism.

About a month ago, I was diagnosed with autism spectrum disorder. For about two months before my diagnosis, I pretty much knew. For about twenty years before my diagnosis, I suspected.

I couldn’t be diagnosed when I was young because, back then, people had a very narrow view of what it meant to be autistic, and it didn’t include girls or the types of traits autistic girls usually manifest. On top of that, no one was paying any attention to me, even though I very clearly had something going on.

Ever since I realized I was probably autistic, I’ve been wrestling with this question: Do I tell people about it?

photo by Pierre Bamin

But, let’s face it. With me, the answer is always yes. You might call it inappropriate oversharing. I call it living authentically.

At first, I was really eager to announce it to the world. I finally had an explanation for my weirdness! People might finally forgive me for my past social faux pas!

I never really knew how to behave in social situations, so I copied other people. I didn’t know that it wasn’t normal to do that, but it’s why I went undiagnosed for so long.

With a lot of effort, I’m capable of passing as neurotypical. In fact, I was so capable, I’d fooled myself. I even modeled “normal” to myself when I was alone because I wanted so much to fit in.

After several years of trial and error, I mostly did ok. Sometimes, I copied the wrong person (like, they were an asshole or something), applied a copied phrase or behavior inappropriately, or let my autistic point of view out when it should’ve stayed in.

It’s just not possible to get everything right every time, and it was always devastating when I knew I’d messed up.

I also have sensory processing differences. Certain sounds, smells, bright lights, and textures trigger something in my brain that makes them completely unbearable.

(There are also certain sounds, smells, etc. that I find exceptionally pleasant and soothing, but I’m not complaining about those.)

Neurotypical people have preferences, but for me, this isn’t about preference, it’s about survival. It’s highly contextual, but there are times when I can’t function on a basic level because my environment is making me physically ill.

Eventually, I melt down, shut down, or have a panic attack. Usually, something small puts me over the edge because I was barely hanging on in the first place.

Most of the time, I merely function poorly, and then get burnt out and exhausted fast.

In favorable situations, I become hyper functional. I’m creative, skilled, and insightful. I have a Sherlock Holmsian awareness of my environment. Elegant solutions pile up around me and amaze neurotypicals.

So, that’s why I’m telling people. I need accommodation, consideration, and recognition that there’s a good side to all of this. People can’t extend any of that to me if they don’t know.

I’ve also considered not telling anyone, at all, because I’ve been afraid. There are a lot of negative stereotypes out there about people with autism.

To me, the worst one is that we lack theory of mind—the ability to imagine the thoughts and feelings of others. Nothing scares me more than the idea that other people might think I don’t have empathy or that I don’t think about what life is like in their shoes.

As a person who has been striving to be “normal” for several decades, all I do is imagine what life is like in other people’s heads. Well, not all. Sometimes, I do other things, but still, I spend a lot of time on it.

It’s become a habitual preoccupation of mine. That’s why I write fiction. I’ve got to do something with all these imaginings of what goes on inside other people’s heads.

The vast majority of the time, I don’t think people are being evil or selfish. Most of the time, I feel I understand how fear and desire (or craving and aversion) coalesce and result in whatever a person is doing at any given moment, and I sympathize with them.

I also empathize to a detrimental degree, but I believe that’s a separate issue. I feel other people’s feelings automatically and overwhelmingly, and from what I’ve heard in the autism community so far, it’s very common for autistic people to be more empathetic than neurotypicals, not less.

However, I can’t speak for every autistic person, nor do I want to. This has long been a problem for every person in a minority group who wants to speak about their own experience. How do you speak your own truth without your audience immediately thinking they can superimpose that truth upon every other person in your group? Maybe you can’t without always adding the disclaimer, “hey, we’re all individuals,” which should be obvious, but somehow, it isn’t.

I like the way Katherine May (an autistic writer) puts it in her book, The Electricity of Every Living Thing:

There is no single, defining version of autism, but instead an overlapping multiplicity of minds. The term ‘spectrum’ is a poor way of capturing the sheer diversity of our experience - it’s too linear, too fixed. When I imagine us, I think of a constellation instead, or perhaps a galaxy: millions of different stars shining, each expressing their fire in a different way. I am just one way of living that experience.

I don’t know how much I’m going to write about this going forward. I don’t plan on it, but at the same time, I’ll always be speaking from an autistic perspective.

I have sensory issues. My social instincts land far outside the norm of neurotypical standards. I won’t remember your name unless I see it written (or imagine it that way), and I’ll struggle to remember your face (I memorize physical features like a kid studies for a vocabulary test). For the love of god, if you’re going to change your hair, wear something I’ve seen you wearing before. I have no clue what your facial expression is telling me about your mood, but I feel your emotions (and sometimes physical pains) like they’re my own.

Those are just a few of my experiences. I could go through the DSM definition of autistic traits and tell you multiple stories about how each of them has shown up in my life, but I think that’s it for now.

Thank you for understanding.

Here’s a clip of comedian Hannah Gadsby talking about one of the ways her autism manifests in a funny way.

Here’s another brilliant video by Khadija Mbowe, where she discusses how leftist spaces can improve their approach to challenging the right.