What I Mean When I Say I'm Autistic: Unpuzzling a Life on the Autism Spectrum

by Annie Kotowicz

We survive by filtering some parts out. It’s as if every form of input has a volume knob, and ours are all the way up by default—so we turn some down to compensate, but can’t control which ones. And here’s what creates the variety: Different people filter out different kinds of information. Then, what we don’t filter out becomes our focus. It’s comforting, and often necessary, to drown out the noise by turning all of our attention to one thing at a time, which has been called “Monotropism.”

Meltdowns and shutdowns, which are often considered symptoms of autism, can result from the strain of pulling our attention in too many directions.

However, my favorite way to think of autism is this: I miss what others catch, and I catch what others miss.

People often say, “Just pick up the phone, it’s so much more efficient!” It’s true that phone calls are more efficient if you measure from dialing to hanging up, since most people don’t reply immediately to emails. But phone calls take longer for me overall, if you include all my steps before and after the call: • Write down what I plan to say, usually as bullet points but sometimes as full sentences. • Plan a flow chart of additional things I might need to say, depending on how the call goes. • Breathe deeply to gather courage. • Make the call, reading my notes aloud. • Write down any important information I learn, as well as any follow-up steps I need to take. • Take some time to recover and collect my thoughts, until I’m able to focus on other things again.

By itself, cognitive overload is not distressing to me. What causes distress is any little thing added on top—such as a question, a change in my environment, or a required action. I suppose you could say that cognitive overload is like a load on a camel’s back. My number one priority, in that state, is to avoid adding any new straws.

When I try to do too much at once, it makes me anxious. If I notice the anxiety soon enough, I can follow one of my scripts, such as: • “I just need a moment to finish this first.” • “I’ll answer as soon as this is done.” • “I can’t do both things at once.” If I notice the anxiety too late, though, I lose the ability to articulate what I need. My brain goes into overdrive, and my mouth can’t find a way to explain it.

Even when it’s possible for me to talk fluently, I still process ideas much better through writing. Talking feels messy, but writing clarifies and crystallizes all my thoughts and feelings. I especially benefit from making a list, any sort of list—a history of what happened, a plan for next steps, or simply an inventory of the thoughts taking up space in my brain. If I see my ideas in text form, it’s easier to organize and remember them, as well as notice connections.

It wasn’t until my thirties that I learned some people correct factual errors as a power move. That explains why teachers rarely appreciated it when I pointed out their mistakes—they saw it as an attempt to usurp their authority. I also got similar reactions from classmates, colleagues, and others whose authority was equal to mine, because they assumed I was flexing on them. Nothing could be further from the truth. For me, showing someone where they’re wrong feels like keeping them safe from the consequences of their mistake. It’s a collaborative pursuit of truth, not a power move.

I realized that in any memory that causes my heart to shudder, there’s a common thread: I didn’t stand up for myself. Sometimes, I couldn’t. But this time, I could. I saw that defending my right to consent—or in this case, to decline—was the only way to prevent my current stress from turning into a memory that would trigger future stress.

I guess no one expects identity as a reason for behavior, but it is. Being autistic deepens my focus on listening and processing, at the expense of calculating an acceptable level of eye contact.

I’ve heard that you can’t control what happens to you, but you can control how you react. That isn’t always true for me. Often, I have more control over what happens to me than how I react to it. I can choose to avoid some stressful situations, and I can choose to exit others.

I feel like my brain has two settings, which I call “flexible mode” and “safe mode.” I can usually choose which one I want to be in, though it takes some time to switch back and forth. Both have pros and cons. Flexible mode means I’m prepared for surprises and interruptions. I know they can come at any moment, so I stay alert. And when they happen, I can handle them. Safe mode means I’m able to focus, without fear of interruption. I feel protected, because I know that if I begin a complex thought process, it won’t get cut off. The problem with flexible mode is that it doesn’t allow me to think very deeply, or do the kind of work I find most meaningful. It also takes a lot of energy, and creates physical tension in my body. The problem with safe mode is that it makes me more vulnerable. If something breaks my concentration, it’s extra upsetting, and it makes me lose my ability to think and speak clearly.

If I combine an energy giver with an energy drain, then it becomes less draining. For example, it’s easier to socialize if I’m sitting between close friends, talking about something that interests me. Later, my favorite way to recover is to lie sideways under a heavy blanket, and research something I’m curious about on my phone.

Many of the problems faced by autistics spring less from our autism and more from how others react to it. We live in a world where other people make the rules for what counts as “normal” behavior, so it can create tension if we break those rules by accident, don’t understand them to begin with, or aren’t able to follow them even when we want to.

Like me, many autistics see a world full of intense complexity, brimming with wonder. It can be overwhelming sometimes, to take in the breathtaking and the bothersome, the glorious and the grating, the deeply exhilarating and the downright exhausting, all at once.

I ask a lot of questions, because I value clarity. This person feels annoyed by that, because they value efficiency more than I do.

It also has caused me to greatly appreciate a particular communication style that seems to come more naturally to autistics: • Telling the truth—precisely, thoroughly, and unreservedly. • Judging by merits and integrity, without regard for status or authority. • Diving past surface-level pleasantries to explore the depths of one another’s fascination. • Giving instructions that include every step, without making assumptions about what the listener already knows. • Picking up on patterns that connect the current topic of conversation to other relevant topics.