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

by Annie Kotowicz

I think the most important thing in that situation, more important than actually making friends, is holding on to the hope that things will get better.

I’ve read that for autistic women and girls, special interests often include people or characters. This explains my desire to learn as much as possible about those I love, and also why rejection strikes so deeply.

Everything is easier to handle if I have time to mentally prepare, but if I don’t see a major change coming, it can feel devastating. Heartbreak in particular has

often surprised me, because my struggle to read nonverbal cues has hidden the clues leading up to it.

Perseveration causes me to remind myself, again and again, that I’ve lost someone I loved, and that things didn’t go as I hoped.

I would have respected their decision if they’d simply stated the truth:

For so long, I had clung obsessively to the objects of my affection, mentally if not physically, afraid that I would never be exactly what they wanted. That kind of fear, while difficult to control, is not conducive to the kind of open conversations that form the bedrock of a secure relationship.

Through learning about autism, I came to know myself. Through knowing myself, I came to accept myself. And through accepting myself, I was more prepared to enter a healthy relationship when an amazing person for me came along.

I wish everyone understood that my actions reflect what’s happening in my senses, not what’s happening in my heart.

And “try your best” doesn’t mean doing the maximum you can possibly imagine—it just means making a diligent effort.

As an adult, I still struggle to figure out what is and isn’t required in various situations. I probably work harder than I need to, because I haven’t mastered the art of what to prioritize and what to rush through or skip. I’m conscientious to a fault, because I can’t figure out when it’s safe not to be.

For me, though, sharing an analogous story is an expression of empathy—a tangible proof to back up my claim that I can understand how someone feels. It’s also an invitation for them to compare and contrast, telling me how their experience differs, so that I can understand them better.

Making suggestions can imply that a person was doing something wrong. Requesting something can imply that a person neglected to provide that thing already. Offering to help can imply that I don’t trust a person’s ability. Sometimes, those implications are true. More often, though, it never crosses my mind that someone might read into it that way, until I get a snide reaction.

I’m terrified of improvisation, so I often spend more time preparing for things than actually doing them.

I’ve heard that bravery isn’t the absence of fear, but choosing to do something in spite of fear. When I’m forced into situations that are scary for me, it takes away the opportunity to make that choice. But when I’m encouraged to try something new, and given full freedom to say no, then it’s a chance to be brave.

Mitigating discomfort has become my first step, so that less bravery is required.

I can do most of the things that I want to, but only some of the time. When I can’t, it’s hard to convince people who’ve seen me do it before. Moreover, it’s hard to convince myself. I push myself too hard when I assume that my current self is the same as my recent self.

I find it easier to ask for help if I can identify the specific reason I’m struggling.

“I don’t know what’s happening, and I find that terrifying. Please tell me where we’re going, and exactly what to expect. Also, many kinds of physical sensations are uncomfortable for me, and that can be hard to distinguish from pain, so I may not know how to answer when you ask me if something hurts.”

Regulation essentially means control—but while “self-control” is about the ability to control outer actions, “self-regulation” is more about the ability to control inner feelings.

Dysregulation, on the other hand, is what happens when the tables turn and your emotions control you. It’s not that you're “letting” them, it’s that they're just too powerful to handle—running wild, unregulated. They take over your heart rate, movements, breath, and voice.

Co-regulation is when someone helps you feel the way you want to feel, by feeling that way themselves, nearby.

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. Autistic brains follow different rules, and thrive better in environments where we have freedom—to move around, avoid eye contact, write instead of speak, ask lots of precise questions, and stay away from spaces that are too loud or bright. Treating our experiences as valid—not as “too sensitive” or “too literal”—frees us to focus more attention on what makes us come alive.

I would like to stop experiencing discomfort as a threat.

There are many people who like me, and many people who don’t. For most of my life, I figured that one group was wrong, but I could never be certain which one. Either I was likable, and some people just didn’t know me well enough to see it, or I was unlikable, and some people were just patient with me. It took until my mid-twenties to learn that likability is a question of compatibility, not a question of identity.

Some people can't see my beauty through my awkwardness,