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

by Annie Kotowicz

“He doesn’t understand you, so he doesn’t know how much you care about understanding the reasons for things.”

They also actively appreciated parts of my personality that others found annoying, such as my drive to clarify precisely what I mean.

We tend to interpret statements literally, sometimes missing the additional layers of meaning tucked into sarcasm or body language. This can lead to misunderstandings, which some of us try to prevent by making our own words as clear and direct as possible.

“Masking” is a word for the performative effort required to get it right, which makes it tiring for me to socialize.

I thought communication was hard because I’m awkward and annoying. It’s actually hard because I put extraordinary effort into processing and analyzing words, meanwhile missing the hidden meanings in gestures and tone.

The more I’ve learned about these seemingly unrelated traits, the more I’ve realized that what makes me autistic is not my outer actions, but the inner neurology that produces them.

Historically, in the DSM, autism has been defined by a list of behaviors. On closer examination, most of those are traits that a certain kind of mind exhibits under distress.

From birth, it makes some things enjoyable and other things hard. It makes a person more vulnerable to experiencing certain kinds of distress, but doesn’t guarantee that will happen.

It varies over time, based on the environment and the intensity of any co-occurring conditions. So, a person might qualify for a diagnosis of ASD at some points in life but not others, while remaining consistently autistic.

Autistic people process information differently, because our brains are hyper-connected in some places and less connected in others.

By default, everything is intense, which has been called “Intense World Theory.”

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.

We often turn to predictable foods, objects, phrases, and interests, because they shield our bodies from shock and our minds from mystery.

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.

I once read a blog post by a mother who was mourning her son’s autism. One of her main complaints was that all he wanted to do all day was stare out the window at trees. On reading that, my reaction was to applaud the child’s aesthetic taste, approve of how he spends his time, and wish I could afford to do the same.

I readily

portals of possibility that cause my imagination to soar.

I wish I had learned earlier in life that it’s okay to enjoy things for sensory reasons alone.

Yet somehow, I spent years believing that life is just uncomfortable by default, and trying to muffle that with happy and meaningful activities—not

A benefit of avoiding sensory distress is that it increases my ability to handle everything else. When a situation gets easier on a sensory level, it gets easier on an intellectual level too.

I sometimes feel driven to protect my senses without even realizing it.

Sensory empathy, in particular, may sometimes be too intense for us to process and put into words.

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.

Jake says that he imagines the inside of my brain like the interior of a Gothic castle. In its grandest room, stained glass windows stretch all the way up the walls, spilling colorful light onto rows of desks where scribes sit typing. What they write gets sent up pneumatic tubes, to be archived in the lofty towers.

But with enough external calm, and enough time to think, my mind is a very pleasant place to be.

Emotions can feel like a physical force, welling up in my chest and bursting out through my limbs, so rocking or swaying gives them a place to go. My friend Robby once observed, “You can’t contain all the happiness in one place, so you have to distribute it across space.”

I remember reading an adventure novel as a child, and pausing right at the climax to run around the couch, because I just couldn’t take the excitement.

Stimming while overstimulated might sound counterintuitive, but it helps because it’s repetitive and predictable.

A key feature of autism, which distinguishes it from similar neurotypes, is the tendency to waver between overstimulation and understimulation, depending on the environment and the day. Sometimes I even feel both at once, in different parts of my body, and it can be all-consuming to figure out what’s happening inside me and what to do about it.

My idea of a perfect moment is one that stimulates all of my senses at once—but gently, without surprises.

This is a paradox of autism: Too much stimulation can make my nervous system feel dysregulated, but so can too little. At best, dysregulation feels like something is not right—like I was born for cozy fires with friends, and I’m not living my destiny.

My co-workers know that stimming helps me focus, and they don’t judge me for using a fidget toy during meetings.

I might have been the only one who didn’t realize I was neurodivergent—that is, not neurotypical.

I wish I’d known that my awe is caused as much by my own neurology as it is by another person’s admirable characteristics.

Solid expectations mean that my brain is not naturally prepared for transition, and unexpected changes can hit like a load of bricks. 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.

Repetitive thoughts , technically called “perseveration,” can amplify both interests and memories.

I was going to say, “common pitfalls of my communication style,” or “how to identify and articulate my unique needs,” or “how vastly different other brains can be,” or something else that I didn’t understand in the preceding ten years of consecutive heartbreaks.

When I’m with autistic friends, we’re constantly asking one another what we meant—was it this meaning, or this other slightly different meaning? Carving up our communication, uncovering its deeper layers of precision, is a satisfying art form, as well as a safety net of mutual understanding.

This has been called the “Double Empathy Problem.” It’s not just a matter of personal comfort—people who share the same neurotype are able to interpret one another’s words more accurately.

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

I especially notice this distinction when I hear someone say, “Let me finish!” If the person is autistic, it usually means an interruption has threatened to derail their train of thought. I sometimes say it out of desperation, begging for permission to rescue the ideas quickly slipping from my mind.

But when I interrupt, it’s never out of impatience. Sometimes it’s because I failed to notice a better moment to enter the conversation, but more often it’s genuine confusion due to missing some information that would put everything else into context.

Sometimes, when autistic children in particular repeat questions, it means that they’re seeking reassurance instead of information.

I didn’t know how to articulate the difference between the question they’d answered and the question I’d wanted them to answer, so every attempt to rephrase made me sound like a broken record.

A specific question that frequently caused repercussions at school was, “Is there any homework tonight?” Whenever I asked this, it was treated as an attempt to create extra work for my classmates or earn praise from my teacher. In reality, I was only trying to protect myself from the shame and consequences of having missed an instruction.

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

Whew.

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, showing someone where they’re wrong feels like keeping them safe from the consequences of their mistake.

When autistic people ignore the power games that others play, we sometimes unintentionally threaten their power structures.