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

by Annie Kotowicz

the diagnostic criteria for autism are based on a list of observable behaviors. 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.

The DSM calls it “autism spectrum disorder” (ASD), but I prefer to call it “autistic distress.” 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. This difference is visible on brain scans—we have neural pathways that others don’t, like secret passages all over our brains. This results in a torrent of information for each of us to process, including physical sensations and pattern recognition. By default, everything is intense, which has been called “Intense World Theory.” 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.” With such intense focus, we often miss clues about what will happen next in our environment and interactions. Thus, a lot of autistic distress comes from living in a state of constant surprise. This is one application of “Predictive Coding Theory,” also known as “Predictive Processing Theory.”

It affects our social interactions, communication, relationships, physical movements, habits, interests, and sensory experiences—all of which are mentioned in the DSM. However, autism can cause additional effects beyond what the DSM describes, especially when it intersects with co-occurring conditions. There’s a kaleidoscope of ways to be autistic, and that’s why we call it a spectrum.

Autistic people tend to notice spoken language more than body language and tone. Most of us notice surprising sights and sounds more than consistent ones, and pay more attention to sensory input in general than the average person does.

We often experience anxiety, and sometimes even trauma, from sensory shock and unexplained rejection. We often turn to predictable foods, objects, phrases, and interests, because they shield our bodies from shock and our minds from mystery.

I didn’t exactly fit in, but I turned out fine. Over time, I began to notice silver linings behind my mysterious behaviors, even if their unifying cause remained clouded.

That’s why it was incredibly affirming to learn the root cause of all my quirks. Autism gave me a more complete, more accurate self-image than the unflattering labels that I previously believed.

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

If someone had trusted that my reactions to rain were reasonable, I might have trusted myself a lot sooner, too.

As a kid, I played with different toys for different reasons. Some were fun because I could use them to act out my favorite stories. Others were fun for visual or tactile reasons—I liked how they looked, or how they felt in my hand.

No one told me, because I never asked. I just assumed it wasn’t okay, because it wasn’t what other people did.

Not only does water hurt my skin, but sudden noises also hurt my ears, fluorescent light hurts my eyes, and cold wind hurts my neck. Yet somehow, I spent years believing that life is just uncomfortable by default, and trying to muffle that with happy and meaningful activities—not seeing that I could also tackle the discomfort at its source.

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.

Deeply feeling what others feel is, I believe, one of the greatest gifts autistic people have to offer the world.

Everyone deserves respect, regardless of processing speed or ability. But those are separate needs with separate accommodations, and they don’t always overlap.

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.

I didn’t know I was autistic, but my sliver of social awareness was enough to recognize that in most contexts, most people don’t flap.

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.

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. At worst, it can feel like my whole world is falling apart.

Repetitive thoughts , technically called “perseveration,” can amplify both interests and memories. 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. Before I found out that this is a common autistic trait, I didn’t fight such thoughts, because I believed they were justified. When I began to recognize how it can deepen and prolong emotional pain, though, I started to handle all kinds of grief differently. I now see the value in setting aside periods of time specifically to process it, and then trying to redirect any painful thoughts that arise outside those times.

just be mindful that someone’s internal state may be different than you expect, and different than you’d feel if you were acting like them.

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

People often find autistic meltdowns confusing, and ask why we’re overreacting to such a small thing. Sometimes, it isn’t about the thing in question at all. But even if it is, it’s rare for me to consider any reaction an overreaction.

I believe, for those of us who experience life intensely, that underreacting is much more common. We start out reacting proportionately to our feelings as children, then dampen our expressiveness over time when it repeatedly gets labeled as an overreaction. Still, there are days when I lack the strength to dampen anything, and it all comes out.

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. These may sound like reactions, but I see them as proactive, preventative actions. I have less control when I’m reactive, and more control when I’m proactive.

It can take a lot of self-control to be the calm in the storm when someone you love is having a big reaction to a seemingly small trigger. It’s wonderful if your emotions can be an anchor for them to flail around, until they’re finally able to collapse into your peace—but if not, that’s okay. They have the right to express their feelings, but you also have the right to feel safe. If their storm is stronger than your calm, then time apart protects you both.

meltdowns serve as a safety valve when the pressure gets too high.

Some autistic people really are alexithymic. Others, like me, merely access their emotions in an unconventional way.

feeling understood can be life-changing, so it’s worth the effort.

teachers can also benefit from learning about the misunderstandings that arise when an autistic child sees everyone as an equal—including the teacher. My chapter on Misunderstandings contains many examples of this, but a consistent theme is that what feels like a threat to your authority may be driven by a pure intention.

I think it’s important to notice when rejuvenation is more necessary than participation. This could come in the form of a vacation like mine, a “staycation,” or even a switch to homeschooling.

“Autism awareness” campaigns usually focus on spreading reminders that autism exists, but I wish there was more focus on how autistic people think, act, and feel. Then, I could wear it on a bracelet with confidence.

The pain of misunderstanding made getting in trouble even worse. We’ve talked about it now, through hugs and tears. They remember how obedient I was most of the time, and how helpless they felt when occasionally I wasn’t. If I couldn’t behave, and I couldn’t explain why, they didn’t know what to do. Now, they wish they had helped me get away to a quiet place, given me time to gather my thoughts, listened to how I felt, and calmly discussed the problem. If you're a parent, your children may also grow up to realize things that they needed and didn’t know how to request. Any time you wonder if you did something wrong, remember that you were (and are) still learning their love language—and also doing a lot of things right.

being regulated means you're able to control your emotions to suit the things you need to do. 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.

It’s a whole lot easier to regulate emotions with the help of co-regulation than with self-regulation alone. It’s also how you learn to self-regulate in the first place. The voice of reason in your head, giving you ideas for how to feel better, is an echo of anyone who helped you do that in the past.

Treating our experiences as valid—not as “too sensitive” or “too literal”—frees us to focus more attention on what makes us come alive.

no two people think exactly alike. When possible, I prefer to treat others as they would like to be treated. A person’s neurotype can sometimes imply what they’re likely to prefer, but kindness requires curiosity about their individual preferences. This variety of preferences, perspectives, and processing styles is called neurodiversity. It’s a fact, but it’s also a movement. It means recognizing and celebrating the beauty of all minds, and supporting one another in the unique challenges that we face.

But over time, we learn to navigate this maze of information and emotions with stimming to calm us, special interests to delight us, and self-advocacy to empower us. And through it all, we try to remember—beyond our appearance, beyond our abilities, beyond our communication or miscommunication—we are beautiful, all the way to our brains.

If you decide that you want to change your actions to get a different reaction, I support you. But do it with the understanding that you’re trying to improve the relationship, not trying to fix yourself. Be aware of the toll it may take on your mental health. And if you don’t succeed, know that the problem is a difference in values, not a problem with you as a person.

How can you tell when an autistic person’s heart is healing, and shifting toward self-acceptance? As I trade the heavy armor of hypervigilant self-preservation for the spinny sundress of safe authenticity, each step forward may seem like a step back. • I may look “more autistic,” as I embrace the calming power of natural movements. • I may request more support, as I recognize the cost of facing challenges alone. • I may react more suddenly to defend my eyes and ears from sights and sounds. When this first started to happen, I was accused of faking it, as if I were molding myself to match my new label. But I was always this way on the inside—now, it’s merely coming out.