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

by Annie Kotowicz

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. Maybe I could have grasped social expectations better if I’d asked more questions. Maybe others could have understood me better, including why I didn’t meet their expectations, if I’d recognized and explained my differences. I did notice that I often felt off-balance and in need of a hug, but I didn’t make the connection to sensory overload. I could have done more to protect myself from feeling overwhelmed if I hadn’t assumed my sensitivity was unreasonable. I also could have used stimming more strategically if I’d recognized its utility for self-calming. On top of all that, I didn’t realize how my attention to detail, both sensory and linguistic, can make it harder to see the big picture. This weakens my ability to plan and make decisions, and I get burnt out when I try to compensate with willpower. I could have learned methods to stay on track with daily habits, and also handled other responsibilities better, if I hadn’t taken so long to recognize my need for external systems.

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.

also think it’s useful to have a term for the way this particular neurotype interacts with stressors. 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.

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.”

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. Everything else about autism is downstream from this. We often miss social cues, because we take people literally. We often move in a rhythm, because it soothes our overstimulated senses. 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.

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

Autism gave me a more complete, more accurate self-image than the unflattering labels that I previously believed. Why do errors jump out at me? Because autistic people often notice tiny details. We catch things that other people miss. Why does drama go over my head? Because autistic people also miss things that other people catch. When we hear a person say something that’s different from what they actually mean, we tend to take it at face value. Why am I so precise and literal? Because autistic people deal with so much misunderstanding and miscommunication in areas that aren’t clearly defined, like tone. So when something is possible for me to clarify—like a homework assignment, or my own motives—then I feel driven to do so. Why do I feel drawn to places that are high up, separate from everyone else? Because autistic people take in so much sensory information that everything seems louder and brighter and more overwhelming to us. I like to tuck myself away in a corner, because it gives me some safety for my senses. All of this explains why I struggle a lot in some situations, and do very well in others. I don’t do well with big-picture planning, but I’m great at zeroing in on the details. I don’t do well around social drama, but I’m great around people who say what they mean. I don’t do well with vague instructions, but I’m great at following a process when I know all the steps. I don’t do well in noisy crowds, but I’m great in small groups or one-on-one.

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

But little autistic girls are often more conscientious than other kids about doing what’s expected, so I never considered that possibility.

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. When others are in pain and I feel it too, it comforts me to remember that such empathy is a beautiful thing, because it moves me to help. The same emotion that feels like weakness may someday alert me to someone’s deep need. This hopefulness and purpose make it easier for me to bear someone’s pain in moments when I can do nothing to help.

Even if there’s no need to leave the house, I still hardly get anything done for half a day before a scheduled call or visit. Part of me feels like I’m giving in to an illusion—the idea that an item on the calendar casts a spell of uselessness on the preceding hours. But that tendency is meeting a real need,

When I don't have enough time to process or prepare, and my attempts to self-advocate fall flat, my brain begins to feel so full that there’s no room left for new thoughts or actions. I call this “cognitive overload,”

An overloaded brain makes it harder to talk. Even ordinary, daily stressors can add up to the point where something has to give, and that something is fluent speech.

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.

Best: I should remember, when I’m about to enter a stressful situation, that stimming is a strategy I can use to prepare myself ahead of time.

If this habit causes you any shame, remind yourself that it’s rooted in needs, as natural as hunger or tiredness, and you’re on a path to find healthier ways to meet those needs.

Unfortunately, this pattern contributes to the false stereotype that autistic people lack empathy, because it can make people feel like we’re minimizing their struggles by turning the focus on ourselves. 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. But maybe they feel uncomfortable pointing out where my analogy misses the mark, because that’s a form of correction.

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

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 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.

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.

I wish it would say to police officers, “I strictly follow every rule to the best of my ability. If it seems like I’m not following directions, it’s because I process audio more slowly under stress. Either that, or I feel confused because what you’re saying contradicts what I thought I was expected to do. Please slow down, assume the best, and rephrase your words if I seem to have misunderstood.”

What looks like defiance is often just dysregulation in disguise. It indicates that someone is having trouble with self-regulation, and the best way to support them in that moment is through co-regulation. What does all of that mean? 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. In practice, this can look like calming yourself down after a stressful event, working up the courage to face a new challenge, or spinning joyfully without falling over. There are no bad emotions, but 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. 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. They pull you into their calm if calm is what you need, or pump you up to get going if going is what you need. 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 ...

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.

would like to stop experiencing discomfort as a threat.

It took until my mid-twenties to learn that likability is a question of compatibility, not a question of identity. It took another few years to learn that what makes me less compatible with some people, and more compatible with others, is a beautiful neurotype that I would never want to lose. I now believe that there is no such thing as “being likable” or “being unlikable.” If beauty is in the eye of the beholder, then likability is in the mind of the liker.

And if you don’t succeed, know that the problem is a difference in values, not a problem with you as a person.

Beauty, cringe, likability, and annoyance are not intrinsic features. They are all reactions from other people.

The reason I try so hard to establish clarity is because I’m terrified of ambiguity.

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.

A turning point came in college, when I read Cold Tangerines by Shauna Niequist, who wrote: “I have been surprised to find that I am given more life, more hope, more moments of buoyancy and redemption, the more I give up… The more I let people be who they are, instead of trying to cram them into what I need from them, the more surprised I am by their beauty and depth.”