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

by Annie Kotowicz

But if you took away all of that, my mind would still be autistic. No matter how I appear on the outside, I will always be autistic on the inside.

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.

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.”

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.

I still had a lingering sense that to some people, I would always be seen as annoying and weird. 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.

I believe that autism can be a superpower,

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

Sensory sensitivity is challenging when it causes me pain, though. For example, I’m so sensitive to water that raindrops feel like I’m being poked with a pencil. Before I found out that I take in more sensory data than most people, I wasn’t able to explain how water affects me. My inner narrative didn’t include the observation that rain hurts my skin, because every time I flinched at it, people would say, “It won’t hurt you!” For someone with sensory sensitivity, who takes things literally, this is confusing and unhelpful to hear. It’s also inaccurate. What they really meant was that it won’t harm me. But because I took them literally, I never thought to label the feeling as pain. Normally, when something hurts you, it causes you to stop and think about how much danger you’re in. A papercut may hurt a lot, but when you realize it’s just a papercut, you know you’ll be okay. It’s hard to do this without first recognizing the feeling. When I began to accept that water does hurt me, I was able to realize that it won’t harm me, and that the pain I feel is disproportionate to the actual danger. Knowing this, I have a bit more courage to face the rain—but I also feel less silly putting up an umbrella when I need to. I think it’s important to trust the words that people use to describe how they feel, but also to notice what they’re communicating through behavior. If someone had trusted that my reactions to rain were reasonable, I might have trusted myself a lot sooner, too.

I wish that I could be in water without water being on me. But some kinds of heaven are worth going through hell, and water can be both.

You can keep something simply because you like it, free from any pressure to use it for a particular purpose?

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.

There is a myth that autistic people lack empathy. Maybe it’s because we can’t always tell how people feel from their facial expressions alone. Or maybe it’s because we often express empathy in different ways than they would. Sensory empathy, in particular, may sometimes be too intense for us to process and put into words. 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. I also try to remind myself that whatever they’re going through, it will get better. They will survive. And so will I, on days when I feel the same way.

It’s like they’ve never considered the possibility that a person can be both smart and slow.

I can’t handle a barrage of facts, descending haphazardly into my mind like Tetris. I freeze up, game over. However, I can handle extremely complex information if you give it to me one bite at a time, with pauses in between to digest each new fact. Everyone deserves respect, regardless of processing speed or ability. But those are separate needs with separate accommodations, and they don’t always overlap.

Once I realized how much easier I find reading, I started going right to the transcript each time.

I find that this lack of empathy is more common with phone calls than with audio recordings. 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. Making an official call, for example to book an appointment or get technical support, requires all of these steps. When calling a friend, I can usually skip some of them. But emailing only requires the first step, so I’m grateful to live at a time in history when the Internet exists. It gives me a way to communicate that’s more enjoyable, and also more efficient for me, if people are willing to use it.

I also need time to transition between places. Whenever I drive to a place where I’ll need to be social, I spend a few minutes alone in my parked car before I go in. I spend this time shifting my expectations from the safety of solitude to the possibility of surprises.

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.

This is what it’s like to have fluctuating abilities. My autism diagnosis states that I’m “without verbal impairment,” because that’s true 99% of the time. But once every hundred days or so, I get a day where talking is a hundred times harder. The very hardest time for me to talk is when I’m startled. If a sudden noise hurts my ears, and a stranger asks if I’m okay, I silently think, I’m not okay. You’ve caught me off-guard, only halfway recovered from an overwhelming moment. I’m trying to regain my sense of balance, as if I was spinning and suddenly stopped. Finding words right now feels like dizzily trying to find which way is up, although every wordless moment increases the tension between us. But when you ask if I’m okay, all you really want to know is if I’ll be okay without help.

I like being polite. But it becomes harder when information comes at me too fast to keep up. My brain panics a little, like I’ve been pushed out of a tree and am grasping for branches as I fall.

When I’m writing, I often ramble a bit before stumbling on the main idea. I might delete the first half of a draft, move the last sentence to the beginning, and make other adjustments before finally sharing it. Now, imagine what that sounds like when I try to do it verbally, in real time. It can seem like I’m jumping all over the place! But it doesn’t feel that way. From the inside, it feels like one coherent idea—an idea that I’m refining, expanding, and improving.

The invisible band gave me a socially acceptable space for an action that felt really good to my body and brain. I wish the whole world could be like that for autistics. In the meantime, we need more spaces like that—spaces to be free.

Stimming isn’t just for autistics.

• Rocking: Play a song that you enjoy, something that usually makes you sway from side to side. This time, though, try swaying forward and backward.

Compression: If you can, ask someone you love to hug you tightly for a whole minute. If you can’t, make a pile of every blanket you own and then crawl underneath. • Textures: Close your eyes, reach into your closet, and touch various pieces of clothing until you find one that feels extra nice, or at least extra interesting. Stroke it gently, really noticing how it feels. • Flapping: Next time you wash your hands, shake them off instead of using a towel. Try side to side, up and down, round in circles, or all over the place. Regardless of whether any of these ideas become a regular habit, experiencing the sensation from the inside may at least help you to empathize with why autistic people stim.

However, self-harm isn't the only risk of stimming. I’ve spent most of my life fighting what my body needs, because I know that if I give in, people might perceive me as a threat. For example: • Percussive movement , such as stomping my feet or whacking my palms on my thighs, could seem threatening because it looks like violence. • Sudden movement , such as stretching out my arms and fingers after curling them up just moments before, could seem threatening if it startles people.

• Facial movement , such as wrinkling my nose or squeezing my eyes shut, could seem threatening because it makes my thoughts and feelings appear mysterious at best, and offensive at worst. • Childlike movement , such as swaying or flapping, could seem threatening because overt playfulness in grown-up movie characters is often used as a signal of insanity.

My idea of a perfect moment is one that stimulates all of my senses at once—but gently, without surprises. A perfect balance is nearly impossible to plan, but occasionally it just happens.

Unfortunately, the one stim that comes closest to making me feel just right also causes the most problems: I find it very satisfying to pick at my skin.

Safety needs are harder to notice. Try asking, “What am I afraid will happen if I leave this scab/flake/nail/hair alone?” Compliant children, in particular, may grow into adults who can’t help feeling that things are “supposed” to be a certain way. Remember that beautiful trees have rough surfaces, and it’s safe for you to have them too.

Cerebral needs take at least two forms. If my mind is overstimulated, then picking can be a calming, meditative activity. If my mind is understimulated, then picking can be a fascinating, exploratory activity. In the moment, I can’t always tell which state I’m in. But if staring at a candle is helpful, then I was probably overstimulated, and if researching a special interest is helpful, then I was probably understimulated.

Fourth, you’re not alone. You’re sharing this journey with many others—including me.

time. My first real “friend group,” on the other hand, was through an online forum.

And it was through hobbies that I eventually made friends, both online and in person.

Making my face look the way I feel.

Through lots of trial and error, I learned which muscles on my face match which expressions in a photo. Now, a posed photo of me looks almost as good as a candidly captured moment of joy. But, like one bite from a tree of knowledge, I can’t undo that awareness. The mere presence of other people gives my mind a preview of what my face is doing. I feel uncomfortable if it’s inaccurate, such as a blank look when I’m actually interested, and I’ve gotten into the habit of manually correcting it. Awareness of my face led to awareness of other ways I might be perceived, too. I learned how to murmur “hmm” and “yeah” at appropriate moments to indicate interest, and lilt my naturally monotone voice to keep others interested in

my words as well. I learned to periodically check for reactions instead of dissociating into the wo...

My closest friends know that the more focused I am on explaining a complex idea, the more monotone I’ll become, and the less I’ll be able to pay attention to their reactions. But they also know that once my thoughts are out, I’ll be eager to hear theirs. • My co-workers know that stimming helps me focus, and they don’t judge me for using a fidget toy during meetings. • My family knows that even if I’m not looking at them, I’m still listening. In a perfect world, all communication styles would be understood well enough that no one would need to mask or translate. But in the meantime, before I have the chance to explain my motivations, I always hope people will trust that my intentions are good.

Special interests , or topics of intense fascination, can cause me to highly value others’ happiness, presence, or mere existence, sometimes even more than my own wellbeing. 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. 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. Heartbreak in particular has often surprised me, because my struggle to read nonverbal cues has hidden the clues leading up to it. As I’ve gotten older, I’ve learned to keep in mind that things can always change, but that wasn’t my default narrative—it’s one I had to learn from experience. • 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.

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.

Sometimes, when children repeat questions, it means that they weren’t listening to the answer. Sometimes, when autistic children in particular repeat questions, it means that they’re seeking reassurance instead of information.

Sometimes misunderstandings arose at school because of questions I never thought to ask. I wish I’d asked my teachers how long I should be spending on homework each night, then measured the actual time to see how it compared. Although many teachers appreciated my thoroughness and creativity, I’m certain that my homework time far exceeded their intentions, leaving me with less time than my classmates had for sleep and hobbies. It wasn’t because I had trouble understanding the work, but rather because of everything feeling equally important.

I’ve noticed a communication pattern among autistics, myself included—we often try to express solidarity through similarity. “I’ve been through something like that” is the most natural way for me to tell someone that I support and sympathize with them. 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.

I would have made fewer enemies if I’d learned earlier in life that it can threaten someone’s status when you shine a light on their flaws—and that goes beyond just correcting errors. 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.

Before learning about autism, I used to have mysterious meltdowns. Well into adulthood, I would sometimes break down crying without understanding why, then apologize shamefully for the tears that I couldn’t justify.