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

by Annie Kotowicz

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.

In high school, noticing errors made me unpopular. Later, rising through the ranks of a marketing and web development company, it became my job to ensure that everyone else’s work was technically correct.

Nevertheless, in spite of all this, 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.

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

Processing speed is different from processing ability. Sometimes, when a person realizes I have poor processing speed, they automatically assume I have poor processing ability.

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

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.

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.

The more years I spend exploring my brain and analyzing my challenges, the more I realize the vital importance and wide-ranging benefits of this one simple accommodation: Time.

However, I think the metaphor of a mask can be misleading. It sounds like I’m being deceptive, or changing who I am to fit in, whereas I’m actually just trying to wear my true feelings on my face. I see it more like a language—a way to communicate.

Through learning about autism, I came to know myself. Through knowing myself, I came to accept myself.

But processing information at the moment it’s delivered is a neurotypical expectation. 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?

I’m conscientious to a fault, because I can’t figure out when it’s safe not to be. In between “Everybody does that” and “Nobody does that,” there’s a gray area: “Many do that, and most get away with it.” Speed limits are designed to be broken by up to 10 miles per hour—above that, the consequences begin. I want to learn the equivalent of those 10 miles in other areas of life.

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.

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.

If it seems hard to figure out an autistic meltdown from the outside, it can be hard from the inside, too. Mid-meltdown is no time for sleuthing, but a later review can help identify causes and avoid them in the future. I prefer to call these causes “ingredients,” because it’s rarely just one thing.

Flexible mode means I’m prepared for surprises and interruptions. I know they can come at any moment, so I stay alert. And when they happen, I can handle them. Safe mode means I’m able to focus, without fear of interruption. I feel protected, because I know that if I begin a complex thought process, it won’t get cut off.

The problem with flexible mode is that it doesn’t allow me to think very deeply, or do the kind of work I find most meaningful. It also takes a lot of energy, and creates physical tension in my body. The problem with safe mode is that it makes me more vulnerable. If something breaks my concentration, it’s extra upsetting, and it makes me lose my ability to think and speak clearly.

I can only do two of these things at once: Look, listen, plan.

It’s pretty common for teachers to have one student read aloud while others follow along in the book, but it’s way too much multitasking for my brain. I can only listen if I’m not reading, I can only read if I’m not listening, and I can only track where the current reader is on the page if I’m neither reading nor listening to understand—only matching meaningless letters and sounds.

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.

However, I now recognize that there’s a difference between “stretching my comfort zone” and ripping it open. Challenges need to be big enough to develop new skills, but small enough to keep my brain in a state where it’s able to grow—not freezing up or melting down. And if I’m not ready for something today, I might be ready another day.

Personally, my biggest energy drains are sensory overload, socializing, decisions, and ambiguity.

You’ve met someone who wants to explain their autism, but lacks the time, the words, or the bravery.

But autistic people are all around you—secretly or openly, self-aware or unaware. If you want to be kind to us, then the only way is to be kind to everyone, giving the benefit of the doubt when people behave in ways you don’t understand.

I do my best work when I avoid interruptions. If I lose my train of thought, it takes some time to get back on track. But I’m capable of very complex tasks when I focus on them.

Many of the problems faced by autistics spring less from our autism and more from how others react to it. 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.

Like me, many autistics see a world full of intense complexity, brimming with wonder. It can be overwhelming sometimes, to take in the breathtaking and the bothersome, the glorious and the grating, the deeply exhilarating and the downright exhausting, all at once. 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.