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.

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.”

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.

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

feel like my brain has two settings, which I call “flexible mode” and “safe mode.” I can usually choose which one I want to be in, though it takes some time to switch back and forth. Both have pros and cons. 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 feel calmest and happiest in safe mode, but most of the time it isn’t worth the risk. Even though flexible mode is harder, it isn’t nearly as hard as suddenly being thrust out of safe mode by an interruption. Everything feels easier if I’m ready for it, but the hard part is remaining ready.

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.

Some things are going to feel uncomfortable no matter what, but other things have the potential to improve, so I figure that it’s always worth a try. I keep experimenting, keep reading how other autistics have overcome similar challenges, and keep looking for ways to feel better. I try to minimize sensory discomfort in any way I can, because small discomforts can add up over time—and so can small improvements.

Energy Budgeting It’s easier to notice what bothers me if I observe how various activities affect my energy level. By “energy,” I mean more than just not feeling sleepy—I mean the power to take certain actions, like move or speak or work. Mine goes up and down. I can do most of the things that I want to, but only some of the time. When I can’t, it’s hard to convince people who’ve seen me do it before. Moreover, it’s hard to convince myself. I push myself too hard when I assume that my current self is the same as my recent self. It’s not. My abilities fluctuate wildly, a trait I’ve heard other autistics call “spiky functioning” because of how it would look on a graph. I’m trying to grow more attentive to who I am right now, not twisting it to fit my memory of yesterday. I’m also trying to budget my energy. This means limiting how many draining activities I do in a day, preparing for those activities through other ones that fill me up, and intentionally recharging my energy after it’s drained. It’s not magic, just math. There’s no official measurement to quantify the kind of energy I’m talking about, but I like to use the metaphorical unit of “spoons”—as in, each day you get a handful of spoons to spend, and the number varies. That idea was invented by Christine Miserandino, who applies it to chronic illness.

Personally, my biggest energy drains are sensory overload, socializing, decisions, and ambiguity. On the flipside, my biggest energy givers are compression and special interests. If I combine an energy giver with an energy drain, then it becomes less draining. For example, it’s easier to socialize if I’m sitting between close friends, talking about something that interests me. Later, my favorite way to recover is to lie sideways under a heavy blanket, and research something I’m curious about on my phone.

Procrastination One big clue that something drains my energy is if I procrastinate doing it. When I try to follow anti-procrastination tips from someone whose mind is very different from mine, it’s less likely to help, because procrastination is an outer behavior, not an inner experience. On the other hand, I’ve learned a lot from people whose motivations for procrastination are similar to mine. Here are some of those motivations: • Aversion: I put off a task because I expect it to feel unpleasant. It helps to combine it with something I enjoy, like music or tea. • Inertia: I put off a task because I’m caught up in another activity, like I mentioned in the chapter on Quirks. It helps to set a timer, but instead of stopping right when the timer goes off, I use that as a cue to choose a logical stopping point in the current activity. • Catatonia: I put off a task because I feel physically stuck when I try to begin. One of my autistic friends breaks out of this feeling using a method she calls “non-repetitive stimming,” which looks like trying to wiggle around in a random way. It helps her to speak, and it helps me to get up off the couch when I don’t feel like doing the dishes. • Overwhelm: I put off a task because I don’t know where to begin. The classic advice for this is to break the task down into smaller steps, but what if I have no idea what the first step should be? I find it helps to create a list of any specific questions I have, so that I can search for answers...

Triage: I put off a task because there’s always something more urgent clawing at my attention. It helps to group such tasks into categories (e.g. “tiny non-urgent things” or “home improvements”), then schedule a chunk of time to focus on a particular category. This frees me from wondering if there’s something else I ought to be doing instead. I haven’t ful...

“What things seem easy to others, but feel hard to you?” • “What things feel really good to you, even if they seem to serve no other purpose?” • “What things would be helpful to you, if people knew you needed them?”

I have a disability, which is also in some ways a superpower. It affects how I process information, which in turn affects everything else. • I notice tiny details. If anyone needs help double-checking something, I’m a great person to ask. • Since I’m so focused on details, I sometimes miss the big picture. I need help to prioritize and identify what’s worth my attention. • 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.

I take instructions very literally, not reading between the lines or guessing at what’s implied. • Bright lights and loud sounds feel extra bright and loud to me, so I try to block them out when possible. • I have trouble processing audio, so meetings and phone calls can feel draining for me. I need time before to prepare, and time after to recover. • Since I try to follow rules closely, I get confused if they’re ignored in practice. I like knowing exactly what’s expected of me. • Sometimes I fidget with a small object. It calms me, and helps me to think more clearly. • These things are true because I’m autistic. Many of them are true for other people too, but all are more common for autistics.

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. However, acceptance goes both ways. When I decided to use “Neurobeautiful” as my blog title and pen name, I never meant for it to only describe autism. Instead, it reflects my belief in the beauty of neurodiversity, which includes all brains—neurotypical and neurodivergent.