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

by Annie Kotowicz

Socially, autistic people often communicate in a way that seems awkward to people who are not autistic. We tend to interpret statements literally, sometimes missing the additional layers of meaning tucked into sarcasm or body language.

Autistic people also react differently to sensory input than the average “neurotypical” person—someone whose brain resembles the majority.

“Masking” is a word for the performative effort required to get it right, which makes it tiring for me to socialize.

As I learned about the repetitive movements that autistic people use to calm anxiety, I realized that I was often suppressing such movements to avoid looking weird.

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.

I could have done more to protect myself from feeling overwhelmed if I hadn’t assumed my sensitivity was unreasonable.

I got the idea to write a comprehensive list of every autistic trait I could identify in myself—six single-spaced pages, organized according to the symptoms of autism listed in The Diagnostic and Statistical Manual of Mental Disorders (or “the DSM” for short). One item on my list was the need to make lists! When the evaluation was complete and the psychologist finally revealed the result, I threw my hands up in celebration. It was an official confirmation of the truth I already knew—I am, indeed, autistic! Self-Diagnosis

“My autistic kid rocks—colloquially and kinesthetically!”

Autistic people process information differently, because our brains are hyper-connected in some places and less connected in others.

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...

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 o...

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. T...

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 miss social cues, because we take people literally.

We often experience anxiety, and sometimes even trauma, from sensory shock and unexplained rejection.

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

Why do errors jump out at me? Because autistic people often notice tiny details. We catch things that other people miss.

when something is possible for me to clarify—like a homework assignment, or my own motives—then I feel driven to do so.

I miss what others catch, and I catch what others miss.

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.

I self-censored thousands of times throughout my life before realizing that the best way for me to handle strong emotions is to transform them into something else, such as movement.

compression. When I’m not getting enough of it, my whole world feels off - balance. Weighted blankets help, and so does rolling on the floor, but nothing quite compares to a long, tight hug. Here is how it feels to need a hug, and then to get one: • My self spills out of my body in every direction, like a punctured barrel. A hug plugs up the holes, keeping me intact.

The desire for a hug or other sensory input can arise because of too little stimulation—or too much. Stimming while overstimulated might sound counterintuitive, but it helps because it’s repetitive and predictable. Like a white noise machine for the body, it drowns out other input and makes me feel more grounded.

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.

Sometimes I even feel both at once, in different parts of my body, and it can be all-consuming to figure out what’s happening inside me and what to do about it. At those times, it’s nice that stimming...

stimming doesn't take away control—it gives it.

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. When I first heard about stimming, I didn’t recognize all the ways I did it, until I read that skin picking is a stim—one that’s particularly common for autistic women.

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.

• 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.

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.

• 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.

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.

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.

By that point, I had already learned that if people misread my face, it doesn’t mean something is wrong with me—it just means they don’t speak my language yet. Little by little, I’m learning how to translate.

For me, it’s a combination of too much sensory input and too much cognitive processing, especially when both are surprising.

meltdowns are a physical response, not a reaction to reason.

My meltdowns look like a cross between a tantrum and a broken heart,

Some have shutdowns, becoming inexpressive and withdrawn.

Others feel an urgent need for proprioceptive input, throwing their bodies against a wall or floor to drown out the pain. Others yell or run away.

No matter how large the reaction or how small the cause, recovery is smoother with the safety of self-acceptance.

A meltdown doesn’t always mean that I’m upset. Often, it simply means that I’m depleted.

I’ve heard that you can’t control what happens to you, but you can control how you react. That isn’t always true for me. 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.

Some examples include multitasking, changes of plan, holding multiple steps in memory, quick transitions, and surprises.