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

by Annie Kotowicz

There, I tried to figure out which of my experiences are caused by autism, and which are merely me. I eventually concluded that there’s no difference between the two. Autism affects all of my experiences, but it does so in ways that are unique to me.

“He doesn’t understand you, so he doesn’t know how much you care about understanding the reasons for things.”

Little by little, I came to realize that I must be fully autistic. What a significant discovery! It explained nearly every problem I’d had in life, as well as many of my quirks and talents. It was like learning for the first time that I’m actually an elf or mermaid or fairy—moreover, that there’s nothing wrong with that, and that there are others like me.

I get burnt out when I try to compensate with willpower.

Besides, the diagnostic criteria for autism are based on a list of observable behaviors. The more I’ve learned about these seemingly unrelated traits, the more I’ve realized that what makes me autistic is not my outer actions, but the inner neurology that produces them.

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.

I personally see autism as a superpower, a disability, or a combination of both, depending on the situation.

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

How It Feels to Feel So Much I hardly ever feel completely at ease in my body. Usually, something is too cold or too hot, too wobbly or too firm, too tight or too loose—it’s very rare for everything to feel just right.

Overall, it’s as if I was born into a fairytale, with a fairy who came to my christening and told everyone, “She will feel everything!” Would that be a good gift? Yes, and no, and sometimes both at once.

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.

This is a paradox of autism: Too much stimulation can make my nervous system feel dysregulated, but so can too little. At best, dysregulation feels like something is not right—like I was born for cozy fires with friends, and I’m not living my destiny. At worst, it can feel like my whole world is falling apart.

I finally feel knowable, and known—no longer a puzzling enigma.

I wish everyone understood that my actions reflect what’s happening in my senses, not what’s happening in my heart.

being misunderstood doesn’t mean I’m worth any less.

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

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

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.

I think it’s important to notice when rejuvenation is more necessary than participation.

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.

Parents like her want to reassure their kids that they are “more” than their autism, not recognizing how beautiful it can be to see the world the way they do, or how much it can affect their identity.

• I wouldn’t be as driven to improve everything, because fewer things would make me uncomfortable.

• I wouldn’t be as delighted by so many things, because my senses wouldn’t be as strong, nor my emotions as finely tuned to the effects of my senses.

There are many people who like me, and many people who don’t. For most of my life, I figured that one group was wrong, but I could never be certain which one.

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.

Those same people might have also questioned the validity of your words and experiences, but here is what I believe: • Your pain is valid. What they said shouldn’t hurt—did. • Your intentions are valid. What they said was malicious—wasn’t. • Your passions are valid. What they said isn’t worthwhile—is. • Your boundaries are valid. What they said is selfish—isn’t. • Your life is valid. What they said is tragic—does not have to be.