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

by Annie Kotowicz

We’re too late in life to prevent a multitude of misunderstandings, yet too early in history to say, “I am autistic!” and trust that everyone will know what we mean.

We need to unpuzzle the past to heal our hearts, and the present to see who we are.

We’re hardly ever fully at ease, and hardly ever fully ourselves.

Autism affects all of my experiences, but it does so in ways that are unique to me.

As a child, I could already tell that most people experienced life very differently than I did.

imagine that she might be one of the humans who felt like me. I imagined us having similar motivations, reactions, memories, and perspectives.

She encouraged me to go online and read autistic perspectives, to see if I relate to descriptions of how it feels on the inside.

If not for someone else recognizing my autism, would I have denied myself the opportunity to explore it?

We tend to interpret statements literally, sometimes missing the additional layers of meaning tucked into sarcasm or body language.

This can lead to misunderstandings, which some of us try to prevent by making our own words as clear and direct as possible.

External pressure to mask can come in the form of direct advice or indirect scorn,

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.

Maybe I could have grasped social expectations better if I’d asked more questions. Maybe others could have understood me better, including why I didn’t meet their expectations, if I’d recognized and explained my differences.

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

Many people believe they’re autistic, and are accepted as such by other autistics, but have trouble getting a diagnosis, because they don’t match the narrow criteria in the DSM .

At some point, enough is enough. At some point, you have to abandon the urge to justify yourself further, because it’s a moving target.

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.

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.

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.

It affects our social interactions, communication, relationships, physical movements, habits, interests, and sensory experiences—all of which are mentioned in the DSM. However, autism can cause additional effects beyond what the DSM describes, especially when it intersects with co-occurring conditions. There’s a kaleidoscope of ways to be autistic, and that’s why we call it a spectrum.

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 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 was always pointing out everyone’s mistakes,

I was always clueless about social drama.

I was always raising my hand and asking a ton of questions.

But there was usually some part that I still didn’t understand.

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.

Why am I so precise and literal? Because autistic people deal with so much misunderstanding and miscommunication in areas that aren’t clearly defined, like tone.

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

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.

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.

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.

What? I thought. You can just do that? You can keep something simply because you like it, free from any pressure to use it for a particular purpose?

THIS!!

No one told me that it’s fine to keep things just because they feel nice. No one told me that it’s perfectly acceptable, even as an adult, to line up a row of soft blocks and push down on each one, feeling it flatten and watching it rise again, as a calming break from a chaotic world. No one told me, because I never asked. I just assumed it wasn’t okay, because it wasn’t what other people did.

But little autistic girls are often more conscientious than other kids about doing what’s expected, so I never considered that possibility. 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.

I sometimes feel driven to protect my senses without even realizing it. I’m getting better at paying attention to those instincts, but they often seem odd at first.

I sometimes struggle to predict how words will make people feel, but I have a visceral reaction when I witness them reacting to sensory input.

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.

I procrastinate listening to any audio or video clips that people send me, sometimes even splitting the task across multiple days. Once I realized how much easier I find reading, I started going right to the transcript each time.

When someone teaches me a new skill, I usually ask them to go slowly from each step to the next. Historically, this has helped me to stay calm amid an onslaught of new information.

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.

An overloaded brain makes it harder to talk.

My life is full of situations where I react awkwardly, prepare a script, and do better the next time.

Even when it’s possible for me to talk fluently, I still process ideas much better through writing. Talking feels messy, but writing clarifies and crystallizes all my thoughts and feelings.

When I'm upset I prefer to text people my thoughts and feelings rather than say them out loud because I don't think they'll come out right, or I'll forget large portions of the things I NEEDED to talk about, and then I can't bring it up later because the conversation went well and that forgotten, painful information sits with me, sits in me, because I forgot to tell someone and now I can't.

I especially benefit from making a list, any sort of list—a history of what happened, a plan for next steps, or simply an inventory of the thoughts taking up space in my brain.

When things upset me I've started making bullet pointed lists, and then when I'm calm I go and revisit what I wrote and make a decision on if it actually harmed me or if it just hurt my feelings.

When an emotion is too deep for movement and too complex for words, it comes out in sounds—squealing with excitement, groaning with discomfort, sighing with contentment. Vocal stimming is harder for me to control than movement,

My self spills out of my body in every direction, like a punctured barrel. A hug plugs up the holes, keeping me intact. • My thoughts swarm around my head, fuzzy and uncatchable. A hug gathers them up, pauses their motion, and sets them down where I can see them. • My arms don’t know where they want to be. Any position I take feels awkward and wrong. A hug slides me back into place, snugly fitting into my own existence.