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

by Annie Kotowicz

An urge to pick is a message from my body, and I’m trying to learn its language.

success or failure in this area has nothing to do with virtue. Self-control, like joy or peace, is the fruit of other actions, not something you can generate out of thin air. If this habit causes you any shame, remind yourself that it’s rooted in needs, as natural as hunger or tiredness, and you’re on a path to find healthier ways to meet those needs.

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

the same action can have a different meaning for different neurotypes.

be mindful that someone’s internal state may be different than you expect, and different than you’d feel if you were acting like them.

we often try to express solidarity through similarity. “I’ve been through something like that” is the most natural way for me to tell someone that I support and sympathize with them.

it can make people feel like we’re minimizing their struggles by turning the focus on ourselves. 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.

When autistic people ignore the power games that others play, we sometimes unintentionally threaten their power structures.

saw that defending my right to consent—or in this case, to decline—was the only way to prevent my current stress from turning into a memory that would trigger future stress.

Sometimes, refusal is the only message that will be understood.

It isn’t always worth the effort to avoid a misunderstanding—and regardless of effort, it isn’t always possible. When all is said and done, sometimes I just decide to let people be wrong about me.

I guess no one expects identity as a reason for behavior, but it is.

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.

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. So I gave myself permission to cry, and then time to recover.

My meltdowns look like a cross between a tantrum and a broken heart, neither of which is true. But other autistic people have very different responses to sensory and cognitive overload. 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.

these reactions become harder to handle with the p...

Overdoing something (overthinking, oversharing, etc.) means doing it too much, in comparison to some standard. Before we can agree that someone is overreacting, we have to agree on the standard to which we’re comparing them. That standard might be how they would react if they were having a better day, or how most people would react.

the standard I prefer to use is the size of the feeling. A big reaction to a big feeling isn’t an overreaction—it’s an accurate reaction.

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. Still, there are days when I lack the strength to dampen anything, and it all comes out.

I've heard many autistics say they can't handle touch during a meltdown, and need space instead, but I don't. I feel like my body is spinning out of control, and I want to feel securely protected while I recover from the previous shock.

With my three thoughts recorded, I was able to turn back to Jake and say calmly, “I’m ready to continue talking now.” I then apologized for the sudden outburst, but he assured me that no matter what I do or how confusing it seems, he always trusts that it will make sense after I have a chance to explain.

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.

It can take a lot of self-control to be the calm in the storm when someone you love is having a big reaction to a seemingly small trigger. It’s wonderful if your emotions can be an anchor for them to flail around, until they’re finally able to collapse into your peace—but if not, that’s okay. They have the right to express their feelings, but you also have the right to feel safe. If their storm is stronger than your calm, then time apart protects you both.

Unpack what surprises others about you, and you may discover hidden sensory needs.

you may not have been able to process it quickly or thoroughly enough to maintain a feeling of control. Some examples include multitasking, changes of plan, holding multiple steps in memory, quick transitions, and surprises. It also takes mental effort to convert information from one form to another, like if your brain needs to turn verbal directions into a visual map.

as you learn which ingredients contribute to your meltdowns, you can try to reduce them. The recipe for a meltdown-free day is to eliminate ingredients that your body and brain can’t handle.

meltdowns serve as a safety valve when the pressure gets too high.

A meltdown may look like an explosion, but it protects me from implosion.

Sometimes, I can apologize. Clarify. Learn. Add new information to my internal database of what people expect. Other times, the reaction is too subtle, and I’m stuck wondering, Did I actually make a mistake? Will I make things weirder by acknowledging it? If I ask what I did wrong, will they even know how to describe it?

They probably won’t. It seems to me that neurotypical people follow their intuition in most social interactions, basing decisions on years of observation without ever putting those lessons into words. I, on the other hand, need words for everything. Some autistics need pictures. Nearly all of us need practical explanations to illuminate the mysterious magic of intuition.

I’m terrified of improvisation, so I often spend more time preparing for things than actually doing them. It feels like building a bridge across a chasm—I could attempt to jump, and sometimes I do, but usually it isn’t worth the risk.

Ideally, I’d like to wield both powers at once: A drive to enter every situation exceptionally well prepared, and a fearless spontaneity that makes it easy to improvise. Realistically, I think reducing the fear might lower the drive, but that’s a balance I’d be willing to accept.

I think it’s important to recognize when a weakness is also a strength. That doesn’t mean I have to stop calling it a weakness—it can be both at once. But seeing the positive flipside lets me evaluate the trade-offs of change, and identify a balance to aim for, while feeling good about who I am in the meantime.

I have frequent opportunities to cultivate bravery, because so many activities are difficult or uncomfortable for me.

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.

the more I learn about the rationale behind autistic fears, the more I try to approach them with curiosity: “Why do I feel this way, and what changes could I make to feel better?” • If the root cause is sensory overload, then I consider ways to muffle sensory input. • If the root cause is information overload, then I make a list of all the relevant facts (“knowns”), to help me identify the gaps (“unknowns”) and turn them into questions. • If the root cause is social expectations, then I try to explain my differences ahead of time. • If the root cause is unpredictability, then I research and ask questions to mentally prepare.

Mitigating discomfort has become my first step, so that less bravery is required. Nevertheless, some amount of bravery will always be needed.

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.

• First, I have to believe that comfort is possible—that discomfort is not inevitable. Whether or not this is fully true, it’s a useful frame of mind for getting ideas. • Next, I try to notice what feels uncomfortable. This is harder to do if I skip the first step—I end up feeling anxious without recognizing why. • Then, I think about what might help me feel more comfortable, or look online to see what others have tried. • Finally, if possible, I do that thing.

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.

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 n...

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...

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

And information overload

On the flipside, my biggest energy givers are compression and special interests.

If I combine an energy giver with an energy drain, then it be...

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.