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

by Annie Kotowicz

Making suggestions can imply that a person was doing something wrong. Requesting something can imply that a person neglected to provide that thing already. Offering to help can imply that I don’t trust a person’s ability. Sometimes, those implications are true. More often, though, it never crosses my mind that someone might read into it that way, until I get a snide reaction.

When I do something that gets misunderstood, my first instinct is to explain why. The same is true when I can’t do something—or I can, but only at great cost to my mental or physical well-being.

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.

To others she seems prim and precise, simple and stoic—but her heart is actually bursting with intense emotion, and her mind with complex analysis.

I was instantly reminded of how Jane “always looked as if she were watching everybody, and scheming plots underhand.”

Being autistic deepens my focus on listening and processing, at the expense of calculating an acceptable level of eye contact.

I still have meltdowns occasionally, but less often, because now I understand what triggers them. For me, it’s a combination of too much sensory input and too much cognitive processing, especially when both are surprising. Once, at a birthday party, I spilled tea on my lap right before the cake was brought out and everyone started singing. Another time, at work, someone wanted me to quickly answer a difficult question while other people were yelling across the room.

My meltdowns look like a cross between a tantrum and a broken heart, neither of which is true.

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

A big reaction to a big feeling isn’t an overreaction—it’s an accurate reaction. It’s only overreacting if it’s a big reaction to a small feeling, because then it isn’t communicating how the person really feels.

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

I’m profoundly grateful for that trust, because there are also times when I feel a meltdown approaching and there’s nothing I can do to stop it. When I’m startled, overwhelmed, or in pain, my body sometimes does things I don’t want it to.

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.

Whatever you call it, less strength means less resilience, making you more susceptible to a meltdown when new stressors arise.

Although all brains mature over time, autistics tend to maintain the capacity for meltdowns. This is a good thing, since meltdowns serve as a safety valve when the pressure gets too high.

It’s more interesting to continue learning about one topic, and explore its nuances more deeply, than to branch out.

This experience of inertia would explain the “preference for sameness” listed in the diagnostic criteria for autism.

I 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.

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.

Everything feels easier if I’m ready for it, but the hard part is remaining ready.

I can only do two of these things at once: Look, listen, plan.

If I listen and plan but don’t look , then I can carry on a conversation, but may appear distracted.

Then, when it’s my turn to talk, I can pick any two: Look, speak, plan.

If I look and speak but don’t plan , then I can only get out the words I’ve already planned. To plan more, I have to look away. • If I speak and plan but don’t look , I can be quite eloquent, but I may miss your unspoken reactions.

I also perceive space in an unusual way. When I look around a room, I see lines—or at least, I feel them. What I mean is, the edges of furniture and frames don’t stop at the corners. They continue across the room, like straight spiderwebs, intersecting other lines and piercing various objects. This makes it very easy to notice when things are lined up, and when they aren’t.

Spatial awareness, like sensory and social awareness, takes up space in my mind. If I miss sarcasm, or forget to make a facial expression, or run out of energy to make a decision, I’m not saying the lines in the room are to blame—but they do contribute.

To honestly describe how I’m doing, I have to list each fact that’s hovering in my thoughts, and then say how that fact makes me feel. Essentially, I’m pretending that the question isn’t, “How are you?” but rather, “What’s taking up space in your brain?” A few friends have even started phrasing the question that way, which helps me to know when they want a thorough answer.

I used to love the phrase “can’t see the forest for the trees,” because it gave me a way to explain why I often miss the big picture… I focus too much on the details! But “can’t see” is inaccurate. It would be better to say it takes me longer to see the forest, because first I see the trees. I need to see enough of them to know if they meet the minimum quantity for a forest. Then I need to see their arrangement to know if it’s organic enough for a forest—as opposed to a driveway lined with trees, or a carefully pruned arboretum. Only after gathering data do I feel confident drawing a conclusion. That, for me, is when the forest appears.

Also, the real world has very few widely accepted ways to express strong emotions. Musicals solve this by making it normal to sing triumphantly, gesture dramatically, and dance freely.

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.

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.

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.

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.

I find it easier to ask for help if I can identify the specific reason I’m struggling. So, a huge benefit of learning about autism was learning the neurological reasons for how I felt, and the vocabulary to explain it.

However, when people don’t know I’m autistic, they often have more trouble understanding the importance of my request.

Autistics have a reputation for being good at pattern recognition, but that doesn’t apply to all patterns. There are some that I need help spotting, like motivations that commonly drive other people’s behavior.

Like many autistics, I often go through sensory discomfort, information overload, and the fear of being misunderstood. Therefore, being kind to me means being calm, precise, and patient.

Be patient. I may need a little extra time to form my thoughts into words, or to transition from one activity to another.

Discuss directly. I’m not great at reading between the lines. If you appreciate something about me, or need something, or have a suggestion, just say so.

Encourage my interests. If I’m excited about a hobby or topic, then it’s always on my mind, so I love being able to talk about it at any opportunity.

Give notice. Unpredictability is stressful. If you let me know your plans ahead of time, I can prepare for 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.

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