What being autistic feels like to me.

by Rick Osborne, 2023-06

Forward: Some context

Repeat after me: if you've met one autistic person, you've met one autistic person.

I've put together this list for my own reasons, and I think it's a pretty good summary of my experience. But it's my experience. Some of it may resonate with you. Some of it may not. I do not claim that this experience in any way represents the average autistic experience. Only mine.

You should note that in addition to being autistic, I also have diagnoses for cPTSD and a resulting dismissive-avoidant attachment disorder. There are no bright, clean lines between my autistic traits and experiences and the traits and experiences relating to those diagnoses.

But ... if my descriptions here inspire you to maybe dig some more into autistic traits (or the other diagnoses), then that's awesome. Glad I could help.

Sensory Issues

Temperature

My inability to thermoregulate shuts down my high-order cognition and significantly reduces all other sensory processing, basically reducing me to marmoset-brain. Until I can cool down, I find it intensely difficult to interact with people, and even simple tasks can be quite taxing. This has gotten noticeably worse as I’ve gotten older.

Visual

Bright or flashing lights will overload me, as will dissonant visual patterns. Both produce similar effects as above, but these also yield migraines.

Auditory

I am mostly okay with sounds — whether loud, or just a cacophony. In fact, music (whether real or in my head) is one of the easiest ways to reduce other issues.

Touch

When I was younger, I had touch-related sensitivities. Not in a touch is threatening sort of way, but in a this texture or feeling is too much and is making me itchy all over aversion kind of way.

This caused issues when my wife and I first started sharing the same bed, as her hair against me was one of that type of triggering sensation. This seems to be gone these days, as I can’t remember the last time a touch alone was a problem.

Smell & Taste

I don’t seem to have taste-, or smell-related issues.

Perception Issues

Body Language

I really, really struggle with facial expressions and body language. I’ve put a ton of effort into this, so it doesn’t seem too noticeable to others. But, it takes a lot out of me to be around someone new (or in, say, a space with a bunch of new people), as I get overwhelmed with the new inputs I can’t read.

Subtext

Subtext is almost as hard for me. Sometimes I can pick up that I’m missing something (it feels like a dissonance between what I’m hearing and what I’m seeing), but I can only rarely understand what the unsaid thing is. I’ve gotten better about just directly saying hey, I feel like I’m missing something here.

Anecdote: subtext.

In my 20s, I went to a dermatologist to get some moles assessed. She asked me repeatedly, in several different ways, if I thought they might be causing me problems. I became visibly frustrated, as I couldn't seem to get across that I wasn't sure, and that's why I was seeing her. My spouse had to step in and pointedly say Rick, you need to say they are causing you trouble, so the doctor can write that down and charge insurance instead of you. I never would have picked up on that.

Sarcasm

My sarcasm detection isn’t as bad as my subtext detection, but I have more trouble with it the less I know someone.

Emotional Intensity

Someone acting with high emotional intensity (whether negative or positive) produces a sort of white noise in the rest of my sensory processing. I’ll have trouble reading even people I know really well. At really high emotional volume, it’ll also shut down my own emotions, reducing me to Analytical Robot Rick.

I’d guess this was very intersectional with my CPTSD.

Presentation & Speech Issues

Conversation

I have to put in a lot of work to not let my own pedantic/detail-oriented worldview bleed into conversations. It took decades to learn to stop correcting people for trivial things. (And I still do it more than I’d like.)

Mirroring

I really, really struggle with (emotional) mirroring. Probably because it’s pretty rare that someone else’s emotional state (whether positive or negative) will affect my own. Working to synchronize to someone else’s emotional state feels … wrong, somehow, so mirroring kind-of feels like lying?

Affect

I will often have to remember to put on an affect when around others. This is much less prevalent now than it was when I was younger — I’ve been told often enough how disconcerting it can be to talk to me when I’m flat.

Eye Contact

Eye contact can be challenging. But again, it is much better than it used to be.

Physical Stimming

I had a lot more physical stims when I was younger — talking to myself, stereotypic movements, humming, etc. But, I figured out pretty young they would often be used against me, so I shifted almost all of them inside.

Physicality

My wife says I walk like a pretty pony. I don't necessarily agree, but I decline to argue this point.

Cognition Issues

Interruptions

I get very dysregulated when I am focused and interrupted. Especially if I’m repeatedly and chaotically interrupted. I have to remove myself from the space, or it will end in a meltdown.

Secrets & Lies

I have trouble with secrets and lies. Don’t tell this other person, but… is just about the worst thing you can say to me in casual conversation.

Similarly, I’ve gotten in trouble countless times for sharing something I wasn’t supposed to, because in my head it didn’t seem like something anyone would bother keeping private. Even when explicitly told not to tell, if the request seems unreasonable it just will not stick in my brain, as much as I might want it to.

Inside vs. Outside

Sooooo much of my world is in my head, to the point that others will find it disconcerting. I’ll just be over in a corner, quietly working through some coding problem or work problem in my head, for hours. Or, when asked a question, I’ll ask for a few minutes to think quietly on it before I answer.

Mental Stimming

If I need to re-regulate, dissociate, or just divert my attention, I'm pretty good at setting up some kind of mental diversion. Sometimes it's listening to a song in my head, or replaying film scenes — those are good for light distractions, like standing in the line at the supermarket. For larger distractions, I will pick up a problem from work, figure out a scene from something I'm writing, or some other kind of problem-solving activity. When I was younger, the exercises were mostly math and physics problems.

Same Foods

I generally don’t have as strong a link to Same Foods as many of us do, but it’s still probably more than normal. Once I've figured out the best thing on a menu, I can be talked into trying other things, but it probably wouldn't occur to me on my own.

Hyperfocus

Hyperfocus is a whole thing for me — both short-term and long-term. When I was younger, it was daily when I'd go head-down over a project for 12+ hours and forget to eat or even move. These days it is much less frequent, as I have set up good habits to help with it.

And yeah, I have trouble picking up new hobbies without going all-in and doing deep-dive research/learning on the topic. I don't really dabble.

Empathy

I struggle with empathy for irrational decisions and actions. I’ve gotten better about at least being able to find the chain of logic, even if I don’t agree with it, but I still have to really work to let it go. This is even more prominent if there is a power imbalance at play — I've been told I have an over-developed sense of justice.

The intersection with my trauma/attachment disorder makes it super hard to see someone say yeah, but I did it even though I knew it was a bad idea, because I wanted to and not want to just excise them from my life out of fear that irrationality will eventually be turned toward me.

Boundaries

I am very up-front with my boundaries, to the point that I'm told it can be disconcerting. An example would be that when asked if I want to go do a thing, I will front-load with exactly what the cost will be to me (emotionally, physically, etc), and ask the other person to affirm that my participation is still worth it. I'm also told that how I set boundaries is super black-and-white.

Anecdote: boundaries.

For example: My spouse once told me that I get a little too handsy when I am intoxicated. I have since picked up the habit of refusing to engage in physical affection if I have had anything to drink, and will even warn her that I'm about to have a drink, thus cutting off that avenue for the rest of the night.

Compulsions

Thankfully, I am not particularly affected by compulsions. I don't obsessively count things, or double- and triple-check things, or feel the need to touch or arrange things.

The closest compulsion-like thing would be the urge to jump into a conversation and correct someone, no matter how trivial the point. As mentioned before, this was a big problem when younger, but is much easier to let go of these days.

Social Issues

Honestly … I’ve never been able to disentangle autistic-trait-related social issues from attachment-disorder-related social issues and from all the social stuff I’ve had to learn how to do because I needed to seem normal. I really have to sit and figure out which parts of social interaction feel like I don’t have to put in any/much effort, versus which parts are just learned-masking (from, say, a childhood of doing community theater).

Friends

I feel like I'm a little better off than many of us. I can and do make and maintain friendships — but I’m picky enough to want symmetry in those relationships, so I don’t make new friends often. I don't find making friends to be difficult, scary, or intimidating.

Conversation

I would put my everyday conversation skills at occasionally awkward but mostly in the range of harmless-to-engaging, and not at the level of driving people away. Most of the time. When I was younger, I'm impressed anyone stuck around past the first sentence.

My few years as a university teacher really helped with this. I am now much, much better at actively engaging and including an audience than I was when I was younger.

Interaction

When I was younger, I would snipe at people to keep them off-balance and at a distance. Don't pay attention to me — look over there. I didn’t realize it’s what I was doing at the time, but it’s pretty clear now. This one also seems pretty intersectional with the other issues. I haven’t managed to completely erase this one, but it’s a fraction of what it once was.

Other Quirks

Multitasking

I have zero problems performing one task while engaging in one or more conversations, or consuming media, and I have really solid comprehension and retention while doing so. It took me decades to learn to visibly shift my attention to people, so they wouldn't feel ignored.

My spouse tells anecdotes of being horrified by our family dinners where all of us would maintain several ongoing conversations at once, often across the entire table. (But I'm the only one with autistic traits in my family. Riiiiiiight.)

Language Processing

When I listen to audiobooks and podcasts, or when I watch online videos, it's almost always at 2-2½x. I find 1x to be gruelingly slow. I actually have more retention problems at slower speeds like 1x, because I get bored with the pace and start multitasking.

Parlor Tricks

When I was in high school, I used to do all my Calculus homework mirrored (right-to-left and backwards), because I was bored out of my mind, and it was the only way to stay engaged.

My teacher outsmarted me, however, and simply put my homework upside-down on the overhead projector, and graded it through the back of the paper.

Meltdowns

Meltdowns, for me, rarely involve outbursts or physicality. Those are like once-per-decade rare.

On the outside, a garden-variety meltdown would look like either I’ve retreated inward and have just stopped processing my surroundings, or I’ve reverted to Analytical Robot Rick and have just given up trying to act like a Normal Person. The latter usually precedes the former, such that retreating only happens when I am really, really overwhelmed. But I will sometimes also be aware that I’m in Robot Rick mode, at which point I will intentionally go quiet, because I don’t want to (emotionally) hurt those around me, whether intentionally or not. I can see how it would be difficult to tell the difference between the two from the outside.

On the inside, a garden-variety meltdown can be a mix of the symptoms from the lists above. But in adulthood, it feels more like:

I need to shut down all my inputs, because they’re too much right now or are hurting me, so I can figure out or fix this thing that is wrong. Interaction with the world to help the people around me feel better just isn’t as important right now.

Usually, alone time in a quiet, dark place, without interruption, is enough to let me reset. Rarely, on the order of years, I may need to go for a drive for a few hours or even days.

My spouse can often tell I am compromised (sick, intoxicated, overstimulated, etc) before I can, because it’s easier from the outside to catch the “nice” parts of me as they drop away.

ADD/ADHD

Because my spouse is autistic and has ADHD, we’ve spent quite a bit of time talking about executive dysfunction and comorbidities with autistic traits. It doesn’t seem like ADHD applies to me:

Yeah, but how do you feel about all this?

I feel ... complicated.

Typing out all these points, I can't help but notice how there is so much focus on masking and passing. Which, intellectually, is understandable — everyone wants to be able to fit in. But emotionally ... it's not that simple.

I'm an adult, so I am capable of holding onto contradictory concepts at the same time:

That last point, is, of course, tricky, right? Many people won't ever have the option to pass, even if they want to. Is it internalized ableism to even present passing as an option?

I don't know.

I do know, from extensive personal experience, that not passing can be quite traumatic. Pressuring someone into traumatizing themselves, whether to "toughen up" or out of some show of solidarity, is abusive.

The older I get, the less concerned I am with passing. I also own the reality that I occasionally weaponize my differences to prove a point. Hypocritical? Maybe. Hypocrisy in the name of doing good? Also maybe.

Does that mean I should feel shame around all that I've done to be able to pass? No. It was my choice what to show and what to hide, and I will not be shamed for doing what I needed to do in the moment. I can, however, still lament everything I had to do to be able to pass. All the parts of myself that had to be put aside.

I can also acknowledge that forcing myself to think or act differently, in some cases, helped me to grow. It helped me to connect with people who otherwise were not ready to give me a chance. It helped those people see me, even if just some small part.

I think about my siblings' children — the next generation. Unlike me, they already know from childhood how many people will see them as different. They will still need to struggle against that perception and that bigotry, but at the very least they won't have the confusion I felt just trying to understand that social gap.

I would love for them to grow up in a world which recognizes the amazing breadth and diversity of human experience. Which understands there's not a "normal" modality for socialization and a "disordered" or "dysfunctional" or "abnormal" modality. Where they don't have the pressure to perform "normalcy" — to pass — and can instead enjoy experimenting with whatever social modality they prefer.

I don't think we're there, obviously. And a cynical part of me doubts we'll get there in my lifetime.

I wish the next generation wouldn't have to pass. But I'm not going to shame them for choosing to.