This is a personal description of some of what autism means to me. Because even among other autistic people such descriptions are too rare.
Autism means that my earliest memories are of floating in among the feel of things. Not how they looked or sounded, but how they felt. Words don’t exist for the hundreds if not thousands of variants on this. A way of perceiving the world that has remained dominant for me even after sensory input became stronger and, later, words and ideas. It’s the foundation that I always start from when I climb up the cliffs, day after day, that allow me to use words and ideas and move and understand what is around me. And no matter how high I climb, that underlying way of experiencing the world is still there.
A lot of people see this way of relating to the world as that old cliché of compensation. Where people think blind people’s hearing must grow more acute. I see it differently. It’s a way of experiencing things that could only have developed if more typical ways were absent. There are a lot of plants that cannot grow in the shade of a forest. But if there’s no big shade-producing trees, they flourish. It’s like that. Many of my experiences and abilities stem from what happens when plants can flourish outside the shade of a forest.
I can spend all day with one marble. Looking at it, feeling it on my face. One problem with trying to describe this is that there are far more possible sensations than there are words for sensations. So an entire day’s worth of experiences can come out to only one sentence. And it’s harder still to describe the patterns formed between those sensations. Not abstract, logical patterns but concrete, sensory patterns. And those are how I understand and interact with the world.
My first comfortable means of communicating came from that. It had to do with the way I interacted with and arranged objects. It could be anything from tree bark to a book. And if someone knew what to look for, and understood the patterns the objects formed, that would lead them back to who I was. Only a couple humans ever figured it out though.
Objects have always been alive to me, and my interaction with them has always felt like communication. Weirdly enough, this has inspired anger in other people. And an intense, condescending need to try to teach me that the whole world is dead and I’m an idiot for thinking I can communicate with things. Someone once said to me, “The way water responds to you is the laws of physics, not communication.” I ignored him, but I wanted to ask how exactly those two things were different. I seem to come with an entirely different set of assumptions about the world than most people do.
The older I get, the more I realize there are huge gaps between how I see the world and how others do. Sometimes it’s a matter of my not getting a basic idea until I am older than normal. Sometimes, like the living objects, it’s more a huge difference of opinion.
An easy example is object permanence, the stage where a person learns that a thing that is hidden from their senses is still there. I can remember not having that skill at a time long after most people get it. And even now, it is tenuous. If I have climbed up into the realm of intellectual knowledge, it is usually there. If I am unable to climb up, it is usually not there. I’ve starved within a short distance of food before because I didn’t know that cabinets and refrigerators had anything inside them. I had to begin leaving bags of rice cakes and jars of peanut butter around the house so I could eat when I found them.
Because of a similar problem, I sometimes have a horrifying experience when I am overloaded and I turn around. Everything disappears and a whole new set of things appears. This scares me and hurts my brain.
The holes in what I’m aware of are sometimes things I can close more or less permanently. I no longer believe I have several identical houses and several identical families. Others, like object permanence, seem to depend on cognitive skills that I don’t always have.
Which happens because my skills don’t continue to exist all the time. They change constantly based on factors I only somewhat understand. So I don’t have a constant skill level in any particular thing. Instead, I have a bunch of skills that move up and down all over the place.
It’s like there’s a basic ground level I start with. Which is generally far below the ground level of most people. And then I have to climb to get to abilities like language, idea-based intellect, and things like that. It’s like climbing a cliff, not walking down a hill, so if I let go or stop concentrating then I can end up back on the ground again. Sometimes I can’t climb the cliff at all, or only a little. And sometimes I shut down and the ground falls out from under me and I lose even my normal baseline skill level.
As for my normal baseline. It means not having much intellectual idea-based thought. Not even the “simple” ideas like “house” or “leaf”. It means a way of experiencing the world that mixes sensory input with a general feel of how things are. It means missing basic concepts like identity. It means not understanding language, or that language ever existed. It means trouble connecting with and moving my body, but possibly being really good at moving if the movement is triggered by something outside of me. It means being unable to recognize or differentiate objects. And most of all it means experiencing the world in ways so different from how people normally experience it, that it’s really hard to communicate about it in language. Especially to people who don’t naturally experience things this way.
But people who do experience things this way are another matter entirely. Most people I’ve met through the autistic community don’t experience things like this, but a sizable enough minority do, that I’ve had the chance to interact with people like me in these regards.
It’s totally different from the nerve-wracking experience of communicating with nonautistic people. It’s even different from the relatively easier experience of talking to autistic people who differ from me a lot. It’s easy. Very easy.
I see their emotions. Several levels of emotions. And they see mine. I see a lot of where their attention is focused, and what they are perceiving. They see all of this too. Communication is instant and nonverbal. We may not be picking things up the same way nonautistic people do, but we are nonetheless communicating easily and nonverbally.
This is wonderful to me, because it’s otherwise so hard to communicate. Words are hard to correlate to experiences that are entirely out of the realm of ideas. It’s hard to understand language. My whole natural way of experiencing the world is beneath words, beneath ideas, beneath the things most people call thought and experience.
And to meet someone who has that awareness beneath typical awareness, means that we can communicate very well beneath all that. And that’s a joy, and a relief, that I’d already given up on hoping for, long before it happened.
When the ground falls out from under me, which it does often, I can fall so far under the ground that things are very different. The world can disappear. Even the most basic sensory modes of thought vanish. And I can’t control my body at all. I must be aware of something, because I remember these times. But what I’m aware of, I don’t know.
So my range of skills is very broad. From the abilities I’m using to write this, to absolutely nothing. And they’re constantly in flux within those ranges.
You’ll notice that I haven’t mentioned social skills. That’s because I don’t think autism is fundamentally about that. It’s about differences in sensory perception, cognition, and movement. And the way they interact and blend together. The social problems are out on the periphery — either distant outgrowths of the three areas I mentioned, or the result of two people meeting up, who have incompatible ways of understanding and interacting with the world. The place where their patterns of understanding and reacting meet is the exact location of any social skills difficulty. Neither one can read the other very well, yet if you listen to the “experts” it’s solely the autistic person’s problem. I do have big social problems, I just don’t consider that the main part of autism.
And always remember. Autism is not a thing. It’s an abstraction. The only concrete reality is the existence of the people who get called autistic. So when I say what autism is, I mean how my particular brain, that is called autistic, works.