4:05am May 17, 2014

A reminder

I am one of those autistic people who can’t go outside alone, on my own, because other people will assume that I am lost, “wandering”, and call the police, at best. And will assume that I don’t know where I am, who I am, or what I am, no matter what I do to convince them otherwise.

I am one of those autistic people who is routinely assumed to have no thoughts at all, inside my head, about anything. People assume that I live in my own world and am not aware of the thoughts or feelings of others, at all.

In 2008, I went to the hospital with a bowel obstruction and one of the first conversations I heard was one medical professional telling another medical professional that my chart might have said I was 27 years old, but that I actually had the cognitive functioning of an infant.

People are always always always always always assuming that I have no thoughts, or no thoughts about anything other than myself.

Meanwhile, there are a lot of times in my life where I really do have very few thoughts, or very few of what other people would call thoughts. I spend a lot of time immersed entirely in a world that is sensory, not so much cognitive. This isn’t just by choice, this is what my brain requires in order to function.

I’ve spent time in a state where I was not only unaware of other people, I was unaware of myself either. I’ve spent time in states where I was unaware of myself, and only aware of others. I’ve spent time when I was unaware of others, and only aware of myself. I don’t think any of these states are bad or wrong, I just don’t happen to think that any one of them shows “what autism is” more than another does, so autism should not be defined by any of them.

I routinely have to fight off the assumption that someone like me should not live in my own apartment.

I routinely have to fight off the assumption that someone like me can’t think about other people at all.

The vast majority of autistic people reading this on the actuallyautistic tag, are not people that any of the above applies to. Yes, I know that some of you are. But the vast majority of you are not.

And any of you who are making assumptions about “those kinds of autistic people who really do only have the capacity to think about themselves”, you are making those assumptions about me, and about people just like me. Wonder why so many of us are pissed off at the idea that we’re in our own world all the time? It’s not because there’s something wrong with being “in your own world”. It’s because the idea is wrong more often than it is right. It’s the same reason that developmentally disabled people in general are pissed off at being considered childlike, it’s not because there’s anything wrong with being a child, it’s because we are not children and we are paying a daily, real-world, devastating price for the assumption that we are children. Meanwhile autistic people the world over, autistic people who can’t necessarily write on the Internet to defend themselves the way I can, are paying an equally devastating price for the assumption that they are locked in their own world, thinking about nothing but themselves. It doesn’t matter that it would theoretically be okay if the stereotypes were true, the stereotypes are not generally true and real people are suffering real consequences every day in every country in the world.

And some of you don’t give a crap about the consequences of your abstract philosophizing. You imagine people like me the way the rest of the world imagines people like me: You imagine that we really are “self-oriented” and that we need protection from anyone who would say we are not. You’re just as bad as people who say that intellectually disabled people really are children in adult bodies and that self-advocates who say otherwise are just the high-funcitoning ones who are willing to throw the real adult children under the bus. Just as bad. And just as out of touch with exactly who it is that you’re talking to.

Because if you saw me on the street I know that you would use the same stereotypes on me that you are carelessly throwing on others. And when you see me on the Internet, you assume that I’m somehow one of those people who mostly has it together and mostly passes for nonautistic and couldn’t care less about the ones you think you’re protecting. In other words, you’re slicing me in half in the name of protecting the real-world me from the Internet me. Being sliced in half doesn’t feel good. Being sliced in half feels pretty damn lousy.

And understand, I don’t care if you use the word allistic. All I wanted to do was make sure you understood what it means and where it really came from, because most people nowadays don’t have any idea of its origins. And for that, I actually get basically “Not Like My Child"ed BY ANOTHER AUTISTIC PERSON. Which is the height of… everything that is wrong with certain segments of these online communities.

But make no mistake about it… I’m the sort of autistic person who has to live with the consequences of the assumption that the more autistic you are, the more self-centered you are. I’m the sort of autistic person who needs services day in and day out in order to survive. I’m the sort of autistic person who gets picked up on the street because people can’t believe someone like me could be out on my own unsupervised. I’m the sort of person who actually does get stuck, easily, in a mode of thought where I can’t think in ideas, where I can’t make words come out (even in typing), where everything is a vast sensory world that I actually love and that isn’t always a bad thing but that can still cause me serious problems in being able to function in the world. I’m the sort of person who knows what "no-self, no-other” refers to.

I don’t claim words like severe or low-functioning because I don’t believe that’s a way that the autistic spectrum can be divided up. I don’t claim that my entire life has been the stereotype you’d expect of someone who, at this point in my life, all of the above applies to. But right here, right now, this is my life, and it is really fucking offensive to me when people assume I’m an NT-passing autistic person who doesn’t have to live every single day with the consequences of every stereotype that all of y'all are just busy debating in the abstract because it doesn’t even apply to many of you, most of the time, in the way it gets applied to me.

So just try to remember that not every autistic person you talk to online is the same? Try to remember that when you bring “those sorts of autistic people” into a discussion, as some kind of bargaining chip or abstract debate point, that some of us are actually reading what you write and thinking about it and being really pissed off at you for talking about us, to us, without us. That’s what has me upset, the sheer gall of bringing up “people like that” into an argument with me, when I’m exactly the sort of person who in real life is treated as “people like that”. With the assumption, the entire time, that I’m not only not “people like that”, but that I somehow could ignore the existence of “people like that”. I can’t. I live it every single day, I live my life among “people like that”, I probably know more “people like that” than you do, and I certainly get called a “person like that” on a regular basis. I have no choice, it’s how I look at this point in my life, that’s how people respond to me. (Everything about being a “person like that” is not about what’s inside you it’s about how other people see you.)

So please, try to remember that we’re out there, we’re all over the Internet, we read what you write, we often have well-reasoned opinions that disagree with yours, and we don’t appreciate watching ourselves get trotted out as a debate point in a debate against our own points of view. (Oh and we don’t all have one opinion on everything. I assume there’s someone who’s just like me in all other respects who disagrees with everything I’ve said here and elsewhere recently. That’s part of what being real human beings looks like.)

And people wonder why I sometimes prefer being stuck in sensory-mode, where people like you can’t follow me in even if you tried because you’re too stuck in conceptual idea-mode. It’s very refreshing to have a place that conceptual bullshit can’t enter.

Notes: