4:36pm July 15, 2014

Distance and denial in the autistic community

Years and years ago, I was living on my own for the first time, and I wa starving. I have told this story before, and I apologize to those who knew it – there’s a serious point to my telling it again, a point about what the autistic community denies about autism sometimes. This post is going to be very long, I’ve put most of it behind a cut. I apologize to people who can’t read long posts. I may attempt to summarize it later, but I may find that impossible due to my language problems and exhaustion (right now I can’t even read my own post).

I could feel my bones painfully poking into anything I touched, while sitting or lying down. My ribs poked into the bed, my butt bones poked into anything I sat on. I was in my first ever apartment and quickly learned that I had no daily living skills. Cooking, eating, bathing, toilet use, cleaning, all fell apart. I could do half of a skill per day, kind of. And that wasn’t enough.

With everything falling apart, all of my autistic traits went into overdrive. I froze up constantly. I couldn’t find my body and needed help to find it again. Visually the world just looked like random shapes and colors or sometimes just pixels. I had more speech trouble than usual: I lost speech more often, and when I had it, it often got so severely slurred that people couldn’t understand a word I said. My sensory world was simply a jumble. Things cognitively sort of slid in and out of view. Like there were no ideas, just sensory experiences, and then there were ideas again, and it blipped in and out of my consciousness. It was hard to hold onto thoughts.

And things got weird, like I’d get lost in my own house, it had only two rooms besides the bathroom and they had a giant window in between them. Sometimes I’d fall over because I’d lose track of which way up was, and then I’d try to push myself “up” only to find that I was trying to walk on a wall or something.

I’d also find that my body would rush around the house on its own, without consulting me. I’d run through rooms, touching things, stopping to bounce or jump or rock, sometimes weird noises coming out of my mouth, and I couldn’t do anything to stop this when it happened.

I remember peeing in the front yard, and on the living room floor.

I only survived this because of two main people. One person would get on the phone and endlessly prompt me through the process of moving my body enough to get food. Sometimes this took all day long. The other is Fey, my cat. She rapidly figured out a sequence of physical prompts to give me in order to get me moving and connected to my body, she remains the only person who can do it as efficiently as she can. I’ve tried to train humans to do it and they just don’t have the intuitive grasp of my body that Fey does.

Anyway, at the time this was going on, I sometimes described myself as “low functioning except semi-verbal” or “the only thing differentiating me from a low functioning person is that I can talk sometimes” or “low functioning but verbal” or other things like that. I didn’t like functioning labels even back then, but it was the only way I could convey the enormity of the situation.

And with regards to those verbal skills… I actually lacked the words to tell people what was going on in my house. I tried many times to write out what was happening to me and failed. It took me about seven years before I was able to summarize what had happened, in the way that I have here. I could only tell people snippets and pieces.

But there were a lot of people I wasn’t telling even what I could tell, because I didn’t want to get evicted or end up in an institution.

During this time, my experiences with the autistic community were less than stellar. And that’s really what I want to write about. Because I see the same shit happening now.

So there was a local support group. And as much as I hate to generalize again, my mother summed up my experience of the support group as “It was entirely people with Asperger’s and they didn’t know what to do with an autistic person.” Which is… not how I would put it. At all. But she was trying to sum up an actual truth about the group, so I’ll give her a pass on language.

They did not get it.

To say they did not get it is the biggest understatement in the history of the universe.

I tried, tentatively, to ask for advice about how to survive. How to do the basic basic stuff of survival.

They were mostly people who had only minimal trouble with daily living skills, if any. Their troubles were more like, how to get through a job interview, and how to keep the job if you managed to get through that, and mostly people talked about social skills all the time.

I have as many social skills problems as the next autistic person but that was so not my priority right then.

Anyway, I asked.

And their responses were things like:

“But that’s easy.”

“Why don’t you just…” followed by something so far above my reach it wasn’t even funny.

“But how can you have trouble with that?”

There was one other person there who seemed to have more trouble with everyday stuff than usual. She lived in a group home, and I believe she was the only other person there who was ever a Regional Center client during that time frame, besides me. She was trying to work out how to use the transit system, and I tried to help her. Even though it was not either of our strong point, we were trying to figure it out together. They shushed us for being “off topic”. I noticed she and I got treated different than other people there. They never liked the topics we brought up, which were almost always pressing practical problems we needed to solve, and that they had no comprehension of.

And how I felt…

I felt like I was living in this swirl of sensory chaos, and that only with the greatest effort could I climb out of it and make meaning, and convey that meaning to other people. And I was hanging on by my fingernails, I had blood and scars and bruises everywhere from the effort it took to get up to anywhere near the level that these people were at.

And then.

They didn’t even acknowledge the distance.

They couldn’t.

Because to them, they were standing on solid ground. There was nothing beneath them except the ground.

Put it another way: I was climbing from a skill level of zero to a skill level of twenty just to get anywhere near them. They thought skills started at forty — that was their zero. They could not conceive of anything below their zero, much less the scars and bruises and blood that come from climbing all that way just to shout up to them and not be understood in the least bit.

I stopped going to the support group. I needed all my energy just to survive, and going to the support group was extremely draining under the circumstances. And I got nothing out of it. My brother on the other hand — who is my complete opposite, autism-wise — has really gotten a lot out of the same support group, and I’m genuinely happy for him about that. He’s made friends there and still hangs out with them to this day.

Anyway, I think large parts of the autistic community still have trouble conceiving of the experiences of people like me. Although I’ve done my level best to change that over the years. Especially since for every person like me who manages to make the climb and shout up to everyone about what it’s like down here, there are probably a hundred who can’t. Or who can only partially do so. Or who could, if they had the energy and time, but choose to expend that on things that are more a priority in their lives. So I have done my damnedest to tell people that people like me exist.

People like me isn’t a functioning label and it’s not a diagnosis, it’s just people who have certain experiences of autism that are, in many parts of the autistic community, a minority. There have been, over the years, small pockets where we’re a majority (those pockets really confuse people used to the usual autistic communities), but that’s not normal at all.

The thing is, my experience of the support group is the same experience that lots of autistic people have in the autistic community. They’re the ones who often don’t come back to events after the first time, or end up in the fringes. Or who somehow (often accidentally) fight their way into a position of prominence but get treated like an exception — that’s what I’ve done, more or less.

And that doesn’t just go for people with my ‘type’ of autism. There’s a lot of experiences of autism that are under-represented or not represented at all in the autistic community. And sometimes that feels deliberate, it feels like we’re not even quite wanted. Or we’re wanted when people can point to us and say “See, we have Those People here too, we’re inclusive,” or “See, some of Those People agree with us,” but our actual experience of autism and the world makes many autistic people uncomfortable.

It’s strange, too, the kinds of denial that go on.

Like… there are autistic people who absolutely don’t want to believe that there are people out there who have the thought pattern of a stereotypical aspie but are nonverbal and unable to care for themselves due to severe motor planning problems. They want to believe that all nonverbal people are nonverbal because of severe cognitive impairments.

Then there are people who do the exact damn opposite. They don’t want to believe that there are people who could never conceive of a word, let alone use one. People whose entire experience of the world is sensory rather than conceptual. Worse, that some (not all, by any means, but this really does happen) people are perfectly happy that way. They want to believe that all nonverbal people have the cognitive skills to communicate in words if only they could find a way to get the words out.

And they don’t want to know about people like my friend. Who clearly understands language, who clearly has things she wants to say. She also understands that you can use picture cards to communicate, so she hands you random picture cards, getting more and more frantic because you’re not getting what she means. Because she isn’t handing you picture cards with her thoughts on them, she’s just handing you picture cards and hoping that somehow her thoughts will come across. She does the same thing with typing, she types random letters and gets upset when they play back gibberish on communication devices. She knows what to do, but there’s some disconnect that doesn’t allow her to translate the ideas in her head into a communication system that most people can understand. And she is so frustrated by this that I’ve seen her create gashes in her skin with her fingernails after several failed attempts to use communication devices or picture cards.

Her teachers at school thought she wasn’t “motivated” to communicate. I’ve never seen anyone more motivated. She even devised entire ways of communicating, from scratch, that allowed her to get her point across in very nonstandard ways. Her teachers hated this because they thought it prevented her from having the motivation to learn PCS or typing. They didn’t get that she was plenty motivated, and that the entire reason she created this other way of communicating was because PCS and typing were impossible for her.

There are autistic people out there who don’t want there to be autistic people who find it impossible to use a communication device of any kind.

There are autistic people out there who don’t want there to be autistic people who have to make the climb from sensory to conceptual every time we need to communicate, and who can’t always make the climb (some can’t at all).

There are autistic people out there who don’t want to believe that there are people who can’t take care of themselves — or that there are “intelligent” people who can’t take care of themselves.

There are autistic people out there who don’t want to believe that there are autistic people with cognitive impairments that prevent language in any form.

There are autistic people out there who still say “aspie community” and “HFA community” and “HFA/AS community” and refer to everyone present as AS or HFA/AS and have no idea at all how that affects those of us who are not and will never be labeled HFA or AS or aspie. They just assume that if anyone’s present and able to comprehend what’s going on, they’re ‘high functioning’.

There are autistic people who don’t like functioning labels, not because they’re inaccurate, not because they’re insulting, but because they want to deny the very existence of the wide variety of people who get labeled 'low functioning’ who are inconvenient to their vision of what autism is or should be.

There are autistic people out there who don’t want to believe in all kinds of autistic people who are very real and very much exist. I feel fortunate in a way that the autistic community is not my only experience of autistic people, because when I see the generalizations made by some people in the autistic community, about “what autistic people are like” or “what autistic people want”, I want to gouge my eyes out.

Especially when they’re giving glib advice to parents like “Your child doesn’t communicate because you haven’t given them a communication device” as if it’s that easy. That’s insulting, is what it is, especially if you’ve taken no time at all to get to know the family in question. And it only increases the image of online autistic people as completely out of touch with certain realities about autism.

And yes, I know there’s lots of exceptions to what I’m talking about, lots of people who really do get it. But there’s also lots of people who don’t get it. And that’s why, right now, I’m trying yet again to describe the distance and the denial and the distance.

So much distance. So much denial.

And there’s a lot of people for whom the distance is even greater than it is for me.

And if you don’t think that sometimes, autistic people who feel this distance don’t get together and talk about it, whether verbally or otherwise… think again, because we do. There’s lots of autistic people who feel shut out of the autistic community because of a lack of recognition of the distance we have to travel to take part in it. And you can’t always tell who is who by looking — at least not at the things people normally look at to tell apart different types of autistic people.

But the distance is real, and so is the denial of our existence on some really basic levels. And it hurts.

Also, if you think that people who can’t conceptualize things in the idea world aren’t hurt by these things, you don’t know how sensing works. (I’m just going to use Donna’s term “sensing” because it’s easier than making up a term of my own. It’s a word for a way of comprehending the world that comes before and operates entirely outside of idea-comprehension. It’s based in sensory and pre-sensory experience and the patterns those things make. Sort of. It can’t easily be described. She wrote an entire book on it and still couldn’t describe it well enough for some people to get the idea.)

Anyway…

When I’m unable to do ideas at all. When I’m purely in the sensory world and everything is just a garble and I can’t even conceptualize the idea of putting together the garble and pulling meaning out of it. Let alone actually do it.

I can still feel resonances, with people, with objects, with anything.

I can feel when someone is trying to put hooks into me and pull me in ways I shouldn’t be going naturally.

I can feel when someone is lashing out with little spikes that jut out of their sides and poke me.

I can feel when someone is a brick wall.

I can feel when someone is trying to manipulate me.

I can feel when someone doesn’t believe in my existence, even though… those aren’t exactly the words for it, because “doesn’t believe in my existence” doesn’t translate through to sensing, but something does because I feel it.

I can feel all those things and more. In fact, when I’m in sensing mode most fully, I can perceive more things about people than they want me to perceive, because I’m going on extremely accurate and basic instincts. People who have only intermittent access to standard 'mind’, and much more access to sensing, develop sensing to a level that allows us to get a lot of information in very nonstandard ways.

And we can feel things. And we can feel people. And we can feel them more acutely than you feel things when they’re filtered through mind.

So even when, for instance, I don’t understand immediately that someone has walked up to me and said “ree-taaahhhhhhd” and flapped their hand against their chest a bunch of times. Even when I don’t have the ability to understand the significance of the word or the gesture or the meaning. Even when I’m totally unable to understand that sort of thing at all, the word, the significance of the word, the meaning of the word, any of it?

I feel the hostility, I feel the mockery, I feel as if I’m being stabbed in the side or the chest. I feel all of it. I feel it more acutely than I would feel it if I could understand what was going on.

So don’t ever. Ever. Ever. Sit by and do nothing when someone says “It’s okay if I mock him, he doesn’t understand.” Because first off, he probably does understand. But second off, even if he doesn’t understand the words, he can damn well understand the feelings, and probably more acutely than you can.

I don’t just feel the obvious things either. I feel people’s discomfort with the existence of people like me. I feel people’s attempts to cover that discomfort with various illusions of being comfortable with me. I feel people’s disbelief. I especially acutely feel that thing people do where they exchange knowing glances over the top of my head, sure that they have understood something that I don’t and will never understand – and I can feel that without ever seeing the glances being exchanged. (Think how parents look at each other over the head of a toddler and you’ll be close.)

So when thinking of people who don’t conceptualize the world at all like you do. Don’t assume we don’t feel. I say we. I’m not a person who is permanently stuck in sensing. But I’m a person who is very sensing-dominant, for whom interpretive thought is secondary even when I do well at it. And that gives me the ability to convey experiences that not all sensing people are able to convey in words. And it gives me the ability to tell you that it doesn’t take fancy concepts to be able to feel things.

I used to get so angry at this one parent-advocate who fancied herself a champion of the low functioning. She was fond of saying stuff like “There are autistic people who don’t even know what 'freedom’ means.” My response has always been, you don’t need a concept of freedom to feel when it’s taken away from you. And you don’t need to understand the words people are saying, the concepts they are using, in order to sense how they feel about you and be harmed by it. The exact experience of being hurt is very different in many ways (too many to describe) between conceptual thinking and sensing – but it still hurts, either way. You still feel it. And it feels awful. And with sensing… you can’t easily conceal it from the person, they will feel it.