7:16pm February 8, 2012

➸ The Sensual Aspie: I am SO sick of people being offended when I say anything negative about autism.

b0jangl3s:

There are parts of autism that SUCK. Point, blank, period. Parts of it fucking blow. It sucks that my little brother can’t talk, communication has a BARRIER with him obviously. It sucks that people look at him differently. It sucks that he screams and hits and stays up all night…

As an autistic person, I think it’s ok for non-autistic (aka “allistic”) people to bitch and rant about their autistic family members because we (meaning autistic people) do the same thing. We bitch and rant about you so you should be able to bitch and rant about us. HOWEVER, I take huge offense at people who say that people with Asperger’s aren’t “really autistic” or whatever. Just because we (meaning those with Asperger’s) can talk, doesn’t mean we still don’t understand what it’s like to be non-verbal. Under a lot of pressure, I can go non-verbal a little bit.

I’m coming into this discussion without having read whatever sparked it. Mostly because I wanted to talk about assumptions that two people seem to be making, both of which I see a lot.

Writing this took a long time. My particular variant on autism (and nope, it’s not Asperger’s) can make it incredibly hard to leave out details. I apologize for the length though. If you can’t or don’t want to read the whole thing, my best attempt at a summary occurs after a line of bolded equals signs, like this:

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There’s all kinds of understanding, and I think it’s a little more complicated than that. Although, not in the way that a lot of nonautistic (and some autistic) people think, so please nobody take me as saying “It’s totally impossible for you to understand anything about someone who’s nonspeaking” or agreeing with the OP’s idea that none of us who disagree with them can understand.

But about understanding what it’s like to be nonspeaking. That’s really complicated.

A person who occasionally loses the ability to speak during shutdown understands some things about not being able to speak. But depending on their history, they may not understand what it’s like growing up unable to speak.

I know what it’s like to grow up with only occasional and partial ability to communicate in words.

I however only partially know what it’s like to grow up unable or barely able to speak. I have had one part of that experience – the inability to communicate in words. And that experience is an inner experience of autism itself that is mostly the same as someone who grew up unable to speak.

However. My experience is also different from them. Because I was, after a time, able to treat speech (and writing) as a puzzle to be solved, or a game with incredibly high stakes. I had limited understanding of what the words meant, a lot of the time. And the words were not reliably connected to true communication. But I developed such good skills at mimicking a normal use of words that most people thought me a good communicator. It took a trained psychiatrist and speech therapist, with specific information about autistic people whose receptive language was more delayed than (apparent) expressive language, to work out that most of my “communication” was not me turning my thoughts into words, but rather me arranging words in ways that sounded more or less appropriate and coherent. Oh and some autistic people could pick up on it too.

What that difference meant was less about inner experiences of being autistic, and more about how the world treats people. People who can’t speak or can barely speak will be treated as incompetent by the world almost always. People who can speak may be treated as incompetent, but are more likely to be treated as competent or even gifted. Even though the experience underneath the surface is the same (inability to communicate), the experience on the surface is incredibly different. This is because most people, even most professionals, look at our surface appearances and not at our internal experience.

So I understand the inner experience of growing up unable to talk, but I don’t necessarily understand other parts of that experience, because I had such a big advantage in how I was treated by others. At least up until my facade started breaking down, but that’s a whole nother story.

There’s also, as I talked about earlier, a difference in terms of the circumstances and time span of how we experience inability to talk.

You talked about losing the ability to talk occasionally during speech shutdowns.

That’s going to be a different experience than my current one. I know because I used to lose my ability to talk occasionally. As my movement disorder (“autistic catatonia”) progressed, I eventually completely lost my ability to talk. I’m now in the same situation as many autistic people who always have been nonspeaking, in that I have no communicative speech, little bits of echolalia, and very occasionally – like has only happened a couple times – a completely perfect sentence will happen and then no speech at all afterwards. (An experience that one man asked an audience of parents of nonspeaking adults if this ever happened, and all of them raised their hands.) The only difference between me and someone who’s never spoken is whatever carryover I have from the advantages in my background. In terms of our current speech situation it’s pretty identical.

Not ever being able to speak is different from occasional speech shutdowns. Because there’s having to adjust to it emotionally. There’s being like this in all situations no matter what. There’s areas where I actually have an advantage in that I’ve come up with and tested lots of strategies for dealing with these situations. There’s the fact that I’m treated, full time, like a person who can’t speak. And there’s just a time duration that makes the experience quite different.

At the same time, there are things that are the same. There’s plenty of things about being unable to speak, both inner experience and outward treatment, that don’t change much depending on how long it takes. Both people know what it’s like to try to say something and have nothing come out. Or to be totally cut off from words. Or whatever form that speech loss actually takes, which can vary person to person. There’s the fact that people generally treat you as incompetent, or sometimes as if you’re just being rude.

(I have a friend who went nonverbal on a bus recently and got screamed at by a guy who thought her lack of reply meant she was racist. And you can’t blame the guy for thinking that yet being screamed at in her face while already overloaded made her shut down in terrible ways for the next day or so. She’s planning on getting autism cards to hand to people if it ever happens again.)

There’s also something that from the outside is a subtle difference, but from the inside creates an enormously different situation.

So you’ve got people whose baseline state is being able to talk, and who sometimes lose that ability. And you’ve got people whose baseline state is being unable to talk, but who are able to “climb up” into the land of speech at least some of the time.

Two people might have almost identical amounts of time as speaking and nonspeaking. And yet have incredible differences in how that speech is experienced.

Imagine that speech means being above a certain altitude. Now imagine someone who lives in a location where the ground is at that altitude, and his house is there. And imagine someone who lives five hundred feet below that altitude, and her house is at the base of a cliff that goes up a thousand feet or so.

The woman who lives at the lower altitude has to climb up a sheer cliff to get to five hundred feet. Sometimes she cannot make it at all. Often she falls. Sometimes she gets to five hundred feet. But even as she gets there, she is hanging by her fingertips. It’s not home to her. The route up has grown familiar enough that she can often get up there. But you just can’t be comfortable hanging off a cliff, and there’s no way to climb to the top. And it’s not possible to hang there indefinitely. It’s painful and exhausting.

Then you get the guy I talked about. He’s standing on firm ground at five hundred feet. But there are holes in the ground that can’t be seen easily. He sometimes falls in those holes and becomes unable to speak. Sometimes he gets injured and can’t climb out until he recovers, so he can’t talk for awhile. Other times he comes back up reasonably quickly.

The man does not have the experience of living at a very low elevation. So he doesn’t know what it’s like for “home” to mean inability to speak. He doesn’t usually, unless having trouble climbing out of a hole, experience speech as the precarious thing the woman experiences. The woman doesn’t know what it’s like to speak with her feet on firm ground. She always has to divert a huge amount of energy to not falling. She does not know what it’s like to live at, or even near, the level where speech is. Her “home” is a world without speech.

Those aren’t the only possible experiences. And it’s possible to stretch the analogy a lot further.

There are people who live at elevations somewhere in between the woman and the man. Who find it easier to get to speech than she does but harder than he does.

There are people who might live at an elevation of four hundred feet, yet have no access to either a hill or a cliff that allows them to climb that distance up to speech. This creates a very interesting situation. They cannot speak as well as the man. They speak (or experience modes of thought that lead up to the ability to speak) better than the woman does when she is at home. But they speak worse than the woman does when she climbs over them. This means that depending on what moment you catch her, the woman can either seem a bit more competent than them, or far less competent. They may not be as good at it as her at her best, but they have no conception whatsoever of what it is to experience her life when she’s down on the ground. Except possibly in brief glimpses when (if) they fall into a hole.

There’s people who spend a certain amount of their life at 500 feet but move down to 200 and can’t move back up, and people who do the opposite. And people who once lived near cliffs or hills, who move to flat land, and people who do the opposite.

That difference I mentioned between living somewhere and climbing up higher, and experiencing that place only when you fall into a hole, is huge.

For instance (this is not at all about speech), I “live” at a level where there’s no comprehension of language, or even understanding of what language is. There’s also no conventional understanding of my environment. No identifying objects, often not even differentiating them.

I know people who “fall into” a similar state during shutdowns. They experience this as severe disorientation. They can’t understand the world at all when this happens. Many parts of their lives just come to a screeching halt until they “climb out” of there.

On the other hand, this being my home, I’ve developed all kinds of ways of understanding the world without conventional understanding. I’m pretty adept at sensing patterns within the chaos and responding to them. It’s pretty instinctive for me. It’s certainly not the same as my life when I climb up higher, as I have to do in order to use tumblr. But it’s not a life put on hold, and it’s not total disorientation. It’s also where I’m most comfortable, I honestly feel more disoriented having to navigate the world of ideas and concepts that most people live in, and to return “home” feels more restful than stressful.

Meanwhile there are people who have impairments that don’t allow them to ever use concepts as well as I do at my best. Yet their abilities are quite stable, so they also never see the world I inhabit at “home”. So there’s no simplistic way to say one of us is uniformly better at things than the other, it’s complex. That’s the equivalent of a person living on solid ground at 400 feet.

So those last few paragraphs were just trying to illustrate what I’d already said about speech. They’re not about the same skills as speech, although they can affect them. They’re more an analogy.

And then back to speech. There’s not just differences in the amount of speech ability, there’s also differences in the kind of speech ability. Different people have different skills at each, and it’s not easy to come up with simple comparisons because the type of thing being discussed is so different.

And… so I’ve talked about different skill levels at speech and how those skills affect how well two people might understand each other. But that’s not all of it.

One, you can’t always tell which understanding of communication a person has by looking at the surface. If you took my speech, when I had it, and used it to put me in the same category as someone with good, communicative speech and little to no receptive delays, you’d be talking about two very different people with little in common other than the superficial act of using speech. If you used my speech at that time to distance me from the experience of not being able to communicate most of my inner thoughts and emotions, you’d be wrong too. I could communicate a little but most of it went unsaid, and a lot of what I did say was just copied from books or other people. You’d be right to say I had advantages but wrong to say I had good communication. And you can’t look at two nonspeaking people and say they definitely understand each other either. There are many versions of inability to speak, and some people without speech communicate better than some with speech.

But really, one of the most important things in my eyes, is that even if you know exactly what skill level two people’s speech is at, and know that it’s either similar or different… speech is only one part of autism. Even when two people do not at all understand each other’s experiences with speech, that does not mean they don’t understand each other in most other ways. And the reverse is true as well: Understanding speech experiences between two people doesn’t mean they understand anything else about each other.

So not only can’t you tell by looking whether two people will understand each other about any particular skill, you also can’t tell whether two people’s level of understanding with one skill means they understand anything else.

Personally, when there’s another autistic person I understand well, it’s always about inner experiences of the world, not outward displays of skill. It’s about what’s happening inside, not the surface.

For instance, just about everyone I relate and communicate with easily, has the experience of their “home” being a lot like mine: Poor receptive language. No conventional understanding of environment. Very sensory way of experiencing the world. No ideas or concepts, even supposedly concrete ones. Poor body connectedness and yet often a very kinesthetic way of connecting to the world. Weird or nonexistent sense of time. And above all a mind that has, living in a place like this, discovered ways of navigating this world that few people know exist or can even imagine. And this existing for a long time, not just until they were five or something.

People might imagine they know what such a person would look like but they would be wrong. People like me can live near cliffs or out in the middle of the plains. We all have different climbing ability. And both locations and climbing abilities can change throughout our lives.

So we can be people who never speak and people who never shut up. Same with writing. Our word-based communication can be either real or fake and everything in between. We may rarely move, be very “stimmy”, or move almost normally. We may never go to school, go only to special ed, or have graduate degrees. We may be engineers, poets, artists, writers, just about any profession or lack thereof, although even those of us with the “best” jobs are generally prone to burnout given the amount of “cliff climbing” such things require. We may self-injure severely or not at all. We span every spectrum diagnosis and every purported functioning level, and every combination of the traits I listed. And, because of the effects of climbing and falling from cliffs, we may occupy different parts of the ranges I described at different times in our lives… or just on different days.

My variant of autism is not the only one that works like this. A lot of them do. I’ve met autistic people who have never spoken whose inner workings are far closer to the “aspie” stereotype than I will ever be.

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My point in everything I just described:

1. It’s impossible for anyone to accurately say, “You can talk/use the Internet so you don’t understand the autistic people I know.” Sometimes people can appear extremely different yet the distance between them is little more than a hair underneath.

2. But saying you understand what it’s like to be nonverbal long term because your speech sometimes shuts off can be iffy too. Maybe, but maybe not, depending on a lot of other factors.

3. It’s important to understand both the differences and similarities that do exist, even when it may seem more of one than the other. Even superficial differences can affect our lives greatly, mainly because of how others treat us.

4. Judging as a whole whether someone is similar to someone else, based on superficial factors, is damn near impossible. Real understanding between two autistic people happens because of our experiences deep down inside of us, not because we look the same to people on the outside.

I also haven’t said the following yet at all:

Sometimes these differences of opinion about autism happen because of things other than whether one person understands a particular other person’s life or not. Sometimes they’re due to completely different worldviews when it comes to disability. That can cause people to view even the most obviously painful and nasty conditions in a different light than usual, let alone things like autism which pretty much always have both good and bad sides.

Again, I wasn’t there for the initial conversation that sparked this discussion, though, so I’m responding to people in this discussion only.

Notes: