4:41am November 7, 2013

Low resolution versus high resolution communication.

And you wouldn’t believe how long it’s taken me to write this.

Communication problems go well beyond “I am able to communicate in words” versus “I am unable to communicate in words." One thing that gives me a lot of difficulty communicating with people, is that I have different levels of detail that I can communicate in at different times. Those different levels of detail create a lot of assumptions that it’s hard to break free of.

I’m going to give some examples of the different levels of detail, and after I’m done, I’ll describe the effects this has on my communication and other people’s assumptions. Fittingly, the subject of communication will be communication itself: In this case, my ability to speak versus my ability to type.

I tend to call this low resolution communication versus high resolution communication. Low resolution has less detail, and high resolution has more detail. This is related to computer graphics which are described in terms of their resolution. An extremely low resolution may just look like one giant slab of a single color with no details at all, a slightly higher resolution will look like big chunks of colors that you can barely make out what’s going on, a slightly higher resolution will look like a fuzzy version of the image, all the way up to an extremely high resolution which will look like a very detailed image indeed where you can see every tiny detail.

So here’s my description of my spoken versus written communication, starting with 1 (low resolution) and going to 6 (high resolution) and everything in between:

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[I can’t speak] OR [I am nonverbal] OR [I am nonspeaking].

I can’t use speech for communication. But I can use typing for communication.

My ability to create spoken word sounds is disconnected from my ability to connect words to my thoughts. But my ability to type is less affected by that problem.

My ability to create spoken word sounds varies a lot. Sometimes, I can’t make any sounds at all. Sometimes, I can only make sounds that aren’t words. Sometimes, I can only say certain kinds of words. Sometimes, I can create many types of words.

But even at its best, my speech (as meant to accurately communicate information) is highly limited. I can say things like "uh-huh” and “uh-uh”, and make noises that relate to emotions. Sometimes I can use swear words and other exclamations of emotion. I can sometimes even sing, because that is simply a repetition of specific sounds at specific pitches, rather than words come up with on the fly and intended to communicate specific things. And occasionally I can even read out words that are typed somewhere, but that usually causes me brain-splitting pain and eliminates other abilities that are more important. What I can’t do, is create words out of my mind, and connect those words to my thoughts for the purposes of communication.

I have similar problems and variations in my ability to use typed language. However, my typed language is virtually always better than my spoken language, and I am obviously able to type out information much better than my ability to use spoken information, either with lots of preparation or on the fly. Because of this, I use typing and (if I can’t type) picture symbols and other non-word communication, to communicate, with a small number of vocalizations added in.

But even at its best, my speech (as meant to accurately communicate information) is highly limited. I can say things like “uh-huh” and “uh-uh”, and make noises that relate to emotions. Sometimes I can use swear words and other exclamations of emotion. I can sometimes even sing, because that is simply a repetition of specific sounds at specific pitches, rather than words come up with on the fly and intended to communicate specific things. And occasionally I can even read out words that are typed somewhere, but that usually causes me brain-splitting pain and eliminates other abilities that are more important. What I can’t do, is create words out of my mind, and connect those words to my thoughts for the purposes of communication.

A couple of times since I gradually lost the ability to speak (over ten years ago, but I’m not sure quite when because it was gradual, not sudden), I have been able to speak for short durations. In one case, it lasted minutes. In another case, it lasted a couple of days, on and off. When it lasted minutes, my speech was limited and not anywhere close to fluent. When it lasted a couple of days, my fluency went sharply back and forth from unable to speak to being able to speak in sentences. My accent, tone, and other aspects of speech varied radically from moment to moment. In both cases I could only communicate about a limited range of topics, and many of the things I said were repeated over and over again over the course of the time I could communicate, rather than truly spontaneous. I wasn’t simply “able to speak” the way other people are able to speak, but rather I was more able to speak than I am normally able to. I was never as able to speak as I am normally able to type. (Hell, even when I had much more fluent speech, I was never as able to speak as I was able to type.) I often required long rest periods. And in both instances, my speech left as suddenly as it came, with no warning whatsoever: One moment I was speaking, the next moment I was fumbling for my laptop.

In both cases, it was excruciatingly painful to do this. As in, something inside my brain was filled with searing pain, as if something was being ripped to shreds, and strained beyond any degree that it ought to be strained. After the speech went away, I had weeks of consequences in cognitive and language areas that took a long time to get over. So whatever happened, it put about as severe a strain on my cognitive and motor abilities as it is possible to put on them by exercising any ability that I know of. It wasn’t like I could suddenly do this effortlessly. It was more like this ability had suddenly come into the range of things I was able to do, but only just, only barely, and with severe consequences for all of my other abilities. Even when I was able to speak in the past, speech had severe consequences (it basically scrambled all my other abilities and created difficulties in areas that normally I have no difficulties, because of the amount of resources it took to be able to do it), but this was worse than anything I remember from back then.

Such random ability to speak or carry out certain movements that a person is unable to do, are common in people with autism-related speech and motor impairments, often triggered by severe stress or a very specific situation. But I can’t explain why speech appeared in those two instances. There have been many times when I needed speech far more than I needed it at those times, when it was truly a matter of life and death that I communicate certain things. And yet it was not there and my efforts to speak resulted in nothing at all, or simply screaming or something like that. I have no control over when I am able to speak and when I am not, and besides those few instances I have been unable to communicate by speech for a very long time.

I imagine that it must have been triggered by a very specific combination of abilities and external events. It is much like a man who is noted in the literature on a movement disorder I have. He has a much more severe form of the movement disorder (“autistic catatonia”) than I have, and is constantly in a wheelchair and unable to move for himself at all. And yet, one day his elderly father fell on the floor. He suddenly jumped up, picked up his father, returned his father to his wheelchair, and then returned to his own wheelchair. He has been unable to move for himself since. This is not because he doesn’t want to move, but because only very specific circumstances were able to trigger his ability to move. I have also heard of autistic children and adults who had no speech at all (not even the random word-noises I’m able to create) who suddenly, under extreme duress from external circumstances (or when they were very sick, as I was in both instances when this happened, interestingly enough), spoke a complete sentence, or even spoke for a period of time, yet lost the ability to speak later and it never returned. These are people with much more severe speech problems than I have, yet they were able to speak for moments/minutes/hours/days under very specific circumstances (usually involving severe illness or an emergency situation or a high level of emotional distress).

I suspect all of this is related to the fact that autistic people’s abilities fluctuate a good deal (even when they’re severely impaired almost all of the time), as well as that our abilities are often triggered by specific outside circumstances rather than related to the degree of effort we put into it. So there are times when no amount of effort in the world can get me to stand up on my own, but if someone puts and object out of my reach and tells me to grab it, that triggers the motion of standing as part of the motion of grabbing. These extreme differences between our abilities on our own, and our abilities when triggered by something outside of us, are common to all of our abilities in general.

Anyway, back to speech. So sometimes I use the word “speech” to mean any word-noises that come out of my mouth. Sometimes I use it to mean words that actually communicate things. And I know that might be confusing.

So now to what I call word-noises. Or sometimes I call them word sounds, or word-like sounds, or vocalizations, or other things like that.

I am sometimes able to make word-noises and sometimes unable to make word-noises. Word-noises can sound exactly like speech. The difference is that word-noises have no communication in them.

For instance, two common word-noises I make are “I love you” and “I hate you” often repeated over and over and over again. They are triggered by strong emotion, but they are totally unrelated to the emotion involved. So I can have a very positive emotion and keep saying “I hate you” or a very negative emotion and keep saying “I love you”.

And that’s actually more connected to communication than most word-noises I make are. Most of my word-noises are simply words or phrases I’ve heard or read, either on their own or strung together. Sometimes it’s just a single word or phrase or sentence. Sometimes it’s ongoing chatter. Never is any of it directly connected to what I am thinking, although in some cases it’s connected to what I’ve heard another person say in a similar situation, or something roundabout like that.

Some of my word-noises are actually vocal tics, especially the ones most connected to emotion. Not all of my vocal tics are words, but some of them are. And contrary to popular belief, most of my vocal tics are not swear words. (Although some of them, actually, are. Although I don’t consider “swear words” to be the important category here. I consider “highly emotional words” to be the important category, and swear words are just one piece of that.)

I try to suppress such word-noises around people because most people have the idea that speech is always communication so ingrained in their minds that they won’t be completely convinced that my speech is unconnected to communication. So even if I say “I hate you” is not directed at them, they might secretly believe that I actually bear them some kind of ill will that I am unwilling to admit to, and that therefore I pretend that it has no meaning in order to save their feelings. I’ve also noticed that people who hear me do word-noises sometimes think I could talk for communication if I only wanted to enough.

I have an easier time suppressing the generic word-noises than I have suppressing the tics. But I can often suppress the tics until I’m alone. I also have a number of non-language tics that I try and suppress as well, but sometimes those leak out around people. Meowing, a sort of loud and intense yelping, and the like. (Not all of my meowing is a tic, but sometimes it is. A tic isn’t defined by what the sound or word is. It’s defined by being largely involuntary, some people call it semi-voluntary because even though it’s involuntary overall, many people can suppress it in some circumstances.)

Sometimes I also vocalize in a lot of ways that aren’t words, just random sounds strung together in confusing ways.

Years ago there was a period when I discovered that I could still speak some French vocally even though I couldn’t speak in English. However, this was extremely short-lived. I started trying to learn French in the hopes that maybe I would be able to find a language that I would be able to speak, even if it wasn’t English. But it backfired in my face: The moment I tried to increase my vocabulary, it became as hard to speak as English. It seems that whatever mechanism allowed my French to be preserved for a bit, was connected to the small amount of words I actually knew in French.

Remember though that when I talk about all of these noises my mouth can make… this is not all the time. Quite often I have absolutely no ability to make my mouth make absolutely any noise, or am only able to make it make some noises but not others. What I’m describing here is my speech at its everyday “best”, not my speech constantly. There are lots of times when I can try as hard as I possibly can and absolutely nothing will come out. Or the only things that come out are grunts and things that don’t sound like words in any way.

All of the problems I have with speech, I also have with typing. The only difference is that the problems are not as severe in typing as they are in speech.

So I have periods of time when I am unable to type to communicate at all. They’re just not as common as the periods when I’m unable to make any sort of speech sound. Some of those times, I’m able to use some other means of communication, such as picture symbols. Other times I’m not.

And I have all these semi-involuntary words that try to come out in typing. Not tics, but certainly the echoed words that come out in speech as well. I have to suppress those words at the exact same time as I create words. So part of me is pushing down the words that try to come out. And the other part of me is creating the words that connect to my thoughts. At the same time, I’m using echoed words in order to create my genuine communication. So I’m suppressing one use of that mechanism in my brain and creating things as another use of the same mechanism. This is not easy, and conversation and writing can leave my brain scrambled and drained. There’s no amount of language that is actually easy. Because of that, I have my iPad and iPod Touch set up with picture symbols that can allow me to spend much less energy in more rote situations, and save it for when I really need it. I also have one set of picture symbols ready for times when I can’t type well at all, and need to use picture symbols for almost (if not totally) everything.

I have a variety of communication problems that go well beyond “I can type” versus “I can’t type”, and those are important, sometimes severe, and overlooked because most people think that you can either type or you can’t, you can either speak or you can’t, there’s no communication problems that go beyond that. But I’m not able to get into most of them here, because (and this is related to some of them) that’s not a topic I can form words about right now.

One of them, though, is that my communication is much more limited than it appears. I’m basically able to form words about only some topics, but not others. Most people are totally unfamiliar with that problem, so if they see you talking about a few things they’ll assume you can talk about anything. And if they don’t see you talking about something, they assume you either don’t know that thing, or don’t care about that thing, or don’t want to talk about that thing.

The reality is that I have both trouble accessing many areas of my knowledge on command, and also trouble with attaching words to them on command. Those two things create a lot of difficulty. It’s as if my areas of speech are islands in an ocean, with very steep and unexpected cliffs. If people see only the peaks, they somehow assume there is land connecting all of them, when in reality it’s specific areas only.

The topic of this post is another area of communication difficulty, but I’ll get into that later in the post, after these examples.

I’m not going to do this one because I don’t have the time, energy or ability right now. But basically it would entail everything I’ve just said, as well as a detailed history of my communication abilities throughout my life, and how my problems with understanding language have factored into my problems creating language, as well as the gradual increase in speech difficulties related to my movement disorder, and lots of other details I’ve not covered yet.

I can’t do this either, but this could be an actual book-length manuscript about my abilities, with references and bibliography showing exactly how these abilities connect to the experiences of other people with similar disabilities, including both personal accounts and scientific studies and references. And believe it or not, there is enough information to fill an entire book.

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So… you can see how that works now. The lowest resolution is a flat statement, short as possible, containing no detail. The highest resolution contains practically my entire life history and every single tiny bit of information about my speech abilities. This is not the only variant that can happen, either: the medium resolutions may focus on different aspects of things, and say more information in one area and less in another, than what I’ve described here. But you get the general idea.

This seems to create a lot of difficulties.

Most people, even without any communication-related disability, are generally going to have trouble communicating in high resolution all the time. But when the high resolution idea contains information left out in the low resolution versions, information that other people seem to find highly important, it can get very frustrating to attempt to communicate.

Because in most situations, all people actually need to know is fairly low resolution. They have no actual right to the detailed information about how my brain works, how speech works, how it doesn’t work, same with typing. Like there’s no reason they need to know that. For their purposes all that matters is that my speech doesn’t work for communication and typing does. That’s all.

And often that’s all I can communicate, in that moment. I have more important things to do than give a dissertation on every nuance of my abilities and my life history.

But then when people find out that I can say word-sounds, or that I have talked twice in a huge amount of time, some of them tend to go “Oh well you could really talk any of the time if you wanted to enough” or crap like that. Or they think I’ve been hiding information from them on purpose, rather than simply not able to give them an entire history of my communication skills. (Hell, I’m not able to do that right now, that’s why the sixth and seventh levels were left to the imagination.)

And this resolution thing seems to become a problem more when people are going to make certain assumptions based on the low-resolution stuff, and then those assumptions are contradicted once I’m able to tell them the high-resolution stuff, or once something happens that shows them there’s more to it than what their assumptions would tell them. And it doesn’t matter what I say in low-resolution mode. No matter what it is, there will always be tons of stuff left out, and therefore tons of assumptions to be made. No matter what I leave out, there will be assumptions. And then when something violates those assumptions, there will be potential consequences unless they have enough awareness to realize that people are simply not able (and may not be willing, and don’t need to be willing) to give entire detailed explanations of everything in a short period of time.

But this is something that frequently trips me up, because… I can’t always communicate at even medium levels of resolution. Or I can communicate some things at very high resolution, and other things at very low resolution or not at all. It’s simply not possible to do high or even medium resolution all the time. But when you are violating the expectations created by low-resolution communication… there are consequences.

Before I was able to communicate about certain things at high resolution at all, I would try to do something like this: I’m going to tell you THIS. But telling you THIS doesn’t mean THAT is true. And telling you THAT doesn’t mean THIS OTHER THING is true. And so on. But that just confused people more, or even angered them (they thought I was calling them stupid), and it didn’t seem to help much. And yet on subjects where I still only have low resolution communication (for all time or for that moment), I still do that, because I don’t know what else to do and I’m trying so hard to prepare them for the fact that very-simple-words are never the reality of a situation. Especially in situations where the violation of their assumptions is going to have important consequences for me.

But really. Often all people NEED to know is at the first or second level of low resolution. And anything beyond that is up to the person to tell you. So if you see, for instance, a disabled person making very specific statements about their abilities, and they do something that seems to violate that? Consider that they may just be telling you the low resolution version of things, because there’s no actual reason you need to know any higher version, and it may be draining or impossible for them to explain themselves to every person they meet. For instance, if someone tells you they’re blind and then they pick up a book, what’s happening isn’t that they become sighted, what happened is they violated expectations you had based on a combination of low-resolution communication and your assumptions about blindness. They don’t owe you an exact description of their visual acuity and the exact nature of their visual impairments. They just need you to know that they have visual impairments.