Thank goodness for that instinct.

That instinct was back again this week. I’m pretty sure I’ve written of it before. Despite terrible conscious body awareness, this instinct has popped up to save me more than once. It tells me “There’s something wrong with your body. If you don’t find a way to detect and treat it, you could die or end up in the hospital.” It sounds ominous but it’s not a panicked “OMG I’m going to die AAAAAAACK!!!!”, it’s more like a calm but firm realization.

In the past, it has warned me of things like organ failure, untreated bronchiectasis (treated it’s only a little more dangerous than asthma, untreated it can kill you), and the beginnings of going septic. And this week it popped up two or three times (seemed like twice, but the first time it happened it seemed to be warning me about two separate things).

The first time it popped up recently, I was away at a recreational program. It told me to go home, not even to wait a day, just go home now. The warning seemed to be twofold: Something was going wrong with my lungs, and my body was so out of energy (from being pushed by others, but that’s another story) that I was experiencing symptoms I haven’t experienced since my last major health crash. Between the weakness and the coughing up disgusting colors of phlegm, this seemed pretty obvious, but the warning gave me the extra urgency not to wait overnight.

So I got some antibiotics ordered and went home. By the next day, my brain was actively checking out. By checking out I mean, being technically awake but not conscious of anything, or being aware only of these weird series of images that went by. It had a feel similar to past experiences of delirium, rather than shutdown or something, and during periods of better awareness I became very glad this was happening only in a familiar place among familiar people. And I was able to begin the resting that I badly needed in order to get through this in one piece.

I began to feel a little better the next day. But then, abruptly, things became far worse. I couldn’t get to the bathroom and back without falling or coming close. I sometimes felt like I was going to pass out. And I couldn’t get near food or water. I couldn’t put words to why, I would just try to drink and my head would turn away. And I felt generally cruddy and woozy. And most disturbingly, the instinct was back. It said “There’s something else wrong and this time it’s not your lungs or sinuses but I can’t tell you what it is.” Grrrrrrrr.

I told all this to someone who persuaded me to go to the ER. (Note: I nearly always have to be persuaded. A good friend describes my attitude to that place as “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.” I’ve just got friends who refuse to give in if I say I don’t want to go there. And mostly I’m glad despite my loathing of the place.) The reasoning was that the lack of water alone would make it harder to cough things up, and bronchiectasis makes that hard enough already, and that could spiral downward fast. Plus it wouldn’t be good to pass out alone in my apartment.

Once I got there, the events unfolded in a very strange way. Normally they’ll give me IV fluids for practically no reason at all, but this time (when I was actively saying I was unable to drink) they insisted on testing my urine for dehydration. I was having too much trouble holding onto language to explain a lot of things so someone was with me explaining them. They kept demanding to know why I couldn’t drink, and the person kept telling them that autistic people can have so much trouble describing subjective experiences, that sometimes “I can’t do _____ and I don’t know why” is all you can get, and that you have to really dig and do a lot of tests if you want to find the reason, rather than acting like nothing is wrong because the person can’t name it. I was treated radically differently from my roommate, who was treated with the utmost respect. (This is common for DD people in general, including autistic people.) They even tried to get me to drink water, which is weird as usually when I’ve been given IV fluids I’ve been perfectly capable of drinking but they’d never given me water in a cup. And all I could do was wet my tongue a little and then my head turned away.

Nearly eight hours later, they came back with a way more respectful attitude to me. Why? The urine test just happened to pick up on the fact that I had a UTI. And they now thought that between a urinary tract infection, sinus infection, and lung infection, I might just have a reason to have no appetite. So they then proceeded to give me two bags of IV fluids and a prescription for yet more antibiotics before letting me go.

What scares me is what would have happened if they hadn’t detected the UTI. It’s not like they were even bothering to look for an infection. The information just popped up when they were testing for something else. And while I could tell the problem was somewhere in my torso, that’s a huge area of the body to look through for symptoms. Nothing pointed me in the direction that a UTI would have been in. And this physician’s assistant was not doing what you should do with a sick autistic person (check for all common things that could cause the symptoms). In fact, since my way of communicating my loss of appetite was so unusual, she wasn’t even treating it as a loss of appetite but rather a matter of willpower or not wanting to drink.

But somehow despite all that I’m on all the antibiotics I seem to need to be on, and seem to have found all the infections that were setting off my “get treated or you may not survive or at least may end up in the hospital” instincts. I’m just glad those instincts are there, or I would have delayed if not avoided altogether, getting everything diagnosed and treated. I certainly wouldn’t have known anything but the lung/sinus infections was causing all the new symptoms. It’s odd to have a body that won’t tell me basic information half the time, but will tell me “You’re in danger, get help NOW.” I wish that simply communicating this instinct to a doctor would result in getting tested for whatever things seemed likely. I think I could do that with my GP, but not with some of the random people you get in the ER. And trying to negotiate all this while disoriented and confused is just… gah, I’m glad it somehow worked out because I honestly don’t understand how, especially given I wasn’t “all there” during times I needed to be communicating clearly.

By this point I’m pretty wiped out and still having appetite problems, but I’m feeling a lot better. I don’t need my bipap while awake anymore, I can get around a little using my old crutches for stability, and my brain is no longer randomly checking out, nor do I feel like any moment my surroundings will burst into a Disney Acid Sequence (warning: the link is to TV Tropes and may suck you in and spit you out twelve hours later). And I’m hoping we caught everything the instinct was talking about.

Words that bite my brain

I can’t stand these words.

Words that cause a range of cognitive pain for me.

At minimum, there’s a sense of them pulling me diagonally. I may understand the meaning, but they still strike me wrong. If I do understand them, they cost cognitive effort to figure out. Not the kind of effort that anyone should be expected to put into understanding things that are difficult for them. That kind of effort is effort I’ve already spent understanding regular words. This effort is beyond that and is destructive to my ability to do other things I have to do. Have to as in have to, not as in “feel like doing”.

Then the worst of these words. There is little to no understanding here. It feels like a miniature explosion in my head every time I read them. I can’t find another way to put it. And the pain they cause, although not physical, is quite intense and feels like a cognitive version of nerve pain. Anyone who’s had serious nerve pain will know how bad that is.

Most of the words are ones I rarely if ever use. But some of these are words I can bring myself to use, some of the time. Some are even words I’ve coined. That doesn’t seem to matter though, they still hurt my brain. So don’t assume that my using or even coining a word means it being easy for me or expecting everyone to like or use the word.

I will say that these are words commonly used in communities that call themselves “social justice” related. The reason I put “social justice” in quotes is that, as a word in the midrange of mental pain levels, I can’t quite bring myself to write it down as if I were using it. That would make it look like I know what it meant. (Not that that always stops me from using a word, but it often does.)

There’s a reason, though, that I’ve abandoned the idea of writing most of these words down in public, in this post.

Because when I’ve brought it up in the past, I’ve gotten a variety of pretty offensive responses.

People patronize me.

They treat me like not knowing these words is a sign of some kind of privilege.

They openly brag about their extensive knowledge of the subjects the words refer to.

They assume because I can’t handle or don’t understand or outright get pissed at the existence of a certain word, then I can’t possibly know anything about the subject the word is supposed to refer to.

They try to patiently teach me the meaning of the word, ignoring me whenever I try to explain that this doesn’t work with this kind of words.

They suggest that I don’t like the words because I don’t experience the kind of oppression that the words were built to describe.

They sigh and roll their eyes and get scornful. Because I’m obviously just some noob who wants everything explained to me (possibly because of an overdeveloped sense of entitlement).

Often their reaction is more than one of those things combined. “Well I for one totally know what the word means. I’m an expert in that area. I guess you are just too privileged to understand. But here, let me try to explain anyway. (As if I should have to.)”

I know it’s not about that, though, because often I know what the word is trying to refer to. I just can’t connect that meaning to the word without a lot of effort and pain. And the connection is never really complete.

Let me just say straight out that I would rather deal with one person who gets words “wrong” (and may even use lots of words deemed offensive due to not being able to keep track of that kind of thing) and may sound “clueless” to the social intricacies of communities or the meaning of words, but has good ethics and a grounded sense of reality; rather than a hundred people repeating all the right words with only a superficial take on the issues at hand and a tendency to want to blend in more than to solve real problems.

I only decided to write this post after seeing other people mentioning their own problems with this kind of language. Not identical problems, but clearly I’m not the only one who finds these words difficult. I’ve seen suggestions that these kind of words can shut people out of the discussion, even if that wasn’t the intent. I have to agree. I also saw someone who had an extreme emotional reaction to a similar set of words, and they wondered if their brain was responding to something real… like something about how people turn words into some kind of rigid ideology, and I have to wonder about that too.

[Note: I may be unable to quickly process comments starting very soon and then for a couple weeks minimum, so please don't be alarmed if your comments don't show for awhile.]

Paintings of language overload and its opposite

I painted these earlier today. I started photographing these while Fey was hiding in the bathroom:

(Picture shows Fey hiding in the bathroom, looking octagonal. I knew someone with an octagonal cat once. But didn’t know Fey could be octagonal too.)

I only wished I was hiding. There was a fireworks show tonight and I could feel every explosion rattling my bones or something.

Anyway, the first painting is about language overload. There are letters in it, which show much better in real life than in photos. So I took one photo of it the way it should look, and then another photo with light behind it so that it would show where the letters are. But the photo with the letters has extremely distorted colors for the same reason that the letters show well.

It’s orange because that’s the color that always seems to be there when I’m overloaded by language. There’s letters throughout (ones that are yellow, orange, or clear synesthetically) but they don’t actually spell words (the same as language both imposes on me and makes no sense when I’m overloaded by it). And in general it’s supposed to convey what it’s like to be stuck in this overloaded language mode and not be able to get out.

After doing that, I felt kind of icky even though I wasn’t overloaded, so I did another painting that’s the opposite of language and the opposite of overload both.

This one looks a lot better when you look at the larger versions on flickr. I have no idea how to describe it. It’s got a lot of layers and texture, and it’s hard to see some of the texture in a photo (but you could actually put your hand on it and feel some of the shapes). The photo isn’t a direct shot because that seemed to get the flash to mangle the colors, and I’m not good at photographing the kind of paintings I do. They always end up looking less complex than they are, when I photograph them. But that one photographed reasonably well as long as I did it at an angle like that.

What I mean by “beneath” words.

I was trying to explain to someone what it meant when I said that I spend  so much time “beneath” words, and have to climb up to them from below. And it hit me that I could depict all of the different layers I go through one on top of the other. I once depicted them (but not all of them, and not showing them as layers) before, so I already knew some of how to do this. I used cut out pieces of construction paper to do the top six layers, and paint for the bottom two.

I’m numbering the eight layers from bottom to top, but describing them from top to bottom. So I am going to start with the eighth layer.  Also these are the layers for written language specifically. Some of them do correspond to spoken words.  

The eighth (top) layer shows the words, “Don’t you know another”. It could be any words, but after not having a clue which to use, I chose the start of a sentence that a guy in an emergency room told me when I was a teen, after I was picked up very overloaded in public and humming one tune over and over to calm down. (He was in that mode people get in when you’ve become unable to talk so they suddenly decide you’ve become unaware of your surroundings too, and they mutter at you in a specific tone that seems to assume you will never tell anyone what they said.) These words represent what happens when you understand the words perfectly well.  

The seventh layer reads “melly doxel rin tunsh”. It represents being able to recognize the sounds a word might make, but not being able to understand their meaning. Whether or not you know that words can have meanings (I didn’t know that when I learned to read, and had skipped over some layers entirely that only became meaningfully separate later).  

The sixth layer reads “ncj fv rztlh xlm hnnc”. This layer involves recognizing the letters as letters, but not deriving sounds from them. 

The fifth layer shows a series of symbols such as circles, squares, zig zag lines, and other shapes. They are arranged as if they form words with spaces between them. This represents recognizing the letters as symbols, but not as recognizable letters.

The fourth layer shows a series of small slightly wavy lines, arranged in a pattern. This involves recognizing the letters as separate things, but not recognizing them as symbols. 

The third layer shows a bunch of joined together lines. This represents seeing and noticing a black pattern on the background, but not really separating out the pieces. 

The second layer is painted. It shows a variety of shapes, some recognizable and some not, some vague and others clearer, all blending into each other and the background. The photo has different colors than the real object due to the flash, for instance something medium green came out almost light pink. There is some loss of the actual multilayered texturing that’s in the real one too.  This layer represents just sort of seeing a lot of shapes and colors and visual textures, and the patterns those things make, and not even noticing the text at all.  Although it’s by nature visual, this is usually happening in all the senses at that point. 

The first layer is gradually and unevenly shaded into by the second layer. It shows a textured black background with a white circle in it. This is when not even sensory impressions make much of a dent in conscious awareness. The white circle is meant to show that even though this may seem completely blank in some ways, it’s not as empty as it may seem. (When things seem totally empty I feel “disappeared”. I did not attempt to draw this, but it would be zero.)

The things I drew were usually somewhat arbitrary. It would be possible to include more or fewer layers, or things “off to the side” that don’t fit into a simple sequence. I drew this to communicate a basic idea, not to do a perfect representation of everything.  There are doubtless layers above eight too — but I drew this to show what is beneath what most people think is the most basic, not to show all the different levels that fluent reading can take.  

Anyway, in different people who experience all these layers, things may work differently. For instance someone might live in the sixth layer, climb to the seventh layer easily, climb to the eighth layer with more difficulty, fall back to the fourth layer during ordinary shutdown, and the second during more severe shutdown. Such a person will have a very different experience of each of these layers than I do (for instance viewing the second layer as total confusion instead of comforting, familiar, and easily navigated).  And a second person may live in the sixth layer also but never make it to the eighth and have great difficulty with the seventh. And someone else may live in the fourth, and climb to the seventh easily by skipping the fifth and sixth altogether. 

I generally live in the second and first layers. This is where I am comfortable and have the widest experience navigating. I have a lot of experience built up there and it isn’t disorienting.  There are things that can disorient me during shutdown but they aren’t part of the scope of something about reading and are hard to depict. And then there’s layer zero during shutdowns. 

Climbing up to layer three and four can be done with some effort. It’s not always possible but it’s easier than the things above it. 

Layer five has a barrier that takes much willpower and effort to push through. Layer five is when things become pretty painful. It’s like each time I look at a symbol and recognize it for one, it burns my brain and squeezes on other aspects of thought until they run off and hide. 

There is a similar thing that can happen to me when at a similar layer in perceiving my surroundings in general. For instance, I might pick out anything circular in my surroundings and each circle I see hurts my brain the same way.  And in listening to my environment, I will generally pick out a really annoying and short musical rhythm or tune from the sounds around me, and hear it boring its way into my ears over and over. 

Past that barrier, things might be hard but nowhere near as hard as going through that barrier is.  Sometimes I go to the sixth level and sometimes I skip it and go straight to the seventh. 

Between the seventh and eighth there is another barrier. Not as big as the barrier between fifth and anything below it, but still recognizably difficult. My guess is that’s because putting actual meaning into the words is very different from, say, matching a set of sounds to a set of visual squiggles, which is just pairing one sense with another without having to match it to concepts. 

(The concepts themselves are usually not one word at a time. It’s more like, what set of words goes the most often with what set of experiences, and then which patterns of word orders and such go with which others.  And then skip the words you don’t understand (more than you might expect) and take what’s left and hope it makes sense.)

Anyway, obviously most of these layers involve climbing, and some parts of the climb are steeper or more difficult than others. But often I will find that it’s impossible to climb any higher than a certain point no matter how hard I try. Other times it’s impossible to climb because I entirely forget that the higher layers exist. Frequent cutoff points for both of those are between two and three (the point where the text is noticed), four and five (the point where symbols are recognized), and seven and eight (the point where meaning of words is introduced).  

Additionally, most of the time I let go I fall down to at least the second layer if not the first. Sometimes I fall down to the third or fourth instead. But there are two really terrible things that can happen instead. I can get “stuck” in one of the really painful areas. 

Getting stuck in the fifth layer happens sometimes. It’s as if the symbol-recognizing thing in my brain has so much momentum that it takes time for it to stop and drop down to something easier to take. Everywhere I look there are symbols. And every symbol noticed is pain. There is no way to stop this except to ride it out. 

But even worse is getting stuck at the eighth layer. This happens if I read or write too much without falling back to the lower layers to rest. I described this layer as the one where meaning is added. But I meant this only in the sense of matching a set of words to a meaning. I didn’t mean meaning as in meaningful. Quite the opposite.  

When stuck at the eighth layer, there is no escaping the words whether I look at words or not. The words have gotten inside my head.  The meaningfulness that I derive from the second layer is nowhere to be found. Direct experience is nowhere to be found. The only thing to be found is words, words, and words. 

Things go orange or yellow (the two most painful colors) and flickery, accompanied by an equally flickery ringing in my ears, and a dry burning all over my body.  And inside my head all I see or hear are words. Flickery words. Buzzing words. Words. Words. Words. Words. Words. Repeating like that in an endless loop.  And the terrifying emptiness that to me seems like the essence of what words and all other abstractions are (yes I am a writer with a loathing for words).  

The longer I try to do something like read to take my mind off the flickering, the worse it gets and the longer it takes to go away. Time seems infinite at times like this. The only thing to do is suck it up, lie down in a dark quiet room, and tough it out until it either disintegrates or I fall asleep.  If I’m awake, I gradually experience more and more periods of dark quiet, until finally the humming flickering wordiness dissipates. Usually at that point I’m exhausted and possibly have been frozen in one position for hours. 

I can think of very few experiences I like less than becoming stuck in the eighth layer.  I would far rather deal with shutdowns where nothing I can’t feel/see/etc. exists and I keep hitting layer zero and vanishing from my own awareness. 

Another important thing is that people operating at the same layer are not necessarily experiencing the same thing. My ability to read means I can operate at the eighth layer despite living at the first and second most of the time. Another person might live at the eighth. Another person might live up at some sort of eleventh layer I haven’t got into, and be experiencing the eighth due to shutdown. The person who lives there will be the only comfortable one. I will be uncomfortable because I am greatly stretching my abilities and hanging by my fingernails. The person from the eleventh layer will likely be distressed and disoriented because their usual abilities are gone and they don’t have the long experience functioning in that layer that someone who lives there does. 

This is one reason I find it really offensive when people assume that every person who can read and write (at least some of the time) has identical experiences. That assumes that everyone who can sometimes get to the eighth layer lives there, doesn’t understand the other layers that come before it, and can always get there. It’s not that simple. It’s not even as simple as the picture makes it look (and this picture is only about reading!). Life is quite a lot more complicated than that. 

So that’s my simplified guide to what I mean when I talk about living “under” or “beneath” words. Similar but not identical things apply when I talk about what’s “beneath” certain kinds of thought, perception, movement, etc. Oh and generally writing something this long puts my reading at layer seven at best, which is one of several reasons I can’t easily proofread, summarize, remember what I wrote, or do various other things.

Don’t just hand me things.

This post has to do with the same topic as my old post Safety Hazards. By the way, the Foradil is no longer a problem for two reasons. One, I had a routine set up so that a staff person would hand me the inhaler with the capsule already inside and punctured. Two, insurance quit covering Foradil and gave me Serevent instead, which is a discus not a capsule.

And now I am typing around the body of a cat who timed her snuggle so that it came after the sound of the nebulizer shut off.

Some background: Now that they know the breathing trouble was bronchiectasis, not asthma and not me just being a pest, I have a treatment routine that makes the “breathing takes effort” thing and the “coughing only brings up phlegm the size of a pinhead” thing far less of a problem. I take two nebulizer treatments a day, each with a vial of 7% saline. But it’s really important to use my inhaler first or else the saline can do terrifying things to my airways that at best take eight puffs of my inhaler to keep me out of the ER.

So the usual routine is someone hands me my inhaler. I take two puffs. Someone hands me a nebulizer mask. I put it on. Depending on my position either I or the other person connect it to the tube and turn on the nebulizer.

So today someone walked into the room, handed me the nebulizer mask, and made a bunch of clanking sounds as well as a small sound like cuujooholdhis. So of course I put the mask on and things could have gone very badly.

The other thing is that I usually have to make an effort for words to be words and not random noise. It’s not just an auditory processing thing, it’s a cognitive/language processing thing where I spend most of my time in a default state where words haven’t even been thought of yet. And even when I concentrate I sort of phase out into that state a lot. So to me, most of my interactions on a typical day involve seeing patterns of movement, hearing patterns of step and tone and stuff, and mostly interacting by the process of being handed something, and then doing whatever I usually do with that object.

Which means “could you hold this?” is just a set of quiet sounds with an offhand, casual feel to them.

And handing me an object you don’t want me to immediately use can be a dangerous idea, depending on what you’re handing me.

The Fireworks Are Interesting

The closer you get to the heart of things, the more words fall apart. First they get shaky. Then they start contradicting each other or getting paradoxical. Then they just fall apart, dissolve, vanish.

The way my thoughts work creates some similar problems for language. And it’s not just that I haven’t found the absolute best combination of words to translate my thoughts with. It’s that on a fundamental level the thoughts don’t translate.

My thoughts, such as I am aware of, are mostly observations of the world, that I have allowed to slowly and quietly settle themselves into patterns. They are not symbols of those observations. Symbols would have a better chance translating. They are also silent — no words pop in to describe them, there is no “loudness” about them, they don’t announce themselves with any kind of fanfare. I suspect to many people they would seem like an absence of thought.

I have also observed words. I have seen which clusters of words attach most frequently to which situations. And that is how I use words — as imperfect translations of situations that present themselves in my mind. I use words because they are the most readily recognized way to communicate with most people.

[With some people, words are not necessary. There are better ways to communicate. That is wonderful in every sense of the word.]

The way I use words can present problems though. I start with a situation and then I throw words at it. The problem is for any given situation there are many ways you could approach it with words. Some of those words might even seem contradictory if set side by side. But it’s not that the situation itself is contradictory, it’s just that language can be complex that way.

For instance, in my last post I described what could be called, and what are often called, subtypes of autism.

Someone replied saying they don’t believe in one type or many types of autism but that it seemed from my post as if I believe there are many.

The reality is more complicated than that.

Autism is not a thing. There are only the people who get called autistic.

I recently tried to describe the process that led to modern notions of autism. I have read many of the original sources for that and for other areas of psychiatric classification. My language skills were less fluent than stuff I normally publish online, but even though I am eating again (I was sick when I wrote it) I still can’t come up with more fluent language for the description I gave of the way ideas of autism have come about.

Were original people designated as autistic.

Original people had their be.

Original people had their “seem to professionals”.

Those not the same.

Then people later might identify with the be. Or with the seem to professionals. Or with the seem to professionals of the original seem to professionals.

So later version of who is autistic ==

People be like original people be.
People be like original people seem to professionals.
People be like original seem to professionals seem to later professionals.
(…)
People seem (to self or professional or family) like original people be.
People seem (to …) like original people seem to professionals.
People seem (to …) like original seem to professionals seem to later professionals.
(…)

Which total complicate what people see now as one thing and try to find one common deficit.

So when I say autism it is a shorthand for a modern language-based classification of a bunch of human beings that involved a lot of biases, historical accidents, and clutter-minded evolution of the sort I described above.

So when I say subtype of autism I mean there are people with some cognitive things in common, who also happen to be classified by those stilts-upon-stilts-upon-stilts standards as autistic. I mean to refer to real live people that I have observed patterns in. Not the baggage that comes with the words.

So I could just as easily have described us in a way that involved a questioning of the entire category system that gave birth to notions like “autism has many types” or “autism has one type”.

This may not be the same reason that the guy who replied to me doesn’t believe in those things. But it is still a lack of belief in those things. And my lack of belief in those things is not changed by my use of the words that most people are familiar with — autism, subtypes, and so on. My lack of belief in those things also is not a good reason for a troll to reply saying something like “If you don’t believe in those things then stop calling yourselves autistic damn you.” To say such a thing is to take my words on entirely the wrong level, and such comments will be cheerfully deleted.

There are third, and fourth, and fifth, and so on, ways to describe the situation in the last post or for that matter in any of my posts. It can be hard to know which one to use, whether to combine a few, or what. And no matter which way I choose, I will be leaving out a world of important things.

Because of this, please don’t persist in telling me what I believe after I have confirmed I don’t believe it. It doesn’t matter if you come up with ten separate examples of words you are totally certain prove I believe something or come at it from a certain viewpoint. If I say I don’t, then I don’t.

To get back to the way I think, I am not even certain I have “beliefs” (even if I use the shorthand as if I do). Once you peel back the layers of language that I use for communication… I have observations and experiences, I have patterns of observations and experiences, and so on. “Belief” seems to require jumping up into language again. So do many other concepts that seem more language-based than anything. Language forces me to use many concepts that have nothing to do with the way my mind works when I am not writing. Those concepts form weird mesh-like frameworks in people’s heads and they then associate me with the mesh-like frameworks instead of with the person beneath them. (And it’s not just me this happens to, but everything.)

But if you look between the words (not the same as between the lines), rather than at them, you can start to see things far more interesting than the words themselves. (This is not abstract. This is as concrete as it gets. The words are the abstractions.)

The use of language has the annoying property of insisting on the reality of lots of abstract concepts. Even seemingly concrete words like “green” are arbitrary, and different languages will divide the colors different ways. (The Irish language, I am told, has more than one word that translates as green and one of them involves colors that in English would be specific shades of green, grey, and brown.) Whereas just looking at an object of certain colors doesn’t require figuring out how any given language classifies them. So literally anything I perceive has to go through a horrid process of translation and distortion and oversimplification. Even the most “literal” language is hopelessly abstract compared to what language is trying to describe.

Every single time I write, I pick up a set of tools. Those tools are the phrases I cobble together into sentences.

“Subtype of autism” is one example of such a tool. It is a shorthand for certain people that I have made certain observations about.

Just because I happen to use the nearest available set of translation tools does not mean I have, in picking up those tools, agreed to the entire worldview of the people who built the tools. I don’t have to agree that autism is a real thing, or that it is not socially constructed, in order to use phrases that include the term. I use these tools because the alternative is silence, not because I have picked up an entire set of beliefs about the world with every phrase I use.

Even more, my failure to describe something does not mean I haven’t observed it. A friend once told me that she envisioned my brain as having these enormous clumps of detailed information, but without a way to access most of it. Most of what I know, I can’t say. What I do say is just an approximation of a sliver of what is in here. Notice how much trouble I had describing part of the history of autism. Even when not sick almost all my attempts have looked similar. Does this mean I lack awareness of what has happened? Does this mean I view autism as a concrete reality, as a type of neurology, as all these other ideas words bring in? No. Not even if I use the word “neurotype”. I know this can be hard to understand but it’s true. No matter what I say will leave out 99% of the information and distort the rest. Don’t be fooled by words.

All of this is just a reminder for everyone, of how and how not to read the words I write. I am not trying to force anyone, or to say everyone is able to do this. I am just trying to give a reminder of how I do and don’t work. If it doesn’t make sense, don’t sweat it. It’s hard to get words to make sense on a topic as completely opposed to words as this one. It’s a little bit like seeing antimatter and trying to use matter in it’s vicinity. The fireworks are interesting.

Why I never expect to be right

A friend of mine read my post on my reaction to the blog carnival theme of intersectionality. She and I have fairly similar thought processes, and both arrived at the same conclusion about intersectionality as a concept. (That is, that it’s a fairly abstract theory-land construction of a very real-life situation and that we preferred practical descriptions to using an abstract term for it.) However, she arrived at the conclusion instantly, and it took me a whole post worth of muddling before I figured it out. And today I finally realized why there was such a time discrepancy in our reactions.

The fact is, I come at the world as if everyone knows more than I do, thinks better than I do, understands more than I do, and is generally in all ways superior to me. It’s a deeply ingrained unconscious reaction and has nothing to do with reality or even how I think about these things (I don’t even think that kind of inferiority/superiority exists. But that’s how I think.

Don’t tell me I shouldn’t feel this way because people who were classified as gifted children/child prodigies never feel this way. It’s not true. First off, I never knew I was classified that way until (ironically) I was at an age where I no longer even tested that way (which I wouldn’t know for many years to come). Second off, I doubt the knowledge would have given me the equally ridiculous sense of superiority that it gave many children around me.

Why? Well look at it through my eyes: I was in a world where everyone but me seemed to know sone important thing that I didn’t know. My receptive language was barely there, and I relied on patterns and the keen observation of non-word-based aspects of the world around me to navigate the world. I was good enough at it that nobody guessed the extent to which I didn’t understand things, but bad enough at it that I ended up making and wearing a fake nude suit out of construction paper in response to finally watching the behavior of other people to try to piece together what was wanted of me during an assignment that was due that instant that I hadn’t even picked up on as existing. (The kid I was partnered with kept drawing attention to his hat, and lots of the paintings in a book we were supposed to give a presentation on were wearing hats. Lots of them were nude, too, so I stood in front of the room covered in orange construction paper reciting fairly random sentences.)

And understanding language was only part of it. It seemed to me that everyone other than me was moving along to the pattern of music that I couldn’t detect. And that every time I tried to insert myself into the pattern, no matter how hard I tried the music turned dissonant and terrible and pushed me out again. So I would never have guessed that my ability to turn written into spoken words, or my general ability to find and memorize and analyze the world through patterns, had been impressive enough for a five-year-old to earn me a high score on a test that people believed all sorts of ridiculous things about. (Meanwhile the people who tested me thought those abilities meant so much that they would disregard my receptive language scores and all other scores that didn’t make sense to them. My guess is that my being white and middle-class also helped them forget.). I still remember the test and the manner in which I worked out the answers. I literally didn’t know the meaning of the word “test”. But my answers were apparently impressive for a five-year-old (not so much for a fifteen or twenty-two-year-old, but that’s another story.)

Anyway, despite my talents, I never really compared them to anyone else or even knew I was ‘supposed’ to. I only knew that I was outside this intricate dance that everyone else seemed perfect at. So when I did learn to compare myself to others, I only noticed my faults. And as I got older, and the gap widened between my abilities and other people’s expectations (whether the generic.l expectations of someone my age or the inflated expectations of ‘gifted’ children), I only became more convinced that I was uniquely defective and destined for some sort of hellish life of the sort that I knew ‘had to happen’ to people who didn’t measure up.

This has resulted, even now that I understand how nonsensical such comparisons and hierarchies are, in a deeply held assumption that if lots of people write about something I can’t seem to write about, then it’s because they know something I don’t. I almost never think that my way of understanding things is real or valid. So I frustrate myself by bashing my head on a concept for (at least) hours before realizing that my instinctual reactions to the concept have merit. And even when I figure out they do, I am sitting there just waiting to hear that I am just ‘too stupid’ to contribute anything to the discussion.

How (not) to ask me questions.

This post is in the spirit of Eyeballs eyeballs eyeballs. Picture the person in strong/bold letters as talking very rapidly and very loudly with only the shortest pauses in between.

DUUYUUWAHNNIKAEH’? . Let’s see… “cat”, “do you,” what is she… how do I connect these to meanings… YORSAENWIHCHDUUYUUWAHNNIKAEH’ (head goes blank again, blank look must be on face) KAEH’ KAEH’ (WAVE OBJECT IN FACE AND START SLASHING HAND ACROSS IT) (okay what was she saying again, something about cats, why cats?) DUUYUUWAHNNIKAEH SUHMPEEPUHLLAYIK DHAIRSAENWIHCHKAE’ DIHNDHUHMIDUHL
“do you want”… “some people like”… argh why won’t she give me a minute to think? SUHMPEEPULLAYIK
DHAIRSAENWIHCHIHSKAEH’ why does she drive out any words and meanings I’m figuring out by piling more words into this? (IMPATIENTLY WAVE OBJECT IN FACE AND SLASH HAND ACROSS IT) KAEH’KAEH’LAYIKDHIHS …argh. Just say yes and she’ll stop.

Translation:

She’s holding a sandwich on a plate. She says, “Do you want it cut?” I sit there looking confused, finally having figured out that these are words and that one of them sounds like “cat”. Within half a beat of me figuring that out she says, “Your sandwich, do you want it cut?” This drives all the interpretation out of my brain and I have to start over. While she’s saying it I’m just barely getting meaning out of the first sentence. And as I slowly progress in understanding them, she keeps interrupting it. “Cut! Cut!” She mimes cutting through a sand with her hands. “Do you want it cut? Some people like their sandwiches cut in the middle.” I’m still trying to figure out what’s going on, having so far only managed to retain the idea that I’m being asked a question. She mimes cutting again. “Cut. Cut. Like this.” Etc. I figure out she’s asking something, that it’s in a yes/no question pattern, and that if I say yes she’ll probably stop throwing words in my face.

The problem is that a question has urgency about it. It has “you have to answer this” somewhere in it. It turns on this whole program in my head devoted to giving random answers to questions to get them to stop. And then a lot of people will barely wait a single moment after asking a question, to go on and ask more of them. They don’t realize that as they’re doing this they’re just throwing on more and more language to process. And that each time they ask a question, the message I get in my head is “Urgent, urgent, needs response, now need to figure out how to respond,” and I have to then backtrack and figure out what the question is if I don’t want to just give a random answer (I have a bunch of templates stored in my head for question types that have easy enough answers to randomly pull out to get people to stop asking them). And then halfway through my figuring it out it gets interrupted by another message of “Urgent! Urgent! Answer them!”

So the end result is a huge pile of urgency in my head and no comprehension until the person has finally shut up and gone away.

And text is only slightly better than this. If you expect me to rapidly process a question, you’re expecting that it’s a really good day for language processing. If you keep asking them over and over, you’ll just add to the stuff to process, not make it easier to answer. And there are a lot of people whose style of question-asking seems to be along the lines of stacking questions on top of each other. Sometimes it’s assorted variants on the same question. Sometimes it’s slightly or even majorly different questions asked two at a time and leaving me wondering which one to answer — “Do you want to do something do you want to go to the park?” is one of my least favorite question styles. It’s like a run-on question.

I noticed some time a year or two ago, that I do a lot of my communication with staff people without relying on the language content, and that one of the problems with new people is the amount of language I have to produce and understand in orienting them to the job. Someone who’s been here awhile will hand me something, and say what to do with it, and I won’t even hear them saying what to do, I just know from routine that it’s always what I do with it and the words don’t matter. Even if the words are something I have to answer, I find myself often able to give yes/no answers without having a clue what the person is saying. I noticed that a huge amount of the time people are working for me, they have no idea that I am not hearing the majority of the words they’re saying. I just know all the motions to go through and all the responses to give and I do it largely based on where they are positioned, where I am positioned, how each of us is moving, and what objects are being handed around.

And when people — strangers or just people unfamiliar with me — do notice that I’m not noticing what they’re saying, they seem to have a tendency to say something in a snippy tone along the lines of “Do you have a hearing problem or something?”

Note that I can often figure out what people are saying, sometimes even quite quickly. But it takes a certain level of effort, focus, concentration, energy, and ability to do that on that particular day. It helps if the topic is very familiar. And none of it ever feels natural or easy.

The problem is that explaining my incomprehension to others is so familiar that I can do that, and most of the responses, by rote, leaving them with the impression that their questions and responses are somehow all being understood when they’re really not.

I also do understand a whole lot of things with a delay. I now understand the entire conversation this person had with me half an hour ago. And there are still vivid memories as far back as 25 years ago that I am still trying to figure out the words to. I go over and over the sounds in my head and try to put them together into something meaningful. Often one day I’ll just spontaneously realize what someone said to me when I was 3 years old.

There are also times when there’s no comprehension possible, including no awareness that the words are even something that ought to concern me any more than white noise would. All of these different things are largely the same as the auditory version of the way I explained reading to be in my post titled Safety Hazards.

But at any rate — the best thing to do with a question is make sure I’m paying attention (and this doesn’t have to mean “looking at you”, it means focused on understanding what you’re saying), then ask one question (not a double-decker question either) and wait for an answer. You might get a quick one or a slow one, but the more you throw words on top of words, and the more pressure you put on, the more you slow me down. And the more likely you make it that I’ll give an inaccurate scripted answer if I answer at all — which isn’t fair to either of us, so I try hard to suppress that. If the interaction is over something where you can hand me an object that’s capable of prompting me in the right direction, all the better.