Tag Archives: Communication



Me with Fey sitting on my shoulder, and a brown and yellow afghan in front of me.

Me with Fey sitting on my shoulder.

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

What came before.


If I could reach through the computer screen…

I want to hand you a lapis lazuli ball

So you can lose yourself in the deep blue

And be dazzled by the gold specks.

I want you to roll it over and over in your hand

Gently nose it to feel its texture

And weigh it in your hand.

I want to hand you my black tourmaline egg

So you can feel that unique texture

I want you to hold it while you sleep

And wake up to it, warm and slick in your hand

I want to hand you my amber ring

So you can watch the sunlight turn it into fire

And watch the sun set inside it glittering red, orange, and yellow

I want to do these things

So that I can say

We share these sensory experiences

And nothing can take that away

I want to hand things back and forth

And clack them together to hear their sounds

And rub them on our cheeks

And brush them against our fingertips

Then I want to hand you things too big to pick up:

The warmth and smell of a granite mountainside as the sun heats it up all day long.

The liquid sunlight melting across the coat of a cat who embodies sunlight well.

The whole cycle of life that takes place in the soil of a redwood forest. And the smell of that soil.

The deep rumbling sound of the Mother Tree when you’re curled up against it, surrounded by its invisible amethyst glow.

The feeling of lying in bed, but at the same time, being surrounded by a deep, glowing blue sky, as if pre-dawn or post-dusk. And listening to the music of the forest. Listening with my skin, listening with my eyes, listening with my fingertips, listening with my nose. Listening with everything more than my ears. Being wrapped in the song of the forest and the stars and the trees and the soil and the fungus, all singing, all singing inside me.

I know you can feel the layers of sensory experience. The layers of meaning that come before the meaning of mind. The things we were meant to forget, when we learned to think their way. The things we didn’t forget, the things that we retained no matter what we were told to forget. The stillness, the silence. The music in the silence, the growth and death and birth cycling endlessly.

I would hand you these things, if I could reach through a computer screen. And I would take whatever you handed back, and listen to it sing its unique song. And we could communicate the way we are meant to communicate. By what came before thought, by what came before sight and sound, touch and smell, by the resonance in what came before.

A bunch of stuff that needed saying


The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

How to solve “behavior problems” without having to learn self-control.


Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.

Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.

My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.

This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.

The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.

I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?

Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.

Except it didn't work out like that. At all.

My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.

And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.

Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.

From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.

So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.

Needless to say, my being alive at the moment owes a lot to coincidence.

They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.

No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.

Communication page I used to handle that invasive woman I met.


It’s been quite some time since I posted my letter to the woman who accosted me on my way to the para transit van. But I wanted to update people on how I handled the situation when she approached me the next day. Which was a success.

I knew that I have trouble coming up with new language of any kind in high stress situations, especially involving people with bad boundaries. So I spent most of the night creating a new page for my communication software.

I use Proloquo or Proloquo2Go for most of my communication these days. My super-expensive, clunky Dynavox has been collecting dust in a corner ever since I first got Proloquo2Go years ago. Proloquo2Go has two separate sections. One where you type and it speaks out loud. Another where you can say something by pressing on one or more pictures.

I created a page where everything was about boundaries in one way or another. These are things I’m often unable to say in real time. I have a hard time remembering its possible to say these things. And coming up with words. And monitoring my emotions in response to situations. And communicating around invasive people. And pushing words past what feels like a barrier between my mind and everything else. Let alone all this and more at once.

Here’s the page I created:

[Description: A communication page arranged as a grid with one sentence per square. Each one has one word or sentence. Words in parentheses are what the previous sentence is an abbreviation for: Back off. Don’t patronize… (Don’t patronize me.) Don’t talk to me. Don’t touch me. Don’t want talk about. (I don’t want to talk about it.) Fuck off. Get out of my face. Go away. I am not a child. I don’t care. I don’t do eye contact. I’m not kidding. I’ve a right to be mad. (I have a right to be mad.) it’s not funny. Leave me alone. Now. Please. Stay away from me. Stop it right now. Stop. That hurts my brain. You put me in danger. (You’re putting me in danger.) you’re hurting me. You’re too close to me.]

I tried to make it so that I could use various levels of politeness, forcefulness, and rudeness depending on the situation. One way I did this was with different icons. Obviously, “leave me alone” and “fuck off” are very different. But another way I did it was by adding icons for “please” and “now”, the two squares outlined in blue. This made it so, by hitting two buttons in a row, I could say “please leave me alone” or “leave me alone now”. So I have a pretty good variety of intensity I can use.

I was expecting her the next day. She had said she wanted to meet me in the morning. So I prepared myself. I tried to stay connected and aware of my surroundings. She sat down at the table next to me. And she watched until my staff person had to leave me alone for a minute. Then she approached.

Because I was expecting her, I was prepared for the onslaught people like her carry with them. That thing where when they get close to you, it almost feels as if they are overlapping with you. So in my head I made sure to mentally separate us, which made it easier to communicate. I hit “please” and “stay away from me”. She yammered some sort of explanation and went back to her table.

I maintained deliberate mental distance the rest of the morning that I was anywhere near her. My case manager later made an effort to find her. She’d heard the story from a guy who witnessed it, and she wanted to report this woman. But we never found her. And things went just fine the rest of the day.

In any alternate universes where I didn’t make this communication page, the likely outcome is much worse. I would have been pretty much trapped around this woman, and that would have done a kind of emotional damage that takes time to recover from. It’s nothing that has any kind of official name, it just leaves me more vulnerable to other people like her until I can reverse it.

Another important thing I did besides create the communication page, was to rehearse everything many times beforehand. If I don’t do something like this, it’s hard to use the communication icons. Contrary to popular belief, just having the ability to type or use icons, doesn’t solve every communication problem.

And without rehearsing, there’s a big chance I’ll never use a page like this. My fingers won’t know where to go. My mind won’t remember it’s possible. My eyes won’t remember to look through the page to find possible things to say. My will won’t be able to push through the barrier between experience and expression. And much more. That’s a lot of places for communication to break down.

It is absolutely vital that people who use communication devices, have ways to respond to violations of our basic boundaries. Disabled people are far more likely than others to have others behave invasively with us, ranging from subtle to violent. People teach us from our earliest years onward that such invasion is normal, natural, and something we should accept without complaint. We have to have the means to say no.

And we have to have the means to say no forcefully, even rudely. We need to be able to use cuss words, even if we have the kind of personality that would never use them. Sometimes the only reason that we appear unnaturally even-tempered is because we’ve never been allowed to be otherwise. We have the right to say fuck off, but people don’t always give us the ability to do so.

Of course, even if we say things like that, there’s no guarantee anyone will listen. Some people’s reactions when I get mad, remind me of the way people giggle at my cat when she swipes someone who touched her in a way that hurts her. It’s like she and I aren’t real enough to them, so our anger is cute and funny.

I’ll also never forget the time someone made an asinine comment when I was out in public. I typed a response and stuck the speaker up to his ear so he could hear it. All his friends burst out laughing. One of them said “Dude, that guy’s cussing you out using a machine!” Which is… so much not the response I was going for.

But still. We need to be able to have the full range of responses that other people can have. To do otherwise smacks too much of that idea that we should be passive and sweet all the time. Being able to say no, being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.

Another important thing: Communication pages like this are not just for people who absolutely can’t ever speak. They are for anyone, anywhere, who for whatever reason would be unable to say things like this in situations where they need to be able to say it.

I’ve run into too many people lately who desperately need something like this, but are afraid to use it because they don’t fit the popular image of someone who needs a communication device. Some of them have even been told that it’s horrible or disrespectful of them to even consider using a communication device. But my position on it is that having the most effective communication method possible can result in better emotional and physical health, in some situations it can even save lives.

So given all that? If something like this can make your life better, for any reason at all. Whether you can’t ever speak, can only sometimes speak, can only speak about certain topics, can speak but it isn’t what you mean, can speak but typing or using picture icons works better or uses fewer mental resources. Or anything else like that. Do whatever works best for you, and screw anyone who tells you different.

Anyone who feels the need to act as the supreme gatekeeper of all things assistive technology… not only do they have too much time on their hands, but they are letting ideology get in the way of real people leading better lives. And that is just plain wrong, and fundamentally unfair to people who could benefit from a communication aid.


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.

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.