This painting has been demanding that it isn’t finished many times since I thought I finished it. I think it’s finished now. I trust that it will let me know again if it isn’t. I don’t try to make these paintings about anything usually, but often they end up about something anyway. This is one such situation.

There appears to be distance in this painting. The people in it are standing as far away from each other as possible, the ones on the edges looking in separate directions away from each other. But the distance is only physical. The real distance in this painting is something entirely different than that. But first, I want to talk about the lack of distance between these people.

They perceive the world in similar ways. Not identical ways by any means. But similar enough that when they communicate with each other, they are inhabiting the same world and communication is pretty instinctive for them. Each one’s responses to her surroundings are written on her body, and each one’s body is written on her surroundings. If they use words, each one’s surroundings and reactions are written in between the words (not the same as between the lines). And, inhabiting the same perceptual world, each one is able to easily read what is written on the others’ bodies, in their surroundings, and (if words are used) in between their words.

They don’t need to see each other’s faces. They can see through each others’ ‘seemings’ without getting caught up in them or even noticing them. They don’t need to go through the front, because they are already inside.

As far as the perceptual world they share, it’s hard to describe in words because it is so completely the opposite of words. And yet without at least trying to point at it with words (which is the most words can possibly do), people who don’t live there can’t know about it. (I have tried to point to it with words many times, so for those of you who have heard it already, this will be quite familiar.)

It’s a place where words, concepts, ideas, and abstractions don’t exist. The world is perceived as texture, motion, tone, timbre, smell, color, flavor, and shape, and the various (non-abstract) patterns between them. Having inhabited this realm since infancy and never truly left it for long (regardless of seeming), they are accustomed to navigating through it without becoming confused. Although I have tried to write about the particulars of this many times before, the details of how to describe this elude me as usual.

The real distance in this painting? The distance between the place that they live, and the place that most people seem to live. It’s a distance that they cross every time they have to communicate with someone who doesn’t live in that place. But the person they are communicating with rarely understands the distance. They hear the words, but they don’t hear the long climb it takes to come to a place where words have meaning. They perceive that we are in the same room with them, but they don’t perceive how different our perception of that room is. You can be physically right next to someone and be as far apart from them as possible.

Sometimes they do pick up on the distance. Especially if the people don’t seem to be responding or understanding the way others expect. But although others notice the distance, they misunderstand what that distance means. They might decide that this world is an empty, barren cognitive wasteland. Some people have a little experience, for instance memories of toddlerhood, or of shutdowns. But most such people remember this realm as simply chaos. They don’t have decades of living primarily in that realm and learning other ways of navigating and understanding that happen in a totally different way than most people’s do.

In the shared place they spend most of their lives in, they are equal. Not as a concept, but as a fact. There are not a lot of concepts here. There are sensations, which blend together. There are no words. No idea-thoughts. Abstract concepts are not here to wrestle sensations into tidy submission. Not even those most concrete of abstract concepts, such as ‘chair’, ‘table’, ‘bookshelf’, ‘door’. These things are not perceived separately from each other, they are perceived only as their component sensations. And even those are not categorized as ‘rough’, ‘smooth’, ‘curved’, ‘brown’, ‘loud’, but just experienced. Categories have no place here, but there are many patterns:

I heard what I know from the tattered leaf
That tumbles and twists in the wandering breeze
Sharp stones that lie by the side of the street
Forgotten yet carefully stacked on my knee
The cold of the pavement I press to my cheek
The glance that darts past me before it can reach
Flat rocks skim the surface then sink in the sea
They dance through the world and then come back to me

Most people put a great deal of emphasis on certain qualities that the people here don’t even notice when they are in the place that is home to them. People are considered wholly different from each other based on presence and absence and type of speech, employment, and education. These supposedly enormous differences are impossible to perceive in that place. These three might be very similar or entirely different by the standards of the rest of the world, but they won’t notice either way because the commonalities more important for them to be able to understand each other are obviously there. Those supposedly large differences, if they exist at all to them, are just barely perceptible and not at all interesting.

But they have to step out of that place. It is grueling and rips apart what they had, giving them only the scraps rather than the full texture. It feels like exile, like death. In this new place of ideas rather than the things themselves, there are all kinds of things going on that have nothing to do with reality. And yet most of the world lives in this place, cannot escape it, and do not even know the other place exists. If others do know of the other place, they don’t view it as too important, or too valid, and they fear it without knowing what they fear.

When these three step into the place of words and ideas, they find that other people view them in ways they would never view themselves. Ideas like ‘high functioning’ and ‘low functioning’ get batted around, and may be applied one to each to separate them from each other. Even when people don’t use those words, they use the ideas. Neither of them understand why some people see their appearance as so completely distant from each other, when their reality is so close together.

So many other aspects of idea-land cause them problems. It’s worse than a translation problem: This place isn’t just one language that needs to be translated into another, it’s the opposite of language. Their experiences kill language and language kills their experiences. All they can ever do is use language to point vaguely in the direction of what they mean (as I am doing now), and hope that someone can pick up on it without attaching an unnecessary string of ideas to it (which people from idea-world always, always do). They may use language well or poorly (or both at different times), but they are deep down less connected to language than even the most incompetent writer who lives in idea-land. Cruel misunderstandings often result from this seeming paradox.

But in the place where they live, they are just three pieces of a larger pattern. Their resonance with each other helps them perceive it more distinctly, and to act in the ways they are meant to act, even when they themselves don’t intend it. This is a place without words, without belief, without ideas, without ideology, without what most see as “thought”, without symbol, without intention. This is a place they never truly leave, even when they climb into the realm of ideas to use words — and if they remember things later, it is the view from this place that they remember.

As may be obvious, I’m one possible person that can fit into this painting. I view the experiences I’m discussing as almost sacred, especially given how long it took me of being the only person I knew who saw things this way, which takes a toll. Please have some respect for that.

More posts/articles regarding similar topics:

What I mean by “beneath” words. (That’s what’s meant by “under” thought, or more specifically idea-thought.)
The Fireworks Are Interesting
Up in the clouds and Down in the Valley: My Richness and Yours
With Sideways Mind: On Listening to Cats

Further notes (please read these before replying):

None of the things I’m talking about involve a crossing of boundaries in the wrong way. These aren’t people who have been sort of smeared into each other in a destructive fashion. These are people who are quite definitely separate, who don’t encroach on each other wrongly at all, in fact, but who have a sense of “being in/from the same place” as each other, a resonance. It’s hard to describe, but it’s very different from people who do smear boundaries, or who use concepts like “being from the same place” in order to hurt and manipulate other people.

Please don’t compare these experiences to things like Buddhism, drugs, or the supernatural. I’ve noticed that when I start talking about experiences that are outside of conventional language, some people make an assumption that seems to run something like “What she talks about is outside of language, and what I talk about is outside of language, so we must be talking about similar things!” Even though, for instance, the other person’s experience might be one of being so thoroughly embedded in a whirlwind of ideas that language can’t handle it and falls apart for that reason, which is the opposite of what I am talking about. (Plus, when language breaks down, a single set of words often ends up pointing both to a thing and to its polar opposite. Which doesn’t help in these situations.) I’ve had enough of these comparisons to make them leave a bad taste in my mouth for several different reasons I can’t get into here.

When I talk about “worlds” here, I’m using the best terminology that I have. I had so much trouble writing this, that I had to leave in terms that I don’t normally use. None of this should be thought of as confirmation of the stereotype that autistic people “live in our own world”. And it’s not about disability-based superpowers either. Please don’t smack me for using the only words I could find.

I’m not trying to create some new stereotype (or new variant on an old stereotype) of any kind of disabled people. I’m trying to talk about something that almost nobody talks about. That’s a difficult task. If you’re reading a stereotype in here, you’re reading it wrong. I know that some people will take a stereotype out of it anyway, or will add on meanings that aren’t intended. I can’t do a lot about that, but if it happens, it’s because of someone mistakenly reading things I didn’t write.

The people I’m talking about isn’t some kind of code word for ‘autistic people’. While many of the people I share such experiences with are autistic, some are not (usually they’re neurologically atypical in some other way, be it brain injury, intellectual disability, epilepsy, dementia, or any of a number of other categories people get stuck in), and most autistic people do not seem to share these experiences in quite the way I’m talking about.

Nonetheless, these experiences call to mind the following poem by Jim Sinclair, originally published in “Our Voice”, the newsletter of ANI. (This newsletter allows articles to be reprinted as long as the author’s name and the name of the publication are cited.)

Autispeak

This is the language we speak,
we who can talk without sound.
This is our voice in the silence
Where every word has weight, and no thought is ever lost.

This is the language we speak,
we who embrace without touching,
This is our dance without bodies
Where every touch has meaning, and no glance is ever wasted

This is the language we speak,
we who can see without looking.
This is our star behind darkness
where velvet rainbows sing, and no tear falls unseen.

This is the language we speak, we who can float outside time
This is our home beyond nowhere
where shadows’ footsteps fall,
where memory echoes from the future,
and comfort flows back from the past,
where smiles have no need for faces
and warmth breathes from the frozen places.
This is our source, our destination, where every song is heard, and no soul shines unknown.

And with that said, I’m now off to submit this to the Disability Blog Carnival before it turns midnight.

A friend just told me I Write Like, a website that supposedly examines your writing and compares it to various well-known authors to try to figure out who your writing is the closest to. I have no idea how accurate it is, or even what criteria it uses for deciding who writes like who. But for some reason most of my results have come back as this:

I write like
David Foster Wallace

I Write Like by Mémoires, Mac journal software. Analyze your writing!

I had no idea who David Foster Wallace was until today, and now I only know a little bit of who he is, which isn’t much better. This is the one I got for things like my DSQ article, and The Fireworks Are Interesting, among many others. It’s by far the most common of my results.
Some other results I got:

I write like
H. P. Lovecraft

I Write Like by Mémoires, Mac journal software. Analyze your writing!

H.P. Lovecraft!?! o_O The first to get that one was my first feline ethics post, I can’t see the resemblance. (But presumably it has something to do with word use or sentence structure, not with content, since there’s nothing Lovecraftian about cats. I got Asimov for the second feline ethics post for whatever that’s worth. Then again, the first feline ethics post had a lot of quotations from other people in it.) This is the most common one I get besides David Foster Wallace, and I find that incredibly disturbing.

I write like
Isaac Asimov

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Isaac Asimov (the second feline ethics post).

I write like
Margaret Atwood

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Margaret Atwood. (The post If Only, Oh If Only, The Oak Manifesto.)

I write like
Arthur C. Clarke

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Arthur C. Clarke (A post called About this “can’t defend themselves” stuff.)

I write like
Vladimir Nabokov

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Vladimir Nabokov (Because I have never liked gravitational metaphors of depression)

I write like
Cory Doctorow

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Cory Doctorow (What You Know)

I write like
Lewis Carroll

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Lewis Carroll. (The Meaning of Power)

I write like
George Orwell

I Write Like by Mémoires, Mac journal software. Analyze your writing!

George Orwell (Echostaffia and Power — I removed the quotations from other people)

On most of those I only wrote one or two of the links I used, although with the first two especially there were many more than that considering I went through dozens of things I’d written, and even on some of the others there were more than a couple.

So basically… I write like a bunch of sci-fi/fantasy authors? And especially David Foster Wallace and (somewhat fewer) H. P. Lovecraft1?!? This is quite odd. I hope my writing is not as hard to read as Lovecraft. And I seriously wonder what this site bases their analyses on.

(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.

It’s fully captioned, but if you can’t play videos for some reason, this is what it says:

“Hi, I’m Anna Baggs. Amanda Baggs is my daughter. I’d like to make some things clear. Amanda is autistic. She was diagnosed when she was 14. I sometimes write on her blog under the name ‘Mom’. No one else blogs there under that name. Amanda does not tell me what to write, and neither does anyone else. I’d like to make some things perfectly clear. Amanda has my infinite support. I’ve had a chance to meet some of the other bloggers at Autreat last year. I took Amanda and it was an incredible experience. For others that I have not had a chance to meet, this will serve as our introduction.”

Before I even heard much more of the story than those details in the last sentence, I wrote the following:

And the guy’s both autistic and black. In America that’s two counts against you and cops have been known to make up stories in either case and outright kill both disabled and black people who have not assaulted anyone and then make up some “well he was violent/he LOOKED violent” thing to cover their own asses. And as an autistic person who has been in similar situations (had the cops called on me multiple times for sitting and waiting outside for people, walking down the street, and other major crimes) the cops don’t even always approach you from the front. And if someone grabs me from behind without warning I am going to fight back because who knows it’s not a rapist and my reflexes work like that.  Because I’m female and white and a crappy fighter (at least that’s my guess) I’ve been either detained in the police station or institutionalized as a “danger to others” at that point (after fairly nasty but not life-threatening treatment by the cops) rather than jailed or shot.  So far. But I can completely imagine that being me, and when it’s the cop’s word against yours weird things happen. (And don’t get me started about the “psycho” and “retard” jokes I hear cops swapping at times like that — including the time I was picked up as a missing person for something as benign as running away from a day program after a fistfight broke out, which I still see as a reasonable response.  They do not value us highly.  Not enough of them anyway. Dennis Debbaudt is the exception.) 

And, surprise, when more details came out, he was grabbed from behind and threatened with racist language. How did I know this? From spending my life since adolescence in situations where cops have been called on me. In all but a couple instances all I was doing was sitting down outside, or walking down the street (the exceptions involved a few times when I screamed and one time I was trespassing, but mostly it was just sitting or walking).

As for how he remembers these things so vividly, first off lots of autistic people have good memories (or good memories when the right thing triggers them, as in my case). Second off, these sorts of events are pretty effing memorable. I can still remember details of similar instances over half my lifetime ago.

If you want to know more then google it. I don’t have any links handy and I’m posting from my iPod. Comments on this entry will be heavily moderated, people wanting to express the idea that this didn’t happen or that this doesn’t happen can go to any of the huge number of websites out there that welcome that sort of thing. And such people deserve a wakeup call about what life is like for those of us who have any (or all) of a number of differences that are obvious enough and devalued enough to get this kind of crap. But if that’s you, this incident has me utterly furious and I’m writing to a deadline which already makes me crabby so just go away.

Edited to add: makoto/pome has commented with several links:

Here’s some links for people:
http://autism-news-beat.com/archives/1146
http://autism-news-beat.com/archives/1137
http://www.huffingtonpost.com/ken-reibel/teen-with-aspergers-arres_b_610530.html?page=2&show_comment_id=50670437#comment_50670437
Audio interview of Latson’s mother:
http://www.blogtalkradio.com/aut_toknow/2010/06/20/lisa-alexander-from-a-voice-for-nelifight-against-
A web page she has set up:
http://avoiceforneli.com/

Kanner saw a bunch of people and grouped them together. He observed some things about them. Some of the observations were accurate. Some were more conclusions than true observations. Then he came to conclusions based on both types of observations. Many of his conclusions were false. (Note: Most of Kanner’s patients would today have a high chance of being diagnosed as AS and all but maybe one or two fit at least one definition of high functioning. Several went on to college. There are many modern myths about who these people were.)

The next person came along and put more people into the category of autistic. These people included people who appeared like Kanners patients appeared, people who were like Kanners patients were, people who appeared like Kanners conclusions, and people who were like Kanners conclusions.

This has been going onin many iterations for generations. And since 1980 it’s been happening to Asperger’s patients and conclusions too. (His patients were roughly the same as Kanner’s, but he drew different conclusions.)

This means that people who get called autistic are an incredibly diverse group of people and that virtually nobody matches the conclusions. And yet those who either match the conclusions, think they match the conclusions, pretend they match the conclusions, or may or may not match but other people can force fit them to the conclusions — those people will get called more typical or more autistic. Even though they are neither.

So knowing all that I’m never surprised when people don’t match the conclusions. The conclusions come from generations of faulty observations, faulty logic, and faulty science. And then no matter what the conclusions are, people who match them or who think they match them or can be said to match them by others, suddenly start getting diagnosed more. It’s a disturbingly tangled thing and I wish more people noticed.

Adding on to what I said before: I am extremely disturbed by the amount of people, autistic and otherwise, who actually believe in the various tangled threads of the idea of autism. Why don’t they notice how these things inevitably have to come about? Why do they take people’s word for it that “This is so because someone with authority says it’s so”? Why do they put stock in tangles on top of tangles on top of the flimsiest foundations? Why do they believe whatever the latest thread of the tangle that is descriptions of what autism is, and then privilege those of us who (say we are/think we are/pretend we are/really are/aren’t but don’t have the power to resist being represented as if we are) the same as the ideas in that thread? Why don’t they notice the difference between being that way, thinking we are that way, force fitting ourselves and saying we are that way, pretending we are that way, and having those with more authority insist we are that way? Why are such people considered “more typical” even when they’re a minority? Why is it that people read Kanner or Asperger and believe their conclusions and value judgements as if they are true unbiased observations? Why don’t people see the contradictions between their observations and their conclusions?

It really harms people when people don’t question all these abstractions piled on top of more abstractions piled on top of still more, for generations now until they are steep towers reaching into the clouds, rather than on or near the ground. (Is it my inability to climb that high that makes it easy for me to question these things?) It makes me feel vaguely ill when I see the various consequences of autistic people themselves believing these abstractions so intensely — whether it’s people thinking there’s something wrong when they don’t fit a stereotype, or acquiring more status because they (do/think they do/say they do/pretend they do/have others with more authority convinced they do).

I had gotten the article because someone claimed in response to a feline ethics post, that everyone who loved animals would agree that euthanasia is a good thing. And AnneC pointed out that this is not in fact the case, and that she (as I do) has serious problems with the overuse of euthanasia on cats. And I remembered this article. Unique in breaking the massive taboo against questioning pet euthanasia:

Disability Culture Meets Euthanasia Culture: Lessons From My Cat

The biggest power we have over cats is the power of life and death. Whether or not we swear we would never use it we still have it. It is not a crime to take a cat to the vet and have her killed because she was scratching the furniture, or because she is homeless. We have this power and cats know we have this power. Every animal knows that a bigger, stronger animal is a potential threat to their life. And this is just talking about uses of euthanasia that have nothing at all to do with terminal illness. I won’t go into everything I think, but suffice to say that I think in a better world euthanasia would not be used for trivial reasons ever, and would not be considered the first and best option (rather than, say, treatment and palliative care) the moment a cat is diagnosed with something scary. And there would be better pet insurance than currently exists, and there would be more research into feline pain management (very different from humans), assistive technology, and modifications to the home. And only then should euthanasia even be brought up as an option, if it has to be. We have too much power, we are too frequently persuaded to use it wrongly, and that we use it out of love and guilt doesn’t make the cat any more alive in the end. (And I’m as guilty as anyone else.)

I described what was happening at the time.

“But what were you thinking?”

“That is what I was thinking.”

“Really, what were you thinking?”

“Well I was uncomfortable with being touched…”

“That’s a feeling. What were you thinking?”

“The dark behind my eyelids. The sensation of pressure on my arms. The sound of rustling.”

And eventually I gave up and he was never satisfied.

The thing is, most of the time I’d give similar answers. As far as I’m concerned, processing sensory input, including emotional responses from inside my body, are part of thinking. They are the main part of my thinking, at that. Yes, I do have the kind of thoughts that everyone calls thinking, but not all the time. Not most of the time. Sometimes it pops up automatically and sometimes I push my way into it. That kind of thought takes work and work takes energy. Even locating touch as on my arm takes energy, but it takes less, especially if I’ve had time afterward to work it out.

So that’s yet another common assumption: That everyone uses that standard kind of thinking¹. So much so that many people (including many people like me) decide that my predominant way of thinking isn’t thinking.

¹ When I say standard thinking I mean a wide variety of kinds of thought. It doesn’t matter if it’s in words, pictures, abstract ideas, or what. And it’s not a matter of being “NT”. What makes it “standard” for these purposes is that it goes beyond taking in your environment in realtime. I’m sorry I couldn’t come up with a better term for it.

I now have an implant that zaps my muscles in some way I don’t fully understand, to stop my urethra spasming so I can urinate. And it’s working extremely well most of the time and moderatelycwell the rest of the time. I’d forgotten what normal urination felt and sounded like. (And yes I tried other treatments before going to this.)

I now have a remote control with a receiver in my butt of all places.

It’s going to take awhile to recover from the surgery though. The pain isn’t too bad (surgical pain is usually less painful than several of my chronic pain conditions). But bodies don’t differentiate between surgery and being stabbed, and I’m on megadoses of antibiotics, and anesthesia makes me weird for at least a few days. Not to mention that my body is trying to figure out what the implant is doing inside of it. I hadn’t recovered from the surgery to put the test wire in by the time they did this surgery, so figure on me being blech for awhile (and I had to promise the doctor I wouldn’t do all the bending and lifting and crap I did after the last one).

If I don’t moderate comments very fast, this will be why. Then again I’m lying around not doing much so maybe I’ll do it more.

Can’t word much a lot right now due to ongoing medical stuff (incapacitating but not bad, will fill in later) so all can say is go read that post.

I left the Hub last November and wrote this post explaining why.

I have had, and wanted, nothing to do with it since then. Heck, I have wanted nothing to do with it since a long time before that and stuck around from pure inertia.

I am not part of the committee that runs it. I am somewhat annoyed at the committee who runs it (and I don’t know or care who they are) for listing my blog there again, despite my previous posting about why I didn’t want to be there. They assumed I would want to come back as soon as the Hub was under new management. As if that was my problem with it. All the problems I listed in my post remain problems and may always be problems no matter who runs it.

Some of the problems I listed are problems that come up in most groups. There is a reason I am not part of most groups (and any groups I remain part of, my participation is generally pretty dormant, aside from one I just remembered that remains blissfully drama-free and is quite task-focused rather than nebulous).

I am not part of the group even in any casual manner. In fact, at this point I can’t think of anyone I interact with regularly on a casual basis who is a Hub member. Not that there’d be anything wrong if they were. There just aren’t.

I really, really loathe both formal and informal groups that attempt to function like Hotel California (”You can check out any time you want but you can never leave”). Because I don’t at this point want to be associated with any group at all. But there are a couple groups that have never accepted my leaving or where others outside of them have never accepted my leaving. And that’s not okay. Groups you can’t leave no matter what you do are my worst nightmare.

*sigh* I don’t mind the existence of groups. I don’t mind other people being in groups. But at this point in my life group membership feels like entanglement and strings attached. If I have a goal in common with a group that I feel strongly about I will work with it when necessary and then part ways. There’s nothing about the Hub that I feel that strongly about, and I’ve always been bothered by the concept of Hub As Group instead of Hub As Blogring anyway. When I joined it was a blogring, when it became something else I wanted out.

So this isn’t about unwillingness to work with people or groups. It’s about unwillingness to join groups. It’s about a loathing of places with entanglements and strings attached no matter how much or how little they may appear to have things in common with me. It’s about being sick of being pigeonholed as an autism blogger or something else like that when I’m an ethical/political blogger who happens to be autistic among many other things. It’s about everything else I wrote about in my old post when I left, and much more of the same general sort. It’s about being a human being and not a stereotype, not even a beneficial seeming one.

Do I hate communities? No. But I hate groupthink and other cognitive warpage that sometimes springs up in them. I hate when I feel like an individual interacting with a group of other individuals, but other people insist on acting like I’m a representative of the group or like we are all identical.

So, basically, no. I am not part of the Hub. I never again will be part of the Hub. No matter how the administration changes. And I am not even part of the Hub in an informal sort of way. I’m just not. Period. And I am the only person in the world who gets to decide what I am and am not part of, and what that means to me.

Comments are disallowed because I don’t want to discuss this, I just want it known. Having it ignored is aggravating enough, I don’t really want to go through all the social crap that transpires after statements like this, I haven’t got the energy (less than usual, even).

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.

A community that tolerates and enables bullies, stalkers, and miscellaneous similar people, is no community at all. Do that and eventually many of the people who are or fear being targeted, will just fade away and hide. And only those of us stubborn enough to remain despite the harassment, defamation, and death threats will be left. Taking part in a community shouldn’t require the level of stubbornness I have learned, or disregard of one’s own safety. I go online every day knowing that my address has been posted on the web along with solicitations of murderers, rape jokes, and just about every possible level of nastiness and invasion of privacy — and my friends, family, and coworkers have been subjected to the same things. I’ve even seen other people first victimized by the same bullies and then told “The bullying will stop as soon as you denounce Amanda/join in the bullying.” I have learned to live with that. But people shouldn’t have to live with that.

There is no excuse for actively enabling bullies. These things are not some kind of “it takes two” situations (flashbacks to being beaten up in elementary school and being told “it takes two”). You don’t see me, Kowalski, SBWG, or most other targets running around harassing, threatening, or stalking anyone (although you can bet that bullies try to make themselves look as if that is happening to them to justify what they do to us). Sure I’ve seen bullies and their enablers bullying each other from time to time, I’ve seen two stalkers stalk each other. But it’s not normally what’s happening. These aren’t personality conflicts. This isn’t about someone just “not liking” someone else. And it’s not like being autistic or otherwise disabled means someone’s innocent — back in my IRC days we had at least two autistic stalkers and at least two autistic child molesters banned from our channel as well as miscellaneous other autistic bullies. (I’ve also heard “But she hasn’t killed you yet so the death threats are harmless.”. Seriously?!??)

This has to stop being acceptable. People have to stop being complacent. Any community that tolerates and enables bullies is practicing de facto exclusion of everyone who is in so much fear of being a target that they leave. That’s why my blog doesn’t allow such crap to go on here. If bullies want a forum they can have it somewhere other than here. (And when autistics.org begins to allow other blogs again that will continue to be our policy.) You shouldn’t have to have the kind of emotional shielding I have learned in order to participate in online discussions. (And yes this is an accessibility issue.) People need to take a stand on this stuff and quit sweeping it under the rug. Otherwise the bullies win every time someone fails to write because they’re afraid. (Although what the bullies are winning always confuses me. I mean they don’t actually gain anything legitimate or useful from what they do. They just get to be incredibly nasty to people. Which is a pointless goal.)

Also, bullying does more than silence people. It also kills. People commit suicide because of bullies all the time. (So all of you well-meaning people who enable bullies? Look at what you’re enabling because it ain’t harmless. And it wouldn’t be harmless even if it “just” caused pain, fear, and suffering either.)

I’ll end by linking to meloukhia’s post: Internet: It’s time to talk. And a warning: neither bullying nor apologist/enabling bullying will be tolerated in comments. So don’t even bother trying.

Edited to add:

Riel of Amorpha came up with a list of good and bad ways to deal with this kind of bullying and put it in comments. I am adding it to the end of this post because it’s important enough I don’t want people to miss it:

Finally came up with some thoughts (after we said in reply to Kowalski’s post we were still thinking about it) about things that we think are helpful and not helpful when a community is trying to deal with online bullies. Much of it gained through bad experience when we tried to deal with them in the wrong way or other people around us did or tried to encourage us to deal with them in the wrong kinds of ways.

What is useful:

• Supporting the victim of the bullying and affirming that they have the right to be free from bullying.
• Taking their fear seriously (as opposed to blowing it off with “oh, you shouldn’t care what those people think,” etc).
• Block known bullies, and people who have agreed to defame others in order to escape bullying themselves, from commenting in any space you can control. Even when their comments are not actually harassing or targeting anyone. Because just seeing their presence can have a chilling effect on others– “okay, maybe they didn’t attack me that time, but what about next time?”
• Keep others in a community informed about the activities of known stalkers, bullies, etc, if you see them going after new victims, starting new harassment campaigns, etc. Also if you know they’ve been creating new aliases, sockpuppets, posing as others, etc.
• Find some way to warn newcomers to a community about stalkers and bullies. Especially if you see them gravitating towards bullies because they (new people) haven’t seen their bad side yet, or are confused about who to trust, or are falling for the pseudo-authoritative veneer a lot of bullies have, or think they should “give them a chance,” etc.
• If harassing/bullying/intimidating comments do get through in any community you have power in (in large communities, for instance, sometimes this can be hard to prevent), make clear, for both the victim(s) and for bystanders, that you will not tolerate this kind of treatment of others.

What is NOT useful:

• Telling the victim of the bullying to “not care about what other people think.” To a certain extent it’s true that you need to not care what other people think, if you want to express opinions that are currently not accepted by most of society. But when harassment goes past a certain point, and especially when it gets to the point of threats of physical or legal harm, it can’t be reasonably ignored.
• Telling the victim of the bullying to ignore it because the bully is too “unimportant” to be taken seriously. “Unimportant” people can still become extremely persistent harassers and stalkers. And it doesn’t matter how “unimportant” someone is if they’re genuinely able to convince others of their lies, or incite them to attack or threaten people.
• Trying to argue/letting other people try to argue with them in comments. This both has a chilling effect on others and floods out any attempts at actually productive discussions. (Several people have already talked about why doing this in the name of “free speech” is a bad idea so I won’t go into it.)
• Trying to drive them off by being “just as mean as them” or trying to incite “war” between your supporters and theirs. Just… no, this always goes horribly wrong.
• Trying to find a “middle ground” between yourself and a bully, or between your ideas and theirs. A bully will never accept a middle ground. They will only accept terrorizing and manipulating you into shutting up or repeating their ideas as if you agree with them.

We’ve also seen the thing that AnneC mentioned about bullies (some of whom appeared to be totally the opposite of bullies at first meeting) acting like they are “in the know” about everyone and everything and like they can inform you about all of it, and putting scandalized interpretations on everyone and everything and getting people emotionally riled up for their own purposes.

I noticed two really important aspects of this story. It’s about the difference between my life as experienced by me and my life as defined by everyone from professionals to random others around me. It’s also about the intense lifelong passivity that (despite the best efforts of the professionals who pathologized it) I have only recently begun to break out of. Someone online once aptly described it as “leaf in the wind”.

About the unfamiliar words used: Ghin and foom are nonsense words intended to serve as placeholders for certain ideas in the story. The sea of Nun is an actual part of ancient Egyptian folklore, although this story I am telling is not a part of that folklore and isn’t intended to correspond to anything other than certain aspects of the water itself.

In the Sea of Nun

You told me I didn’t know what water was
I told you, “There is more to the sea of Nun than you could ever guess”
But you told me words were the only way to wisdom
Do you know what life is like floating without fins or flippers to move yourself from here to there?
Do you know what it is like before those words you hold so dear?
Have you been blown around in the currents?
Have you had to make your life wherever the water took you?
I may have seemed like a sleepwalker to you
Without the parts you use to guide and steer
But part of me has always been wide awake

I sit alone, and time is gone
You come in, and turn into a blur of movement and sound
I am like a statue watching living people fly past
But when I’m alone, time stands still for me again

In between your words is silence
In that silence is the world
Beneath all your ideas things come together on their own

I am awake when you call me asleep
I have a voice when you call me silent
I can navigate where you see only chaos
(In the waters of Nun)

The lines are twisting underwater
I feel them spread and branch away
They twist around the corner
They wrap around me sideways
They double, triple, even more
They slide around and up and down
And still it all makes sense to me
Or maybe it makes me to sense
Either way this is my home
And there is life in the sea of Nun

One day I woke up
There was more than the sea
There was a strange place
I found myself there
I didn’t go there
Make no mistake
I just was here then there

How can I describe it?
You have always had a ghin
What is a ghin?
It’s what you’ve always had
I don’t have a ghin
Something else was built
But how can I describe the building?

You have a ghin
You can never know the steps it took
I didn’t build it
It built up like collecting dust
So the dust settled on me
More dust
More dust
More dust
More dust
Eventually the dust hurt
And more dust
(Ow)

And then a mound of dust
A mound shaped a little like a ghin
But it was not a ghin
I will call it a foom
My foom tried to be a ghin
It had not the parts of a ghin
And the foom hurt
And the foom hurt
And the foom hurt
And you said “She is alive, she has a ghin”

And they all danced around
They looked at the foom
They touched the foom
They said “She is alive, she has a ghin”

“Where did she come from?”
(He pointed to the sea of Nun)
“Oh surely not there”
“Nothing from there is alive”
“Nothing from there has shape”
“Nothing from there is real”
“Nothing from there has a ghin”

They set me in the shallow water until I floated
They poked me with long sticks
They watched me bob around
They laughed

I felt the currents underneath me
They could not feel those currents
To them there is only chaos in the sea of Nun
They saw the part of me that was above the water
I lived in the part of me below

And they pushed, and they pulled
And I floated side to side
And they clapped, and they laughed
And the sea of Nun became my tears

I stopped moving
They threw a rope and pulled
I washed up on the shore
They formed a circle around me
Then they drilled me full of holes

They filled each hole with a different machine
And they whirred and they clacked
And I buzzed and I bounced
But the machines all fell out
So they pushed me back in the sea of Nun

And there I stayed and there I dreamed
And there the currents pushed me round
And there I drifted, there I slept
Until I grew flippers

I knew Adam.

I didn’t know Adam’s mother.

That’s important.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”¹

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are

AnneC and I are trying to debunk a lot of similar myths about cats. The tests cats are given are often not cat-friendly and don’t reflect cats in their usual environment doing their usual things. And I’ve long known that Fey uses mirrors. In fact sometimes she uses two mirrors at once — the one over the sink and the one on the bathroom door — to make direct eye contact with people. More than one staff person who thought cats couldn’t use mirrors, have been startled, some even terrified, to see a cat looking them straight in the face using a mirror or two. One even screamed and dropped what she was carrying and just kept repeating, “Your cat looked at me in the mirror. Cats can’t use mirrors.”

Here’s a photo of her using one mirror to look at me as she hears me come up behind her with a camera:

As to why that scares people? I think it’s the same phenomenon that has terrified many people about me. They see me going about my business and stereotype me as not being what they consider a real person. Then I do anything from looking at them to typing something and they visibly startle and begin to act scared. They respond to me as if a potted plant got up and walked around. And I see people doing the same to Fey all the time.

And why that is… I’m not entirely sure. I almost expect them to cross themselves like we are demon possessed. They think of us as something unnatural, something deeply wrong that just shouldn’t happen that way. And there’s something deeply wrong with that in a whole different way than what they think of us.

[Photo is of me with new glasses on.]

So at my last eye exam (where I also have a way stronger prescription than before) the guy finally noticed I was seeing double. I had gotten to where I really had to concentrate to tell if I was or not because it’s been that way so long when my eyes are relaxed. (I had even bought an eyepatch for days when I really wanted single vision, and other times taken to closing one eye a lot. And I had no idea you were supposed to tell eye doctors about seeing double. I said I did once when my regular doctor asked and he never mentioned glasses.) And then he did a bunch of tests to see how far my eyes swing between double and single eye vision, told me I had exotropia (eyes that point outward from where they should, in my case both eyes), and prescribed prism lenses.

He told me it would feel weird when I got them on. And it did. Things sort of converged and then diverged in the other direction and swung in and out back and forth for awhile. Rapidly. Then it got so I was seeing single except if I relaxed too much. But the woman at the glasses store said that should change in a few days.

The hardest part to deal with, though, is the depth perception. I’m used to not having that. Even my tinted lenses didn’t help it this much. But it made my trip home completely terrifying.

I never knew how high off the ground, and therefore prone to tipping sideways, my powerchair was. There were all kinds of bumps in the sidewalk and missing tiles and stuff that look huge, I used to think they were quite shallow. At one point I overcompensated and drove my chair into a position where I was sticking out into the road and my wheels were spinning on air. (Thankfully a pedestrian helped me.)

I got home very carefully and nervously. I was constantly distracted by stuff sticking out at my face, noticing relative tallnesses for the first time, and really disturbing-looking bumps in the sidewalk. I used to navigate largely by feel, using sight just for crude measurements of where to go. Now sight was so accurate it was some combination of distracting and unnerving.

They have all told me it is a terrible thing to switch between prisms and regular lenses. So I am not doing that. It is weird though to take my glasses halfway off and see that something is double outside the glasses and single inside them.

So that’s all I know so far. They say it’ll take at least a few days before I finally get used to them. I hope I get used to having depth perception because running around outside seems fairly hazardous until I do. Things that I’ve done a hundred times by feel are outright scary now that I can see the size of some of the sidewalk cracks. I wonder how many of my visual problems are related to this, and how long I’ve had it.

[Photo shows Fey, a grey ticked cat with a white stripe down her belly, white paws, white chin, and a white four-pointed star on her nose, with yellow-green eyes. She is lying on her side, with one paw curled over.]

Today was one of the first days it was warm enough to take Fey out again since last fall. As usual, she was not happy with the actual feel of being lifted and put into the PetPocket. But everything else about her behavior — even including loving to sleep on the PetPocket — has always seemed to show that the good part of these walks tends to outweigh the bad (although when you’re dealing with someone whose only language is Feline, it’s always possible you’re missing something major). So I took her outside.

She never likes the elevator, and she never likes traffic although she can get used to it. But generally by the time we are out of the building and away from the lines of people flanking the entrance and going “ooooooooo kiiiiittteeeeeeee”, she calms down and starts looking around.

[Photo shows me out in my powerchair with Fey peering out of her PetPocket.]

This being our first day out, she mostly wanted to duck down inside with widening pupils when we were near traffic. So we headed down a side road to get away from the noise (which frankly wasn’t my favorite thing either).

And then we heard it. Some kind of chittery bird noises up in the air. And Fey stopped worrying about traffic and poked her head up, ears pointy, whiskers out, eyes wide but
pupils normal, nose twitching like a rabbit. This is why we go on walks.

[Photo is a closeup of Fey looking around out of her PetPocket.]

We found a tree with a bird’s nest in it and Fey just stared up and whipped her head around to get all the different birds in her sights. I sat around in the parking lot and tried to maneuver the chair wherever her head was pointing. After about half an hour we went home and she curled up in bed with me for a few hours.

But it doesn’t end there. This kind of thing never does. As it started to get late, I heard a “worrreeeauwwww” (and assorted other multisyllabic cat words) coming from the living room. Usually I go out and if she wants water she goes to the kitchen, and if she wants play she goes to the living room. She went to the living room.

Usually our play is pretty predictable. Nearing 11 years old this year, she doesn’t run all over as much as she used to. She likes to sit or lie on the couch while I wave a Cat Dancer back and forth in wide sweeping motions that come near but don’t touch her head. She bats at it for awhile, sometimes more enthusiastically than others. If she catches it, I give her some fish flakes (she loves them so much she’ll eat them out of my hand) and then wait for her to finish grooming herself. Then we do it all again if she wants to. I know most cats like to act as if the toy is prey, but she has made it clear she generally prefers the slower pace of trying to hit it as it whizzed by her.

Well, this time, I got out the Cat Dancer and started to wave it back and forth. WHAP. She hit it on her first try, which is unusual.

[Photo shows Fey delivering a WHAP to the Cat Dancer.]

Then she got me to move it all over the couch while she chased and scrabbled and leapt into the air like a kitten. Her accuracy was way beyond usual and so was her interest. She stood on her back legs and whapped it again and then worked her two front paws in a rapidfire back and forth motion until she had to sit down. Then she did it again. And again. And flopped onto her back to scrabble at it from that position and just kept going.

[Photo shows Fey on her back following the Cat Dancer with her eyes while her two paws are bent into different stages of grabbing at it.]

When I offered her the second round of fish flakes she nipped me (with a “HEY don’t stop now!” sort of look about her) and went back to chasing the toy everywhere until I was finally the one who had to stop from exhaustion.

[Photo shows Fey lying on her side and attacking the Cat Dancer with her claws out.]

When I first bought the PetPocket I had figured it would be better than sitting at one particular window all the time, and that maybe it would fuel her imagination for future play. But I never expected it to be this extreme. Her play suddenly got far more complex, lively, and strategic. And I could tell she was saving up imaginary small animals in her head to hunt back home with the cat toys.

And today has made it clear things still work that way for her. She was nearly doing backflips and probably would still be playing if I weren’t worn out. She hung out in the living room for awhile hoping for more, but has come in and curled up next to my head now that she realizes I’m not going anywhere.

[Photo was taken seconds after the previous photo. Fey is lying on her side. The Cat Dancer is near her belly. She is reaching for it with both front paws, and has her mouth open to bite it with her fierce white fangs showing.]

If you want more cat blogging, AnneC has done a great post on finding out why Nikki (an 8-year-old Siamese) was doing a bunch of things that seemed to make no sense. I am already liking her new cat blog Felines Are Wonderful a lot.

Human arrogance towards cats frequently goes two apparently opposiite directions.

1. Cats are like miniature humans in every way. They understand every word of what we say, are motivated by exactly the things that motivate us, and if they don’t respond exactly how we expect another human to respond then they are just being stubborn, callous, cruel, manipulative, etc. Any attempt to say otherwise relegates cats to the realm of dumb animals.

2. Cats are totally unlike and inferior to humans. They do not understand a single word of what we say, cannot love, cannot reason, are not self-aware, etc. They see us as food sources and nothing more. Any claim otherwise needs to be rigorously proven in a laboratory setting, and is probably a misunderstanding of basic instinctual behavior.

The first approach is arrogant because it comes from a tendency to view the world, and especially cats, as a reflection of humanity. So it views respecting cats and seeing them as human as if these two things are synonymous. The second approach is arrogant because it views certain traits as exclusive to humans (or at least to “advanced” animals). It also, like many false ideas about cognitive disability in humans, views it as “scientific” to start from the assumption that cats lack certain abilities and demands absolute proof of the presence of those abilities before it will believe in them. Whereas for “normal” humans the preesumption is that we have those abilities.

From my standpoint those views are two sides of the same coin. The idea they both stem from is that humans are superior in certain ways. It’s just that one solves the problem of respecting cats by giving them traits identical to humans, and the other just doesn’t bother respecting cats and assumes that only humans have traits that are common among many species, cats included.

Often someone who holds one of these beliefs will assume that the other belief is the only other one possible, so that if you doubt one you must believe the other. If you doubt the first one someone will think you believe cats are nothing like humans and are overly wedded to the biases of many scientists, and if you doubt the second one someone will believe you’re engaging in overly sentimental anthropomorphism.

When most people think about cats, they see them as having a life that is simpler than our own. A little life that can be contained inside the bigger concepts that humans have. Emotions are like ours but fewer of them, thoughts are like ours but less complicated and not as many, and so forth.

This is not a useful way to look at the lives of cats. They are not miniature humans, and they are certainly not like humans but with certain aspects blunted, removed, and simplified. They are cats. They have their own complex way of relating to the world and each other. They have their own emotions which they feel according to their own values. They have things in common with us, but it’s dangerous to assume either identicalness or that they are just limited versions of us.

So when you think of cats, have some humility. Understand that there are more aspects to their way of doing things than humans can even perceive, let alone understand. This doesn’t make cats innately mysterious, it just means that we are working with different bodies, sensory organs, and brains. Even humans with the best sense of smell have nothing on cats. Our visual system is set up totally differently, not only can we not see in low light levels but our perception of motion is nothing like a cat’s. These are not little differences, they shape cats and humans into very different beings. As humans trying to understand cats, there are just flat out things we will only comprehend the vague shape of, and others we will never guess.

Be excited over these differences rather than trying to think of cats as inferior or even simpler beings. This is not to diminish what we have in common either, just an attempt to avoid making them into lesser beings just because they are different ones.

It is also important not to think of yourself as a Cat Expert. If all the stories you tell others or yourself contain phrases like “good with cats”, “a way with animals”, etc., then you are headed in the wrong direction entirely. You may have an affinity with cats — I have always found them easier to relate to than humans — but the moment your self-image depends on being right about all matters cattish, you are doing the cats a grave disservice. Because once you enter that frame of mind, you will begin to delude yourself and forget that you can make mistakes. The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. And ‘people’ there includes cats.

Whenever someone meets Fey and begins by saying they are ‘good with cats’ or similar, I try to convey enough watchful alarm in my body language for Fey to pick up on it and get on the alert herself. (Such people never notice this body language in either one of us.) Some things I have seen such people do:

1. Grab her and find a way to hold her where she knows she can’t fight. At that point she gives up (but looks terribly uncomfortable) and they tell me, “See she likes being held after all if someone who is good with cats does it”.

(I have even seen mention of that one in a better than average book about cats. But most cat books don’t mention it or other ethical issues at all, except sometimes to reassure humans that whatever decisions they make for cats are the right ones.)

2. Try to do whatever I just told them not to do. If they succeed in doing it without provoking a major response, they assume she is okay. If they do provoke a major response (hissing, spitting, tail lashing, ears back, clawing for instance) they go “awwww what a cute playful little kitty cat” and make me want to go at them with my claws out.

For example, Fey has some kind of condition affecting a particular nerve going to her back right leg. The vet said she had never seen a cat so thoroughly indicate that the problem is a particular nerve and not others. I tend to tell people to avoid her entire back end. On good days she will initiate touch in that area, on mediocre days she will allow touch but stiffen and look uncomfortable, and on bad days she will indicate pain in every possible way and defend herself by any means necessary.

Some really egotistical people will, upon explanation of this, proceed to grab her by the exact body part that hurts in order to try and prove they are Special People Gifted With Animals who can touch her there without provoking a response. And even if she responds by mauling them, they Dont Get It. At all. No matter what happens, they especially don’t get that causing another living being intense physical pain on purpose to prove that they are a special good kind of human only proves that they are an especially terrible, insensitive, and cruel kind of human who ought not to be allowed within a mile of a cat.

(I have also seen these sorts of people at the animal shelter. Fortunately they get thrown out pretty quickly because, among other things, if an animal scratched someone they have to be put in isolation for a long time which is horrible for the animal and everyone wants to prevent it. And because the people who work there actually care about animals.)

3. Read all sorts of bizarre and obviously false things into her behavior because they just can’t possibly handle the idea of not knowing what some action on Fey’s part means. Which in turn leads to really pissing her off eventually.

4. Use their “knowledge” about her as an ego trip or power play with me or other people.

5. Do any or all of these things to me as well, because lots of people who view themselves as Good With Cats also view themselves as Good With Autistics (or sometimes Good With Nonspeaking People). And they especially love to do it in situations where I can’t do anything about it. Such as get me in a situation where I can’t respond well and then harangue someone for ‘upsetting me’ or something when nothing of the sort has even happened.

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse. It doesn’t matter if everyone around you comments on your gift with cats, your way with cats, your being a cat whisperer, whatever. I ignore such comments if I get them. I have a close relationship with a cat. Not special powers. You should never ever let praise go to your head. No matter who you are, your ability to make grievous mistakes when trying to understand another species is an absolute given. Until you understand this, avoid cats.

And if you have either thought “This part of the post doesn’t apply with me because I am too good with cats to make serious mistakes,” or if you respond to other cat lovers admitting to serious mistakes by either thinking or uttering “I am so good with cats that I could never make that level of mistake”? That goes double for you. I have a deep and rewarding and loving two-way connection to Fey that is more detailed in our understanding of each other than any other relationship, human or cat, that I have ever had. And we both make mistakes and have misunderstandings every single day. If you think that doesn’t happen you are fooling yourself and setting yourself up to harm the cat.

The other direction arrogance can go is in assuming there is no actual harm in making massive mistakes because it’s just a cat. Or worse, that because the cat can’t tell anyone what you do, it is really okay. I have only ever got one person to admit that last one. But as someone whose ability to communicate in standard ways can come and go, I have watched what I thought were decent people transform into assholes many times the moment they thought I was either unaware or unable to tell anyone what they had done. And if it was bad for me it would be worse for cats.

I don’t really know what to say to all that. I know people who think if someone purportedly can’t understand what’s happening then cruelty isn’t wrong. I know some peopleonly care about being caught doing wrong, not about doing wrong itself, because such people have done awful things to me when I either couldn’t tell anyone or wouldn’t be believed if I did. But I know that each time people play out such attitudes on cats, the cats suffer.

Cats also suffer when treated like humans in cat suits. They end up being punished in ways that feel like a random attack from nowhere for no reason. People do things that are polite to humans but terribly rude to cats. And cats also suffer when people assume that things like love are too human for cats to fathom. Working across species is even harder than working across cultures in many respects, it’s hard to know what’s exclusively human and what we share with other animals. And there are things we may never know.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. Be alert to signals that the cat doesn’t like what you’re doing, and don’t laugh them off with “awwww aren’t we feisty today”. Treat the cat as an individual and conscious being that you are getting to know, not as a human or a mindless automaton. Keep your ego out of the way. And above all, be aware that despite differences in species, you are dealing with someone (not something) who is capable of feeling love, physical and emotional pain, anger, joy, fear, and many other things. Treat them accordingly.

The photograph is of Fey, a grey cat with ticked fur and some white markings. She is lying curled up on a foam mattress on top of a hospital bed tilted slightly upward. Her face is at the top, in profile. You can see the dome of her eye, with a large black pupil underneath, her eyebrow whiskers pointed straight up, and a big triangular ear pointed directly at the camera. The focus becomes fuzzy towards her tail, which is curled up and around. You can also see the shiny bedrail with some notebooks behind it. The mattress she is laying on is yellow memory foam with a pale green bedsheet part on and part off it. The foam is roughly the same shade of yellow as her eye.

A lot of autistic people who, like me, were assumed (rightly or wrongly) to be anywhere from somewhat to highly capable by many people during our childhoods, seem to have something in common that I don’t have: They were most of the time a combination of several of… stiff, unusually formal, considered “dweeby”, reserved as far as interaction with their physical surroundings yet obviously “engaged” to a certain degree, and in general… lots of similar things I don’t quite have words for.

I was considered some of those things some of the time. But I’ve noticed some people assume that’s how all autistic kids who were regarded as highly competent tended to act. And they leave out of their calculations a lot of things that were true of me.

Yes, I was socially awkward, had meltdowns and shutdowns, and lots of other stuff. But I was most of the time very, very involved in my physical environment in all kinds of ways that made me stick out in totally different ways than many other autistic kids did. Note that it wasn’t all of these things all of the time. It was at least a few of them most of the time at minimum, and when I wasn’t hiding as well it was more than a few nearly all of the time.

I would sniff things. Books, pencils, wood of all types. If I saw a cat I would get down on all fours and politely (in the cat world) sniff their noses. I would sniff rocks, tanbark, metal, rubber, computer and TV screens, and many other things I came into contact with. Not to mention picking my nose and sniffing the contents (no I have never been able to stop no matter how much teasing or reprimands happened or even injury to the inside of my nose by peeling the lining off, it’s like trichotillomania, it’s not that easy).

I would also grab things and stick them really close to my eyes, or wave them around in the vague vicinity of my eyes (I have good peripheral vision so this means anything from just in front to on the sides). I would wave my hand in front of computer monitors. I would do things with my fingers just to watch them. I would spend hours watching ants or water (which I might also get my hands involved with) or lots and lots of other things involving getting things really close to my eyes. And chasing dust particles. Not to mention doing a very intense purr-like noise that jiggled my eyesight up and down.

I also did elaborate things with clothing, hair, and jewelry. Not for the purpose of decorating myself for the sake of others, but for the sake of being able to carry around things I could either grab and look at, or see anytime I had a mirror, or (in the case of braids) run my fingers over. This stuff wasn’t an enactment of a social ritual (which is good because sticking earrings and pins throughout your hair doesn’t get you anything but laughed at) or for any reason external, it was entirely so I could have lots of portable stimtoys. I could grab the necklaces and stare at them or suck on them, ring my bell necklaces in my ear, stare at, smell, or suck on my paisley shirts or busy-patterned skirts, run my fingers over coiled braids or other jewelry, or stare at the whole mess in the mirror.

(The photo shows me sitting in between my two brothers, in my brother’s room, with lots of jewelry on, staring at one necklace or similar object.)

I also had some visual phenomena I would get really absorbed in. I see various patterns that probably range from retinal lights and afterimages to migraine auras (both my parents get migraine auras without the headache) to the occasional seizure. But I would get totally lost in that stuff, and find patterns in it the way people do with clouds. I got sent to at least two separate counselors (one in an academic summer camp and one in my brief attempt at high school) for staring at walls in my free time in order to watch that stuff. Other kids just used that as an excuse to do things like wave their genitals in my face to try to get me to stop (it’s amazing what people will do to you for the crime of not appearing to pay attention to them, even when they make it clear you’re weird enough they don’t want your attention).

I was constantly sticking things into my mouth long after that phase is over for most people. Not just pens or pencils either. I chewed sets of rubber jacks balls to the point of really embarrassing my mother once when someone caught me sticking several in my mouth on video. I did this the most often before puberty but I did it after too. I was really happy when someone gave me different lengths of aquarium tubing when I was nineteen for the express purpose of chewing. I chewed and sucked on my own skin, too, hard enough to leave marks. And my hair. And ran the outsides of my tongue over my molars over and over to create a sour taste. And had a metal necklace I sucked on and spat out over and over until the outer gold-colored metal wore off.

I also liked textures like velvet, cat fur, varnished wood, anything large and cold and flat, etc. and pressed anything from hands to cheeks to large amounts of my body onto them, or rubbed them.

I had a weird thing I did in chaotic environments like school dances where I would frequently stand right by the speaker because even though it was earsplittingly loud the music was more orderly than the crowd noises. (At first I’d dance if asked to, or outright find someone to dance with if the song was “Stairway to Heaven”, but later I found it easier to just spin in circles.) I also hummed, whistled, and sang, sometimes all in rapid succession, and had a single toned hum I would do by keeping my ears clicked so internal sounds were loudest and then humming to drown out other chaotic noise. Got pulled out of school assemblies for clapping my hands over my ears over and over to create a rhythmic pattern to people’s voices or music. Played single songs until I wore out several tapes and tape players.

And this is not to mention the spinning, which I did at every dance starting just after seventh grade instead of running up to the speakers or trying to dance with people. And which I also did plenty of without dances as an excuse. And the pulling out all the paper towels, and all the soap, from dispensers, then smearing the soap all over mirrors. And climbing things. And assorted other things that were more actions than any one sense being explored.

And doing something kind of hard to describe. In new situations my sensory input seemed more and more chaotic. (Been planning a post on something related to that too.) And after awhile instead of panicking, I’d started embracing a sense of total randomness. This is the same sort of thing that could make a person really lose it in new situations, but it’s sometimes possible to sort of ride it out like some kind of funhouse ride instead of becoming tense or fearful. (Or as an autistic friend of mine puts it, “As long as there are shopping malls, I will never need LSD.”) This is yet another thing you never hear about because it’s assumed “resistance to change” is just The Way Things Are for all autistic people instead of being one of many possible responses to a more central experience of having things become really confusing the more change or new or unexpected input there is.

And when I did talk about my special interests they were about things like fractals, chaos theory, alternate realities, and psychedelic rock bands. Or any and all kinds of surreal or nonsensical things (including going around saying weird things in several languages that I couldn’t actually speak except to say weird things in). (The embracing of nonsense being one more way to deal with the speed of things changing around that time.) This… did not help.

Then there was… the other stuff. The ways I seemed cut off from the world instead of overinvolved in the wrong parts of it.

Part of that was due to my being heavily tuned into internal sensations. Like when I would sit down cross-legged, pull my skirt across my lap, stare at it, and proceed to vividly replay in my head scenes from Red Dwarf or Star Trek (other times it was listening to white noise and picking out single frequencies to replay songs I had memorized). Other times it was just something like pulling my hair over my face like Cousin It (wonderful to stop seeing lots of overloading stuff), or sitting around with my eyes shut. Or what my parents just called “Staring” with a capital S, where I’d basically sit there and appear to be staring at nothing at all (which could range from overload to replaying things in my head to just some coincidence of my eyes and facial expression, or could even be getting lost in various visual oddities I discussed before).

The point of all this? When many people picture an autistic kid who went undiagnosed until early adolescence, they seem to picture the formal stiff thing going on. They don’t picture the kid who involved herself in all kinds of supposedly inappropriate sensory activities, and seems physically pulled towards these things as if by gravity. But that was me.

I didn’t do these things every second of every day. But I did them enough to attract all the wrong kind of notice. While some people called me a nerd or a computer or those usual insults, much of the teasing I got revolved around being very, very attracted to physical sensations of all kinds, or else looking very, very tuned out. There’s a reason my mother insists on comparing me to Luna Lovegood rather than a more stereotypical nerd (or to, say, Ernie Macmillan, who was so formal he sounded pompous).

Yeah I did get called a nerd But mostly I got other things. When you’re younger and you behave this way, you become a weirdo, alien, psycho, crazy, tard, space case, elf (yes that whole fantasy started because someone called me one — if I could pick a Tolkien creature to compare myself to I’d be an Ent) etc. When you get a bit older you get called even crazier. And then eventually everyone and their dog thinks you’re on drugs.

This is one reason that I question the entire concept of passing. I rarely spent five minutes around other children before they figured out I was different. Often it was more like five seconds. Kids weren’t generally picking up my intellect or nerdiness (they might pick that up later but not immediately), they were picking up my strangeness. Much of the time they said so quite openly and as we got older they were trying really hard to explain why I was strange. But I was always strange, there was never a point even when I did my best attempt to “behave” that this was ever in question. Even when neuroleptics drastically tamped down on my ability to explore my environment in those ways I could expect to wait seconds before I was pointedly and often out loud judged as some kind of Other. Even among kids in mental institutions where the rate of neuro-atypicality was higher, I only very occasionally connected with anyone and it was always their doing, others just either shunned me or found ways to do harm to me.

Weird thing is even though I heard all about being strange my whole life I always underestimated my strangeness. I rarely connected all the dots in others’ reactions to me. I knew I was different but since I couldn’t imagine how all the things I did looked to others, I assumed I was “normal enough” largely because of that and because I was always around myself and therefore found myself… not boring exactly, but like I was used to me. The same way I never knew my autistic brother stood out that much even though he did (although more in the stiff/nerdy way than the sensory/strange way, we are very different people).

But once I put the dots together? Passing doesn’t make sense. What happened was people saw every single thing I did and then since they didn’t know about autism they formed other explanations. So I was crazy, or on drugs, or wanted attention (why do so many people accuse others of wanting attention when the actions prompting it are entirely not focused on other people at all, while they don’t tell people that starting conversations is attention seeking even though it is???) or any explanation at all they could come up with. Sometimes several at once.

As I’ve discussed before, the drug assumption meant I have been both asked for (???) and offered pot, acid, shrooms, DMT, ketamine, speed, mescaline, harmaline, and assorted really obscure “natural” hallucinogens (I did not take more than three on that list, and only after being accused of it got me curious). This took no effort on my part, especially when attending a school so well known for drug use that it made a top five list of drug schools. All people saw was a strange girl dressed like a hippie who did lots of odd things, looked spaced out, and reacted to all kinds of sensory input in a very raw sort of way that often made me respond more to texture and pattern and color than to the socially agreed upon nature of the object. Plus I was fun to get stoned because it made me have even more sensory processing trouble and ratcheted up my anxiety so much that it was easy to manipulate me into doing amusing things like jumping out windows so people could laugh. (One of my support staff has another client who has a very severe cognitive
impairment. I was telling him about this and he told me she gets the exact same crap from her neighbors.)

Another thing that happens when people form these explanations is they begin picking up on irrelevant details that confirm their explanations while blocking out information that conflicts with their explanations. Because of my reputation for drug use, people would claim to smell marijuana coming out of my room whenever I burned incense (I never did that in my room). Have allergies that make your eyes red? Must be stoned. Have naturally large pupils? Must be on acid. Have trouble bathing or washing clothes? Drugs make people not care about that. Have fluctuations in your abilities? Must be based on when you’re high and when you’re not. You can’t win around this kind of fallacious thinking.

Kids who pass don’t get accused of being on drugs by everyone from children to teachers from the age of twelve or thirteen onward. Kids who pass as nerdy or “just gifted” don’t get ostracized and accused of being both on drugs and crazy, or sent to the counselor, when they go to a summer camp filled with nerds who are mostly classified as gifted. Most “just gifted and nerdy” kids thrive in those environments and tease the kids like me who are clearly odd for other reasons. My best friend met me in such a place when we were twelve after seeing me spinning by myself, asking someone who I was, and getting “That’s Amanda. She’s crazy.”

Nor do kids who are passing really well have it assured that they will be only given single rooms from a certain point on so as not to alarm their roommates with their strangeness (yes my roommates complained about rooming with a “crazy person” or “weirdo”). Even in mental institutions. (And kids who pass really well certainly don’t get singled out as strange in those places.) This is not passing. This is being flagrantly strange and having it bother people enough that they try to think up all kinds of reasons to explain it to themselves.

When most people explain things to themselves, odd things happen. They don’t see what you’re doing. They see their explanation. They see “crazy”, “high”, “stupid stunt”, or whatever they have explained things as in their minds. And if they have to have their expectations disturbed enough to explain things to themselves, then you are not passing.

I know a lot of people that things like this have happened to. Even people with purely physical impairments. A woman I know has muscular dystrophy and when she began hanging onto the walls for balance, people explained it away as attention seeking or anxiety induced. That’s the exact same sorts of explanations (with the addition of the ever present drug thing) that I got with a much lesser known autism-connected progressive motor impairment that caused me to freeze in place, be unable to cross certain barriers easily, or lose the ability to speak.

I once froze for a solid ten minutes, with (as I heard those around me noting) fixed dilated pupils pointed straight at a bright light, on a high school field trip. Nobody told my parents. People figured it was drugs or anxiety, and everyone was sort of pointedly avoiding the subject (and avoiding me) the rest of the trip, treating me like I had done something unspeakable. I frequently had the same thing happen in college and was said to be on drugs (never happened when I was actually on them). Happened in the psych system and was called psychotic or dissociative or just left unexplained. Happened around new agers and they insisted I was either astral projecting or somehow being very spiritual. The same thing happened to me at an autism conference, and someone with the same movement disorder told me the journal articles to send to my doctor. I did and he recognized it immediately and diagnosed me with that condition.

Is that “passing”? No. It’s “being passed off as”. It’s people seeing a thing, being uncomfortable, deciding on an explanation, and coming to remember the explanation more than the thing itself.

Similarly, now that that and other conditions have me using a powerchair full time, all the traits that had people who just saw me walking around thinking I was either autistic (if they knew anything about it) or intellectually disabled, the powerchair has become their explanation for all those traits. So now I’m back to being considered purely physically disabled by some people, which has led to overestimation rather than underestimation of my cognitive abilities.

I can do one particular thing throughout most of my life and have it explained in different ways depending on age, clothing (hippie clothes, school uniform, “regular” clothes, sloppy clothes), location (regular school, college, special ed, institution, apartment, at home with my parents), haircut (messy, combed, long, short, parted in different ways, nonexistent), range of deliberate facial expression (less or more limited due to the motor impairments), and a zillion other factors. But I’m the same person and my reasons for doing whatever it is have remained constant my whole life. I have seen kids doing things like eating paper or lying on the floor, and if they’re considered “gifted” then it’s eccentric or attention seeking, if they are considered druggies people figure it’s the drugs, and in institutions or special ed it’s because they don’t know better. But I bet the reasons for doing it are the same regardless.

But as someone who was a strange kid, and paid the price for being a strange kid, I am really uncomfortable with the concept of passing. Passing would be if I never did the things I listed in the first part of this except in private. Something I only ever managed in part. Having people constantly bugging you and making things up about you because you do these strange things is not passing. It’s having people pass things off as something else. It’s having teachers accuse you of drug abuse until everyone believes it and you become curious. It’s freezing up and having other kids laughing and jumping up and down on top of you and going “see she doesn’t feel it”. It’s being singled out for bullying even among other “gifted” kids and “crazy” kids. It’s having “crazy” or “druggie” or “does weird things for attention” be the first words people use about you when strangers ask who you are. It’s having even people you thought were your friends comment gleefully and frequently on these topics as if you are more a source of entertainment than a friend. It’s having people shake you, kick you, wave their hands in your face, and make loud guesses about what’s going on, every time you lose speech. It’s that one guy who likes to come up to you and tell you what “everyone’s saying” about you. But it’s definitely not, ever, even when doing your best acting, being treated like everyone else. Which is what passing would be. Passing has its own set of problems. But “passed off as” is not passing.

The other point of this post is that I’ve talked to even a lot of autistic people who assume that there’s only two general appearances that autistic kids can take: Sort of awkward and stiff and nerdy or dweeby, or else completely cut off from people and constantly rocking and doing other stuff like that. And while I sometimes did both of those sorts of things, I think I was usually something different from either stereotype. Much of what made me stand out and get both teased and “passed off as” various things, especially both before and after the few years I reined it in a bit, was the way I related to objects around me, and sometimes appeared zoned out. Most of which has to do with how I process information in the first place. And while I know many others who were and are like this, it seems like even many autistic people can’t resist having their imaginations constrained by the main couple stereotypes. And I almost never hear this particular appearance discussed. Lest this become a third stereotype, I should point out that there are lots and lots of different ways we can appear, and that a single person can appear different ways at different times. It’s just important to avoid stereotypes. They don’t help.

So… okay. I was absolutely sure as a kid that I sucked at art. Painting in particular but also art in general. I was usually one of the slowest kids in art class (where we had to exactly reproduce someone else’s technique and subject matter) and in one of my art classes it was worse than that.

The art teacher made us paint things she had already painted in exactly the same way she had done it. And aside from being crappy at that kind of art in general, I was incredibly crappy with paintbrushes. The art teacher got so frustrated with me that she would paint my paintings for me and pass them off as my own. My parents would ooh and aah and I would be mortified. It took me a long time to figure out words for what was happening to me and even longer to overcome my terror of that teacher. She was always treating me like I was completely stupid and if she was yelling at anyone it was me for screwing up another painting or sitting around stimming on the paintbrushes (”AMANDA BAGGS WEREN’T YOU LISTENING I JUST TOLD THE CLASS YOU CAN GET LEAD POISONING THAT WAY PUT THAT DOWN THIS INSTANT!”).

The rule was you started with landscapes. If you were good at those you could do flowers. If you were good at those you could do animals (we were told we had to paint every single hair). If you were good at animals you could do humans (every single hair too). And original paintings were not okay. I wanted to paint cats and I was terrible with a paintbrush. I very much did not fit into this arrangement.

So I took to hiding in the bathroom, a strategy I had already perfected out of overload. I would pull every paper towel out of the paper towel dispenser, pull all the soap out of the soap dispenser, then play with the soap for awhile. When I was done with that I would lock the door behind me on my way out, which for some reason I found very interesting as a concept.

One day the art teacher told us that it was criminal to lock doors in this manner and that she could call the police. She said that she knew exactly who was doing this and would talk to them after class. But she never talked to me and she never called the cops. I kept locking the doors.

Anyway with that and copious other similar experiences in art class, I was absolutely convinced I could not paint. I did one crappy painting (using brushes) after that and it only confirmed to me that I was a terrible artist and an even worse painter.

For the three months when I was in high school, I had lost even my previous thin pretence of not stimming on stuff. (I was not a stiff formal autie, I was a chase after dust particles and stare at moving colored objects autie. More on that in another post, but suffice to say I was more like Luna Lovegood than Ernie Macmillan.) After I backed into a corner screaming when a math teacher changed a routine on me, he threw me out of class and publicly accused me of drug abuse. An art teacher brought me into her class instead and told me, “I don’t care if you move around or behave strangely. I don’t care if you sit under the tables. All I care about is that you produce art.” So I would go into her nearly empty classroom, sit under the table, and draw. I was more comfortable than any previous art class but I still knew I wasn’t like the other art students. I received no instruction at all.

Next year I was in college way too early considering my level of overload. Because of that (good) teacher I chose mostly art classes and did okay in them. (The most painting they required was filling in the lines of something, and I could mostly do that.) After that I did a few attempts at crappy paintings with brushes in some of the art programs I was in within the psych system over the next several years after my spectacular burnout. But again it was too much somebody else guiding me.

After I got out of all that and ended up on my own in adulthood, I basically considered myself terrible at art and even worse at painting. All of the encouragement I got was too little too late to get that one terrrible teacher’s voice out of my head. Plus, whenever I dared think of myself as an artist, there was always someone else who took that role, and for some reason in people’s heads there could only be one person who was The Creative One in any group. For instance in special ed (after my attempt at college — I’m the only person I know who this happened to in that order), there was a boy who was The One Artist in our class. He got to participate in a program for disabled artists. I got nothing. Repeated situations like that convinced me even more that I didn’t have what it took to paint.

By the time I started getting these ideas in my head that maybe, just maybe, if I decided to paint on my own terms rather than the terms of others, then things would work better… it was three or four years ago and I was already getting more attention than I wanted for my writing and videos online. I felt like the world was a big eyeball and it was pointed straight at me — exaggerated, but I hate that feeling. The absolute last thing I wanted to be was “an autistic artist” instead of an artist (something similar happened in my teens with a local newspaper and some of my crappiest art), or to have the world confirm to me that I was terrible and stupid for even trying.

So quietly in private, telling only one person, I began to paint. I used acrylics. I painted with my fingers. I painted lots of things but mostly I painted cats and very abstract scenes. And when I dared to show a few more people, they liked it. Not because an autistic person did it but because they liked it.

Still I was terrified to let anyone find out I did anything, you know, (horrors) creative. Because I’m not creative, that’s what other people are.

But the other night, I told someone about the music teacher who chastised me for playing the wrong chords and convinced me I couldn’t be musically creative until I learned chord theory. (I am very easily intimidated when the charge is that everyone else is better than me at something because they can do something I can’t. And I can’t do chord theory.)

And the other person, who knows more about that teacher than I mentioned here, told me he sounded like the kind of teacher who believes music is more about technique than about passion and creativity, and who themselves hasn’t succeeded because they lack passion and creativity, and who therefore has a chip on their shoulder and tries to stomp into the ground anyone who shows more passion and creativity than orthodox technique. She told me if John Cage had tried as a child some of the piano stuff he did as an adult, he’d have been grounded for weeks and never allowed near a piano.

So I got a little bit braver and told her about the art teacher from hell. She told me it was the exact same type of person and that such people single out someone who wants to do something out of bounds, and proceed to treat them like crap. And that my troubles getting paintbrushes to do what I wanted would have only made it easier to do that.

She also told me that my fear of scrutiny was understandable, but that if I let it control me I would be as bad as the people who do whatever they think will get them the most scrutiny and attention. Because either way you’re letting other people control you. And that makes sense, this is a particular area I have a lot more cowardice in than shows openly — I hate being singled out for attention and once you’ve had CNN and Wired and the CBC in your home, that’s enough attention to leave me shaking in a corner when they leave. I only ever agreed because someone pointed out it would also bring attention to the self-advocacy movements and that I shouldn’t let my fears control me. And I’m good at pushing myself to do something terrifying and only freaking out afterward. (After CNN left I barely ate for weeks.)

So I guess this is my declaration that I’m an artist, not just an autist, and have been doing my own thing in this regard for years once I got the idea in my head that it might be permissible for me to produce art of my own kind, in my own technique, and in my own way.

I don’t know why I’m so easily cowed by people telling me that I’m no good at something, that I’m downright stupid, and that my lack of ability in one particular area means that not only shouldn’t I (paint/write music/etc) but that I shouldn’t even try. (See Why I never expect to be right.) But I am. I’m also intimidated in situations where I’m in a group of people and only one person there is called The Artistic One, The Musical One, The Creative One. I once even saw that happen where one girl was called The Musical One even though there were five other musicians in the room, one of whom had been paid for it. But even knowing it was illogical, it still made me feel like I had no right to call myself a musician, or an artist, or whatever. Combine the two plus fear of being singled out and I do it all hiding in a corner somewhere and then wig out every time I have to tell someone.

So I’m not only happy that those teachers were full of crap, but also somewhat mourning the fact that I spent over a decade too scared to defy these people that I thought immeasurably above me. Only to find out they were just people acting out their own insecurities on me. I’ve been told art and music teachers do this to people all the time, and here I thought it was just me.

The thing is, though, that creativity feels like this force inside of me that needs to have some kind of outlet or it will burn me to a crisp. But I’d been making do with writing. And even though I was writing, I’d still feel like there was this white-hot thing inside of me trying to force my body to let it do something, anything other than just sit there. And writing and painting and music all still feel like something doing me instead of me doing something, and like my consent is only a formality on the way to these things happening.

Oh, and last year someone said they’d like me to do a painting for them and that they’d pay for the materials. I wanted both to paint something and to create something that would be interesting to sit around looking closely at. So here it is. The photograph is really bad because of the flash.

Could anyone summarize this? I’m really bad at summarizing things, all I can say is it’s three cats on a glittery and somewhat busy background with objects stuck to it.

Edited to add. Littlewolf has written a really good summary in comments, read that and my comment after hers if you can’t see the picture.

Happiness part 1: What are we talking about anyway?
Happiness part 2:  In which reality is twisted
Happiness part 3:  The personal is indeed political
Happiness part 4:  Seeing beauty

I am not going to go into the amount of detail she went into, but I had a few thoughts. 

I am reminded of two poems I posted on this blog in the past because I have always found the standard metaphor of depression or sadness as “down” to be terribly misleading:

Rising Into Sadness

When the world is a graveyard
Of dusty skeletons falling apart
And the sky cannot be seen
And even the pines are no longer green
I know that there have been
Too many words

I was thinking about this today, because of my current experience of joy. The thing that has really surprised me going from depression and terror to happiness, has been that joy — combined with love, beauty, and other such things — is built into the world on a very fundamental level.

This means that instead of learning to feel an emotion, my journey towards that joy has involved removing both internally and externally imposed obstacles that were pulling me away from the joy that exists everywhere. 

There is nothing easy about it. I’m not telling people with depression to snap out of it. My experience of depression was that it is incredibly effective at finding many ways to sort of infiltrate my mind and make me totally exhaust myself by getting stuck in thought loops that have the effect of making me always run the exact wrong direction.  It’s nasty and totally effective at confusing a person until they have no idea which way to go. 

But as I untangled the knots in my head, I found gravity pulling me downward towards joy. Sometimes it has been terrifying. This kind of joy can be almost unbearably intense, and allowing gravity to work instead of running away from it can require giving up aspects of yourself that are really painful to let go of. (The mind is a very strange thing.) But because of various circumstances in my life the alternative to giving these things up has been deadly. So every now and then I’m dragged (sometimes kicking and screaming) through the process of allowing that joy to dissolve one more problematic part of how I think. 

And I suspect I am no different than other people in this regard. It’s an aspect of the human condition I’m dealing with and we all have to face such things regardless of neurology or any other personal trait. And I’m not sure it’s ever over, because growth is never over until we die. Or should never be over anyway.  So the road to this joy seems mostly to involve removing barriers to it rather than having to generate it like an emotion.  

But it’s very reassuring in a way to realize that gravity doesn’t pull us down into sadness, despair, or depression. Gravity pulls us to a place where we realize that every single part of the world no matter how small is absolutely saturated with an almost intolerably intense level of clarity, joy, love, and beauty that can’t be destroyed, only hidden.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

One, overload and shutdown are not ideas psychiatric professionals are generally taught about. They generally are taught more about emotional experiences than perceptual ones.

Two, the only time many nonautistic people can be driven to something that looks like overload or shutdown is in the middle of incredibly intense emotional experiences.

I had a “friend” for awhile (in quotes because I knew her during a period where I thought friends were anyone who would tolerate my presence, even though this particular friend did a lot of things that most people wouldn’t put up with from their friends) who had been traumatized to the point where sometimes her emotions got so huge that she just froze up and couldn’t function. I frequently overloaded and shut down in front of her in a way that looked superficially similar.

Thing is, my experience of overload was this: I was simply being asked to process more information at once than was possible for me. I would hit a cognitive bottleneck and my brain would start shutting down all functions it deemed unnecessary to concentrate on processing the information so it would get working again. This could be a scary experience when I didn’t understand why it happened and fear didn’t help but it happened often enough with no help from fear or anxiety.

So even though this friend knew me at periods in my life when I frequently had speech and motor shutdowns, the last time I talked to her, she insisted on reinterpreting all of my experiences of sensory overload in terms of trauma that she imagined I experienced. Even in the face of me explaining that wasn’t the case.

(Which incidentally made me remember how often she used to take advantage of my social passivity to explain my experiences and actions to me. Even if I was able to object, she refused to listen to my objections. She just went merrily on coming up with explanations for damn near anything I did, down to the way I parted my hair. And that realization is why I now want nothing to do with her. I don’t need someone prattling on about how I part my hair for any other reason than convenience or symmetry, or creating a totally false narrative about the reasons for everything else I do. And unlike childhood, I now know I am allowed to choose my own friends.)

So according to this person, all overload is trauma-induced anxiety and all shutdown is trauma-induced dissociation. So all the times I couldn’t speak or move in her presence were automatically caused by trauma. And unlike a real friend, she’s unwilling to hear the genuine explanations. (I am glad she’s not going into psychiatry.)

And I think for her the reason she believes that is that the only thing that can cause such severe speech or motor problems in herself is severe trauma. And that is probably a reason many laypeople would leap to that conclusion.

But for psychiatrists and psychologists I think it’s related to being taught more about emotions than about certain perceptual experiences.

I once had a case manager who insisted that if I walked into a closet to get away from the language and visual overload of a meeting, then I was dissociating. She also refused to take my word for it, but in her case it was because I was just a layperson so what did I know. The fact that I have had experience with severe dissociation much of my life (mostly because of pain) and can tell a definite difference, doesn’t seem to cross such people’s minds.

I also have experiences where I find it difficult to find my body. I experience all sensory input, including that from inside my body, as external. So frequently the body awareness signals get lost in the midst of awareness of lots of other things in my environment. This isn’t dissociation. It isn’t depersonalization. I’ve had depersonalization. It’s different. This is simply an outgrowth of the way I perceive my surroundings and the way my brain orders those perceptions.

I have seen problems like this throughout literature on autism. Tony Atwood has suggested that those of us who have periodic speech problems must be experiencing anxiety. Because in nonautistic people, such problems usually come from anxiety and psychiatry calls that selective mutism. Certainly anxiety doesn’t help, and some autistic people do experience speech trouble because of anxiety. But the reason speech drops out for many of us before other things is it uses a ton of resources for most autistic people. It is cognitively difficult and it requires thinking, moving in complex ways, and listening to this horribly loud sound in your ears that makes your head feel weird inside. It’s like that program on your computer that’s a resource hog and you have to kill it to keep the rest of the computer from grinding to a halt. So get anything else resource intensive going and speech can just vanish. It’s hanging by a thread. In one of my climbing analogies it’s like hanging on a cliff by your fingertips instead of standing on solid ground and when you fall, it goes away. (And for some of us we are too badly injured in the fall to ever climb so high again.)

But that is one reason a well known autism “expert” once told me that if she could reduce my anxiety, I wouldn’t need to use a keyboard. Hello? It’s been over ten years, my anxiety has steadily reduced, and my speech has steadily reduced as well. When I met her the periods without usable speech had stretched to include most of the day. Now they’re all of the day. Reducing anxiety didn’t help.

And that’s where these interpretations are a problem. If anxiety is a component of overload by all means try to do something about it. Same if pain is part of overload. But as I discovered once my anxiety and pain had been reduced drastically (and all the pain related warnings I got about overload were gone, so I had no way to predict it)… I went to a grocery store. And… everything around me speeded up. My brain felt like it was slogging through molasses. And I got slower and slower until I just, very calmly and painlessly (but still with a sort of cognitive discomfort)… stopped. Because anxiety and pain are not at the core of overload and shutdown, they are just elements that can make it worse if they happen to exist.

And the misinterpretation is a problem because if you assume that these are at heart emotional experiences, then you will spend a whole lot of time trying to move emotions around believing it will solve overload. When the real solution to overload is learning to detect and manage it by identifying what causes it and what should be done with it. If anxiety is a factor then you should certainly do whatever you can to get it under control. But at most it’s a factor.

Overload is about a brain not having enough resources to process all the information it’s dealing with. Shutdown is about a brain doing the equivalent of a computer killing off processes that make the computer run too slow. They are not the same as anxiety and dissociation. Treating them (and other cognitive, sensory, or perceptual experiences) as if they are, doesn’t help.

If I could eliminate any single disability stereotype, I would sit there and try to figure out which one underlies the most others, and pick that one. If you are going to be given a tool that selective and narrow, it’s good to choose carefully by picking the one whose destruction would destroy the most others. And after observing for a time, I have concluded that the stereotype that I would most want to eliminate is the one that says disabled people are not real or whole people.

If we were real people, killing us would be bad, and killing ourselves would be unfortunate rather than something people build special laws to enable.

If we were real people, the world would be designed in a way that allowed us to move through it without extra obstacles thrown in our way.

If we were real people, people would see us as individuals, rather than heroes, tragedies, inspirations, or representatives of our entire impairment group.

If we were real people, then giving us proper medical care would never be seen as pointless.

If we were real people, the whole myriad range of disability stereotypes would look flimsy and silly because people would see us as we are.

Of course we’re already real people. But the problem is that so few people have noticed.

I have terrible body awareness. I often can’t locate pain at all, and if I do it’s often because someone has sat down and played twenty questions with me for an hour or longer. Sometimes I don’t even know I’m in pain, I just notice the responses to it and fail to connect the dots.

Which makes it astounding to me when instincts related to health or body awareness give me information out of the blue that I can’t tie to any conscious sensation.

Twice in my life I have been aware of an organ malfunction that could be life threatening if not caught and treated. The information appeared quietly and with great clarity. It was not accompanied by fear or any other emotion. The information consisted of the ideas, “Something is wrong with one of my organs. If nothing is done, I will eventually die.” This was accompanied by frequent thoughts of death — not anxious or depressed thoughts, but “hello you need to be aware of this” thoughts. In fact the lack of emotion and the quiet clarity of the information was astounding.

The problem was that neither situation showed me which organ was having problems. Luckily, in both instances someone figured out what was wrong. In one case my gallbladder had completely failed after producing two large stones (nobody had told me that early onset gallbladder disease ran in my family for generations among the women). In the other case, a pulmonologist who eventually suspected my main problem wasn’t asthma anymore, did an exhaustive set of tests until a CT scan showed a form of lung damage that is progressive and fatal if not treated (and is still more dangerous than asthma if treated, but can be managed well with regular breathing treatments).

In both cases the instinctual warning bleep stopped bleeping at me after treatment (surgery in the first case and twice-daily breathing treatments in the second).

In other cases (one in particular stands out in my memory) I have gotten a slightly different warning bleep. Again, there was no emotion attached, just quiet certainty. Despite the fact that the warning was more urgent: “You are in immediate danger of death if you don’t do something right away.” I know it’s happened more than once but the only time I can remember right now happened a couple years ago. I had just gotten back from the emergency room where I’d been treated for an impacted bowel movement and released. This was not the first or the last time this had happened. I had managed to pass an enormous stool that had blocked both my bowels and my bladder. I had been catheterized. And these sorts of things, when they had happened before, had been the beginning of the end of the problem.

But this time was different. The warning bleeps started off by telling me that under no circumstances should I be left alone. So I told someone that I didn’t know why but I needed someone to be there constantly after I got home. An hour later, the warning bleep told me I would die without assistance. I was about to tell this to the person with me when I collapsed (I could still walk part time back then) and started vomiting. The person with me called 911 and by the time I got to the hospital I was delirious and hallucinating while seeming to only half of the time be conscious. The blockage had started poisoning me and I ended up admitted to the hospital until the danger was over.

Those sorts of instincts make sense to me. It makes sense for a body to have a built in warning system. I have spoken to others with chronic health conditions or who had been in life threatening situations who know all about these warning bleeps. People who were at risk of hypothermia whose hallucinations told them not to go to sleep no matter what. People who had been hit by cars and despite confusion from concussions or blood loss, had instincts that told them not to move for any reason. This stuff makes sense even though it is still in the realm of cool and amazing, especially amazing in those who otherwise lack body awareness.

But the one that is happening to me right now seems outright strange. I can’t figure out why it would be an important instinct. My menstrual periods stopped over a year ago. The only way for me to have a period is to induce it with hormones, and even then it’s not the super-heavy kind normally expected after a seven-month break.

The weird part? I’ve skipped a period or two before. That’s not weird. What’s weird is that even after I’d only skipped a month, I knew for certain that it wasn’t coming back without intervention. My crotch area doesn’t feel any different from normal, I have no idea how I know this. But I still know that. It’s an absolute certainty in my head that I will not be having any non-induced periods anytime soon.

To be honest, I’m really happy about this. I almost never get migraines anymore, when before they happened all the time. My moods are totally stable. I don’t have to deal with the hygiene stuff. I wasn’t planning on having kids. There are risks to not having a period but if I have one induced only every six months I’m safe.

I just don’t understand the purpose of this instinct. Knowing my periods have stopped coming naturally, doesn’t seem to save my life. It does make me happy, but that doesn’t seem like a reason for this kind of detail in an instinct. So to me this is the strangest of all the body-related instincts I’ve ever had.

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.

***

Hello. I am a community partner representing the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). I am contacting you today to ask for your help in recruiting participants for a new Gateway study. The Gateway Project serves as a gateway to research committed to inclusion, respect, accessibility and relevance to the autistic community.

We have just launched a new Gateway study that I am really excited about. The study aims to better understand health care inequities, including barriers to receiving quality health care. We are comparing the healthcare experiences of autistic adults to those of non-autistic adults with and without disabilities. AASPIRE’s long-term goal is to improve healthcare access and quality for adults on the autistic spectrum.

How Can You Help? We hope that you will help us by getting the word out about our study. You can let people know about the new healthcare study by directing them to www.aaspire.org/projects.html. I have also attached flyers which you can download or post. If you prefer to receive hardcopies, contact Roberta Delaney at delaney.roberta@gmail.com.

Some Background about AASPIRE: AASPIRE is an academic-community partnership that brings together autistic self-advocates, researchers, and people who support autistic adults to develop and perform research projects relevant to the needs of autistic adults. You can learn more about AASPIRE at www.aaspire.org.

I have pasted copies of the text of our recruitment flyers below. Please let me know if you have any questions. Thanks so much for your help!

Please note that if you use the fliers you should not alter their text at all.

Links to PDF flyers for printing:

PDF Flyer (autistic)
PDF Flyer (other disability)
PDF Flyer (general)

The first flyer is our flier targeted at autistic people:

APPROVED: Dec. 18, 2009
Be Included in Autism Research
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab believe in research WITH autistic adults, not just ABOUT autistic adults.

Together, we have created the Gateway Project, an online gateway to research that
* encourages the inclusion of autistic adults in matters that affect them;
* includes autistic adults as equal partners in research about autistic persons;
* answers research questions that are considered relevant by the autistic community;
* uses research findings to effect positive change for people on the autistic spectrum.

Gateway studies address topics such as well-being and problem-solving. A new AASPIRE Gateway study focuses on the healthcare experiences of autistic adults and adults with and without disabilities. AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:
1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org .
2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.
3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can
Go to the Gateway home page at http://thegatewayproject.org .
Send an email to Dora Raymaker at dora@aaspireproject.org.
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University; Dora Raymaker, MS, Autistic Self Advocacy Network

Please pass this information along to your friends!

The second flier is our flier targeted at disabled people in general:

Participate in Disability Research
APPROVED: Dec. 18, 2009

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab have created the Gateway Project. The project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance.

Several Gateway studies may interest people with disabilities. A new AASPIRE Gateway study focuses on the healthcare experiences of
* adults on the autistic spectrum,
* non-autistic adults with disabilities, and
* non-autistic adults without disabilities.

AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:
1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org .
2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.
3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can
Go to the Gateway home page at http://thegatewayproject.org .
Send an email to Dora Raymaker at dora@aaspireproject.org.
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University;
Dora Raymaker, MS, Autistic Self Advocacy Network

Please pass this information along to your friends!

Also, here are some sample tweets or Facebook entries that you can use (although on a personal level I confess near-total confusion as to how either of those things work):

* New Gateway Study about Healthcare. See www.aaspire.org/projects.html. Participate in research with autistics, not just about autistics!

* I am so excited about our new Gateway Study about Healthcare. Please participate! More info at www.aaspire.org/projects.html.

* AASPIRE has launched a new Gateway Study about healthcare inequities. Please participate. See www.aaspire.org/projects.html

I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.

Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.

Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.

A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.

Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.

When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.

Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.

Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.

But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.

I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.¹ I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”

Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.

I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.

¹ Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.

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.

The systems of privilege among autistic people are complicated. You can’t really just say one person has more on some absolute scale of privilege. But there is a form of privilege accorded to those autistic people whose lives follow any of a number of patterns. Those include people who most seem to resemble the most dominant stereotypes of autism, and also those whose experiences are the most commonly discussed when autistic people get together and discuss such things (even though which experiences get discussed is also related to which fit the stereotypes… and on and on in more levels of complexity).

I became aware of all this when I first encountered the autistic community online. I was just barely an adult, just barely learning to connect thought to words in any lasting way, and feeling as if I was just falling and falling when it came to the skills most valued by society. Speech was there, but for huge parts of the day (more and more of the day) it wasn’t. I fell out of a tree for the first time in my life that year, and my motor skills were becoming interesting in all the wrong ways.

And as I entered chatrooms and mailing lists, there were things I had clearly in common with people but what stood out to me were the differences. Why did everyone else seem to describe puberty as a period of sudden advancement when for me it was when everything I thought I had painstakingly gained fell apart? Why did people describe some things in a way that didn’t make much sense to me? There was more belonging here than anywhere, but at the same time I kept wondering if there had been some massive mistake when I was diagnosed. I only really knew a handful of people, and virtually nothing about autism, or about systems of privilege, or the way our experiences were measured against professional standards. I was only 18 years old, and very… I don’t know the word. Meek, passive, terrified of going against the rules while aware I was made in such a way that meant I would never in my life be able to follow them. Mixed up. And so on.

But as I met more and more autistic people, something began to happen when I least expected it. People began to pop up. Here and there. And we made instant and total and amazing levels of sense to each other. In everything from described experience to body language to… all kinds of things I never in my wildest fantasies of “finding my people” had ever expected. People who, as I sometimes put it, didn’t need to come in my front door because they were already inside. I don’t mean we were identical, far from it. But we were made of the same stuff, and enjoyed an ease of communication I had never believed possible.

These people helped me figure out more about my own abilities, difficulties, and general place in the universe than I had been able to figure out on my own. Like I described in a recent post, we were separate, no untoward boundaries were crossed, but we resonated. Powerfully.

It was also clear from the way things were playing out that whatever we had in common was not just wishful thinking. We varied as to which of us first described some particular aspect of our lives. Often many people individually and separately came up with similar descriptions. You can never be 100% sure two experiences are the same, but we were as close to sure as we could get of what we had in common.

And these people were all also, like me, put into the category of autistic. We were far from the largest or most dominant grouping of people, but someone had seen fit to put us all in that category despite all that. (Doubtless one day other groupings of human beings will happen. They always do. But in today’s groupings, this is where we all ended up in the end.)

But as for which of the professional categories we were put into? All of them. Sometimes one single person had been put into several. LFA. HFA. Asperger. Autism. PDD-NOS. No rhyme or reason to it. But we’d all been called autistic.

I also don’t want to make it sound as if this was some kind of absolute thing. It wasn’t. It also wasn’t planned or expected. And it wasn’t that we all had identical characteristics, just that within the forest of autism we were all different varieties of oak trees, or else trees closely related to oaks.

The thing we had the most in common is the hardest thing to describe. A perceptual state, a way of relating to the world around us, which there were no words for but which was recognizable to each other. In an inadequate shorthand, these are some things we recognized in each other. Please note that while some things are more stereotypical than others, we have no choice how close or far from the stereotypes we are. These things just exist, and these descriptions are the product of lots of conversations among ourselves about these matters, not the product of any single one of us:

1. Mutually comprehensible body language. To an almost frightening degree, to people who were used to being shielded in a way by the fact that most people couldn’t read us.

2. Trouble understanding language. By which I don’t mean mishearing words, but rather existing most of the time in a state where language did not make sense. And this totally irrespective of how fluent we appeared in speech or writing — many of us had learned to fit words together as patterns of sound before understanding a single word of it. Meaning did seep in over time but in an unusual way and very prone to vanishing again. Never at home in language regardless of whether we are excellent writers/speakers, or people who can’t write or speak a single word. Always requiring effort. And always starting from a “level” much “below” that of language even being something we have thought of.

3. A way of learning certain common skills where we might be able to perform a skill, even at a seemingly high level, then having it disappear as if it had never been there and having to relearn it from scratch. Sometimes this would happen once, sometimes many times. We could try to learn these things, manage to perform like building a house of cards, and then a gust of wind would blow it down. And starting again from scratch. The best description I have ever heard of such things came from Jim Sinclair’s article called “Bridging the Gaps”:

I taught myself to read at three, and I had to learn it again at ten, and yet again at seventeen, and at twenty-one, and at twenty-six.  The words that it took me twelve years to find have been lost again, and regained, and lost, and still have not come all the way back to where I can be reasonably confident they’ll be there when I need them.  It wasn’t enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time; I’ve lost track of them and had to find them over and over again.

4. Having a different way of learning where things fit themselves together slowly over time, and are more likely to stay put. The main problem being that this isn’t something we can do on demand. It just happens. It is slower, more unpredictable, “behind one’s own back” and cannot be relied upon to produce any given wanted result. And the skills learned may not even be skills that have a name or a concept for them in most people’s eyes, so may be considered nonexistent or worthless.

5. Having a highly unconventional way of perceiving the world. Usually of a specific kind that is still hard to describe except for describing what it is not. Perceiving color, shape, texture, tone, etc. without easily or automatically perceiving something like “table”. This being another variation on the same thing that makes receptive language so difficult. Anne Corwin describes this:

I would probably walk into the room and see “check patterns” before even being able to identify the door as a door and the tablecloth as a tablecloth! I tend to be incredibly clumsy and easily overwhelmed in new/unfamiliar settings because it takes me a long time to figure out where (and what) all the “macro-objects” are. When I go to a new place for the first time I sort of need to scout and scan all around it like a cat before I can really navigate effectively. The process of “resolving patterns and shapes and forms into familiar objects” is actually a semi-conscious one for me.

I was talking to some other people about this phenomenon once, and one thing that came up was that some of us in that conversation (including me) often tend to sit on floors and other surfaces even if furniture is available, because it’s a lot easier to identify “flat surface a person can sit on” than it is to sort the environment into chunks like “couch”, “chair”, “floor”, and “coffee table”.

6. Having stayed in that mode of perception long enough to have developed ways of understanding and navigating the world that can be done without having to leave that mode of perception. This is sort of where all those patterns slowly coming together and growing more complex with time comes in, in the mode of learning I described earlier. So perceiving the world sort of as if we are moving through this sea of colors and textures and sounds and smells, but having learned to understand and navigate that sea without having to pop into “gee is that what they call a table?” mode. And having “table mode” be one of those exhausting things we may be able to do or even do well but that just plain doesn’t fit with us and easily drops away again.

(Sometimes I describe the last two things and people go “Oh it was like that when I was three.”. But for us it is still like that. Except having grown up and learned the whole way, it’s not as confusing as it was when any of us were three.)

7. Instead of having abilities that are locked into one mostly unchanging pattern, having abilities that are engaged in a constant shifting set of tradeoffs, whether you want them to or not. So always being in flux, never being certain what abilities will (and won’t) be there next, and thus seeming really inconsistent on a lot of levels.
Here is how I once described this:

Storks do not fly long distances under their own wingpower. What they do, is catch hot air currents called thermals, and use them to assist their flight. This does not mean that they don’t do any work, but that they have to keep track of exactly where to concentrate their work, among a shifting mass of air currents.

Well… that seems to be how my mind works. There are all sorts of things equivalent to thermals: Perception, movement, communication, language, contemplation, etc. They’re always shifting around, and I can’t always be certain that something’s going to be there at any given time, or what form it will take when it’s there. I have to plan my life around this kind of unpredictability.

This does not mean that I am simply carried around without having to do any work, but it does mean that there are some areas where, for that moment, all the work in the world won’t do much of anything but wear me out, and other areas where the work I put in goes further. It also means that what I set out to do isn’t always what’s going to happen, and when it does happen it can be through a roundabout sort of route.

There is more. There is much more. There is always more. But the English language was not developed by or for people like us, leaving me always feeling impotent and repetitive as a writer when I try to talk about this stuff. I tried harder than I have ever tried in my life when I wrote my article in the current Disability Studies Quarterly, but still, there’s that language barrier. So if I didn’t get something quite right, chalk it up to that, I can’t sit around trying to perfect my descriptions all day and have already described many of these things in depth individually.

Call that a subtype of autism, call it a bunch of people who happen to find that we have things in common and who are also considered autistic, whatever, that’s just words. But these are things that are important to the people experiencing them, not just to the professionals observing us. We are not better or worse than more stereotypical autistic people, just different.

Anyway, I have found that… there are people who read descriptions like this and go “WTF how’d you get into my head?”

To such people, at least a big part of those descriptions is going to be really familiar. They might or might not suddenly be able to add onto such descriptions themselves. But they generally find this incredibly familiar and intuitive, the same way I find similar descriptions from others. And they will easily see how the pieces fit together.

Others go “Bits of that sound familiar.” it may or may not make sense as a whole but they have at least some things in common.

Others go “WTF that’s totally alien or even opposite to my experience.”

That third group? That’s where the privilege comes in. Most people from that group are people who say their experience of autism is similar to professional accounts, or similar to the group norms that have developed in parts of the autistic community. And that means that if they choose to react to this unfamiliarity with some combination of dismissal, scorn, disbelief, etc… then a lot more people will listen to them than to us.

In the autistic community there is a stereotype that says that autistic people all think in a way involving much more of the “that is a table” stuff than I use. That autistic people’s abilities are very stable in the long term. That there is only one direction of “progress” and that is the direction even most nonautistic people say is forward. And Temple Grandin may be responsible for a lot of this, especially the idea that autism “grows less with time”.

Is that a valid version of autism? Sure. Is it the only one? No way. I have talked to a lot of people who just have trouble grasping how people like me work.

The other option, besides grumbling about us not being autistic enough, is to either say “That’s different than my experience, but, meh, whatever, we are all different,” or to even say “Wow, that’s different than my experience but it’s sure interesting, tell me more if you want to.” Either of those responses is sufficient.

Having to listen to autistic experiences different from our own is something those of us with experiences in the minority do all the time. We have to. We are outnumbered. It would be nice if instead of going “how can you possibly call yourself autistic,” people with the majority experiences would just learn to accept that theirs are not the only autistic experiences on the planet.

I have actually gone into more depth than most people I know of to learn the different experiences autistic people can have. I listen. A lot. And it’s endlessly interesting to hear how those of us who share a label both resemble and differ from each other. This is one reason the people at MIT find me useful, because I have delved heavily into the many lived experiences of autism and can tell them if I have heard of anyone having a particular experience (either directly through autistics or indirectly through parents or professionals). They also say I am unusual in that I don’t just repeat what the professionals say about us, I instead am very aware of the multitude of different things we say about ourselves, and the influences of the thought of different professionals on the stuff we say.

It’s a fascinating topic if you’re interested in it. But you don’t have to be into learning that stuff, in order to give people with the less common (and/or less commonly discussed in the autistic community) variants of autism the basic respect of believing what we have to say about ourselves. Because that voice in your head that says “If it differs from me or people I know then it must not be real?” That’s ableism. And to the many people who have written to me in private to say they have these experiences but fear telling about them in case they get rejected or called liars? That rejection from even other autistics of all people, the people they expected compassion from, that can be devastating.