I took my cat back to the vet today (they said they would avoid cashing my check until I get paid in December). It turns out that what she has, probably isn’t just fleas. I kind of thought it was more than fleas, but I was hoping the vet was right about it being fleas or allergies or something.

They poked and prodded her all over this time. Judging from the pattern of when she yowls and when she doesn’t (as well as the one time she jumped, hissed, and bit the veterinary assistant) — something she is apparently far better at doing than I am — her pain is in a particular part of her mid-spine area, and then radiating out from that where the nerves from that go, including to that leg that she’s been picking at a lot.

So I got a long discussion of neurological diseases in cats. Apparently, they don’t have MRIs or CAT scans for cats anywhere closer than Maine or Massachusetts. And apparently, that’s both very expensive and unlikely to result in any useful information in terms of treatment (the main thing that is treatable, which this probably isn’t, the treatment is a surgery that can be worse than the actual condition).

They said that it could be something inflammatory like arthritis, and it could be a temporary injury. They want to put her on prednisone and see how well she does on that. She did chase and bully the dog a bit when she got home, which is a good sign. (She’d been too tired to even hiss at the dog before.)

I also got to learn that feline pain management… basically sucks. They apparently have fewer negative reactions to steroids like prednisone than humans do. But at the same time, they have really bad reactions to non-steroidal anti-inflammatories (like ibuprofen in humans), and there’s only a few they can take, and those ones not long-term. And of course, this may be neuropathic pain, which is hell to treat in any species. (As I’m well aware from having the human equivalent.)

She’s been acting really unusual — unusually cuddly, with everybody. She normally does like cuddling except with me, and then not as often as she has been. She even followed me into the shower the other day. When I came home from Thanksgiving dinner, she started prrrrr-yowling at me and then jumped on my chest and wouldn’t get off. She’s slept on top of me every night. She’s turned into cat-Velcro.

So… I’m really hoping this is temporary, but if it’s not, it looks like I have a whole new species (literally) of pain management to find out about, a species that’s even less well-understood than humans. :-/

Everyone’s doing posts about what they’re thankful for, on Thanksgiving.

I’m thankful for things that nobody should consciously have to be thankful for. I’m thankful that I have a family who has never once thought of killing me or justifying the deaths of people like me. I’m thankful for the fact that the people who did try, didn’t succeed. I’m thankful that I have a few friends who, unlike it seems the majority of the world, don’t think there’s anything about autistic people that remotely justifies other people killing us, and don’t spend their time sitting around sympathizing with the people who do. And I’m thankful for the existence of organizations like Not Dead Yet, that at least attempt to get what shouldn’t be a minority voice, that of disabled people who understand how far our lives are being devalued by this justification-talk, out there.

And if you’re still despite all the evidence of how much damage it does, going to justify this stuff? I’d be really thankful if you’d do it on somebody else’s server, and somebody else’s webspace, if you’re going to do it at all. As in, not here. There are more places where you can get away with that kind of bullcrap than places you can’t — if you’re that keen on it, go find one.

I’ve just noticed that I had a bad migraine, gone all over the house looking for pain meds (that should tell you something about how bad it is, I almost never use pain meds), and not found any. The going all over the house alerted an automated system where someone checks in and sees what’s going on. This is done in a fairly non-intrusive way, and I can hear when they’re listening and when they’re not based on assorted beeping. And so I told them what was going on, and they helped me figure out how to borrow ibuprofen from a neighbor.

Just a few years ago, I was in so much pain that I spent most of my time curled up on a couch, and did not think to ask for pain meds until I’d spent so many months that way that I had to retrain myself to sit up for any length of time. And I didn’t even think to ask for pain meds then — someone else, through fairly careful observation, was the one who figured out I should do so. I didn’t recognize what I was experiencing as pain, and even when I noticed, I didn’t realize I should tell anyone.

I worry when I make these sort of posts that they’ll be read in an overly maudlin way, or through an overly individualistic sort of lens, and that’s certainly not how I intend them.

Someone told me recently in chat that she’s surprised at how fast I must have had to change in the past few years, given all the things I’ve learned and crammed into that time period. I can remember sometimes during that time, experiencing things where someone would treat me as if I was a certain way, that I’d been the month before, maybe, but that was now not there at all. And not really knowing how to react to this. Someone told me at the time that most people aren’t prepared to keep up with that rate of change in someone else, but that people do change that fast sometimes.

I told the first person (last night?) though, that I’m not sure whether seemingly rapid change happens all that rapidly, or whether it’s a bunch of little things in the background over time that add up to something that looks very sudden. A bunch of little things in the background over time is certainly how I’d characterize the way a lot of things in my life go. They only get noticed when they combine in such a way as to jump into the foreground, often in a spectacular way. But the little components and stuff are all there, all busy lining up, all the time.

I don’t just live my life in this foreground-land that other people notice, either. The constantly shifting patterns of the world are always there.

The fact that I notice them is in some ways constantly visible, in the way I respond to my environment. Anyone who knew what they were looking at would be able to read the way I move in more detail than I even always care to think about. They would even know the tiny ways I can use slight modulations in my reactions to communicate with other people who know how to read that kind of thing. They would see, in short, what I see when I look at a lot of autistic people presumed unaware of their surroundings for reasons totally unknown to me.

But, the “foreground” stuff is much tinier than that, and it seems that that is what people pay attention to. A very tiny sliver of the amount of stuff that’s going on, and that’s what people base their entire ideas on. That’s how we can be presumed unaware, or aware, at the drop of a hat, based on some pretty arbitrary criteria.

But even so, I’m still amazed that I noticed I had a migraine, and then took all those steps in terms of doing things about it. Some of that is stuff I learned, some of it’s made possible by the environment I live in, some specifics are made possible by the electronic surveillance systems running in my house. But being able to do that sort of thing, even sometimes, does amaze me. But… if anyone turns this into some kind of disability-inspiration thing, just please spare me, that’s not what I’m talking about.

As I was writing this, I found out that another autistic person will not have any chance to experience life any more, in the way I’ve just described, or any other way. There’s been another murder. I’ve long since been no longer surprised. It’s just a matter of bracing myself for the inevitable over-sympathizing with his murderer. Again. And again. And again.

(If this post offends you, read this one first.)

Bernie Rimland is dead.

I’ve watched two people I know (not him) die in recent years, and watched their various eulogies transform them into people they never were to begin with. Perfect people, with their positive traits exaggerated, their negative traits eliminated, and sometimes growing (in the course of the eulogies) positive traits they never had to begin with. This bewildered and terrified me. If physical death was not enough, erasing their bodies, dishonest eulogies were erasing people’s true memories of them.

Not only that, it made me seem like a monster for remembering them as the people they actually were, who were, like everyone, a mixture of good and bad points. I don’t know what magic goes on in most people’s minds when someone they know dies. I don’t know what about death transforms the memories of the living. My memory does not transform that way, I remember dead people the same way I remember living people that I haven’t seen in awhile.

I will always remember Bernie Rimland as the guy who used his fame for publicly debunking the refrigerator mother theory, as a platform to say a lot of things that were destructive to autistic people. I will remember him as a promoter of mass institutionalization of those he regarded as severely disabled. I will not remember him as any kind of autism saint.

This is, incidentally, exactly what I thought of him yesterday, when he was alive.

(I wrote this last night, for the blog carnival thing, am posting it this morning.)

One great example of that was found tonight while helping Laura do photography. I was worn out to the point where voluntary body movement was slowing to a crawl. I was the only one of us remotely capable of getting a couple calendars down off the wall we’d hung them on. Laura cannot climb things, period.

I knew that with voluntary movement I was screwed, I could not climb something. But I have an excellent climbing autopilot — put me in a climbing situation and it nearly always turns on. So with the voluntary movement I tipped myself over towards the thing I was starting to climb on. As I expected, this activated my “climb” instinct and I climbed up (stepping fairly agilely onto the arms then back of a couch and balancing there), grabbed the two things, climbed back down, and froze again.

That’s a good example to start off an entry on doing things differently, which is the topic of the next disability blog carnival.

Sometimes I see it as, there is a great reservoir at the back of my head somewhere. All the information goes into it. Thinking, moving, perceiving, anything.

I can, for instance, read a book. And I will not be able to answer any questions you have about the book right after I read it. I will not have any particular understanding of it that I can pull out. (Unless it’s a very specific kind of book.) But within hours, days, months, or years, all the information pools in the back of my mind.

Then, I cannot pull out that information at will, but when a topic triggers it, I might spit out entire paragraphs of whatever I had been reading, or else even paraphrased, the ideas will come out.

I have been taught, and taught, and taught, life skills, over and over again, in various programs designed to teach people life skills. The stuff from the programs doesn’t stick. However, since having more hands-on assistance in the shower, my body has picked up the pattern and can now rinse itself and do a few other things.

My most natural way of looking at the world is through patterns of sensation and movement through space and spatial stuff in general, not through the clunky world of words or word-like symbols that most people seem to use. If I stick to those things, there is a lot I can perceive that most people have trouble perceiving. Including socially.

By “including socially”, I mean that when I am around a group of people, their voices may turn into the sound of water, their movements may all sort of blend together, but in their movements I see patterns not only of individuals but of the people interacting within a group, and the individual’s place within the group, and their effect on the group and the group’s effect on them, and on each other. I see this particularly well when not trying to understand what they’re saying to each other.

I know this goes against all the autism literature, but there’s at least one great failing in the tests that use language to assess something that I, for one, cannot do at the same time as language, and in fact have no words for. How can they test a skill they don’t know that exists in the first place? How can they test a skill in language where a person cannot do it while also doing language? If I am using language I am pouring all my effort into that.

It’s when the deliberateness and super-consciousness and direct symbolic contemplation and all that other stuff comes in that I get lost and confused. Deliberate movement can be totally not there, but automatic movements will still be if triggered. Same with deliberate memory, deliberate perception of things put into categories, etc.

Many times I have to use the deliberate whatever-things to drag myself to the next non-deliberate whatsit to keep things going. (This is one reason I have so many things to do at any one time, because I never know which one will allow doing something that day, so I rotate.)

So there are many times when I am doing the same thing superficially, but coming at it from a totally different angle than most people do. And there are many times when I am doing something lots of people don’t realize is possible to do. I know I have written about things like this before, but this really is the main way I do things differently. There’s a lot more detail, but I can’t, deliberately, fill it in right now. Go figure.

Now off to submit this.

(By the way, speaking of stuff getting done, I know I owe several people emails at the moment. To the person I owe the particularly long email: it’s long (I hit page down 20 times to get to the end of it in my email program) and getting longer, I’m working on it every day. The person who wrote the biography I posted, I’ve meant to send other emails to for awhile. Etc. I also seem to be neglecting a couple close friends at the moment, email-wise. But I haven’t forgotten people.)

The next Disability Blog Carnival is on how disabled people do things differently. This may not be my only contribution, but I’m going to send it in case I don’t have time to write another one.

Part of this post is going to be taken from a document that I don’t show to a lot of people. I wrote it in 2004, about the long and twisty path I took to understanding certain things about the world, and myself, and to gaining certain abilities. Unlike many autistic people I know, I have few to no moments of sudden revelation (to me or to others), sudden ability, sudden anything. I have nothing like the woman I know who deliberately taught herself to make speeches using among other things a radio, when prior to that she had immense difficulty with speech. Nothing dramatic and exciting like that.

There’s a book that I read, that I don’t want to name in case it spoils it for some people. But in this book, a boy tries to get everything he wants, and gets more and more lost. He has a long series of bizarre adventures, going in all kinds of directions, thinking he knows where he’s going but not really understanding a lot of things, at least not on the surface. He just sort of drifts along on whims. Then eventually he comes to some important realizations about the world, that he didn’t even know he was going to make, based on all those twists and turns. A woman in the book tells him, “You took the path of wishes, and that path is never straight.”

There are some ways in which I have been like that boy. Not that I have drifted around on a whim, but that I have often never understood what I’m learning at any given time, and that things, under the surface, meet together and gradually coalesce. When any moments of revelation happen, they are the result of all that twisting and turning, every bit of which was necessary, none of which I had understood at the time. I get fragments of understanding of various things, and eventually, even if I don’t see how they’re doing it, they fall into place when I’m least expecting it. But this is gradual, and it is in many ways non-deliberate.

When I was a certain age, I was very confused about communication. It’s hard to describe that state of mind in a language that is developed mostly through use by people who have not had the experiences I have had. Even many autistic people I know have not had this experience. I have, though. Remember, that I was not thinking these things in language. Remember also, some of these things are things I may have known before, but forgotten in one of the brain-scrambles of puberty. I have no way of knowing at this point, all I know is what it was like for me.

I had, bits of abilities at communication, not the whole thing. And these bits and pieces do not work well when not connected to each other. I was intensely aware of my isolation from other people communicatively. I made some efforts to communicate, such as by playing tapes, that were not understood as communication (because most people play tapes to listen to, not to tell others things — but you’d think the point at which I actually made a tape with tiny bits of sentences that all meant something very obvious, would have been, well, obvious). Meanwhile some of my actions that were not intended to be communicative, were falsely understood as communication.

One thing I knew — and knew absolutely — at one point, was that somehow, I was not alone in the world. That the things I was experiencing were not unique. And that whatever thing was missing for me right then, and I only had the vague shape of what it was, would be told to me in the future once I met someone who was autistic. No, I didn’t know it as “autistic,” I wasn’t using words, but that’s what I meant. Someone who thought along enough similar lines as me to understand things.

I felt like, if I were a house, the front windows were boarded over with pretty heavy-duty boards. The front door led to a dead-end passageway like the stairs in the Winchester Mystery House that led to the ceiling. Not all of this was innate to me. Some of it was later done to me, reinforcing the boards with heavy-duty steel, and painting up that dead-end passageway to make it look more like a house, not the house I lived in, and not a normal house, but a different house altogether. But I wasn’t fooled, because I was in the rest of the house. (This is an analogy I formed before I ever saw the t-shirt, by the way, that said, “The lights are on. Yes, I’m home. You’re just not looking in the right windows. Keep trying.” But I love the t-shirt and am wearing it right now.)

And, what I desperately needed at that point, and knew it, was to find someone who knew how to get in the back door, because they lived in a house shaped enough like mine to know where to find it. I hate “unlocking autism” metaphors as much as anyone, I hate the psychoanalytic garbage that goes along with them, this is not what I’m talking about. Any psychoanalysts or would-be psychoanalysts with fantasies about “unlocking” or “solving” autistic people as if we’re locked boxes or riddles, go home and unlock (I could have used a ruder word there) yourself. I’m talking about someone who had enough common knowledge with me to form the basis for me to learn certain things from them. Most people did not experience the world in any way close to how I did, and so the things they wanted me to know, and the things they said to me, never quite connected in my head.

My experiences in the next several years were unfortunately not promising. For one thing, I was heavily drugged, which fragments a person in ways that have to be felt to be understood. For another thing, I was pretty much given up on. For yet another thing, all people who connected to me (I had pretty much no ability to reach out to people myself in any way they’d notice) were subsequently told or forced to get away from me. For another thing, there were plenty of people working on the painting of that dead-end room and re-boarding of the windows while claiming to be helping me.

I’ve described my experiences in that system as follows (this is another analogy from the private piece of writing):

Imagine being in the middle of the road. You might not know what a road is, or notice that you’re standing there.

Then, somebody deliberately hits you with their car hard enough that you are too severely injured to get off the road on your own.

Then the real fun begins.

They tell you that hitting you with a car was, indeed, helping you.

Then they start screaming at you, “Get off the road! What are you, an idiot? Oh I see you are an idiot. I’ll need to run into you again then. Are you nuts? Actually, yep you are, better run into you again then. Hey, I keep running into you, so why don’t you get off the damned road already? Dumbass. Can’t you see how much I’m helping you? You deserve to get run over.”

That’s of course a metaphor for a wide variety of experiences, and doesn’t match all the details, but I don’t want to get into details, and in some cases don’t know how to describe the details without metaphors, so the metaphors will have to do.

Anyway, one of the things that was drilled into my head somehow by this experience was in fact that nobody would, could, or even should know what was going on in my head. By that, I don’t mean telepathy, but just, basic empathy. Like, the way a woman who’s had her boyfriend cheat on will have some idea how another woman whose boyfriend cheats on her feels. There is a vast common context that most people share, and while being a human being I shared some of that context with some people, there were large enough chunks of that context that I did not share, that I was very confused by everyone, and so was everyone by me.

It’s hard to describe what it meant to me when I happened upon someone who did understand that context. I was trying to describe it to someone the other day, and only could get at it through metaphors, and was being confusing. Maybe I will have to be confusing again.

This is a direct quote from the private communication document:

What she did, though, is difficult to describe, because any interaction between two people is unique. If either one of us had been a different person and tried the exact same actions, they would not have worked, although working from the same values might have. People are not programs. There are no two identical. If she had treated me as some kind of formula, she would have been like the “experts” who preceded her in my life, or like some autistics I had met who assumed all autistics were alike.

And that is important to keep in mind. I’m not giving formulas here, I’m talking about my experiences.

All I can say, is that she used language in a way I understood. She used it based on a context that she could perceive that most people could not. A context close enough to what I perceived to make it work. She was someone capable of getting in the back door, so to speak, and talking to me inside the house, rather than all the people standing around in the dead-end front room yelling at the walls and thinking they were having a conversation with me.

And within a very short period of time, I began changing too rapidly for most people to keep up with. This was still not sudden. It was gradual. But understanding was happening that had not happened before. A lot of those random meandering things I’d picked up clicked into place, because someone could show me the places they went. I don’t think she did it on purpose. I don’t think it’d have worked particularly well if she had. But she came along at the right time.

One thing that helped a lot was communication with me. Most people before that did not communicate with me. They communicated at me. They either were telling me what to do, or attempting to hold a conversation with something that from what I could tell was three feet away from me, or inside their own heads, and nothing to do with me at all. I was stunned that someone was talking to me instead of to all kinds of hallucinations in their minds that were not really there, and getting to know me instead of telling me what to do.

Another thing was having a roughly equivalent frame of reference. It was like I had spent all my life around people whose lives were built, some more and some less, around a shared hallucination that I couldn’t see. All their references in communication pointed back to that hallucination that I was left out of. They did not necessarily bear me any particular malice, but they did not make sense to me because I couldn’t see their hallucination, and I didn’t make sense to them for the same reason.

And so along came someone who didn’t perceive the shared hallucination either, and thus could perceive a lot more of the world that I perceived. And who made reference constantly to things I could perceive (and that a lot of the hallucinating people were too distracted to perceive), in her conversation. So understanding what she was talking about, and in turn what other people were talking about, and how to talk about things myself, was easier. Words that made reference back to reality were a lot easier to create, follow, and sustain.

Getting back to my last post, this does not mean that knowledge has been the entire solution to anything. There have been other things besides knowledge going on, otherwise I would be able to simply open my mouth and speak words that pertain in some way to what I am thinking. When really, still, putting words to thoughts, is still difficult, and putting a mouth in there, is still next to impossible.

Another analogy from my private document (I might have used some of these before in other posts, I can’t remember):

Speech felt like using a very long, heavy, rusty lever. I stood way at the back of my head yanking on this lever, aiming at an out-of-focus pocket of words yards in front of me. The lever was so long, and the pockets of words so far away and so pre-fabricated, that usually I would hit another pocket of words entirely.

This is another thing I wrote about this:

As I learned things (not just communication) and became more aware of many things, I also became aware that I couldn’t do everything just because I understood it. I couldn’t put steps in sequence very easily. I had to work to consistently make sense of words, sound, sight, and touch. My body often froze in place and I couldn’t get it to do what I wanted. Even when it was not frozen, I couldn’t simultaneously direct it, think, and understand what my senses were telling me. The seizures that had been suspected since early adolescence were still there. So were lots of other things.

I learned to communicate about pain, and learned that the searing electric sensation that had been on my skin my whole life was called neuropathic pain and, more importantly than what words surrounded it, was treatable. The same medication seemed to take care of the seizures. I got a lot of other lifelong health problems treated, ones I had never known to communicate about, and nearly every one of them showed up on tests once I got doctors to believe that I had felt these things all my life and never said anything. For some reason that was hard for them even knowing I was autistic. They seemed to think it was natural for a person to know that “pain” is one word even though it refers to different sensations, that it is something one communicates about, and that anyone who had pain for twenty years would have said something by now. I told them about having an intestinal blockage and telling nobody. Most didn’t get it. I still don’t know what they imagined I was doing.

I began to understand overload and shutdown, and long-term shutdown and partial shutdown, and the effects all of these things had on my life. I began to realize exactly how narrow my focus on the world really was, but also how much I could understand once information did make it in or out through that tiny hole, if I gave it time. I had always put connections together in my head automatically after the fact, and I discovered that my ability to do so once the information got into my head was very good and led to important conclusions.

This is to say, no, it’s not as simple as gaining certain knowledge. Speech, possibly because of pre-wired stuff, and possibly because of the way people had tried to teach me it combined with pre-wired stuff, has simply not been a viable option no matter how hard I worked at it. And the harder I worked the worse it got. On the other hand, possibly because writing was picked up on my own, and on my own terms, it wasn’t as tainted. For whatever reason, it’s ended up being the only thing that works.

The following is, for the most part, the ending of the document, and a suitable ending to this post:

Gaining the ability to have meaningful communication so much of the time, my more meaningless attempts at communication have largely fallen away. I still have to use strategies that involve whacking at words in ways that use non-communicative versions of echolalia sometimes, because my strategies for communication still involve a good deal of communicative written echolalia. Many of the disconnected things I had learned over the years have slammed together to make me a good writer. I have worked very hard, and been very fortunate in who has been around at what time, in order to get to this point with communication, where all the necessary skills come together in a cohesive way instead of fragmenting all over the place.

I find, now that I can communicate more or less consistently, that I am incensed when people think I am either not really communicating, not telling the truth, or simply being led along by whichever person they happen to associate me with that week. Now that I put this much effort into what I say, it turns out some people still think I’m out of touch with reality or a liar (and people have even suggested I don’t actually write for myself). It hurts to have come this far and put forth this much effort only to reach disbelief, something I can do little about.

This disbelief has real-life consequences beyond emotional pain. When I was able – finally – to tell about pain that turned out to stem from twenty years of untreated reflux, I was told that if it had really hurt I would have talked about it earlier. People treated me like I was making things up or exaggerating. In reality, I have a high pain tolerance, difficulty with language around internal sensations, and under-report pain. [deleted another description of another medical problem]. While I am not a hypochondriac, I am very afraid that next time it will be something life-threatening and I will be either too afraid to go to the doctor or the doctor will dismiss what I have to say. This has happened in the past with life-threatening conditions, and somehow doctors never have to answer for their life-threatening attitudes.

The attitudes on things that are not as easily tied to life and death are problems too, though. One reason I have never been able to tell this story in this much detail before was because many people would not believe me. I have been told directly that my experience is unimportant, that it is narcissistic to believe I mattered enough. I matter plenty, and while I don’t matter more than other people, surely I don’t matter less. I once worked hard to explain my life to someone, and he said, “I used to study phenomenology. It was interesting, but there was no meaning in it.” My life is not phenomenology, and it is not meaningless. I have gained from reading the writing of other autistic people on what it is like to discover communication, and I am writing this to add to what is out there already. While parents, professionals, and interested laypeople will read this, it is aimed, like much of my writing, primarily at other autistics.

It also hurts when people say they liked me better when I couldn’t communicate as well. They sometimes say I am too judgmental now. I don’t think I am, but I am able to express my opinions now, and I do sometimes have opinions. There’s such a thing as being (or appearing, even without being) non-judgmental to a fault, taking in everything said to you no matter how nonsensical and either repeating it or being silent. That may be easy to be around for a lot of people, but it’s not communication. It has made me realize that some people don’t like me very much, but only liked what they used to be able to imagine I was. My thoughts were not always passive, but my actions often were. They still are, in fact, but I am now able to engage with them in ways that I couldn’t in the past, particularly through letting others know what my actions mean.

Through being able to communicate consistently in words, I have gained a number of strategies to live my life. I have been able to get to know people and to know what getting to know people means. I have been able to fight for services, ones that allow me to live in my own apartment, not an institution, and I have been able to fight to retain staff who are important to me and to fire staff who harmed me. I have made more friends, and we continue to influence each other, hopefully in good ways. I have been able to explain my behavior and explain what behavior I really don’t intend or want to engage in, like whacking myself on the head or hitting people, and I have been able to ask for help figuring out how not to do these things. I have been able to get life-saving medical care where in the past I nearly died sometimes because I couldn’t say anything about it. I have been able to explain to people why I can’t always come up with words.

I have also been able to explain to people why I neither need nor want to be cured, and why learning word-communication is not a cure for autism-as-a-whole. I have been able to say what autism-as-a-whole means to me outside of the usual equally fallacious concepts of “autism sucks because it takes away communication and makes it hard to do things” and “autism is great because it gives me l33t ski11z and makes it easy to do things.” To me, autism is a word used to describe the sort of person who has my sort of brain, who has certain characteristics that run deep to the core of perception and action. To me, this is a kind of person that the world needs to value for what we are, not cure to what we aren’t. I learned to word-communicate by learning from other autistic people the skills that it takes to work with my autistic brain, not against it.

When I was busy being written off in institution-land, some of these same autistic people were being dismissed as useless when it came to practical matters of teaching autistics to communicate. I am living proof that they are not, and that in fact some of them have done more for me than all the professionals put together ever have (others of them tried to force-fit me into their way of thinking and communicating, claiming to understand me when they didn’t, and those I have clearly resisted). Not every autistic person understands every other autistic person or knows enough to know how to listen and help another one communicate – we are all different from each other – but I don’t think I could have ever learned these skills as thoroughly as from those who have, themselves, had to use them. Communication and otherwise.

I know that there are parents out there who treat it like a joke that autistics could teach other autistics to communicate or navigate in the world. [Side note: I’m not exaggerating, some people have laughed like it’s a joke that this happened.] It’s outside of their experience, maybe. I know that some who have read my writing think it’s ridiculous that this is possible, and that some dismiss my experiences as anomalous. If my experiences are anomalous, they shouldn’t be. Autistic people can learn from each other, and learn how to do things our ways, which differ from non-autistic ways. I can’t emphasize that enough. The last five years have been the best years of my life, because I can finally have some control over my life and decide what I want to do with it. They have also been hell, because breaking free from hell (by which I don’t mean autism) can be a vertical climb at best. It still all amazes me.

For those who asked: The cat is doing fine. Her problem appears to have been either fleas (brought in from the dog, or humans) or allergies or both. She’s now hiding under the bed looking doped up, but hopefully will be feeling better soon. Here’s a picture of her:

To the person who paid the vet bill: Thank you. A lot. That really means a lot that I could actually get my cat checked out and treated today. I really don’t get why people claim autistic people lack compassion, after the amount of people I’ve seen willing to assist with things like vet bills in this community.

I’ve just found out that $200 of my money has been spent in ways I didn’t authorize. There’s something wrong with my cat, she’s got a large bald patch and twitches violently whenever I touch anywhere near it. My dog has peed all over the apartment after I started crying about that. I haven’t slept all night. If I don’t post today, that’s why.

I have to start out noting that I’ve got problems with the received medical dogma about eating disorders.

I spent a few weeks in a children’s hospital ward where I was one of two kids (the other had cystic fibrosis) who wasn’t anorexic. The kids were encouraged to talk about what made them not want to eat, but then taught firmly that whatever reasons they brought up were not the real reasons. Except one: Control. Body image, no, that could never be it. Pressure to be thinner than your natural body type as a model, dancer, actor, or gymnast, no, that could never be it either. It was always some combination of a desire to control everyone around you, and OCD. That was it. It was final. It was all about you, never about your surroundings, and always a disease that you had totally independent of other factors.

I have watched a staff person who is insecure about her body and often doesn’t eat because of this, being taught the same thing by her therapist — she is “learning” (she did not know this, but apparently her therapist did) that it’s all about being a control-freak.

(If people wonder why I dream about being put on trial and having evidence submitted that I’ve done something I’ve never did, that is to be taken more seriously than I am… yeah.)

Anyway, that’s all to say, that conceptualizing a thing in this manner can automatically depoliticize it, and shift any and all responsibility off of the people who are encouraging a person to think in this way. With anorexia, there are tons of pressures, some quite explicit, to be thin at all times. Not that nobody can be a control freak in that particular manner, but it seemed strange to me that people’s bosses who told them to lose weight or else they’d be out of a job, were not the ones considered control freaks.

There are a number of pressures on autistic people and families of autistic people (but pressure on family becomes the family pressuring the autistic person, often against that person’s will) to adhere to strict diets of various sorts. Some are stricter than others.

There’s the gluten-free casein-free diet. There’s diets based on plenty of dubious forms of allergy testing. There’s “candida diets” given to people who don’t really have systemic candida overgrowth to begin with (such a thing is very rare, generally too dangerous and obvious to be overlooked for decades, is not the same as localized candida overgrowth such as on the skin, and occurs mainly in severely immunocompromised people, which means people such as people with AIDS, not even most people with autoimmune disorders or anything like that), but whose doctors tell them that the natural candida or other fungus in their system is really an infection. There’s all kinds of food additives that get considered absolutely unsafe and impure. There’s diets based on the color of the food. Fad/quack diets are really common and almost endless in their permutations.

This is not to say that nobody should change their diet, or that nobody has food allergies or intolerances, or diseases (such as, in my case, migraines, reflux, and early-onset gallbladder disease) that can react certain ways to certain sorts of foods. But when a person is told because they are autistic (or because they have some other incurable condition) then they must have these other things, something is wrong here. And even, for instance, with migraine triggers, not every migraine trigger triggers migraines in everyone. I don’t avoid the entire list of foods, just the ones that make my headaches worse, and just in the quantities that actually do make them worse (which for some is any at all, but others it’s okay to eat a little bit). A friend and I both have migraines, but have totally different food triggers. It’s also a safe bet that most people who claim you’re allergic to a huge number of different foods, or else prescribe diets based on your “electromagnetic field”, are incorrect. Real food allergies exist, but are often very severe (for instance, eating a peanut causing anaphylactic shock), and usually are a few very specific kinds of foods (and which ones, vary by age among other things).

Enter the idea of orthorexia. The term was coined about food fads, particularly spiritual and health-food food fads, but it applies equally here. It’s an obsession with eating only the most proper and pure kind of foods. You can read this Original Essay on Orthorexia by the guy who coined the term. He himself has experienced it.

He describes one of his patients, whose asthma he treated with a strict elimination diet:

Recently, Andrea came in for a visit and described the present state of her life. Wherever she goes, she carries a supply of her own food. She doesn’t go many places. Most of the time she stays at home and thinks carefully about what to eat next, because if she slips up, the consequences continue for weeks. The asthma doesn’t come back, but she develops headaches, nausea, and strange moods. She must continuously exert her will against cravings for foods as seemingly innocent as tomatoes and bread.

She was pleased with her improvement and referred many patients to me. But I began to feel ill whenever I saw her name on my schedule. The first rule of medicine is “above all, do no harm.” Had I really helped Andrea, or had I harmed her? If she had been cured of cancer or multiple sclerosis, the development of an obsession might not be too high a price to pay. But when we started treatment, all she had was asthma. If she took her four medications, she also had a life. Now all she has is a menu. She might have been better off if she had never heard of dietary medicine.

There is also an entire page called The Psychology of Idealistic Diets with links to articles about orthorexia.

Basically, a lot of these diets appear at first to make people feel better, because of the same thing that happens to people who starve: There’s a sort of giddy euphoria and extra clarity that happens in early stages of nutritional deprivation. Probably occurs in order to get people clear enough to go find more food. But then when that goes away, then they feel like they need to eliminate more foods in order for it to work again. And so on and so forth.

Also, when you’re not getting enough food, you get obsessed with it, so that all you can think about is what you’re going to eat, and how you’re going to get it. This is why dieters in general are so food-obsessed, and one reason I refuse at this point to restrict my diet any more than absolutely necessary. It’s like that guy said, do you want a life or do you want a menu?

A lot of people also start to feel superior to, and look down their nose at, people with less restricted diets. They say that either those people aren’t as committed spiritually, or are throwing their health away, or aren’t committed enough to their values. I’ve received more than one impassioned lecture from people who insist if I don’t do such-and-such a diet then I only have myself to blame if (insert horrible thing and/or health problem here) happens to me People can become evangelical about diets, much like Luke Jackson’s insistence in one of his books that every autistic person of any kind should try the gluten-free casein-free diet, and many parents’ insistence that parents who don’t do the diets on their kids are to blame if their kids remain autistic.

I am, by the way, an ex-vegetarian, an ex-vegan, and an ex-adherent to all sorts of quack diets that were pushed on me pretty hard. I have had people who adhere to all of those diets insist that I ought to go back to them, and in a few cases insist that I “wasn’t doing vegetarianism and/or veganism properly” if I was unhealthier that way (and believe me, I was unhealthier, and not for lack of supplements — although I note, with all of these diets, it’s way easier to adhere to them the more money you have, so there gets to be an element of classism in this stuff too). Some people become adamant that it’s the person’s fault if various diets make them unhealthy, and feel superior to people who “do those diets wrong”. (Note: I don’t care if other people are vegetarians or vegans or anything else, but I do care when they insist that if I am not, there is something wrong with me. Or that I don’t care about animal rights — in fact part of my reasons for lack of vegetarianism are on animal rights grounds that I find more compelling than animal rights arguments for vegetarianism.)

People also substitute dieting for political or spiritual action. They feel more pure, on both political and spiritual levels, if they adhere to exactly the right diet.

At any rate, I mean this post as a warning, especially to autistic people, who are both over-targeted for fad diets (just like with anyone with an incurable condition) and more likely to carry anything of this nature through in the most absolute manner possible. Having been through this, as well as pressure to act like this (especially when I totally rejected orthorexic eating patterns), I’ve meant to post a warning like this for a long time. For whatever flaws there are to it, orthorexia is a useful concept to keep in mind.

I didn’t post links to any of these while they were happening, so here they are:

Disability Blog Carnival #1 was hosted at Disability Studies at Temple U..

Disability Blog Carnival #2 was hosted at The Gimp Parade. The theme was “The Cure”.

Disability Blog Carnival #3 was hosted at Growing Up With a Disability. The theme was spirituality and disability.

Disability Blog Carnival #4 will be hosted at Diary of a Goldfish. The theme will be “different ways of going about things”. Here is more elaboration on what is meant by that theme, and instructions on how to submit an article (your own or someone else’s) to the carnival. A reminder that some people don’t submit their own, so submitting other people’s stuff is really useful. (I didn’t find out disability blog carnivals existed until someone other than me submitted my writing to the first one.) Submission deadline is Monday November 20th.