Monthly Archives: January 2007

Yes, my language is comprehensible to others.

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I did that video “In My Language” that I posted recently. I’ve gotten some interesting responses.

Several people said their autistic children (and one non-autistic sibling) wanted to watch it over and over again. One of them had a son who never hums at all, but hummed the tune from the video all day after he watched it. Others hummed along too. The parents described their children’s reactions as interested, mesmerized, and transfixed.

This is a common reaction between autistic people, I’ve noticed. We do have ways of communicating with things around us that are mutually comprehensible for many of us (not all of us, and not all the same things are comprehensible, there seem to be groupings in that regard). Our interests and our reactions are not random, purposeless, or useless, and are certainly not ugly things to be hidden away or trained out of.

Chasing Oblivion

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A conversation last night reminded me to write about this. (Note: Now that I’m coming back to this, I have no idea when I started writing this, but it sure wasn’t last night.)

When I was a kid, I really didn’t want to exist. At least, that’s how I conceived of it at the time. I was not suicidal. I did not want to die. I just didn’t want to be there. The manner in which I started head-banging was not as the impulsive action it evolved into (and it did evolve into that), but I had heard a person could be knocked unconscious if the right part of the head was hit, so I set about trying to hit it over and over. Unconsciousness sounded like non-existence, and non-existence sounded pleasant.

It sounded pleasant because I was on a kind of overdrive that I have heard autistic adults talk about still being in. Some of them have sustained it their whole lives. I only sustained it about ten years, if that (maybe more like six or seven).

That would be ten years of doing incomprehensible things, for reasons I could not understand, with a vague fear that something awful would happen if I stopped, and being continually bombarded with more information than I could understand or handle. This is not to say there were not good things going on in this time period, but outside of specific incidents, I mostly remember a blur of shapes and sounds and words and pain. (Severe physical pain, which went untreated for more like 20 years.)

What I was thinking throughout all this, was about getting back to the nothingness that my mind could sometimes get into. I pressed myself onto the floor hoping that I would become the cool smooth surface of the floor instead of the jagged burning surface of my body. In school I ran out of the classroom and ran the paper towel dispenser in the bathroom all the way out of paper towels, ran the soap dispenser out of soap, and pressed my face on anything flat and cold I could find. When not doing other things, at home I tried to disappear in my room by inventing all kinds of scenarios where everything around me slowly faded out of existence, trying to call up the nothingness. Or else banging my head with things, trying to call it up another way.

Some people have tried to characterize some of what I was doing outwardly in this time period as pretending to be normal. That’s not actually a possibility. Doing that would have required a level of understanding that I didn’t have at the time. A better characterization would be, I was doing what I thought I had to do, with not enough capacity left over to reflect on why I had to or what it was I was doing.

To me, the world — in general — usually felt like one giant thing attacking me from all sides. I don’t mean in a paranoid sense like “people were out to get me” (although kids certainly weren’t very nice to me and teachers certainly nearly always took their side), but on more the level of total bombardment with something giant, chaotic, incomprehensible, and pain-inducing.

As I got older, I was put in situations where I had less and less time to do all these things, and so I started doing more of them in the open than I’d previously done. I lost most capacity for the appearance of standard learning, which people didn’t notice for somewhere between one and three years (I noticed right away). And all the other changes I’ve discussed during that time period were happening, so I was pretty disoriented.

I tried taking refuge in nonsense, since the world seemed like nonsense to me anyway. I also started preferring sleeping to being awake, and trying to treat being awake as if I was still dreaming. In my dreams I often fell into nothingness, which felt wonderful, so I kept trying for it while I was awake. I even tried running into a window (ground-level, it didn’t break) because in a dream I had run through a window and been absorbed into the cold glassiness and disappeared. And then when I got old enough to understand what suicide was I tried that (but was thankfully horrible at it).

A lot of people would attribute all this to how horrible autism is or something, but I don’t think it’s that. I think it’s the result of trying to function beyond your capacity day in and day out with no understanding of why and how to stop. These days, if I start getting an intense longing for oblivion, I understand that I am on the verge of shutdown, and need to lie down or at least do something less overloading. While I am still considered by at least one friend a “workaholic,” I actually push myself far less than I did when I was a kid, because I know what the results are — I don’t get any further that way, but I get a lot more burned out.

There’s a real problem, though, with the way things are set up (and I don’t mean the brain), when a little kid’s fondest dream is to not exist. I really worry about all the kids who are put through rigorous programs that make them do more and more, and the more they can do the more work is piled on them, to the point where their systems can’t take it. And the adults forced into that position from lack of readily-available assistance. I wonder how many of them just wish they could disappear, like I used to wish.

HELP! (Mailservers.)

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Can anyone help autistics.org set up the following mailserver system (I’m copying this directly off a piece of paper Laura handed me yesterday):

Mailsystem using
Squirrelmail/Postfix/procmail/Dovecot/spamassassin/clamav
(secure pop3, IMAP)
Integrated w. virtualmin GPL
on a debian sarge system.

Portions have been haved at/butchered, but productively (i.e., to my knowledge I got things more toward configuration, not less

We can maintain the system after it’s set up, but Laura is saying it’d take her months to a year with a good deal of support and assistance (and she has none at all) to even begin to be able to set it up. We’d want someone capable of working with the entire thing while setting it up for us, and not someone who’d just try to muddle through it, but someone with enough experience not to screw it up.

In My Language

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If you’re sick of videos, skip this post.

This is dedicated to Ashley X and everyone else who’s ever been considered not thinking, not a person, not communicating, not comprehending, and so on and so forth.

It’s also dedicated to people like Bryna Siegel who claim that the way we move is automatically purposeless, pointless, harmful to our development, and can be eliminated with no cost to us (but may be able to be used as a “reinforcer” in controlling other things we do).

Google version (click here for large version):

http://video.google.com/googleplayer.swf?docId=4998359028958016786&hl=en

YouTube version:

There’s thanks at the end to a zillion different people who influenced making this. I’ve wanted to make it for a long time, and somehow Ashley X’s situation pushed me into the final stages of it, even though it never talks about her directly. Lucas and Charles over on Michelle’s message boards had planted some of the seeds, Donna Williams gave me (probably without meaning to) one of those final little pieces of things that is tiny but makes everything make sense in a certain way, and this was the result.

What You Know

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I found this among a bunch of poems and stories I’d written. There’s a number of people it could be applied to, some famous and some not. It applies strongly to some people who are said to have an extreme intuitive knack around autistic people (and to the staff who said she had a knack for the developmental disability field — if you’re reading this, it’s about you, too):

You drop a ball and you know it will fall. You push a door and you know it will swing. Your experience tells you these things.

You push and you pull on a knot in my chest. You adapt to my every motion or action, like some kind of giant Hydra standing in my path no matter where I look or what I do. Thinking vanishes. There is only reaction. To you.

When I was a kid, I was in a hallway, and a bully came out of nowhere, all legs and arms. She would not let me go in either direction. No matter where I went, she blocked me, making loud noises. I thought I would never get away from her.
You’re like her, only you are more skilled than she is. Your blocks are more graceful and fluid, they look less like blocks, more like an oscillating dance of firm and gentle redirections.

I may look defiant, or compliant, or cute, or happy. I may look a lot of things. But you are there, you are influencing every one of these things.

You are said to be a miracle worker with a gift for working with people like me, and a deep understanding of us. Much of the world mistakes control for understanding, even love. So do you.

So tell me, if you understand so much, how did the ball feel about being dropped? How did the door feel about being pushed? What did they feel before they were dropped and pushed? What were they doing with their days? How do I feel about your presence in my life?

Politics, Ethics, and Mental Widgets

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This topic came up during the last Autistic Liberation Front meeting. We were discussing the connection of autistic people to the rest of the world, and Laura Tisoncik made a comment — can’t remember quite what — that reduced a lot of the ethical choices we were talking about making, being a choice between love and disconnection. And how there were all kinds of fancy ideologies people could get into and so forth, but this still seemed like a better way to sum things up.

I have a confession to make that might startle some people: I’m not capable of holding a complex ideology — what I call a set of abstract mental widgets all connected to each other in the sky — in my head. If I try, it falls apart rapidly. I can’t sustain it, I can’t even fully build it, and I certainly can’t believe in it. I used to try, because I thought that it was a measure of my stupidity or something that I couldn’t. And my brain turned to mush every time and I got really frustrated and miserable. I’ve since learned that that’s simply not my strong point and there’s no way on earth I could do it and would be better off putting my cognitive resources somewhere more useful.

This is not easy in a world that mostly equates politics and ethics with vast, overarching ideologies, all neatly connected like a giant sculpture in the sky, and no piece possible to be moved because it would bring the rest of the structure down on top of it. Of course, this is also a world that also equates politics with greed, anger, and corruption, and in which many people who do engage in politics all the time (trying to understand various power structures and social systems and how to do something about the bad parts) actually deny that they are political at all because they view politics as something ugly and dirty, something about politicians, rather than about everyday people. So they do politics all the time while denying it to their last breath.

My versions of politics and ethics have to do with taking some really basic, simple values — such as love rather than disconnection — and applying them to situations that I encounter in the real world. The strange thing is, this tends to yield what look like views a lot more complex than you’ll generally see coming out of a complicated string of mental widgets. That’s because of the “real world” part of it — the real world is actually more complicated than any mental widget could ever be, and applying a simple principle or two to the real world yields results a lot more complex-looking (when taken as a whole) than erasing the real world in favor of a complicated (but not as complicated as the real world) mental widget.

But given the circles I tend to run in, I seem to bash into complicated, rigidly-held, abstract mental widgets all the time.

There are people afraid to condemn the Ashley Treatment because it throws some of their “feminist” mental widgets out of whack. Some people have argued that seeing Ashley as a human being is dangerous because of this thing called “abortion rights” which has to have all kinds of arguments behind it (including the inhumanity of human fetuses by virtue of cognitive ability, which has always struck me as one of the stupidest arguments for abortion in the known universe, but anyway) and if we see someone severely cognitively disabled as having personhood then oh my goodness we might have to rethink our definition of humanity and rights and the whole world (or at least Feminism As We Know It) will fall apart. That it’s really only their ideology (not the whole ethical world) that’s likely to fall down under its own weight doesn’t seem to occur to people, and they do this damage control of their mental widgets so they can keep them all neat and lined up and orderly and safe while other people suffer and die as a result. (And people think that I’m the one who’s screwed up for lining up blocks.)

(My favorite posts I’ve seen about Ashley so far, by the way, are all by someone named Thirza, who wrote Growing Up with Sky, Oh Now I’m Really Mad!, and I Am Not Responsible for Your Discomfort. Zilari has also written Ashley X: What People Aren’t Getting which sums a lot of things up.)

The reason I can come up with so many things to say on so many issues, is not because I have a beautiful bunch of mental widgets lined up in my head with all the proper ideas on sexism, racism, classism, ableism, and every other ism out there, lined up neatly and gracefully, preferably in line with a particular overarching academic ideology where you memorize which bits of privilege are which and plug and play and mix and match. I’ve certainly read more than my fair share of “theory” coming from that angle (on more than my fair share of topics), but it’s just not where my head goes when I’m looking at a situation. I just take the situation and try to figure out what’s true within that situation, and write about that.

That method seems a lot easier to me. I don’t have to hold a bunch of things in my head that are not happening in front of me. I don’t have to memorize tons of arcane ideas about how the world works off in word-abstraction-land. I just have to take a look at what’s going on, maybe cross-reference it to various forms of “what has gone on,” or “what is going on elsewhere,” and that tells me most of what I need to know. My head doesn’t have to hold the whole world because the whole world already exists just fine on its own without my head around to make sense of it. It seems, though, that for some people it’s either easier or preferred (it’s hard to tell which) to memorize all the proper mental widgets, and to violently force the world (or at least make a serious attempt) to bend to the shape of the widgets.

This doesn’t mean that people who apply mental widgets this way always get things wrong, or that I and others like me always get things right, or that I always disagree with people who use mental widgets (whether both of us are right or both wrong). We’re all fallible human beings, and sometimes mental widgets can provide a shortcut to the right answer. But overall the mental-widget approach to ethics and politics strikes me as far more violent, hateful, impractical, disconnected, and damaging, even if it’s also aesthetically pretty from a certain standpoint and fits very well into academia.

So, I am political because wrong, evil things happen in the world and I find that the only right thing I can do is insert myself in the right spot to do whatever I can about them. Because politics as far as I’m concerned is about doing what needs to be done about the misuse of power and its effects on people’s lives, not about a specific set of mental widgets or a political party or campaigning or something. I may do what other people call analysis, but I do it by throwing a few really basic ethical principles at a wide and interesting world, not by memorizing bunches of mental widgets and lining them up in the right places. I can be totally lost by people’s tall nets of abstractions built in the sky, and that may make some people think I’m stupid or incapable of “real” political thought, but I think I do just fine closer to the ground, and that from closer to the ground I may even be better equipped to dismantle a lot of the ideas-in-the-sky — such as mental age, to pick a recent example — that seem to trip a lot of others up in their neverending throwing of one set of mental widgets at another to see which one topples first.

I wrote the following a long time ago about this topic, but it still applies:

In towers tall they shout across
Impressions of the ground below
In folly but in certainty
The more they yell the more they know

I tried to build a tower once
I lost myself in winding stairs
That clattered down on top of me
My building skills not up to theirs

I tried to build so many more
They toppled faster with each try
The more I tried to work it out
The more my plans would go awry

And now my feet are on the ground
I feel and smell and see the earth
And now that it’s in front of me
I know what all those words were worth

Basically, I just can’t get all interested in whether this-ism clashes with that-ism or whether under the-other-ism it’s possible to believe such-and-such or whether you need to meld the-other-ism with yet-another-ism to come up with a belief system that can encompass whatever situation is being discussed. While I’m clearly capable of using my brain, there’s one particular kind of intellectual analysis that’s totally beyond me and that seems to set me apart from most people I’ve known who are considered academically brilliant. And that is the one that gives people lots of shiny widgets to bat around in their heads. It’s not just a matter of distaste, it’s a matter of incompatibility with my brain structure or something.

In the end, it’s also the mental-widget approach to politics that convinces a lot of people that they are too simple, dumb, or outright too ethical, to be political, even as they do things that are incredibly important politically. It’s not that intellectual sophistication never has any place in politics, but it’s not a prerequisite for being political, either, and does not have to be used to create ridiculous amounts of rigid mental widgets where anyone who can’t memorize and use them is automatically an Inferior Creature of some kind or someone who will never be able to do anything of importance ethically or politically. (Although the existence of this bias seems like a wonderful example of cognitive ableism in trendy political circles.)

Guardianship and vulnerability

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Of her son, defending the possibility of guardianship in response to a post by the Autistic Bitch from Hell on the subject, attila the mom writes:

Although I’ve blogged about his autism in a limited way, because that’s not what my blog is focused on, he also has some significant cognitive impairments.

He’s not like you, ABFH. Or many of the other bloggers who have autism.

Considering guardianship isn’t about keeping him from making teenage/autistic mistakes. We welcome mistakes. Some he learns from, some he doesn’t seem to be capable of learning from because of his other impairments. It’s simply that because of some of his other “issues”, he really IS ripe for victimization.

I wonder how anyone would have seen me ten years ago. Or less. In terms of whether Amanda-teen is anything at all like Amanda-adult. I wonder what would have happened if people had assumed that since i was “ripe for victimization,” I would need a guardianship as an adult. I have reason to believe that some people, at least, were thinking along those lines.

Not so much my parents. They wanted to protect me, but I never got the sense they wanted guardianship. This had to do with professionals. I can remember when I turned nineteen and was beginning to really get a more and more solid handle on things like communication and self-advocacy, beginning to resist the system I’d been in the past several years. My parents were supportive of my attempts at independence. My doctors were horrified.

I remember one psychologist trying to actually convince me that I already was automatically under guardianship. He didn’t use that word. He told me that by virtue of the system I’d been in, my legal adulthood did not actually mean anything. He said that I did not have the same rights as real adults and should not attempt to exercise them. He said that if I did try, he, in consultation with my psychiatrist and my family, would intervene to make sure that I was “safe” at all times.

He tried to discourage contact with the new friends I was making, mostly autistic people in the self-advocacy movement who were telling me I had things like rights and stuff, and encouraging me to stand up to people like him. He called them liars and pathological narcissists and said that it was highly unlikely that anyone autistic actually got on a computer. He was always telling me not to believe these people really existed or cared about me, or were even relevant to a life like mine. I am sure he would have patiently explained to all and sundry that they were, even if autistic, definitely not like me.

When I finally moved out on my own, and quit seeing him, he apparently blew a gasket. I wasn’t around for this. My parents apparently had to bear the brunt of it, and they were fortunately supportive of my independence and suddenly realized what a jerk this man — who had known me since I was thirteen years old, and come highly recommended to them as an unconventional psychologist who took difficult or unusual cases — had been. They got treated to a long rant about how it was dangerous, them allowing me to go out on my own, and how all kinds of bad things were going to happen to me, and how they should not allow all this to happen, should not allow me to shut him out, etc.

My parents held their ground. If they hadn’t, I’m sure I’d be under guardianship by now, because he had been trying all along to establish some kind of de facto guardianship where no decisions whatsoever happened in my life without approval from him.

As far as vulnerability goes, that was being discussed long before the question came up of moving out on my own, back when the whole idea of whether I’d ever live outside an institution or my parents’ home was still an iffy one. I can remember discussions of whether my appearance alone was too vulnerable to be allowed in public by myself. If vulnerability were the criteria for guardianship, I am also certain that I would be under guardianship today. In fact, one reason that I have a durable power of attorney form is because I’m aware that even today someone could decide that I am not competent to make my own decisions, if I screw up in any of a number of ways.

I give things (money, food, etc) to people who seem to need them. Many people have viewed me over the years as being taken advantage of in this regard.

A couple years ago, two people approached me on the street. They started touching me and talking a lot about sex. Then they wanted me to get into a car with them, where they said they had a toy exactly like the one I was holding. I did not get in the car with them, but not for any reason of having noticed this was an unsafe situation.

When I first moved out, and walked around a lot more in public alone than I do now, the local teenagers used to play “taunt the retard” games, and tried to confuse me, then laughed at me.

My ability to deal with money is pretty limited and I need a lot of help with budgeting in order to avoid inadvertently ending up in negative numbers on a regular basis.

I’ve frequently done things like walk around at night in “bad” sections of town, without realizing I was in much danger. One time I even got cornered by a bunch of wild dogs and had to stand there for hours until they went away.

If someone knocks on my door and acts like they are supposed to be here, or even walks in totally unannounced, I let them in without checking to see who they are first. If they begin asking me questions, I answer them, although I don’t always answer them correctly because I have trouble accurately responding to direct questions. At least one lawyer has already taken advantage of this to inspect my apartment without permission and gain information that she believed useful.

I am very easily intimidated into obedience.

I cannot easily distinguish what is an emergency from what is not an emergency, nor can I necessarily get help in an emergency after identifying it as one.

I rely enough on automatic movement patterns that if, for instance, you put pills in my hands, or a noxious liquid in a cup, there’s a high chance I would swallow the pill or drink the liquid.

My perception of objects, especially in unfamiliar situations, is often limited to various sensory attributes of the objects, rather than what the objects are, what they can do to you, etc. I am in fact attracted to some very dangerous sensory attributes of objects, such as parallel lines (think roads).

I have done things before in the past, again in a combination of automatic movements and not fully processing rapid sensory data, such as open car doors in the middle of freeways without having a death wish.

I wear shorts in the snow if I don’t watch it.

The way I look (in public or anywhere else) marks me out very obviously as “different”, which of course can attract all the wrong kind of attention. Here’s a video of what I usually look like when I walk upright, just for reference purposes in that regard:

There has been serious question about whether the way I look marks me out in itself as too vulnerable to be “safe” leaving the house, especially given all the other stuff I’ve described. Certainly, it’s very hard for me to go out alone without attracting police attention, unless I am somewhere everyone knows me already.

I am generally thought of as having dangerously atrocious judgment when it comes to social situations, at least in realtime. I have repeatedly thought people were my friends who were actually in the process of harming me, and did not notice they were not my friends.

(My ability to apply any knowledge I do gain — of any kind — is extremely limited in everyday real-world situations, to the point where my “adaptive functioning” is officially considered one (small) tier above the lowest they could measure, even taking into account academics as used in the real world.)

I generally have immense trouble remembering things that I need to remember at any given time, including in medical situations.

I need a lot of help making certain kinds of everyday decisions.

Left alone, I cannot provide myself with food, water, clothing, shelter, minimal hygiene, etc.

Etc.

In other words, if someone was hell-bent on proving me incompetent, they wouldn’t have to dig very far. I know a lot of people who already have guardians who are more capable of handling a lot of things than I am. I got lucky in that my parents did not want to be my guardians forever, I escaped the people who did want me to have a guardian, and so forth.

I am not saying that there don’t need to be ways to work around these (real or perceived) limitations. But guardianship has always seemed to me like throwing an atom bomb at an anthill.

I also have a problem with uncritically perceiving us as vulnerable. It’s a very view-from-above position. I remember reading a book called Retarded Isn’t Stupid, Mom! where the author’s daughter moves out on her own. She is “vulnerable” in more ways than one, keeps company her mother doesn’t approve of, has immense difficulty handling financial affairs without disaster, but does live happily on her own amidst a lot of other people. The people she chooses to have in her life are not necessarily the people her parents would choose. The situations she gets into are not necessarily the situations her parents would approve of or find safe. But she’s living her life and these risks, though undoubtedly in the category most would define as serious, are part of that life. Taking her into guardianship would seem to me to be a horrible way to go about anything.

Parents of cognitively disabled kids often have real trouble seeing it as okay for us to be the people they believe are vulnerable, but out in the real world without guardians. If I’d had different parents, or staff, I might still be “protected” from the experiences that have allowed me to experience life as a reasonably free adult.

There’s something wrong here. I don’t know how to name it, what to call it, anything. There’s something wrong with what attila the mom said, in several parts. There’s something wrong with conceiving of us as possessing the inherent trait of vulnerability, and conceiving of guardianship as the main solution to that now-presumed-inherent trait. There’s something lacking in imagination, and there’s some kind of ableist values creeping in that I don’t know how to name or describe adequately. But something’s wrong here, with this entire conception of disabled people and our place in the world and our relation to each other and to those around us.

And I wonder how many of these autistic bloggers that are supposedly so different, would have looked so exceedingly vulnerable (by view-from-above standards) and possibly non-comprehending as teenagers that guardianship would be seriously considered. I wonder that because I know I was in that category, and I know that a lot of us were underestimated as kids at some point.

How much can we learn when safely supervised?

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I’ve got a long backlog of stuff I’m trying to blog, by the way, but this is what came out today.

I don’t in theory have a problem with making sure kids are safe. I want to say that up-front. But I’ve realized that a lot of the most important things I’ve learned in life, would not be possible for most autistic children in this day and age. I might have even not learned, or been much more delayed in learning, the connection between typing and communication, in today’s Internet-savvy world where parents protect and monitor their children online because of all the dangers involved. I’ve likewise heard Donna Williams describe running around totally unsupervised in ways that modern middle-class kids don’t get to do, and picking up a lot of important learning while in situations that are often considered quite dangerous.

When I was younger, there was a computer downstairs, and my brothers had it hooked up to a modem, that connected in turn to bulletin board systems. These were places you dialed up and could post on text-based message boards. On the fancier ones you could chat.

At this point in time, I was starting to get the mechanical act of typing down, as in pressing keys to make letters come out, and was becoming quite proficient at this. What BBSes allowed, though, was for typing words into a computer and getting responses back. Writing patterns of things into BBSes meant gradual recognition of what was meant by the patterns. I am sure I must have annoyed the crap out of a lot of people, but I learned some really important things that I still don’t know how I’d have otherwise learned.

These BBSes were not child-safe. If any parent saw what I was doing on there, they’d have shut down the computer. They included adult door games such as Fantasy Land, in which you gained points for having sexual encounters with other players and getting past their defenses. I encountered pedophiles who supposedly wanted to ask me questions about sexuality in children. My main shield against all of this was that I was too oblivious to what was going on, often, to respond in a way that satisfied anyone. I was still trying out the meaning and function of the written word as communication, so this stuff didn’t faze me or affect me.

A part of the freedom of this was that I was not being directly observed. If someone had plonked me into a writing program or something, and observed what I was doing, I would have stopped doing it. I would not have experimented as wildly as I did, and I would not have come to as wide an understanding of a lot of things as I did. I would also not have had the chance to learn a lot of things in context that I was able to learn in a BBS environment. There’s even a chance that the written word would have become as useless to me as the spoken word did. I had to have the privacy to discover these things on my own or I would not have wanted to discover them.

This is only one example of something I did that I “shouldn’t” have that probably benefited me a great deal. There are many more.

Safety is important, but I worry about how many autistic kids these days are being provided so much safety there’s no room to learn a lot of important stuff in a way that they can learn it. Certainly it was not safe for me to go all over the city on my own, certainly it was not safe to go on BBSes on my own, but both of these things, I am convinced, were important parts of my development of communication and understanding. It seems like there’s a big drive to regulate what we learn and what hazards we are and are not exposed to, and something vital might slip through the cracks of this safety. I’m not advocating sink-or-swim here — I’ve sunk too much to be that naive — but things happen in uncontrolled situations that are impossible in controlled ones.

If anyone else has experiences of learning important stuff in totally unsafe ways, I’m curious to hear it. It seems like the most important learning experiences of my life were also the least controlled and most dangerous. I’m not sure if I’d have figured out the function of back-and-forth written language until much later, if I’d been kept too safe.

The dangers of assuming things about norms. (Sorry, another asthma post.)

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This post is far more medical and far less political than what I wanted to post, but today is the first day I’ve been able to not think about breathing for any appreciable stretch of time, and that’s still most of the day spent figuring out breathing-related stuff.

I had known for awhile something was screwy about the way the more asthma-clueless members of the medical profession approached me when I was having a bad asthma attack. I could be sitting there and only able to fill up my lungs part of the way (and not much of the way), and they would be sitting there telling me I was fine, my lungs were clear and full, and nothing at all was the matter.

During the mess this week, one of my doctors prescribed a peak flow meter. It measures the strength of your ability to blow air, and therefore potentially various things about your airway. I got some peak-flow tracking software to go with it while I waited for my allergist and pulmonologist appointments. Might as well have some information to give them.

The way it works is there’s a certain level that’s your best possible flow, and then to measure the severity of what’s happening to you, things are divided into zones, usually a mild zone of 80-100%, moderate 50-80%, and severe 0-50%. The little booklet I was given on the topic, had said to make your baseline your “personal best” (when you had no symptoms the highest reading you could possibly get), and have that be 100%. And then it gave some average norms and such based on age, height, and physical sex.

You’re supposed to base it on when you’re symptom-free, but I wasn’t symptom-free, so I was trying to use the norm charts. The norm for my age, height, and physical sex listed in the chart would be somewhere around 465, which would mean that mild would be 372-465, moderate would be 232-372, and severe would be 0-232. I noted this and started using the peak flow meter.

Disturbingly, I found that even when I was having what I would consider moderate to severe asthma symptoms — as in sometimes emergency-room-grade problems, times when it took all the physical effort I had to keep my chest going up and down more than barely, and so forth — I was getting readings between 250 and 450, as in mild to moderate problems. And occasional readings that were too high for any of the female scores and I was starting to chalk them up to error. I started thinking all kinds of weird things, like what if this device is useless, what if it’s meaningless, does this mean this isn’t really asthma if my peak flow is so good even when I feel so awful, so then what the hell is it, maybe I really am doing okay, maybe I ought to run around a lot and forget all this crap about being short of breath, and so on and so on and so forth.

Eventually I started actually inputting all this crap into the tracking software, and was disturbed to find that I was in the green (mild) zone practically all the time even when I could barely cross the room without getting winded. I felt like crap marking off things like moderate or severe breathing problems next to an entry for something that according to the chart I had on hand was mild to moderate.

And then I got permission to change the dosage of the Prednisone I was being prescribed, so there’d be less of it but spread out more over the day. (I’d thought this necessary from near the beginning after seeing how short-acting it was, but nobody else had, and everyone else except those who actually spent time with me were saying that what was happening wasn’t severe enough to warrant that, and I’m not the expert here, supposedly.)

Anyway, as things started to actually kick in more and more, I started getting some very interesting readings.

600. 650. 700. 710. 770.

peak flow chart

Oh.

Suddenly the things on the charts started falling into the appropriate zones (green, yellow, and red, for mild, moderate, and severe) really fast. Suddenly 450 was 58% (yellow) instead of 96% (quite green), and 250, which had been right before an emergency room trip, was 32% (red, downright scary). Suddenly I started understanding what the people around me had been saying all this time about how horrible my breathing sounded, and how much I needed to get assistance. Suddenly I understood why I still felt fairly crappy at 600 and was still mildly wheezing at 710, and double-checked and triple-checked and was not doing anything to obstruct the peak flow meter’s proper working conditions when I hit 770.

All the charts I have looked up stop below 770, and the height they stop at tends to be the norm for a 6 foot 8 inch healthy young man. My “personal best” might even be above 770, although I was feeling incredibly clear (and the breath was the easiest I’d been taking in weeks) when I scored 770. This means that if I am breathing close to the norm for a 5 foot 2 inch 26-year-old woman (which, if you’re wondering, is exactly what I am), there’s already something going well into the “this isn’t a good thing going on here” zone.

Death from asthma isn’t necessarily about how much air you’re getting during an attack, at least not initially. It can happen because your lungs are working very hard, and tire out. Mine were starting to do that kind of thing. A lot. It was taking a lot of effort, even when they were capable of filling more than they were filling, to get them to fill to the capacity they had at any given moment. The default was to breathe incredibly shallowly unless working at it consciously, which I sometimes had to do to the point where I couldn’t think or type. The amount of work this takes is proportional to the way your own lungs normally work, not what the norm is. Yes, my airway might right now (as the Prednisone is wearing off) be more capable of spewing air out rapidly than most healthy people’s my age, but I’m already into the realm of having to think about breathing more than I should, and that’s where some of the danger is here. Breathing isn’t supposed to depend on conscious effort, no matter how much air you’re sucking in and blowing out — or how quickly — when you do it.

The good part about all this is I’m also starting to be able to document things. Like my flow dropping by 100 L/min just because I went downstairs in the elevator to briefly take my dog outside for five minutes with my face covered pretty well against the cold, and the fact that even minimal exercise is doing this to me at the moment, even before I feel it in my lungs. And like the fact that when it feels to me like something pretty serious is going on — especially with my generally poor body awareness — something serious is going on. And that my mother’s comments that I’m the sort of person she could have made training videos off of, and that if I say something’s wrong, something’s always wrong, are not just maternal pride of some sort. All the numbers at this point correspond roughly to my gut, and some of them are more sensitive than my gut (which is useful).

And hopefully I’ll have that documentation around whenever I see the new specialists. I apologize for a really long post that’s more medical than political, but after seeing numerous doctors who didn’t know these things, and who told me the opposite of a lot of these things, and who insisted they knew better than I did what was going on in my body, I’d like people to know that these things are actually real and that assumptions based on some kind of statistical norm can be really, really, really dangerous. I’m currently at what was my best a few days ago, and this still isn’t good at all. Which is kind of scary when I remember both what the worst felt like (including being unable to get to sleep because I’d stop breathing entirely whenever I stopped thinking about breathing) and what I was told about the worst (which was that, even if I was actively fighting for air and could not stop thinking about it for a second, it didn’t matter because my oxygen readings appeared normal so I was in no actual danger). People really ought to know how many doctors don’t know a thing about asthma, including where the signs are beyond wheezing or the dangers beyond oxygen-meter levels.

By the way, the cab driver who last drove me to the emergency room had a heart attack in the past and had ongoing heart problems. The doctors at that lovely hospital I went to, told him that unless he had another heart attack, they wouldn’t do anything for him (especially since he can’t afford heart medicine). He asked them “What if it’s my last heart attack?” They said, “Then you don’t have to worry about a thing.”

And on the off chance there’s any doctors reading this, a quote or paraphrase from my mother, a retired respiratory therapist (and yeah it’s medical language but you get the point): An asthma patient complaining of respiratory distress is as serious as a heart patient complaining of chest pain and should never be disregarded or taken lightly.

If I’m not writing a lot lately.

Standard

I’m not supposed to be awake right now but I’m having trouble sitting still, or sleeping, or anything, because I’ve been given Prednisone and Decatron and my mind is not working right.

I’ve been in an asthma crisis for a couple days now. Two trips to the emergency room. The first time we got good people. The second time we got awful people. (As in, people who didn’t know some very basic information about how asthma works, but who were determined not to show it. My mother — who was a respiratory therapist — told us later that this is what some medical professionals do when they don’t want to admit not knowing something, is they pile on the arrogance and condescension and bullshit and hope that substitutes for knowledge. Of course, when I suggested that even a non-doctor such as a respiratory therapist would be a better thing than the doctor I had, the nurse pretty much claimed that respiratory therapists only get two years of education, after which I pointed out that that’s two years of formal education and often decades of constant working with lungs and only lungs, both of which are more than most doctors get.) We had to get a second doctor in there to even get someone who had a clue that for the situation I was in I needed a steroid and not yet another bronchodilator.

I probably should be in a hospital until this is over, but what happened tonight was roughly the following: After already having taken two doses of Prednisone since starting Prednisone treatment, I started making a really scary noise (that I can’t really describe, but that is really awful) that Laura said sounded like my airway was closing. I took more Albuterol than is technically advisable, in order to get me well enough to go to the ER in something other than an ambulance. When I got there, I of course sounded great with all that Albuterol in my system, and they decided there wasn’t actually a problem. (What I wanted was to be kept until the Prednisone actually took a longer-term effect and got me stabilized enough so that I wouldn’t be bouncing in and out of the ER all the time.) Actually they didn’t listen to a word we said pretty much, they sounded as if they were speaking off a script and nothing we said could make them deviate it, and certainly nothing actually in medical textbooks or anything would make them deviate from it. (He even pulled as far as I know a random number out of his ass to say how long Prednisone takes to work (after I said how long it took to work for me and how long it worked for), in order to insist that I wasn’t giving accurate information, and then the second doctor told me (without hearing this) the exact amount of time it takes to work usually, which was the time I’d said in the first place. He was utterly confused when I repeated the first doctor’s numbers at him.)

(They didn’t seem to get that given that I don’t encounter many asthma triggers in a sterile hospital environment, I wasn’t going to go into a nasty asthma attack on the spot, whereas at home there are many triggers, etc. Actually, they didn’t seem to get much of anything, it was an astounding case of practically an entire ER having an attitude problem — like they were nasty to us from the moment we got there for no apparent reason.)

The second doctor had more of a clue and gave me a longer-acting steroid and sent me home.

And of course I started having more asthma attacks the moment I hit the cold air outside.

So I’m back home and the next trick is keeping me breathing well until I can call my real doctor in a couple hours and see if I can get something more productive going on.

But these steroids are messing with my sleep so much (even if they’re keeping me breathing) that I’m not sure I’m going to be coherent by the time I get to talking to a doctor. I’m already at a scary level of sleep deprivation and I’m not showing any sign of sleeping. And I can feel bits of my mind just not working while other bits are going high-speed. I am afraid that by the time I get to a doctor I will be unable to type anything. (And that the sleep I am losing will not help, but I can’t figure out how to sleep nonetheless.)

The good thing is that my mother, who did do the two years of formal education then decades of experience with lungs (unlike the doctor, nurse, or triage nurse there, all of whom rely on such unreliable things as pulse oximeters), told me all kinds of things to do, that none of these doctors would have even come close to knowing. Things even like what position of my arms and torso will ease my chest muscles the most while sleeping so that I can breathe with minimal effort (my breathing has just stopped several times recently while I was trying to fall asleep), and just all kinds of details as to how to get through the night tonight, as well as some good guesses as to exactly which parts of my lungs are screwed up. Contrast this to a doctor who had never even heard of the paradoxical effects Albuterol could sometimes cause (and seemed to believe that by bringing up the possiblity, Laura was doing something more like suggesting that goats were flying out of his ears), let alone even begin to think he should figure out whether this or something else was what was happening to me (since my breathing seems to get worse in some respects after I use the inhaler, and it could either be because the inhaler’s working or because the inhaler’s doing something really dangerous, and it’s kind of useful to figure things like that out). I’ll take the “not trained enough” RT any day.

And also, if I seem to not be myself lately, Prednisone is really screwing with my head.

(Also a person wrote to me about a very serious problem going on with their child’s school. I’ve been trying to figure out how and when to reply for a long time and never did. I think right now it’s safe to say I’m not going to be able to, and I hope you’ve found someone more equipped to answer, and I’m really sorry about that.)