Monthly Archives: February 2010

Another (misinformed medical opinion) bites the dust.

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Ten years ago, I went to the doctor. One of the things I mentioned, figuring it was just a really annoying manifestation of the movement disorder that’d recently been identified, was “I keep forgetting how to urinate.”

The doctor snapped back at me, in a tone that took me and my mother aback, “Don’t be silly. Urination isn’t voluntary.”

Unsurprisingly, I kept getting urinary tract infections. At one point my doctor actually yelled at me for not being able to give a big enough sample, even though it was bad enough at that point for there to be blood in my urine, among other signs of a nasty infection.

I get things like that a lot. Both developmentally disabled people and people who’ve been in the psych system get things like that a lot. It’s assumed that we don’t know what we are talking about, or are imagining things. So I spent a long time trying to force, cajole, etc., urine to leave my body. The good part was I had less (but, since it was intermittent, not no) trouble with incontinence. The bad part was that this was worse.

But even though I get a lot of discrimination, I also get things like the following a lot:

Nearly ten years (and a zillion UTIs) later, a nurse watched me struggle for half an hour to give a urine sample despite a full bladder and no infections. She asked me if that was common. I replied (with a huge bunch of nervousness) that it had been going on ten years and only getting worse, but that the only time I told a doctor he’d told me it was impossible. The nurse insisted on getting a doctor to refer me to a urologist.

After a bunch of really nasty tests, the urologist told me that he had located the problem. There was a lot of spasticity in my urethra, the place that urine leaves the bladder. So it was hard to get urine through it when a spasm was going on. This was fairly unsurprising because in the course of other testing people had been finding spasticity in a lot of other muscles.

So I did several months worth of a weird electronic training routine to learn how to isolate and relax that muscle. With only partial success. So the next step is trying an implant that will send signals to the muscle in question telling it to relax. It’s only minor surgery, and much as I loathe surgery I look forward to this one every time I sit on the toilet until my feet go numb.

It seems like every single time a doctor dismisses what I have to say, a later doctor will find the real cause of the problem with the right testing or exam. In fact, given my fear of doctors, I seem to have a far better track record this way than usual. They don’t always find the first thing that comes to mind, and sometimes they find something while looking for something else. One time they had to do a long methodical series of tests before finally finding something totally unexpected (a rare form of COPD (caused by, hmm, medical neglect) when their best guess had been aspirated reflux). But they always seem to find something, given enough time. Because, despite what the prejudices of some doctors might say, I never bother a doctor over nothing.

You would think this kind of track record would increase the confidence of the ones who blow me off, but there is always someone ready to believe that people who look like me can’t possibly be right if we say something’s wrong. Because apparently there aren’t enough disabled people who die or become seriously ill because of people either dismissing our observations or just dismissing our worth as human beings.

Official Papers

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I used to have a page up on this site showing several of my official diagnostic papers, dating back to my early teens at the earliest. I put it up in response to intimidation, or rather to someone saying they’d stop the intimidation if I furnished proof that I was autistic. I furnished that proof, received more promises to stop the intimidation. And then found out the promises were lies. And then the intimidation only intensified.

As I calmed down, I began remembering that the next person who faced such intimidation and bullying might not have the option to present papers. Their papers might have been lost in childhood, or they might be self-identified as autistic with no written documentation at all. And it’s not like I’m the sort of person who thinks that professionals know better than we do who we are. Even though I was professionally diagnosed, I had to go through the same learning process self-identified autistic people go through, before autism meant more than a random word to me. But even though I was aware of this, inertia reigned supreme, and I didn’t remove the page with the papers on it.

But someone just reminded me of the bad precedent I might be setting. So I have removed that page from this site and left this one in its place. I don’t want to marginalize people without papers any more than they already are. This is also my apology to anyone negatively affected by my putting those papers up.

Some advice to anyone who ends up with really heavy-duty bullying and pressure to prove to a stranger on the Internet that you’re autistic: Don’t provide papers. If people are bullying you in this manner, it won’t change their minds. They may even be trying to get personal information out of you that they can use against you in some way. And believe me you don’t want to find out the hard way how unethical Internet bullies can become. Don’t be as naive as I was, you or your loved ones may end up paying for that naïveté. And remember that if they get you to reveal information about yourself, the next person (and there is always is a next person, there have been many before you) may be held to the same standards.

So that’s why that page is gone. I don’t want to make it harder for the next person. I just wish I didn’t know there would be a next person. But there will. This kind of bullying has existed in the autism community for at least the past 15-20 years, and is usually directed at a self-advocate who has made some kind of a difference for autistic people. (And is a subtype of a kind of pressure that has been put on ‘uppity’ members of marginalized groups from time immemorial.) And the next person shouldn’t be coerced into making the same mistakes I did.

 

The Summer Thing

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I want to start out by explaining what this is, and what this is not. Blog carnivals tend to bring in unfamiliar readers. People tend to misunderstand topics like this one. So here goes:

I write about things like this mostly because nobody was talking about these things when they happened to me. I want people who are going through similar things, and those around them, to have a frame of reference I never had. I also want to end the taboo that says only bad disabled people talk about our bodies and the things that have happened to us. The one that says all such discussions must be a plea for pity or attention. So if you get only one thing straight, it’s that this isn’t about getting sympathy, it’s about describing a piece of reality.

This is for the disability blog carnival. The theme is relationships. It might take awhile to explain how it fits into this theme, but I’ll get there in the end.

I have always experienced the world in ways that mesh up with neither language nor most people around me.

Body perception is one of those things. Internal sensations feel external. My brain also doesn’t prioritize them in the usual way. Once, when on neuroleptic drugs that only amplify this problem, this happened:

I was pouring water from a large bucket, onto an electric fence. I slowly realized something was different — no, bad — no, very bad — and hang on, it seems to be in the vicinity. And colored bright white, and… oh yeah, painful, and pain has something to do with my body (???), yeah it does, but where on my body, …, …, …, …, …, arm. My arm is a part of me. Let me turn my eyes on. Now look at my arm. Stuff on my arm. Stuff… water. Where is the water going? Fence. Electric… oh. Better stop this. Where’s the arm again? Got to move it. (Wait for those instructions to mosey down into my arm.) There. Phew.

But even without neuroleptics, connections like that can take even longer. I was lucky I was old enough to make such connections on my own at that point.
 
That level of detachment from one’s body can happen in autistic people and can happen as a neurological response to a kind of pain that’s existed as far back as I can remember feeling my body at all. So it’s hard to say if it’s one or both that caused that kind of thing.

So I am trying to give enough background information that when I start describing certain kinds of childhood experiences it will make sense. It’s hard because as usual the English language wasn’t built for the sorts of things I’m trying to do to it.

When I was a kid, I sometimes considered myself bad. Other kids didn’t scream, cry (the noisy out of control kind), or lash out when cornered by bullies. I felt like I was always in trouble. Even bullies got higher grades (and even sometimes awards) in citizenship. There was something about this that had little to do with social skills, though. I had no words for it, but in my head it was always connected to summer.

I experienced it as external. The sky existed, the black stuff on the ground existed, and the summer thing existed. Like the sky and the black stuff on the ground, the summer thing covered a wide area. But unlike them, it truly seemed to be everywhere.

It got a little less if I pressed body parts into cold, smooth surfaces. It got a little more if I was stressed out or having to process more information. But otherwise, the summer thing changed in ways I could never predict or explain. The worse the summer thing was, the more “bad” I was, and the less I could relate to people (including myself).

When the summer thing got bad enough, all I could do was cry or scream, or sometimes just sit there encased by it. My dad told me later that I used to scream or cry for no reason. My dad didn’t know about the summer thing.

Nearly always, I felt like I was cut in half. Half of me was in the clutches of the summer thing. The other half floated somewhere distant and numb. I tried my best to increase the numbness however I could. Half numb was better than none of me numb. I spent a lot of my “free” time finding ways to distance myself from the summer thing. When I had to use the most effective of those techniques in public, people accused me of having a creepy thousand-yard stare.

Not surprisingly, when I ended up in the hands of psych professionals they saw “severe dissociation”. They spent lots of time trying to connect it to physical abuse and molestation, but those things were barely a blip on my radar compared to the summer thing. Eventually they decided I was just biologically set up to dissociate easily and that I used it to deal with boredom. Even though in reality I was almost never bored and almost always the opposite — overstimulated and overworked.

The funny thing is that pain psychologists teach patients with severe pain the same techniques I discovered on my own. But when they teach it they call it adaptive. Every time I go for a nerve block, they have someone there to walk me through the same techniques my body discovered before I knew I had a body. Because severe pain is exactly what the summer thing is, and professionals consider dissociation under those circumstances more adaptive than pathological.

When I was 15, the doctors put me on Neurontin for seizures. This made the summer thing fade a fair bit. Either I couldn’t describe it well, or they didn’t know Neurontin treats several kinds of nerve pain. Because they told me if something went away on Neurontin it must be a seizure.

When I got off Neurontin, the summer thing came back and pretty much stuck around until my early twenties. At that point I’d spent three months mostly writhing around on the couch before a friend said “This is how pain makes a body act, go to a doctor.”. I went to the doctor and she put me on Neurontin pretty fast, which helped both the pain and the seizures. I’m now on a Lyrica/Trileptal combination that deals with the summer thing, the seizures, and trigeminal neuralgia all at once. But even once I first got on meds, the spot that had formerly occupied “1” on the 1-10 pain scale now occupied a “6”. Which is a huge change.

It was only after treatment I could begin to either describe the summer thing itself, or differentiate lots of smaller pains that it blocked and distorted. Synesthetically it’s dots and streaks of brown, orange, yellow, and white. And what it feels like? Burning, both burning hot and burning cold (like I’ve been told liquid nitrogen feels like). And prickly. And like my skin has been scraped raw, gone over with sandpaper, and then sunburned. Hence “summer”. And like… if I had heartburn, for instance, instead of feeling just the heartburn in one spot, I would feel like someone had put an iron on my entire upper back that was red-hot and ice-cold at once. I only got treated for a lot of other lifelong conditions after the summer thing had been treated enough to feel them.

From what I’ve heard, even people who never had pain or communication problems before developing something like this can find it hard to describe. They’ll end up describing limitations on their functioning, or use torture metaphors, instead of describing pain. Because pain that they are used to feels like a whole nother category than this. It just doesn’t feel like it ought to have the same word. So maybe as a person who never knew life without it and who had communication problems I can be excused for not even knowing I should describe it, let alone knowing how, until that first dose of Neurontin made it lessen.

What’s the actual name for the summer thing? From my descriptions, people have told me it’s some kind of neuropathic (nerve-related) pain. But whether it’s originating in my brain or somewhere further down the line isn’t something they can tell with current tests. And since it began so long ago, nobody knows if it’s a function of an injury, or the way my brain or nerves happened to grow, or some early neurological response to overload, or what. It’s also important to realize it’s not gone. It’s just less than it used to be.

Now there’s enough background laid out that I can talk about how this thing has affected relationships, which is the whole point of this blog entry in the first place.

The first relationship the summer thing interfered with is my relationship with myself. On both a psychological and physical level. How do you form a relationship with yourself when the more connected you get the more it hurts? I spent most of my time trying to edge as far away from myself as possible. One of my early memories involves trying to imagine the world without me in it, and getting aggravated that no matter what I imagined I was always the one imagining it. If I got anywhere near my body or mind I would get overwhelmed by this blast of pain and retreat if at all possible.

If I picked up a Lego block, my hand felt a burning, scraping afterimage for hours. Touch from humans created a different afterimage. Sometimes I would put up with these things and sometimes I wouldn’t but it was never without a price.

When pain gets severe enough, it does weird things to your thoughts and feelings. A lot of the anger and fear that made me “bad”, stemmed from the summer thing. The only way I could get calm was by identifying with my numb side. And the problem with the numbness was that it went away the moment I felt into my body to either move it or interpret what was coming through its senses.

So imagine I am lying curled up in bed, losing myself in the dark brown bedrail. Then someone comes in and wants a response. If it’s a good day, I may be able to imagine the response without any unpleasant feelings attached. But even then, most of the time I ended up snapping at the person for no good reason they can see, and for no reason that I can understand. Predict, yes, but understand, no. I often did an aggravated hiss my mom called “lizard breath”, but I wasn’t in much position to understand or explain the irritability. (And pathologized as I was sometimes, I shudder to think what a modern therapist would have diagnosed the irritability as part of, or treated it with. I have some good guesses.)

So I end up becoming a really grouchy person with no idea how to avoid being grouchy, and this becomes one more thing to hate about myself. As usual at that point, I had no idea how other people avoided snapping, stomping, hissing, growling, and generally being disagreeable. And knowing I was. And not knowing why, or how to avoid it.

I also learned an awful kind of strength. I was always expected to do things people in that level of pain don’t normally do. And even if I did not learn to do those things, I learned to exceed the expectations of someone in that kind of pain. I didn’t think I had a choice. When I failed, I beat myself up harder than anyone. I learned to push myself until collapse.

To this day, this makes it hard to admit when something is wrong, pain or otherwise. The stuff I do admit to is the tip of a large iceberg. I try to talk about these things because I believe it is very wrong to teach people it’s wrong to discuss them. But I am fighting the training that taught me to press on no matter the difficulty. Because the result of pressing on is almost always dangerous, sometimes deadly. Even though I know this, it is almost always other people who threaten and cajole and drag me to the doctor or hospital when something is wrong. Because growing up this way has also messed up my relationship to my health.

The summer thing also sometimes has made me seem weak, not strong. Those times when I could do nothing other than curl up and cry, or hit myself, or zone out as far as I could. Try explaining that when you don’t know what’s going on, and don’t know fully how to connect words to experiences. That one affects relationships by convincing people you are weak-willed or bad somehow. And so do you because you don’t understand the forces behind these problems. Especially when it’s always been there so it’s just scenery.

“Answer me. Why is she lying there on the ground? I’m serious. What are you two up to? I need an explanation,”

(My body had taken over and I was pressing my face and arms into the cold concrete. I kept hearing these high pitched sounds that turned out to be my own voice sort of wailing. And I wouldn’t have had an explanation that would satisfy those guys even on my best day. And how was the person with me supposed to handle always being called upon to explain me? He reads this blog sometimes, so at least he can find out.)

Years after that, I was in a similar situation and eventually asked a friend why my body kept acting like it was in pain. She responded that my body was in fact in pain, and that the reason I didn’t understand my own reactions was the dissociation that goes with severe chronic pain. And that nobody who wasn’t in pain would ask that question. Wish I had had people like that around as a kid.

This of course affected sexual relationships as well. Touch in sexual contexts can temporarily diminish the pain a bit (and a lot of other things, according to a book I’ve read on the science of sex), but only to a point. Try to push anything into the usual orifice, and my reaction is more like a scared wild animal than a sex partner. As my only sex partner found out the hard way.

It’s affected my relationship to any activity I do with my hands. Many activities I used to think I just didn’t like, were things that made my hands feel scrapey for the whole day afterward. Lego blocks are only the first of a long list of things that seemed great until I touched them. It’s why I never use my Zometool set unless company wants to, why I finally got rid of the things.

The summer thing has also created a certain kind of distance in all my relationships. When I am in the part of myself that feels more pain, the pain fills up my head and creates a wall between me and whoever I relate to. When I am in the part of myself that floats at a distance, the floating creates its own distance. This effect has lessened with medication, but it’s still there in some amount no matter what is going on.

Many of the effects on my life I have talked about, are things that other conditions have affected as well. It’s impossible to know which has contributed how much to what, and I have not even tried to work it out. And while I cam sit here and list off things it’s affected, I don’t generally sit around feeling morbid or morose or melodramatic about it. Everyone’s life has constraints on it, mine are just not the same as the usual ones. It doesn’t make me pathetic or pitiful. It just exists and always has. I don’t have to like it, but life’s too short to wallow in misery about it, so don’t get me wrong about my reasons for writing about it.

When I think of relationships the summer thing has affected, it’s hard to think of anything it hasn’t affected. It’s affected my relationships to my mind, my body, my emotions, my family, my friends, people in general, anything or anyone at all in my environment. It’s made it so that my two main vantage points in life have been either scraped raw and affected painfully by any sensation, or else floating numb but too far distanced for direct interaction. It’s a good example of how a condition that isn’t technically supposed to be pervasive, can affect just about every conceivable part of my life. Even though I take every effort possible to diminish this kind of pain, like all events that have left such an intense mark on my past it is something that I have a hard time knowing who I would be now if I hadn’t grown up with it. Life is too complicated to know things like that, and it doesn’t make much sense to ponder an unreality that much.

So that is more of the history of the summer thing than I have ever written. I have gone into pieces of it here and there, but never gotten as much detail as I have just now. And it reminds me all over again how complicated life is, because there is no way to write about everything on even a topic so narrow as nearly thirty years of a very particular condition, let alone any other topic a person might write about. Experience always has more depth than words can (if they are used in even the best way) just point at, even a few seconds of experience. Not that I ever really forget this, but tasks like this one bring it home. And finding anyone with similar experiences (not just to this, but to anything) can create a level of intense resonance that renders words unnecessary after a point. Having almost no such resonance until I was an adult, is why I bother with the task of pointing at experiences in words, and working for years just to get some of them out at all — so that anyone with similar experiences might find such kinds of resonance (or find the words and tools to express it to others), and anyone who knows anyone with such experiences can understand them a bit better. And it works even though no two people can have the exact same experiences. And things like this are how I have formed some of my most rewarding relationships despite the distancing effect of the summer thing. It’s like even if pain sometimes forms a wall, this kind of resonance makes it possible to perceive the other person without having to scale the wall itself. And having those few but invaluable relationships gives me the will to scale that wall in relationships where there is no such shortcut.

Aspificating snobbery over the DSM all over again

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I have seen a lot of “aspies” whining lately about the proposed changes in the DSM. Not productive critique of the new criteria, the medicalization of autistic lives, or the fact that the things most autistic people have truly in common have been left out of the criteria while peripheral things nonautistic people want to fix are spotlighted. No, nothing that useful. Just out and out whining.

“I don’t want to be associated with that other kind of autistic people,” goes the standard whine line. “You know… Those Ones.” The crazy drooling retarded low functioning diaper wearing nonverbal ones who can’t take care of themselves and need to be on welfare. Which one of those or many other pejorative categories depends on the individual variation in the snobbery. (What is it? Snob not otherwise specified? Not like those other snobs.)

I’ve written a lot of posts on this blog about aspification and snobbery of this very sort. It’s been sitting around in the autistic community for a long time. And now it’s coming out of the woodwork. I might link some of those posts once I get to my main computer, just for a refresher. But this is some of the most blatantly hateful and snobbish stuff I’ve seen in a while.

What I wrote to someone earlier:

And some of us might rightly find it insulting to be referred to as the ones that others had to be oh-so-tragically “lumped in with” (you know, “crazy”, “low functioning”, “retarded”, “autistic”, or other categories that people seem to do their darndest to distance themselves from).  Like we have disability cooties or something from the way some people behave, and like having the medical people put us in the same category as our “betters” is such a terrible threat (and like it changes anything about who any of us really are).

And it’s true. It’s insulting. It’s insulting to me. It’s insulting to anyone who bears the characteristics that any individual aspified snob might throw at us. And it ought to be insulting to all of those who don’t have disability cooties At the moment either. Anyone with any decency should be appalled that people are upset, not over anything that is really going to harm autistic people as a whole, but at the idea of being thrown in with the rest of us.

It’s especially interesting to see that one of the people most widely quoted as divorcing himself from people who wear adult diapers (like me) is someone who has never seemed to hesitate to use my writing (both with and without permission) but apparently can’t stand the thought of sharing a label with people whose underwear differs from his in certain key aspects, or with people who self-injure. I guess nobody had better tell Carley that lots of people diagnosed with Asperger’s are incontinent and/or have severe self-injury. He might want to create a divide within Asperger’s to wall himself off from such people in.

Funny but I have never minded as a person who has had both such characteristics, sharing an autism label with people without those characteristics. Anyone who delves deep enough into either science or personal experience of autistic people will find that the characteristics related to perception and cognition are the ties that bind us together, regardless of the more superficial characteristics that people divide us up by. Of the autistic people who seem to have the most similar experiences on those deep deep levels to mine, include people diagnosed as high or low functioning, Asperger and autism and PDD-NOS, with IQ scores from 20 to 160. The same can be said of those who most differ from me. The reason is the diagnostic categories are neither deep nor penetrating nor accurate. They divide those with the most in common and connect those with barely anything in common in such haphazard ways it should be obvious that they are falsity of the worst kind. And the same goes when people pick these singular outward traits and hold them up as the ultimate dividing line. Like many autistics I have been saying this since I first got a good hard look at what the categories meant. And surely the deep down bones-level traits are those that matter.

People often get the idea from the media that I prefer to be called low functioning. I don’t. I don’t think that such labels can ever capture the intricate and beautiful complexity that exists within all of us. Nobody should be reduced to such a term even when they do the harm to themself by self-applying such terms. But as a person who has received that label from several doctors without even knowing it, I will stand up and resist the way it is used, and will tell people that when they speak of what they want to do to people with that label then they mean me since I have worn that label. (It is not for them to say they make an exception for me, because when people with that label are mistreated I am mistreated because the label is forced upon me whether some random guy likes it or not. It is forced on me by doctors and by people who yell out of car windows alike and is not so easily repelled.). Such things do not fit into soundbites.

Anyway just let it be known that I totally and completely divorce myself from any person or community who shuns people like me or like any other random autistic person who doesn’t meet the standards of aspified perfection. This is not the way to celebrate human diversity and it is not the way to gain status for yourselves by throwing the rest of us to the wolves. We may share an official diagnostic category (in places where the DSM is recognized), people may finally be forced to acknowledge the sameness that many of us have believed in all along, but (thank God) we don’t all share such a terribly harmful set of ethics. And thankfully it’s okay to reject crappy ethics even if it’s not okay to reject people for having unsuitably proper characteristics.   

(“Better? Fuck better. We don’t exist for the beautiful people of the world, Ted. We’re there for the oddball. The rebel. The outcast. The geek.” A line from the movie “The Specials” that just came to mind. As it always does when I am confronted with outrageous elitism.)

Anyway as much as this is a rant against snobbery it is also a call to remember what is important. Look to that beautiful shifting central set of attributes that make us alike and different. Stop using the periphery to divide us. And just as we remember the central attributes that matter, we need to look to the central values that bring us together to assert that we are of equal value no matter how we seem to differ, that we all matter and are valuable, in a deep down way not a surface feelgood way. Because we need those roots to sustain us while other people are fleeing and pointing fingers at those they don’t want to be lumped in with. And because it’s too easy to get blown away by the ethical storms that surround situations like these.

There is so much beauty in those deep levels of who we are, and it’s so easy to forget it when people are going on at great length about how inappropriate it is to see our connections when we could be dividing on the basis of things as surface level as the fabric of our underwear or our IQ points. Yes those things can make a huge difference in how we are treated and what lives we lead, but isn’t that fact something we are trying to change, rather than intensify the oppression?

autistics.org needs donations badly

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EDITED TO ADD: Go to Paypal directly if it tries to make you donate a minimum amount or something like that. Go to Paypal directly, and make your donation to webmaster@autistics.org

We are (it is s slightly time-consuming process) getting rid of our presence in Second Life because that has been sucking money out of us at alarming rates. (I am saying this because we are no longer using money on that, just on the site, and yet we still need money.)

We have almost nothing right now money-wise. And we’re mostly maintained by two people on disability, so personally we have nothing to pay it with. We know times are bad right now but we really need the site not to go down. So can anyone with the means to donate, please donate? The way to donate is shown on the front page of http://www.autistics.org/ (SEE EDIT AT TOP OF POST)

Our server costs are $55/month, which is dirt cheap for what we’re running on it (and we are only barely able to avoid hitting our maximum on that). Our domain costs are $150-180/year at GoDaddy. There are stray server costs of around $50-100 a year (but not predictable, so sometimes less sometimes more) that happen whenever things crash or get hacked and we have to pay the server people to reset the system. ZoneEdit, which handles most of our DNS, is about $60/year.

Then there are random, unpredictable costs, which we always try to keep to the bare minimum (but which if bad events coincide with each other can run up costs like $500, and sometimes Murphy’s law strikes). Sometimes there’s software we need to license. One time, all of the main webmaster’s several computers died and we had to find her a super-cheap computer at the local thrift store. One time, she had to stay up for several days working on the server (with no time or energy to cook) and after consulting with the rest of us, charged one pizza and one bottle of highly caffeinated soda to the account.

Some other information:

autistics.org is a project, not just a website, and it spans several websites, some subdomains and some actually different websites, that are all on our server. Among them are the Real Voices of Autism (a social networking site for autistic people), this blog, a message board, and a lot of (both historical and newer — autistics.org is one of the oldest websites in the autistic community, being 12 years old) stuff on the autistics.org site. We’re also switching the main site to Drupal, which will allow us to update it much more frequently than we currently can. (Which is why the main autistics.org page has lagged behind a bit from many of the other things going on.) The webpage that we’re working on the dynamic Drupal-based site with, is http://main.autistics.org, which will eventually become the main autistics.org site once we get it running. That’s why the front page of the website shows very little updating.

That all means that we can’t just plop ourselves onto a shared hosting provider, like most of the “lower-cost” alternatives that people are always suggesting to us are. We need our own server, and it needs to be a high-bandwidth one. We still almost run into the memory limit on the cheapest server we could find. And even if someone could find us a cheaper server, it would mean that the main webmaster would have to stay up for days on end trying to reconfigure all of our sites to work properly on the new server.

(Which is a huge problem considering that the main webmaster is currently pretty incapacitated, totally unpaid, and nobody ever volunteers to do that kind of work. Not that we don’t want volunteers. We badly need volunteers who are able to handle the demands of an entire server running high-traffic websites. Because we’re only able to really handle it when things go right. We’re technically about four people, usually one or two people, running a very large project. We’re not a business, or an organization, or a corporation, and we don’t have that kind of resources. We need help in terms of money and we need help in terms of running the server, both of those are important.)

I’d also like to note that lots of people, including people with far more money than we have, use the websites on our server on a regular basis. It wouldn’t be a high-traffic website otherwise. It’d be nice if some of the people (even lurkers) who did have that money, could help us out here.

Kittylashes!

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I’ve been wanting to get pictures like this for a long time.

Fey's face in profile, while she is on her brown fuzzy bed.

Either click on the above to see the original size (very large file), or look at the closeup in the next image, to see the kittylashes:

A closeup to the last image of Fey's face, showing lots of detail in her fur, and showing her eyelashes.

Fey's face in profile, while she is on her brown fuzzy bed.

Either click on the above to see the original size (very large file), or look at the closeup in the next image, to see the kittylashes:

A closeup to the last image of Fey's face, showing lots of detail in her fur, and showing her eyelashes.

A sort-of-closeup shot of Fey in her brown fuzzy bed.  You can see the dome of her eyeball.

A shot of Fey in her bed that's far enough away that you can see the entire bed, which is a big brown fuzzy circle, with a cat lying down in the middle of it, causing a dent in the brown fuzzy stuff where the cat is.

I have wanted to show kittylashes for a long time, and finally got them on camera!