“Stop Wasting Taxpayer Money, Pop That Pill!”

It’s July 25 today. I at this point don’t yet have this as a traditional write-about-a-particular-topic day, but I could turn it into one starting now. Two years ago, after all, I started on my only daily psychiatric drug, Risperdal. I wrote about prescribing psychiatric drugs for environmental stress on my Dutch healthcare blog last year, but that blog died a slow death from the May/June computer crash, so I guess I’d take the theme over to here.

When I reread my posts from the time when I was on Risperdal, it strikes me that I registered symptoms, drug effects and side effects, doctor and staff hypotheses about the relation between these, without any consideration for the context in which all of this was occurring. It’s interesting to note that I wrote on July 27: My goodness, it’s July 27 and I’ve not done actual Nijmegen updating in ages! Remember, I was at the time in such stress from all that happened around my move to Nijmegen that I had to be put on an antipsychotic to prevent me from totally falling apart, and I wasn’t writing about Nijmegen.

I reread my posts in which I considered whether I’d betray my inner neurodiversity activist by going on an antipsychotic, and I decided it was fine to go on it if I had been able to make an informed decision. I criticized the doctor’s informing me, which was way better than any drug information I ever received from any doctor I’ve ever met since. I felt that, if most adult autistics on the Dutch autism forum didn’t experience the dramatic side effects APANA warns for, it probably wasn’t as bad a drug as Amanda Baggs et al. would want me to believe. I knew that “behavior control” wasn’t an appropriate reason for drugs, and I vowed to go off Risperdal the safe way as soon as possible if I started feeling too drugged to react to overload. But I wasn’t having too bad side effects, slight positive effects at first, and didn’t feel like I was chemically restrained. And off I went, to “that city down south” (one staff consistently asked whether I meant Mabella). And I was still stressed, and most tricks learned in treatment didn’t work, and all I knew to do about it in my new environment, was to take my pills.

Did I actually know, at the time, that this whole mission was ridiculous? My parents say I should’ve known. They refer to little things like too little mobility training (the most one can get) and one inaccessible college course, but there were a number of little things piling up at the time. There were big things as well – my inability to cope with having no-one available should I need help outside of fixed hours, for example. I am not sure whether I knew about these problems at the time. Probably I did to some extent, and so did the training home staff, but none of us could or would acknowledge them. And by July 25, what if I’d told the prescribing doctor, my treating nurse, or the training home staff: “This is a mission impossible that you guys sent me onto. I won’t look to Big Pharma to solve a problem it didn’t create.” Rather, I decided that my symptoms were bad enough to take meds for, the effects the doctor hoped Risperdal to have sounded like they could alleviate some of my symptoms, and my side effects would not be too bad.

Similarly, in late September, when I decided to quit Risperdal, I didn’t think of the reason I had to be on it. I quit because the drug wasn’t doing anything good for me anymore and I was still having slight side effects. Actually, when I was heading towards my November 2, 2007 crisis, I contemplated whether the whole thing could be belated withdrawal symptoms. One can never be completely sure, but I gather from the fact that the two psych residents who ever discussed the matter briefly with me, both tried to forget about it as soon as possible afterwards, that psychiatry has consented that this is unlikely.

Of course, the question remains, what would’ve happened if I had actually refused medication because this is not in line with consensual autism intervention at this time? I may not be up-to-date, but the last time I was reading scientific papers, the consensus was that psychiatric medications should only be used for autism if appropriate support doesn’t work and the person is still having significant problems. Unless “appropriate support” is meant to be ABA, this should sound like a pleasant song to neurodiversity activists. But not to funding agencies. And this is what I was wanting to write about today: an 1mg Risperdal tablet cost around E1.50 in 2007 (risperidone was still on patent then, I guess the generic may be cheaper). That is far cheaper than my psychiatric institution bed.

Of course, it is true that the drug wasn’t effective – I was still having extreme meltdowns – when I quit, so there is (most likely) no need to worry for me about the possibility that a E1.50 pill might just have saved the Dutch taxpayers some money that is now spent on my reso ward bed. But what if it did work like this? I sometimes wonder really why the people at my former ward didn’t just put some pills into me and discharge me after a week. Maybe they knew that there is no primary pharmacological treatment for people with my diagnosis. As I said, last time I looked this was true, but I see quite a few people on boards talking about drugs as if they are a primary treatment for Asperger’s Syndrome. For those who follow Baron-Cohen’s definition and consider depression to be a required part of Asperger’s – in which case I wouldn’t have it -, this may be true, but what about the many people I know who, indeed, go on antipsychotics to be able to “handle more”? My alarm bells go off big time when I read such posts, because my experience is that an antipsychotic didn’t help me with that and if it did, it’d probably be just by making me duller. But then again, we live in a time of economic crisis, when healthcare is not the thing taxpayers would like to spend their money on, especially if it’s someone else’s healthcare. So maybe one should look to the cheapest solution, whether that is the most effective or desirable one or not? In concreto, all pop your E1.50 pills and get out of your E200+ institution placements, guys. Not saying I agree with this, but I sometimes wonder.

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“Will I Ever Have a Boyfriend/Girlfriend?”

I generally avoid the “Friendship and Relationships” board on the main Dutch autism forum, and think I’ll pretty much ignore the “Love and Dating” board on WrongPlanet, too. The reason is that I get sick of autistics obsessing over the need to be in a romantic relationship, their inability to attract the gender of their liking, and the question whether they’ll ever have a boyfriend or girlfriend. Of course, since I have a boyfriend, you might say that I’m a fortunate exception and shouldn’t judge those unfortunate many who will stay alone for the rest of their lives. You could say that I cannot empathize with people who have made 10,000 failed attempts to attract the person they love so badly they could eat them if they got the chance – maybe that’s the reason they get rejected? Well, okay, I confess: I never took a single conscious step to get noticed by the person I had a crush on, so I have no experience of being rejected. I can imagine that rejection hurts. It hurts anyone, disabled or not. I can see that it hurts more to be rejected 10,000 times. And I know that autistics are statistically less likely to be in a relationship. But statistics aren’t black-and-white facts.

Most teenagers I used to know, the vast majority of which NT, at one point obsessed over the question whether they’d ever find love, and many wrote about this on teenage forums. I can therefore understand that autistics on autism forums would do the same. However, what I don’t understand is the need to always link one’s lack of a romantic relationship to one’s autism. It is very often implied that someone with autism/Asperger’s cannot possibly have a boyfriend or girlfriend, because their disability causes them to stay alone. However, in reality, whether you will be in a relationship or not – and if so, how long it will last, which is something most autistics-in-need-of-a-relationship don’t think about -, is determined by so many factors, and autism is just one of them. Maybe one’s attitude about one’s disability is another. And totally unrelated factors, like physical attractiveness, may also play a role.

I didn’t find my boyfriend on an obsessive hunt for the right guy. In fact, I wasn’t at all desperate for a boyfriend when I first met him. I wasn’t sure that I would or would not one day find a significant other – I just let it be as it comes. Of course, I won’t criticize people, autistic or NT, who come to dating sites in order to connect with a potential partner, or take other measures to hopefully get a match, but I’m pretty sure that an attitude like my-disability-means-no-one-wants-me certainly won’t help.

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Quick Calculator and QckTwit

To continue with my series of computer devotionals, I just installed a ten-year-old, still working, extremely user-friendly, little program, called Quick Calculator 1.01. I am sad that it has probably gone – at least, I haven’t been able to locate it online in forever -, but I am happy that I can still use it. It’s shareware and it is hard to cheat yourself out of registration after the 30-day free trial period. However, my father’s $10 are still worth it, since I just got mailed a registration code that I can use whenever I need to install the program. Of course, if I’d wanted to, I could’ve sent my code to everyone on the Internet who’d want it, and that is exactly why simple license registration has gone out of style. And so has license registration through use of an original installation CD, because these are too easy to copy. So I understand why Internet-based activation needs to happen – until some guys find out how to crack that -, but still it makes me smile to find that I have at least one piece of software that was neither free, nor locked with all kinds of crappy codes, and that I still use easily ten years after first buying it.

The calculator is extremely simple. That’s why I bought it, rather than using the graphics-based Windows calculator. I just tried that one out, too, just to be sure that it still won’t work with my screenreader, and, while it is possible to get in some input and get out some output, my Braille display won’t show the relationship between these – which I think is pretty essential for calculation.

When you open the program, all you see are an input field, an output field, a “Calculate” and an “Exit” button and two selection fields: one to select whether you want to use normal, scientific, engineer, hexadecimal or binary numbers, and one to choose whether you want angles to be measured in degrees, radials or gradients. I seldom need to do anything with angles, so haven’t yet figured out what to do with that function, and the different number systems just look funny to me, but they might just prove useful to some of you someday, in a sort of bizarre set of circumstances (thanks to Tom Lehrer for this entirely useless phrase that somehow popped up in my head). Anyway, if you don’t need these functions, you won’t stumble upon them without wanting to either. If you do need more advanced features, you’re out of luck, but then I guess you’d better get a graphing calculator somewhere and learn to direct a sighted assistant if you are blind. If the only reason you need a calculator is to do occasional general household calculations,t his would’ve been just the right program for you.

Recently, I stumbled upon an entirely unrelated piece of software which I erroneously thought was just as simple and user-friendly. It’s called QckTwit, and, according to its description on the Twitter wiki, it will let you just press Ctrl+Alt+T, type your tweet, press Enter and it’s gone out of your way. Well, the first problem occurred right when I wanted to install the thing: it wouldn’t do that, because I didn’t have the right .NET framework – or rather, none at all. Apparently, that piece of free Microsoft software doesn’t come automatically as an essential Windows update, and it took me forever to get it installed. Then, when I had the .NET framework and QckTwit would install itself, I discovered that the hotkey had already been taken by something else. Or at least, that’s what QckTwit said, but when I tried, Ctrl+Alt+T worked just fine. I had at the time just started tweeting, and was kind of surprised to find a separeate URL field within QckTwit, because Twitter’s own web feature won’t allow this. My first tweet using this lousy excuse for a Twitter app, that could’ve been so good, was no success: my URL arrived at the wrong place in my tweet and the merging of URL and text made my tweet too long. Now if there’s one thing I hate to see on a Twitter page, it’s a tweet that’s cut off mid-sentence and not finished in the next tweet, because the tweep doesn’t realize it’s too long. I delete all my tweets that turn out that way, including the one tried with QckTwit. My .NET framework has gone again due to the IE8 computer crash, and I don’t intend on installing it again anytime soon. Now I just use Twitter-s web feature, but if anyone has any ideas on an app that is truly quick, maybe I’ll try one again.

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“Attention-Seeking”: It’s Not Just Schizophrenia

I am currently reading an inspiring book by Norwegian psychologist Arnhild Lauveng, in which she writes about her experiences with and recovery from schizophrenia. Although in the Dutch media the book is touted as a curebie success story, this doesn’t seem to be the main theme really. Actually, Lauveng didn’t use chelation, high doses of vitamins, medications not at all meant to be used for schizophrenia, or whatever the schizo altie community is into these days, to recover from her illness. Rather, the theme that shines through her stories is her insight that her symptoms were not pure disease, but a manifestation of interactions between herself, her environment, and the changes her illness had caused to her thinking and perceptual abilities. She recovered through talk therapy and occupational therapy, which helped her see that her needs were not unreasonable and there were better ways of getting them met than through the symptoms of illness.

One of her stories highlights the functions of symptoms as a means of communication, when real communication through human language has been taken away. She illustrates this with the example that she would not get attention from the nurses if she went up to their room saying she was having a hard time. Generally, nurses at her crisis unit would be far too busy to talk with her about her feelings, so would just tell her to distract herself through a game of solitaire or a little reading. This solitary activity could generally not fill the void she was feeling, so she started cutting herself. This, of course, did draw the nurses’ attention, cause at the very least they’d need to clean up the pieces of glass and apply first aid. Arnhild did not think consciously about cutting herself so that she would get attention, and fought the allegation when made in her treatment plans, but unconsciously of course she was conditioned into cutting whenever she felt lonely, rather than going up to the nurse’s station.

The point here is not that she did it for attention, but that she was conditioned into a maladaptive behavior – a symptom of her illness -, through an interaction of her loneliness with her situation as a hospital patient, where nurses had no time to provide her with much-needed company. You see, as human beings, we constantly seek attention. If we are said to be healthy, we generally have family, friends or colleagues to seek attention from. We expect our friends to be there to do activities with, to comfort us when we’re sad or to share in our joy when we’ve made an important achievement, to hang around with when we’re bored, etc. Colleagues at work don’t spend all of their interaction time on work-relevant matters at all. Most people need attention most of the time, and most people get worried when someone around them becomes withdrawn. But in psych hospital, because it’s easiest – unless, of course, you’re expected to participate in group therapy -, it’s better if you just sit in your room quietly playing thousand games of solitaire, than if you seek attention at the nurse’s station. So what do you do if playing the pack of cards won’t give you company? You cut, and find out that this will draw human attention, and the response gets conditioned.

Of coruse the solution is not what I, and no doubt many other psych patients, get subjected to: professionally being ignored even more, in order to decondition them. Deconditioning won’t work if the need is still there and there’s no other behavior that will get it met. And, again, we’re talking about a normal human need, not some extraordinary and peculiar desire that should be wiped out as much as possible. It’s about time psych people realize this and stop talking about attention-seeking without reflecting on the normalcy of this need.

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Devotional: How Microsoft Converted Me to Mozilla

I used to be a hard-core Microsoft product user, despite the fact that since Windows 2000, all its products have only gotten more flashy features that you don’t need anyway but that look just sooo cool, at the cost of stability and functionality. I happen to be autistic, and maybe I have just enough resistance to change to be able to use it as a credible excuse for still using Windows XP Home with “classic view” (ie. just like Win98 except that it’s different) turned on wherever possible. Until last year, I also used MS products for all of my Internet-related activity. Not anymore.

My conversion to Mozilla began last year with the advent of Internet Explorer 7. IE7 looked similar to IE6, except for its inevitably built-in Live Search – and I happen to prefer Google, probably just because I used that first – and its inability to use FTP properly within the IE window. I had formerly always updated my website using FTP within the browser window, but IE7 suddenly decided that this wasn’t goofy anymore and would only display FTP pages as if they were HTTP. Probably if I’d been technically inclined, I could’ve figured out a way to make it work, but I asked my boyfriend to recommend a good FTP client instead. FileZilla made its way onto my desktop. To my surprise, despite the fact that it is not a Microsoft product, it looked just enough like Windows Explorer – which I never use, but remember from Win95 how it should work – to appear familiar to me.

I got used to ignorning the Live Search tool and the other annoying new garbage around IE7, and pretty much still decided that those who used Firefox were inevitably geeks – and I don’t belong there. But then came a new essential update, as Windows let me believe: Internet Explorer 8. Not only will it not cooperate with my screenreader and braille display – I can only view the page title and a button saying “Open this document” -, but when I first tried to use it, it somehow crashed my computer to the point where I had to shut it off. That in turn crashed part of my file system, which meant my boyfriend had to re-install all my programs. IE8 was still an essential update which Windows wouldn’t let him skip, but so was Mozilla Firefox 3.5 – according to me. Because I associated Mozilla with geeks and geeks with Linux – my boyfriend is pushing me to teach myself to use that, too -, I had no clue what it’d look like. My sister tried to reassure me that it does have an address bar, which didn’t really reassure me since I had no clue how I’d be using that – my screenreader won’t even show address bars in IE. Turned out she meant menu bar, which did reassure me quite a bit – I’d half expected to need to memorize a dozen commands. Maybe my experience with FileZilla should’ve taught me that, even though Microsoft is losing the market to Google, Mozilla et al., a generation of computer users has still grown up with its products, and they aren’t all going to learn a whole new language overnight.

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The Complex Matter of Lying and Mental States

Joe Kraynak of Bipolar Beat asks: Have you ever lied to your doctor? The answer, however, is not as simple as it may seem.

Joe Kraynak assumes that some people in a depressive episode might not tell their doctor that they were at one point manic, in order to avoid the bipolar diagnosis. This may be a reason for misdiagnosis and inappropriate antidepressant treatment. However, what he fails to acknowledge is the possibility that some people don’t intend to lie about their former state at all. I was myself never diagnosed with any mood disorder, but have been in a number of situations in which I might be accused of “lying” about my mental state without intending to.

One of them occurred during my crisis in 2007. During that time, I have repeatedly asserted that I’d really never felt less overloaded than I was at that time. The reason for this “lie” is that, when I am in an extremely overwhelmed state, I cannot imagine ever having been in any other state, or will distort this idea in my mind to something more black-and-white. Because at that time the possibility that I was depressed was repeatedly considered – incorrectly so -, it may well be thought that I lied in order to influence the diagnostic process. I didn’t.

Another thing, also related to a non-existent depressive state of mine, is the incorrect pathologization of distressing but understandable states. My most recent “depression exam” occurred in December of 2008, after I had been in a terrible meltdown, including black-and-white assertions about my mental state. In a sense, I think I should’ve gotten a Noble prize for survivorship for *not* having been depressed, after a year on the locked ward, with little perspective on moving on. However, the staff did not recognize this, and sent the doctor to me to ask me the standard depression-screening questions (I am pretty sure the whole thing wasn’t really meant seriously by that particular nurse). I answered them, truthfully so to the best of my understanding – another complicating factor is that I find it hard to deal with open-ended medical questions -, and did explicitly mention having other negative thoughts besides the ones directly concerning my living situation. Of course, just because thoughts are not *about* the patient’s known stressors, doesn’t mean their occurrence is not influenced by these stressors: I at the time obsessed over the possibility of dying before the end of 2008, and by December felt bad that it was unlikely to occur, but of course these thoughts might not have been so dominant if I’d been in a living situation where I found life worth living, or knew that I would be going into one relatively soon. The bottom line was that the doctor said he wasn’t sure what to think – I had some symptoms, but wasn’t clearly depressed – and this whole event was never talked about again. It is possible that, again, the doctor believes I wanted him to think I was depressed. I didn’t: I knew I wasn’t in a depressive episode, but distressed I surely was, and significantly so. Who wouldn’t be, in my situation? I didn’t even find it necessary to speak to the doctor, but now that the nurses did find it necessary, I answered his questions, within his frame of reference, which is, of course, the DSM-IV. Of course the truth is that a medical doctor was not the right person to consult on my issues at all, but he happened to be the only one available. Besides, if I had asked this doctor, who had only worked at our ward for two weeks, where I should go with this problem, knowing that it didn’t fall within his expertise, he likely would’ve had no clue.

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