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.