A few weeks ago, I saw an old post on autism and medicating and what’s the dilemma being tweeted again. It got me thinking about my own journey on the path of the medication controversy.
I first learned about autism and medication from the likes of APANA (Autistic People Against Neuroleptic Abuse) and Autistics.org. It was communicated clearly on these sites that autistics should only take medications if the right supports are in place, they’re themselves suffering (as opposed to the parents suffering from the autistic’s behavior) and if the medication is not an antipsychotic. I took this information at face value. When I was myself diagnosed with autism, I became an enthusiastic autistic advocate. I was soon disillusioned.
When the option of medication was first mentioned to me, I was miserable. I had the right supports, although I was soon going to lose them due to moving into independent living. An antipsychotic wasn’t the first medication mentioned. But it was what I ultimatley ended up on. I wrote a blog post the next day about really well-informed consent. I wasn’t really aware of the fact that I had truly been mildly coerced into consenting and that 95% of the “really well-informed” bit came from my own Internet searching rather than the psychiatrist.
I quit my antipsychotic eventually when I realized it was being used as a substitute for proper care. I used the side effects as an excuse, but really I was still miserable, only just not miserable enough for increasing my supports. I was really fortunate that the psychiatrist who ended up admitting me to the hospital three weeks later, didn’t consider prescribing me the same antipsychotic, or any antipsychotic, again.
For years, I was without daily medication. I noticed how the use of PRN oxazepam was coerced, and I wasn’t going to go along with it – unless I was truly miserable. Or unless seclusion was touted as the only alternative.
In late 2009 and early 2010, I had the worst irritability I’d had in years. I knew that I might benefit from more support, but I also knew this wasn’t feasible, and my support was okay at least. So when my psychologist proposed I talk to the psychiatrist about medication, I consented. The psychiatrist gave me plenty of inforation, including many of his reasons for and against particular drugs (mood stabilizer vs. antipsychotic and if an antipsychotic, which one). He also gave me a week to think, and I consider the consent I gave this time for taking the antopsychotic Abilify to be really well-infomred.
My dose, however, had to be increased several times. I remember once telling the substitute psychiatrist, a much less considerate doctor than my regular psychiatrist, that I felt I needed more support, but I was bluntly told off and prescribed a higher dose of Abilify. Of course, legally I could’ve refused, but the irony of informal hospitalization is that you’re mde to believe you have a choice, only you don’t. I had, after all, been threatened with forced discharge if I didn’t consent to seclusion a few years prior, and this time, I didn’t even have a home to go back to, so what choice did I have?
For three years, I did fine on a moderate dose of Abilify. I did get a low dose of the antidepressant Celexa added, which forutnately never had to be increased. Then, in the summer of 2013, I moved to my current institution and soon found I had more meltdowns. I was threatened with the locked ward, in the kind of way where nurses don’t really mean it but just want to scare the crap out of you, so what choice did I have but get my Abilify increased again. And again?
I’m now at almost the highest dose of Abilify that can be prescribed, a five-fold increase from my original dose. I’m feeling really drugged up lately and in a kind of agitated state where I’m too drowsy to get out of bed yet feel irritable nonetheless. I’ve raised this issue with the staff and my psychologist several times, but nothing has come out of it.
Currently, I’m taking an antipsychotic to manage behavior that other people suffer more from than myself while I don’t have proper support. After all, proper support isn’t needed when you aren’t a pain in the neck of the staff, and when you are a pain in the neck, it’s all “attention-seeking” and “overreactivity” and they’ll treat you like crap until you’re begging for a PRN pill. Is this what Autism Daddy means? I’m assuming he wants the right support for his son, but he doesn’t care that other people are drugged up for a dentist’s appointment. Now I know that his son is more severely aggressive than I was when I gave my really well-informed consent to the original dose of Abilify, but I’m still worried.,/P>
As I wrote in my previous post, my psychologist considers medication to be a substitute for proper support. I disagree, but I’m afraid that I just got to go along with it, and the fact that I’m an informally admitted patient only makes this a little harder.