(I feel really bad because I kind of assumed that someone who was on medications didn't want to be on them. What I ended up saying as a result was really disrespectful. I keep wanting to write them a long email explaining my personal med-context, to explain why I had that reaction, but if I do that it will seem like I'm trying to justify what I said, which I don't want to do because I know it wasn't okay. But after I decided not to write the email, I still wanted to write about my context.)
I was just put on a lot of stuff really fast when I was 15-16 and I was sort of...well, if I understand right I don't know if I got any kind of official diagnosis (I love that you need a diagnosis for accommodations but not for medication) but I guess the psychiatrist told my mom I had depression and hallucinations. (You can ask me if I've ever had either depression or hallucinations. The answer is no.) I was put on antipsychotics and waited to "get better." Instead I felt very physically uncomfortable, so I was put on Parkinson's medication too.
If I understand correctly I was taken to the psychiatrist originally because I was "cycling" which was my family's way of saying that when I was upset or stuck on an idea I would talk very repetitively about it in a way that my family found to be hard to take. It was thought by my family that this might mean I had a mood disorder. (Without comment, can I just say that I was already diagnosed with ASD this whole time.)
A few months later I had been cutting myself for I think pretty standard reasons of not knowing how else to connect/communicate to people, but I wasn't comfortable telling the psychiatrist this because I barely knew him. So he told my mom I was cutting myself for "stimulation" because I couldn't focus, and I was put on Adderall.
It's hard for me to even talk about the Adderall Times because putting a person with ASD on speed is just a horrible, stupid thing to do. The thing is that I knew I shouldn't be on it. But I was just too young to tell the truth. I had such a good time skipping class and hiding in the school library making lists and transcribing songs, so I would lie and say it was helping me with school. Besides, whenever I went off it all I could think about was different ways I could possibly die, so I always found a way to get back on. (Briefly during Christmas break when I was sixteen, I was taken off Adderall and put on Prozac, but I was just so dulled out. For some reason it didn't occur to anyone that maybe I was depressed/obsessed with death because I was on antipsychotics for no reason.)
Eventually the Adderall didn't even make me feel so good anymore and I was taken to a different psychiatrist who put me on Wellbutrin and I felt good again for a little while. This psychiatrist kind of thought I should go off some of this stuff though. And my family ended up deciding I should go off it all, because I had lost so much weight. But I had already done a lot of damage to my grades and my social life because of my complete tweaking out on Adderall all year.
After that, I've always refused to take any medication at all. It's difficult to even convince me to take cold medication. I'd rather spend the day lying down than take painkillers when I have cramps.
Last spring when I was having a lot of anxiety and dissociation problems, my mom really wanted me to go on anti-anxiety meds because apparently Temple Grandin is on them (I know, who could say no to Temple Grandin?). I very much didn't want to go on medication, but I was worried about myself, so I asked if I could see the second psychiatrist I had seen in high school, the one who helped me go off everything. I just remembered that I had really liked him and that he said I seemed like I had ASD (which I appreciated since people were always telling me I obviously didn't).
My mom and I had a lot of conflict driving to and from the appointment because I was saying that I didn't want to be on medication. It's not really worth describing but she basically implied that it was a waste for me to want to go talk to this guy just because I liked him as a psychologist, when I didn't want to be on anything. When I talked to him, he himself was fine with me not wanting to be on meds, but I had to fight tooth and nail with my mom to get her to stop trying to convince me to take meds, and as usual ended up feeling that I was a bad daughter because of my refusal to take them.
Recently, a person with ASD was telling me this funny story about when they were in high school and were on a lot of medications, but didn't want to be on any. The person managed to trick their doctor into taking them off some of their medications, to the chagrin of their parents. The tone in which this story was given and received was very "fuck yeah autism!" and for the next few days I kept thinking of this story, how funny and cute it was. What an awesome kid.
Then something changed and I realized it's not a funny story at all. It's a fucking horrible story. Why should any child have to do that?
I mean, the fact that I thought it was funny is something I like about myself. It is kind of funny and cool when we can resist other people's attempts to assert control over our brains. But also...what the FUCK? A developmental disability is not an automatic reason to be on medication but it seems to work out that way in some people's minds.
And this is why I was a jerk to someone the other day because when they mentioned their medication I was like "you don't have to take that you know! Lots of people have had bad experiences on it," but I didn't realize that this person has had kind of an opposite experience with people saying, "You don't need to be on medication," when the person actually wants to be on it. And I am really really sorry for what I said because I want Autistic people to be able to get what they ask for, and not get what they don't ask for, and that's all.
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Back when I was a little girl they diagnosed my atypicality as ADHD rather than autism and subsequently doped me to the gills with methephedrine and, when that failed to do squat, they put me on dextroamphetamine and continued to up the dose, even past recommended levels, to make me "normal." I don't really remember that much about being on those drugs or what it was like before I was on those drugs. I was very young. I remember I didn't want to be on those drugs but my parents wouldn't let me just stop the drugs because I didn't want to be on them.
ReplyDeleteIt took years to finally figure out how to get off of them. When I did, I don't think I even really remembered what life off the drugs was really like. I lied to my mother and told her that the drugs were causing a mild tremor and that I couldn't play my violin because of my tremor. It was finally this that got me off of those damned pills.
To this day I'm very leery of taking any kind of medication and the only drugs I will take are my hormones.
No real point to that, I just thought I'd share my experiences with drugs, too, to say I think I understand.
I think one of the things that is most hurtful part of being told you have to be on medication you do not want, even if you're able to refuse it, is that it leads to yet another way your disability becomes minimized. I refuse to take drugs for my tourette syndrome which, by all accounts is severe. Yet, because I don't take medication people compare me, and I compare myself, to people who are like me and who's symptoms are as bad as mine who are on medications. I feel that because I'm not on medications that my disability isn't really as severe as it actually is because if I were to just accept the treatment, I tell myself, it would be so much easier.
ReplyDeleteSometimes I tell myself that I'm a drama queen or an attention seeking snowflake because I refuse to take medications. Sometimes I feel like I actually want my symptoms to be worse because I need to feel validated as a disabled person.
Sometimes I feel guilty because the outward symptoms of my disability might be reduced if I were to accept medication and those symptoms are sometimes very disruptive and negatively impact people around me. I feel like a nuisance who, because I will not accept treatment, wants to be so.
I tell myself that the reason I don't take the drugs for it is because they did nothing to ameliorate the stigma and that the side effects of the drugs made life truly miserable (antipsychotics, I can relate). This is true yet the real reason I don't take drugs is because drugs are not right for me because I do not want them. The truth is that's all there is to it.
And that's okay.
hey there, just wanted to say i feel sorry for what happened to you, makes me feel really glad that i was never diagnosed as a kid (and i'm older that you, who knows what they would have done to me in the eighties? shock treatment? *shudder* )i am also very silly about medication, paracetamol is ok but i tend to skip the rest...can't imagine swallowing antipsychotics ...our symptoms bother Nts more than they bother us i think. from your story i form the question: who's the least empathetic group here?
ReplyDeleteThe very first "psych med" I was put on was an antipsychotic (Risperdal, to be precise). Because as a teenager I was referred to a random psychiatrist by a counselor lady I was seeing due to some court thing related to my parents' divorce (side note: I was happy my parents were divorcing when they did, seeing as it was awful living with people who didn't get along). And the psychiatrist guy observed me for like 10-15 minutes and promptly wrote a prescription. He did not even suggest a diagnosis, and all I remember him saying was something about "anxiety" (even though I wasn't really anxious). Anyway I had a horrible reaction to the Risperdal -- like ridiculous levels of physical weakness, emotional blunting to the point where it felt like I didn't have any feelings except panic at the fact I didn't have feelings, and inability to understand my homework anymore. So thankfully I wasn't forced to keep taking that stuff.
ReplyDeleteI was put on Ritalin after that which I actually did pretty well on, though it didn't make me "normal" or anything. I've been on and off that and similar meds ever since. I actually presently do take adderall XR and it seems to help somewhat with like...executive functioning-type stuff. As in, it's somewhat easier to transition into tasks I wouldn't necessarily "want" to do otherwise. I think stimulants can be okay for *some* ASD people, but in general I think if someone takes anything they don't react well to they shouldn't be forced to take it.
But anyway, the point of all this (other than "different people react differently to different meds" which doubtless you already know) is that gah, the whole process of getting given meds? Is really really haphazard, and in my experience it was almost like how I imagine medieval medicine must have been. As in, nobody made any real attempt to get below the surface and figure out what was actually going on, and I just seemingly randomly got prescribed stuff based on really superficial impressions.
And it's an intriguing observation on your part the way meds vs. accommodations are given out. In college, for instance, I was supposed to get accommodations but it was so confusing and awful of a process to actually set them up and deal with forms and stuff that I didn't always have access to them. And overall it seemed like...there were roadblocks at every turn, and people always wanted to check your papers and such. And even then, I had some teachers look at my DRC forms and tell me they just flat-out weren't going to cooperate, and I had no communication skills to deal with that so I'd just be all "oh okay" and would put the papers away. But it seemed like whenever I went into a psychiatrist's office I would walk out with a prescription. Very odd indeed.
@Anne Corwin
ReplyDeleteI know what you mean. I was rushed onto haloperidol for my tics when I was referred by my psychologist to my psychiatrist. To his credit he really did listen and I really did need the medications to get me through a particularly bad period where my tics were very severe and I had not yet learned how to emotionally cope with them.
After I had a bit of respite and had asked the psychiatrist to wean me off of the drugs he had me referred to a neurologist to have my diagnosis confirmed (the psychiatrist treated me only because it was an emergency). The psychiatrist specifically wrote in his letter that I did not want to be treated with medication and that I was just being referred to make sure that it was Tourette's syndrome and not a brain tumor or Wilson's disease.
What was the first thing the neurologist said after he introduced himself? "I was looking at your chart and noticed you haven't tried Risperidone yet..." and spent the next ten minutes trying to convince me to take medications.
I, of course, told him that I was only interested in knowing whether or not I'm going to degenerate, which he glanced at me and assured me it really was TS and that I couldn't have Wilson's because he glanced in my eyes and declared that I don't have Kayser-Fleicher rings and thus couldn't possibly have Wilson's (I have since found out that most KF rings need specialized equipment to detect and you just can't glance to rule them out and that not everyone with Wilson's has them anyway). Given my very unusual onset for TS the differential diagnoses should have been much, much more carefully considered.
Also, he managed to divine that my autism diagnosis was "clearly wrong" because I could communicate vocally. (seriously! and he made the proclamation while I was busy hand-flapping too!)
I digress.
I find it really amazing that a doctor can't understand the statement "I really don't want treatment for X condition because I'm happy the way I am but I'd like you to rule out Y and Z differential diagnoses because, left untreated, those conditions could cause further damage or kill me."