…I don’t know why she swallowed the fly, etc.

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Until a friend brought it to my attention recently, I forgot some of the crap that happened to me from medications. It seems that some people are taking words I wrote while on Wellbutrin over-seriously. Just a little note about that:

Many years ago, I was on a neuroleptic. I was found to be toxic on that neuroleptic (very toxic, in fact) and put on another one instead. That one was heavily sedating (among other things). Instead of doing anything with the dosage of the neuroleptic (Zyprexa, which they’d cranked up to 45 milligrams in their continuing tradition of overdosing me on things by prescription), they added Wellbutrin (lots of it) to the mix. I immediately felt deliriously and unreasonably happy, started believing all sorts of weird and grandiose things (and I’d been recently exposed to a lot of New Age crap, so that had a heavy influenced on what weird things I believed), and had way too much energy.

Now, when you have this kind of side-effect on Prednisone (and I have had an extremely similar one on that recently), it’s considered a side-effect of a drug. An unpleasant one, and one that needs to be watched out for and guarded against, but a side-effect, not something innate. When you have a side-effect like this on a psych drug, the assumption is too often that you had this all along as an “underlying issue” and that the proper thing to do is to “treat that issue” rather than to reduce or eliminate the psych drug.

So the next thing I knew I was being put on Lithium for either bipolar or schizoaffective disorder depending on who you asked. And I was beginning to think that maybe they were right about me being out of touch with reality for real, and becoming far more likely to want to take every drug they shoved at me, because even I was aware that something was a little “off” here.

Fortunately the cycle just about stopped at the Lithium, because when I started having toxic effects from that, I was old enough and getting enough of my own thoughts and desires out amidst the less-communicative stuff to be able to tell them that I wanted to taper off every drug I was on, which at that point was Seroquel, Lithium, and Wellbutrin. That was in 1999.

After the withdrawal period (which was nasty in its own right, even with tapering), I haven’t experienced anything like that. But some of the more outlandish things I’ve said in my life, were said under the influence of plenty of Wellbutrin I should have never been on in the first place, and shouldn’t be taken as representative of my actual beliefs. I’ve said plenty of other outlandish things for different reasons (too many reasons to count), but the only ones I ever actually believed — and some of the most grandiose ones, at that — were courtesy of Wellbutrin, which has a known track record of doing that to some people.

My experience of getting off all these drugs was interesting, too. Compared to how it felt after the withdrawal was over, my mind on all of those psych drugs felt like a murky, delirious, dreamlike haze, with little rhyme or reason or logic going on. Then there was a lot of pain and disorientation during the initial withdrawal period, and then slowly the regaining of more and more mental faculties that I’d been missing so long as to not notice their absence. The murky dreamlike feel to life went away entirely, my ability to communicate my actual thoughts (as opposed to a mishmash of random things I’d heard and vague bits of my thoughts now and then) increased dramatically, I could suddenly tell the difference between waking and sleeping, and I no longer experienced anything that would lead me to believe the strange things I’d believed before.

One man whose daughter had long ago gone to school with me (and who kept in touch) had worked in nursing homes (I can’t remember if he was a psychiatrist or what, but he had background in that field), and he said he’d seen totally lucid but “difficult” people given the same drugs I was, and get less and less lucid over time, more and more confused, and more and more out of touch with reality. He said he saw the same thing happen to me on psych drugs, but that he hadn’t felt like it was his place to mention this to my family until I had successfully gotten off of them.

So take anything weird I said while on Wellbutrin with a large grain of salt. And also be really careful with the assumptions that psychiatrists often have about the side-effects of their drugs. Too often you’ll get treated for the side-effect as if the side-effect itself is an innate part of you. I’ve seen this over and over, not just in my life but in the lives of other people in the psych system, including autistics who are being given neuroleptics who then get their resulting akathisia or violence or hallucinations or immobility treated as innate rather than side-effects. I imagine it’s even harder when you already are hallucinating, get put on a neuroleptic, and the neuroleptic makes you hallucinate more, because who’s going to believe you even if you notice that it’s the neuroleptic?

I’m really glad that when Topamax made me cry randomly and be at the mercy of a torrent of emotion at all times, I was under the care of a neurologist, rather than a psychiatrist. The neurologist told me to get off of it immediately and I did — personality changes on a drug are generally considered really bad news. I’m also glad that when Prednisone made me stay up for days on end and believe myself capable of nearly anything and start warping reality right and left in bizarre ways and going into random extreme rages in which I almost threw a telephone through a window at one point, I was both well-warned about that side-effect in advance and around doctors who knew about it. And I’m also glad that when Phenergan caused me to have visual hallucinations at night, this was recognized as a side-effect (one that I’d also experienced on Seroquel but which had been considered at that point — when noticed at all — just a part of what I was like). If the same had been true of Wellbutrin (and the myriad of psych drugs that led up to it, for that matter), then my odd beliefs on it would have been a matter of days or weeks instead of more like two years, and attributed to a drug instead of to me.

But even if my strangeness at that time were attributable to some innate thing that made me do that instead of a drug-induced state, I’m not sure what the problem is. I know a lot of autistic people who’ve experienced what psychiatry describes as mania, without any outside chemical alteration of their brains to create it. Including Donna Williams and Kassi Sibley. And that doesn’t make me discount their viewpoints about being autistic. Few to no autistic people are ‘just’ autistic anyway. If everything sometimes assumed about me in the ‘psychosis’ department were true, that’d just make me one of the many autistic people who’ve experienced that kind of thing. Big deal.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

20 responses »

  1. Hello, how are you? Recently my wife and I saw your special on CNN. We have an autistic 5 year old boy. He displays many of the same physical habits as you. Flapping his hands in front of his face, running his hand in the water, hitting himself in the face, poor balance, lack of eye contact, and not being able to speak. Since watching the show it has made us think of many things. Such as: is he wishing he could tell us his thoughts, does he actually know what we are saying to him, and is he loud and squawky because he is frustrated in not being able to communicate.
    Although we can usually understand what he needs by the different sounds and facial expressions he makes, it is frustrating for us because sometimes he cries non stop for hours for no apparent reason and we can’t tell what he needs.
    We just wanted to tell you that you have inspired us. We know have a little better of an understanding in what he goes through everyday and how he feels.
    If you have some free time, we would love to hear back from you and maybe do little corresponding back in forth. We have some many unanswered questions that we feel you can answer.
    Thank you very much,
    Clarke and Wendy

  2. Great post. Personally I find psych drugs can sometimes be helpful. I think of drugs as a cure that has an unknown part of an unknown poison. Sure the pharms would rather use the word “Side Effects” to describe minor syndromes such as headaches, vomiting and mental illneses.
    It’s not 100 proof but it is still a poison.

  3. Clarke McCurdy

    I’m not a parent, but I can imagine how difficult it must be to see someone you love become upset, or overloaded, for reasons they haven’t yet figured out how to tell you.

    Amanda gets many questions from many parents and other loved ones, both at this blog and I believe also in private email. I’m guessing she probably can’t really answer all of them — in part simply because she doesn’t know you or your children and may not always know the answers.

    But what I would encourage you to do is this:

    1. Go to http://ballastexistenz.autistics.org/?p=317 and scroll down to see comments #56, #92, #105, #133, #134, #138, #158 and #161 — all of these comments have a bunch of links that might be of interest to you, and might answer some of your questions. Do especially be sure to explore the links to blogs by other autistic adults. (Also see the links to the Autism Hub in the left column of this page). Amanda is not the only intelligent, articulate, insightful autistic adult writing on line (or in print), so there is a lot you can learn from others too.

    2. Amanda has already written a lot at this blog (and so have some other autistic adults on line). You may want to do some exploring among the categories listed in the left hand column on this page (though some really good posts were uncategorized so don’t limit yourself to those).

  4. Your experience in tapering off the psych drugs you were on sounds rather grueling, which makes me glad I never go started on that Geodon, and that I didn’t keep on taking Seroquel. I am not psychotic, and even if I were, I doubt these drugs would help. Just go to a psychiatrist for a consultation, and sure as can be, you will be put on some kind of drug. The last time I saw a psychiatrist, she told me that she could tell I was an autistic adult, but handed me a schizophrenia diagnosis, on the premise that it would be much easier to get disability. She didn’t mention that the drugs themselves could disable me. The side effect I was most afraid of was tardive dyskinesia.

    Since I don’t have a television, I missed out on seeing your special. I wish I could have seen you when you were at Autreat several years ago, but I didn’t get there until 2005. Most likely, I would have felt very uncomfortable claiming I was autistic, seeing as how I am so mildly autistic, whatever that means. It seems as people expect you to suffer a lot before you can claim you have autism. And indeed my institutionalization experience was much less horrible than yours, but you are right when you claim that an institution is still an institution. I was never put in restraints or given shocks, but did lose my freedom for 2 years and 2 months. I did witness kids being placed in isolation for months, but what I feared most was being put on a tray with limited food portions. You are right about there being “outposts” in my head, because even more than 30 years later, I have not forgotten it.

  5. I was there in 2004 I think, as a presenter. I have a lot of friends who are considered “mildly” autistic. They’re still autistic. It’s usually a few superficial differences that make the difference (and at one point in my life I would have looked “mild” as well, although still noticeably weird) in people’s eyes, regardless of internal experiences. And I definitely don’t think being autistic depends on suffering, it’s just that in this world, a lot of autistic people unfortunately suffer.

  6. Joel has a really good post @ http://thiswayoflife.org/blog about “there but for the grace of God…” where what he means is that he has freedom, adult life, and career success becos of ‘breaks’ he got, not becos of being less autistic than others. can’t paste link cos not @ real computer, but it’s a very good post, please search it.

  7. OMG, I TOTALLY FORGOT about that song! (I know an old lady who swallowed a fly…etc….) Knowing the words to that song, and how it ends, adds a whole other level of clarity to your post. Brilliant!

    (Sorry if this posts twice – had some trouble here).

  8. Know the song too. I took Wellbutrin at 150 and then 300 mgs (XL) and they were about to go a little higher until I started letting my bloodpressure go. I liked being on it. It did make me happier and actually more assertive. I noticed less social conflict while on it because I was angry more often.

    Coming off Wellbutrin was subtle but eventually felt like hell. Wellbutrin made me cry too sometimes. Sometimes, it made me feel more autistic. I had a meltdown though coming off it. I had something similar to narcolepsy instead of the insomnia I was used to. I’d go from alert to nodded off. I was always “nodding” off and fighting off sleep.

    I don’t know that I’d have psychosis with Wellbutrin but I imagine it’s an amplifier for what odd things one comes across or would experience with an anti-psychotic. I would happily take Wellbutrin over Paxil or it’s derivatives again. I’m currently a lab rat in a study for a drug that plays with melatonin. It is susposedly going to be FDA approved here soon. I take it every night and currently, there is a chance it could be a placebo. I do notice a side effect from that. My face goes a tad tingly and numb. I get headaches a little bit. I do feel a bit more tired and desirous to sleep but less “nodding” or that instant transition. More an evened out transition but my brow will furl over keeping my eyes open and strain. I feel all the eye strains, stress strains a lot more easily. This is being tried under “Major Depression” which they last dx’d me with. I needed to “see a doctor” because it was so bad. I’m currently also undergoing a divorce here. Many of my friends have not talked to me in a long time. The whole thing should be done by the end of the month and I’ll supposedly be “reliberated” but it’s not the end of a story for me. I have my child who I will be keeping in touch with etc.

    I worry about these statistics people throw at me. 80% of all autistics marriages end in divorce. 90% of all children of autistics have major [insert issue X] here. IOW, I’m supposedly a burden even when I’m married and have kids. I’m made to feel even more like a burden to society after I finished watching this movie called “300”. It’s main message: “Gimps and fags are traitors and should die”. Sparta holds no romance for me as they portrayed it. Sure, it was artsy to death and #1 but what a horrid movie in terms of some of it’s more hidden messages.

    Sorry it’s been so long but I’m not about to succomb to pressure by some of these so called mercury did it! alarmists to avoid talking to others who are like me. Many try to discredit you. I admit, sometimes I don’t always agree with hyped up materials. It’s my contrarian in me. I have been so busy with family matters to have much time to get online. I might again at some point. My job is currently under distress again. Not a wonderful day here. I feel like I need to go back to roots again.

    Overall, I would rather not be on any drugs again.

  9. I have never taken any drugs, prescribed or otherwise and judging from some of the responses and ballastexistenz’s thread, I am relieved that I haven’t. As a child growing up in the UK it was almost unheard of for a child to be placed on medication for perceived neurological differences and difficulties. And as an adult I can make the choice.
    As for the statistics, well, I have appalling self help skills, I get very nervous about touch and intimacy, I get overwhelmed and shutdown or get very irritated and snappy if there’s too much auditory and visual stimuli around me, I frequently blank out, I cannot maintain friendships, cannot organise myself, cannot follow verbal multistep instructions a lot of the time without needing reminders and my sense of danger is not what it should be at 31.
    Only, despite all that, I’m married, I’ve been with my husband for over 13 years and we have two gorgeous little lads. I’m a member of a parenting forum and have been on loads of meets (I don’t tend to say much, but I still go :D) and I’m going on another in April. I’m happy, at ease with who I am and I feel very positive about myself. Statistics aren’t the whole story :)

  10. OMG.

    Now you’ve gotten me really worried. I’m autistic myself (plus ADD), and currently I’ve been on Zyprexa (2.5g) for some weeks. It’s supposed to help me focus my thoughts and attention, but all I’m getting for the moment is being sleepy the whole day. Given on what I’m hearing about this chem and what you say, I don’t know if I should continue with it…

  11. I am curious to know whether, in the overall, the autistic folks contributing here think that taking psychoactive perscription drugs is worth it. I fully expect to be told that every autistic person, just like any other person, is different and their millage is going to vary. I know that. But at the same time, I have a lot of friends who identify as bipolar, and almost all of them tell me that some medication is very useful. Meanwhile, I have a lot of friends who identify as addicts and most, but not all, of them say that medication causes more problems than it solves — that’s been my person experience too. So I am just wondering if, in a generally sort of way, how people who identify as autistic feel about the overall utility of medication.

  12. Just because a person has autism does not automatically mean that medication is needed. And what medication can make an autistic person able to produce and respond to body language like NT’s do? What medication can make an autistic talk like NT’s do? What medication can make the “volume controls” on the senses like those on typical people? And what medication can instill self-help skills? Since I don’t have any health insurance after I lost what was a really good job techically speaking, but a disaster socially speaking, I can’t see myself spending my hard-earned money on medications I really don’t need. It is much better to change the environment to accommodate the needs of an autistic person than to try to “change” the autistic with drugs.

  13. Some of the weirdest, most “crazy”-appearing behavior that’s come out of various people in here has been when we’d overdosed on caffeine. Well, I know ‘overdose’ is relative, but in our case it would mean hitting a point where we believed very extreme things, either very grandiose or very paranoid, and/or started babbling a lot of nonsense. The last time it happened, we got cops coming over to us and doing the “are you okay, stay where you are, do you need help” business, when we’d taken caffeine pills to stay awake and finish an assignment for school, and ended up lying on a sidewalk screaming and crying and refusing to talk to anyone who got near us.

    But… yeah, urgh, we’ve known way too many people who ended up doing/believing bizarre stuff while on psych drugs and having that treated as “part of their illness.” It’s about as illogical as looking at brain images of people who’ve had physical changes in brain structure from high doses of neuroleptics and deciding that their “disorder” is causing their brain to physically degenerate. Couldn’t be that the drugs had anything to do with it. Naaah. And it’s just really coincidental that all the stuff supposedly caused by their brain degenerating– slurred speech, akathisia, dyskinesia, etc– just happens to be exactly the same as the side effects of the drugs they’ve been put on. (Yeah, heavy sarcasm alert on that one.)

    On the New Age stuff, our experience is that that stuff can… make you crazy even without chemical “help,” but drugs can just exacerbate that. At one point, we got talked into taking Prozac (actually going back on, because we had taken it in high school but later quit) because of some really paranoid ideas we’d ended up with after involvement with a spiritually exploitative “friend,” and talked into believing that the paranoia was “part of your OCD.” (With which we’d been diagnosed in high school, and really did have all the extreme, classic symptoms at one point, but it had actually started to taper off a little before all the business with the “friend” happened.)

    Looking back, trying to separate what really happened from the psychiatric mythology that had been constructed about us by doctors and that we bought into for a while, I think the Prozac actually helped to make the paranoia worse rather than fixing it; we were just more numbed-out. But it didn’t actually seem to decrease the number of times we got paranoid; in fact, we were still feeling it constantly, and frequently deciding that any worst-case scenario our mind came up with must be true, yet still believed we must somehow be “doing better” in some objective way because of the drugs. And we kept going into rages and screaming at people (or doing the equivalent online by flaming people) while taking it. Nothing had changed, we just didn’t care as much– that was the main “benefit” we got out of it, and doctors saw our being more indifferent to stuff that wasn’t going away as a sign that we were “getting better.”

    (Actually, though, and we didn’t realize this until years later, the level and type of paranoia we were experiencing would most likely have been called psychotic if we had gone into a lot of detail about what exactly was going on. So we managed to dodge that diagnosis. I think that if we had gone into the whole psychotic patient deal at that time in our life, we’d probably still be stuck in it. At least, everyone we’ve personally known who was given certain types of drugs for that reason became more paranoid than they were to begin with, and more often. But of course, that was declared to be something that had supposedly been part of them all along.)

  14. Excellent points, as always, about the psychotropic drugs being a decidedly mixed blessing. I’ve experienced the drugs as terrible and as useful, depending on the drugs and my current state.

    I commend to all an excellent resource and forum on dealing with psychotropic drugs, especially helpful for people with multiple diagnoses and tons o’ meds coursing through their systems:

    Crazy Meds

  15. Thank you for sharing your experiences with us – you must know how incredibly helpful it is for us to hear from you. I have a wonderful 10 year old grandson who is very bright, speaks a little, and is learning to read,write and do math. How do we open the door for him to express his feelings via written communication as you have. I don’t believe he comprehends language the way you do – we have to work so hard to get him to understand the most basic things. He loves the computer and can type, but we can’t seem to get across to him how to use it to express his thoughts. Did you always understand what people were saying to you, or did this evolve?

  16. Barbara Kasoff

    You may want to read some of the things Amanda has written about language in http://ballastexistenz.autistics.org/?cat=51

    You may also want to browse around this blog in general to see what else you can learn — you might pick up some things along the way that you hadn’t even thought to ask about. You may note that there are two ways you can browse: by date (this blog goes back to 2005), see the calendar in the left hand column on this page. Or you can browse by category, also in the left hand column on this page.

    Also, go to http://ballastexistenz.autistics.org/?p=317 and scroll down to see comments #56, #92, #105, #133, #134, #138, #147, #158, and #161 — all of these comments have a bunch of links that might be of interest to you, and might answer some of your questions. Do especially be sure to explore the links to blogs by other autistic adults. Amanda is not the only intelligent, articulate, insightful autistic adult writing on line (or in print), so there is a lot you can learn from others too.

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