Misdiagnosed?

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This is a very painful, touchy subject for me. As a matter of fact, it's taking all of my courage to post this, so I'm taking a deep breath....
Has anyone been misdiagnosed with a dissociative disorder? When I was in my teens I was diagnosed with a very severe form of dissociation. I was subjected to controversial therapy daily, as well as hospitalized several times. I also was made to take a ton of meds, as I believed them when they said I was very sick, and would not ever get better without meds. After I left home, and stopped therapy all the dissociative symptoms all but disappeared. I think that it's very possible that I have AS (which wasn't in the DSM at the time) but I got treated with the current trend of the early 90's, repressed memory therapy. I was very naive when I was young, so I didn't question my family, or the docs that said they were trying to help me be normal.
I'm just wondering if I'm the only one on here that this has happened to?

Not knowing much about you, it's hard to say. It's very possible they misdiagnosed you because AS wasn't really around then. I got diagnosed as a kid with "hyperactivity" due to my flapping/rocking and inability to shut my mouth. That was back in the 70's so anything is possible. I'd suggest starting by talking to a QUALIFIED therapist who is familiar with adult AS.

I KNOW that I don't have a dissociative disorder, so I know that I was misdiagnosed as far as that's concerned. I'm not sure if I could have AS, though. I have 2 kids on the spectrum, and we're all quite positive that my brother has AS. To be quite honest I'm not too keen on ever setting foot into a psychologist office again after the trauma I suffered years ago from it. I was just wondering if this kind of misdiagnoses was common in the years before AS was well known. (in other words this isn't a "could I have AS" post)

Sorry I misunderstood your question. So to answer the question you did ask - hyperactivity was my diagnosis as a kid.

When I was 14, my Mother took me to a psychiatrist who diagnosed me with Schizophrenia. Thankfully my Mother listened to me when I said I didn't want to be put on medication.
Looking back I can see why that woman would have thought Schizophrenia was the culprit, especially because my biological Father is Schizophrenic. She was very wrong, though. I'm not Schizophrenic.
So yes, I have been misdiagnosed.

Missboots, you were very lucky to have a mother that listened to you instead of the doctors. I know that my mom was just trying to help me, but she made things way worse by getting all up in arms by what some very misguided psychologists said.

I think that dissociative disorder can occur more frequently in AS. Also, I think it is not always a psychological condition but can be caused by unrecognized "petit mal" seizures in the temproal lobe - an area of the brain that controls feelings of self and reality. During adolescence, people with AS and autism have a greater risk of developing epilepsy and therefore could also experience in increased risk of dissociative disorder.

I used to frequently experience feelings of Un-Reality beginning at 13 years old and last occurring when I was ca. 24. Oddly enough, unlike most, I enjoyed the experience of Un-Reality. I felt like I was in a dream and that I was invulnerable, also the environment seemed to change - all the colors were drained away, I could only see subdued colours..almost black and white. It would happen every few days (couple of times a week) and last for 15-30 minutes. This may not be classic dissociative disorder, which I read is a continuous feeling of un-reality rather then episodes (or attacks) as I experienced?

Also, the episodes of un-reality proceeded by about 6 months, a period of my life when I was affected by severe panic attacks. Thus dissociative disorder was not caused by panic attacks but was more likely related to general neurological changes that first caused temproal lobe seizures and later amygdala [emotion centre] changes that caused panic attacks (the amygdala in autistics first enlarges in childhood/adolescence and then shrinks in adulthood - the shrinkage is believed to be caused by anxiety and panic attacks damaging and shrinking the amygdala). This is why I don't agree with the current hypothesis that dissociative disorder is a persons way of escaping feelings of fear and panic. I would agree that treating dissociative disorder as a psychological/emotional condition is not always the right thing to do, it is especially important that epilepsy and AS is checked for.

Hmm. I really don't trust anyone other than me to diagnose me with anything(s). I also don't want certain things going on records anywhere. So, I analyze and try my best to diagnose myself, for no real reason other than trying to understand myself and perhaps help others understand me better. If I find some description of a mental state that fits me veritably to a T, such as Asperger's Syndrome, I then have a tool that I can point people to that may help me explain myself as more than just a large collection of random abnormalities and weirdness. Having diagnosed myself, I may have misdiagnosed myself; but I also have not subjected myself to any spooky treatments over things (well, unless you count Paxil). But all of my diagnoses are probable, not certain. I like to try to stick to saying "I probably have AS." rather than "I have AS." And I have no problem with the situation, even with the notion of "fake aspie syndrome" floating around.

Good fortune,

- Icarus is a fake human...

DiamonddaveJ, what you posted was very similar to what happened to me. When I was about 15 I started having panic attacks, and some seizure like activity. I went through a battery of tests, but the docs all said that it wasn't a physical problem. They said that the seizures were of mental origin, so I was taken to therapy. What happened next will scar me for the rest of my life. I'm so full of regret, and shame that I cannot believe that I'm going to post the rest of this story. I tell NO ONE about it till this day. The therapists that my parents took me to practiced Repressed Memory Therapy. They kept insisting that I had to have been abused to have all the symptoms that I had. The severe depression, aversion to touch, low self esteem, lack of ability to connect with others in a way that was normal, and episodes that (after reading on WP) seemed to qualify as meltdowns. I kept insisting that I wasn't, except this one time maybe something happened, but I couldn't really remember it for sure. I was told that I was very sick, and the only way to lead a normal life, one free of mental institutions, and the like, was to consent to the therapy that would uncover the "repressed" memories. I was only a kid at the time, and very naive. That kind of therapy has been largely discredited by the psychiatric community today. It was very damaging to me, and my family. I'm still trying to put the pieces back together, and this happened over a decade ago. I am surprised that I didn't get more responses to this post, since RMT, and subsequent dx of dissociative disorder was so popular in the 80's, and early 90's.
Icarus_Falling, I totally understand what you're saying. I will stick with "probably have AS" too. I don't trust docs anymore, and if I can't tell with 100% certainty, then how will anyone else? I live in my mind, no one else knows what goes on there better then I do. Since finding out about AS I have some sort of resolution. I have been able to apply some very useful coping skills to my life, and I can honestly say that I have never been happier. I am no longer ashamed of who I am, or afraid that if I rock, talk to myself, or flap my hands that I'm gonna get carted away. Bad therapy, and mental institutions can instill such fear, and shame. Now I feel that I can be free to be who I am.

I hated it when it was trendy to think that there was a repressed memory that caused the weirdness. My very aspy sister was put in a mental hospital and given lots of drugs. She got convinced that if she could remember that her father molested her she would be on the road to recovery.

They helped her decide that sexual molestation was the root of her problems because she didn't like to be touched most of the time. She begged me to help her remember incidents of improper sexual behavior from our father. I don't remember anything like that.

Later when my daughter turned out to be severly disabled with autism and my son turned out to be aspy, I told her that now it's clear to me that our family is a den of screwed up aspies. After all the years of therapy and drugs and trying to remember a sexual molestation that probably didn't happen, she didn't want to accept an aspy diagnosis because there was no cure for that.

I talked to two psychogists who worked in mental hospitals years ago and they are pained today, recalling all the AS people who were there being diagnosed and treated for all the wrong things.

First of all misdiagnoses is common, more common than is healthy.

When I was a baby my doctor was perfectly sure I had some kind of physical disability to my legs. It turned out that there was nothing to this and that I was perfectly healthy and the specialist said that the diagnosis was all wrong. When I was evaluated because of me suspecting that I had autism the women I went to see first was certain that I had a borderline personality disorder of the anxious type, panic attacks and for her it meant medication! However, before she could diagnose me, I fled the hospital.

I don't trust doctors for various reasons. I know this may sound extremely offensive, but I have never been wrong with diagnosing myself (due to my autism I guess. It's nothing I'm proud of, because it means my head is a lot more crap than that of other people.)

I'm very sorry to read your lines about what doctors did to you, serenity. These last sentences of yours are great! It's cool to hear that you're happy and coping by the knowledge of what your issues are truley about.

I had literally 30 years of mis-diagnoses and missed diagnoses. In that time I must've seen 20 different psychologists and almost as many psychiatrists. It's almost beyond belief. I knew instantly first time I saw a description of AS that this was it. The medical establisment has ceased to be a major concern to me. I'm left with feeling of mild pity and a little contempt for them.

Hmmm... well, after reading these posts I can't decide whether or not I'm "lucky". I grew up in a very small town in Southeast Texas where nobody believed in going to the psychologist (I don't even know if there WERE any) and there was no such thing as anxiety or depression. You were just either normal or weird. When I told my dad I was severely depressed, he told me things I could try to "cheer up"... not understanding that it was something way beyond that. My teachers sent letters home that I was "daydreaming" all day in class and my parents would scold me, telling me to "pay attention!" I would go home and tell my dad that everyone was picking on me and he would tell me that I need to "kick some ass" and stop putting up with it.

Is it good or bad to come from an environment like this? I was never treated or given the help I really needed, yet I also wasn't subjected to traumatizing treatments of any sort.

This reminds me of a tragically funny experiment that some people did where the experimenters got normal people in a mental hospital by claiming that they heard voices. After they were in, they acted normal. The doctors found all kinds of mental problems with these people. The patients, though, could recognize that the experimenters didn't belong there.

After the experiment was completed, the shrinks were embarrassed. The experimenters said that they were going to do this whole experiment again to see if things changed. The paranoid shrinks started thinking that real patients were faking it.

It's an interesting read.
Rosenhan Experiment

(I don't understand how to make URLs work on this MB. It's different from my MB. I hope the link works.)

whats dissosation disorder?