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Asperger's misdiagnosed as Schizoaffective Bipolar type.
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stillsearching
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PostPosted: Sun Sep 02, 2012 10:47 pm    Post subject: Asperger's misdiagnosed as Schizoaffective Bipolar type. Reply with quote

Before I begin, I'm sure this subject has been discussed before and if it has, I apologize.

Today as my mother was cleaning out some old files she came across some papers from some of my psychological tests as an adolescent and other various papers from some of my residential psychiatric hospitalizations. In those papers I am give several diagnosis': Schizoaffective disorder (Bipolar type), Bipolar ,Oppositional Defiant Disorder, ADHD, Conduct Disorder, Obsessive Compulsive Disorder, Generalized Anxiety Disorder, Dyslexia (actually Dyscalculia), Sociopath traits, Borderline traits and depression. All these diagnosis' were given to me on the same date, when I was twelve years old.

The things that interested me the most though, were some of the descriptions of me while I was being observed. I was described as having "severe visual spatial skills indictive of a neurological impairment" "appears to lack empathy" "severly dysfunctional in social relationships, difficulty in keeping and making friends, does not initiate relationships with peers, is unskilled at the give-and -take of play, social isolation results" "strange and peculiar physical behaviors (stimming?)" "Makes limited eye contact and speech is monotonous" " processing difficulties are noted" "above average to exeptional intelligence"

My mother also notes that I could not handle change, had a poor frustration threshold and was incredibly rigid as far as behavior and routine were concerned. I was also highly knowlegable about things that interested me and would get "fixated" on a subject for a period of time.

To me, this sounds very, very much like Asperger's Syndrome. So much so that I wish I could go back in time and beg them to reconsider all those diagnosis', after all, that's an incredible amount of scary sounding things to heap on a twelve year old girl. My mother also urged these psychologists to look into the possibility that my problems were actually AS but was always brushed off and told that I had psychological, not neurological problems.

So what I'm wondering is, has anyone else had a similar experience especially with being diagnosed as Schizoaffective and then later being diagnosed with Asperger's Syndrome?

I also wonder how the diagnosis of Schizoaffective was reached. I've never had hallucinations, delusions or a psychotic episode. Has anyone else had a similar experience and did you know why you were initally diagnosed as Schizoaffective?

I've never been formally diagnosed as have AS although now as an adult I will be undergoing some similar tests again due to my university wanting current documentation of my dyscalculia and I'm wondering if I should push to be formally diagnosed with AS? I know that adults are seldom given the diagnosis and because of that I would only be seeking the diagnosis for academic/education related reasons. Is it worth trying?
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Last edited by stillsearching on Mon Sep 03, 2012 11:19 am; edited 1 time in total
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Lucywlf
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PostPosted: Sun Sep 02, 2012 10:54 pm    Post subject: Reply with quote

I feel for your mother, to have the doctors dismiss her observations like that and to be told her son has psychological problems. My heart goes out to her. My mother was told something similar about me when my problems at the time were physical, not psychological. Long story.

I was misdiagnosed in my twenties as ADD and was told I had "social ADD (there's no such thing, btw)," since it didn't seem to affect my academic performance. I was given Ritalin at the time, which for me was awful.
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Mirror21
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PostPosted: Sun Sep 02, 2012 11:19 pm    Post subject: Reply with quote

This happened to me and to be honest, ruined my life. In california, as an adult I got a PDD-NOS diagnosis, not to mention that my moms psy wanted to diagnose me and my mother would not allow it. When I moved from california to LA state, (Louisiana), I had to go to a new free clinic and they refused to acknoledge that diagnosis, and put me under schitzoaffective dissorder, no matter how much I wanted them to litsen to me about autism spectrum. Furthermore they filled me with abilify and seizure medication (i am starting to think my stress seizures are a sort of meltdown). Then they sent me to get a psy assesment and the lady wrote to the clinic that they should check for alterior motives such as wanting dissability for me to be willing to "fake" a dissorder. I saw the letter of the assesment because I had been trying to get SSI for about two years, because the seizures and stress had been too damn much for me to have teh ability to keep a job, and my asthma is really severe. My lawyer had all the pappers and sent me copies. I was enraged. I questioned them, I demanded to know why they refused to help me, they said they thought there was something there, like mild depresion but did not know what it was.

I left and never came back.

Now my friends (who are the only family i got since m father died) think i liked to them, I cheated them and I simply refuse to change behaviours and selfish thoughts and actions and set out to hurt people. Now I live walking on "on thin ice" as some people say, in terms of my behaviour and when I have meltdowns they seldom understood and my needs I need to override. My misdiagnosis and that stupid evaluation ruined a great deal of my life.
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Raziel
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PostPosted: Mon Sep 03, 2012 3:19 am    Post subject: Reply with quote

I was just missdiagnosed twice.
Once with something in the schizophrenic region (but just as suspicion) and the second time with borderline tendencies just recently. Eventhough I was diagnosed by 3 different experts in the past with ASD.
I have the feeling some psychiatrists and even hospitals want to acknowledge ASD.

The neuropsychiatric disorders like ASD, Tourette's etc. seem to have it much more dificult to get acknowledged than the "normal" psychiatric disorders.
Some psychiatrists just want to believe that all problems the patient has are just psychological and it is possible to "cure" the patient and if the patient can't be cured he/she is just too "difficult" to handle or too "sick" or both.

A woman with Asperger's I know also recieved at least 10 different psychiatric diagnosis in the past and she even asked several times if it could be Asperger's. But then she got rediagnosed with Asperger's from another hospital where thy have experiences with it.
My experience is that when someone has "too many" psychiatric diagnosis, it is very often ASD in the end.
ASD seemes to be very complex.
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Last edited by Raziel on Mon Sep 03, 2012 1:57 pm; edited 1 time in total
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Logicalmom
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PostPosted: Mon Sep 03, 2012 10:36 am    Post subject: Reply with quote

Hi:

It is your call, but it might give both you and your Mom some closure at the very least. Your Mom sounds supportive and astute (and so do you). If it were, me - I would do it, and I am doing it. I am also trying to help other family members, including my youngest son.

My only caveat is that you ensure you see someone who has experience diagnosing AS in adults. I have seen the advice here to find someone with experience, and I add my voice from my own experiences thus far. If screening is available through the university, I would not pass it up.

Additionally, if you have children one day this might be beneficial for them.

Best of luck to you,

LM
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stillsearching
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PostPosted: Mon Sep 03, 2012 12:13 pm    Post subject: Reply with quote

I do feel like some of my troubles have been because I am female and "people in the field" are either A.) reluctant to diagnosis or even entertain the notion of a diagnosis of AS in a female patient or B.) are ignorant to the signs and symptoms of AS in female children.

I feel for my mother as well especially since while we were talking yesterday she told me that after the first few times she mentioned her suspicions and was brushed off, she stopped bringing it up and stopped pushing for another explanation. She sort of just accepted whatever the psychologists told her about me. Which is really sad considering she was told several times that I was Schizoaffective, when clearly I had never had any of the major symptoms(hallucinations, delusions, psychotic episode lasting two weeks or more etc.) and she routinely denied this. One of my teachers in grade school also brought up the fact that she thought that I didn't have a psychological illness but rather suffered from AS. The school brushed her off as well and insisted that the tests were correct and that I had a plethora of mental illnesses, the likelyhood of which I would never get better from.

After talking with my mom some more I was able to remember some things that may have led to them diagnosing me as Schizoaffective. I was teased and bullied horribly all throughout my K-12 years. I was also acutely aware of when people were talking behind my back ,spreading rumors and the like. (usually to the tune of I was stupid, retarded, had killed somebody, had sexual contact with animals, was ugly, fat, psycho and on and on in that fashion) It was always within my earshot but out of range of any adult being able to hear. I was always on guard for these things and though I didn't have the skills to confront anyone or make it stop, I made sure to take note of when it was happening and what was said. Usually teacher would deny that the girls that were responsible were cabable of anything short of benevolence and I was branded a liar. Sadly, those things have followed me around for the rest of my life and in addition to having pre-existing social difficulties I am now terrified to get close to anyone but my parents for fear that the same things will happen again.

Apparently I had voiced my concerns about this and wanted the mistreatment to stop but instead it was interpreted as "paranoia", that I thought people were "out to get me" and that I was hearing voices and that because the girls who teased me were "nice girls who didn't do that" I had to be suffering from some sort of hallucinations and delusions.

At least, that's what I've been able to figure out thus far. To me it sounds insane to ignore a child who is being bullied and to instead insist that they are hallucinating. Especially when school staff was aware that I was in special education and had some form of social impairment and was known to have no friends or social relationships with my peers. That sure sounds like a child who is at risk for being bullied and probably is being bullied to me.

I also suffered from some very intense fears and phobias as a child which were chalked up to "delusions". I was terrified of food-borne illnesses and obscure viruses and conditions (Ebola, Cruzfeldt-Jacob, Lassa Fever, Hanta Virus etc.). I don't think that being afraid of these things is delusional. Obsessive Compulsive maybe as I was also deeply interested in the workings of these illnesses and read everything I could about them even though they scared the crap out of me (and still do!) but I don't think it qualifies as delusional.

I will try to see if my University would be able to give me the tests to diagnose AS. I do know that they want me to see an educational psychologist for the learning disablility testing and that the University was unable to test me for that and wants an outside opinion. I fear the same thing will happen when I ask about being tested for AS. There is a lack of skilled and experienced professionals in my area (the Virginia Peninsula) and those that are able to diagnosis AS are not covered by my insurance and charge fees that are way beyond my ability as someone on SSI to pay for.

I'm determined to find ways around this though!!
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Logicalmom
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PostPosted: Mon Sep 03, 2012 1:45 pm    Post subject: Reply with quote

I am sure with your determination, you will get your answer.

As for phobias, I am wondering if you might experience what I experience: as soon as I learn something, it is etched in my memory. Once this happens, I have all of this information along with a strong visual/physical experience of the event actually happening. I am accused of worrying, but I am not sitting there working up unfounded fears. In situation a), b) follows. I am not sure I need a professional to tell me so, but I have synesthetic experiences. I have a visual/physical connection. I can see and manipulate words and letters, for example - for me, language is very physical. Language is actually physical in terms of its production and reception, but for me it is very much a 'body' experience. It just seems to me, as for phobias, the phobia follows from information - and I gather a lot of information. Intensify it with my physical experiences and strong visuals, and that fear is very present. Does that make sense? I often find people too flippant about their health, and I dislike when my concerns are minimized. Sometimes I wonder how the human race has survived this far.

As for paranoia, it was made clear to me early on that if I thought people were laughing at me or calling me names, they were actually laughing and calling me very explicit names (and it was mostly girls - I got along much better with the guys, which earned me names like: slut - even though I was just talking). I was bullied severely. If I am left sensitive in later years, I can't help but think it is in reference to experiences at a time bullying was more blunt than the sometimes more subtle or complicated bullying by adults. Sometimes I misread people, and sometimes I have a very clear indication that the judgements continue - such as an open comment in class about me being weird. When it is spelled out so clearly, there is no paranoia, thank you. Unlike when I was a teen, I now prefer the directness of opinion. I would rather have it spelled out than be left wondering. I don't mind being thought weird at this point, I just don't like not knowing. From the reading I have done thus far, I don't think it is uncommon for people with AS/ASD to be suspected of being paranoid. Combine poor or impaired social navigation with bullying and who wouldn't be sensitive? Okay - it may not bother some people, but it bothers enough people that this point is made in the literature.

I am an older female, and I agree with your experiences in regard to being female.

You sound very insightful and logical. From the little bit I know of you from your posts, you sound well grounded.

I hope you don't have to wait too long to access what you need for assessment.

LM
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Callista
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PostPosted: Mon Sep 03, 2012 2:21 pm    Post subject: Reply with quote

I know one guy who was misdiagnosed as schizophrenic. He never had any symptoms of psychosis, and it led to his autism being completely missed until he was well into adulthood. So, yea--it can totally happen.

There's less risk of it happening today because autism is more well-known, but in the cases of people in their thirties and upward, I bet there are more than a few autistic people who have been misdiagnosed as schizophrenic, usually from childhood.
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stillsearching
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PostPosted: Wed Sep 05, 2012 5:31 pm    Post subject: Reply with quote

I would say that is definitely part of my phobia issue. Once I read something, it's there for life and reading is a visceral experience for me. I have a similar experience with language like you described as well. So naturally, my phobias are also very real to me. They ebb and flow with time but have always been around the same issues. I don't talk about them though and I can't recall ever discussing them with a professional so I'm still baffled as to how they concluded that these phobias constituted delusions.

I have been able to find some places around the area that will take my insurance and that specialize in diagnosing and treating late teens and adults with AS. I'm going to my GP tomorrow and going to see if he will first refer me to someone who might be able to administer the appropriete tests as I feel like I will be taken more seriously if I'm referred by a professional rather than making an appointment and starting the process on my own hunch. If my GP is unwilling to do this then I'll take matters into my own hands and start the process myself.

I am a bit concerened about being tested though. For one, I hear tests like the ADOS are subject to bias on the part of the person administering the test. Also, the vast majority of these tests are for children. Clearly, I am no longer a child. My other concern is that because I've gone through life undiagnosed or diagnosed with psychological disorders and I've learn to adapt if this will skew the results. I'm still severly socially impaired (one friend, no romantic relationships since adolescence etc.) and I'm still incredibly sensitive to certain stimuli, loud noises, strange textures on my skin and certain foods, etc.

I'm also afraid of getting told that I have schizoaffective again when I know that I don't and never did. In this area especially I know that the mental health and neuropsychological fields are lacking in top-notch professionals. For instance, as an adolescent I also suffered from Bulimia and when I moved to Virginia from Idaho I was often asked by professionals what an eating disorder was. I was pretty sure that a mental health professional should at least have a basic understanding of eating disorders. Clearly, I was wrong in my assumption. Because of that experience I've been weary of "professionals" in the area. If they don't know Bulimia when it's staring them in the face how are they ever going to be capable of diagnosing me with anything else correctly?

Granted, having a diagnosis won't mean anything to me personally as my family and I know that AS has been the cause of my struggles and that's good enough for us. It's actually improved my relationship with my family so if it were only for my own personal edification, I wouldn't be so worried about another misdiagnosis. My University, on the other hand, isn't going to just take our word for it and today it became apparent that I'm going to need some accurate documentation.

I'm currently in a public speaking class and while I've done excellent in college up until this point, (in honors program, on the Dean's list) this class is already causing me difficulty. I recieved my first graded speech back today and was docked points for my inability to make eye contact. In all likely-hood, I'm never going to be able to speak in public (nor do I ever plan on it) and make eye contact. It just won't happen, it's one of the strongest manifestations of my AS and most people aren't bothered by it and don't point it out. But now it's causing me an issue for the first time in years. The only way I can stop it from effecting my grade is to get a verified diagnosis of AS so that Disabled Student Services can make accomadations for me in regards to the eye contact issue of grading for this class.
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"The boy on the blue moon dreams of sun"
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