[yagr]

I am looking for anyone who has any information relating to or was misdiagnosed prior to receiving a diagnosis on the autism spectrum. I am a fifty year old man who is confident that I have Asperger's Syndrome. Since the autism spectrum wasn't discussed much when I was a child, I believe that it was simply not recognized.

Normally, I would be unconcerned. I've figured out a way to live in the world and get by within acceptable parameters. However, I am currently seeing a therapist and psychiatrist and have been referred for a full psychiatrist battery of tests (minus a diagnostic test for autism) for diagnostic confirmation of the psychiatrists pet theories about me. He's wrong.

I would like to make a pitch to the psychologist who will be administering the psych test to include a test for autism. If I can draw a parallel between the diagnosis's that my psychiatrist is considering, and other autistics past misdiagnosis's, I feel I might have a convincing argument.

[Tessie62]

Hi yagr!
I wish I had some advice to give you. I too think I'm on the spectrum. I have my first appt. with a psychiatrist Sat. morning but it was scheduled for my "other issues". I will be bringing this! As old as I am (53) it's time for closure. I stumbled on an article about late in life diagnosis on Adult Women with Asperger's. Wow! Talk about an eye-opener. I didn't know what to feel....sadness or relief.

I've suffer from anxiety, ADD, panic attacks and other issues. My gut tells me I've been misdiagnosed for many years.

I do hope you find closure on this issue. It's difficult enough growing/going through life "feeling different" and only now at our age realizing.....

Good luck buddy!

[Miktis25]

Some Autists have been previously misdiagnosed with Bipolar Disorder, and in the past Autism was frequently misdiagnosed as Schizophrenia

[-jimi-]

My story is an echo of the times that were. What was focused on at the time, I "had". I was so strange I must have the "new" and strange thing.

At first they thought you could only have neurosis, psychosis and borderline. So then of course I "was" borderline.

I had different kinds of anxieties and they actually understood I did.

I also developed depression but it took them three years to believe me since I have aspergers and my depression doesn't look on the outside as an NT's depression.

When borderline was narrowed down and other PD's were more stressed they shifted me into other PD's, such as schizoid, schizotypal and paranoid. It sort of makes sense, schizoids are loners, I am. schizotypals think out of the box, I do, paranoids will not accept you as better than themselves, same there, my aspergers makes me feel we're all the "same".

But at the end it didn't hold up and I become PD NOS.

Then to Europe came this cool new thing, bipolar, it wasn't the same old manic depression that I didn't have, but maybe I had this, cuz it was new and cool. Maybe it could explain why I was in such different ways at times.

After a while I didn't "have" it anymore.

Fiiinally, I got diagnosed AS. It is the only diagnosis part from anxieties and depression where I have actually fitted. But sadly I became diagnosed for the same reason as before, it was the new cool thing in medicine.

I think the mistakes they do is, either they misdiagnose with something uncommon because they sense you are so weird that you must have that. Or they want to diagnose with something serious and common because they can squeeze you in there and it is a DX they are comfortable giving because they have before.

For the latter reason I had to fight the DX of schizo, because since I look away a lot they thought I was looking at where the voice "was". Also I have a typical aspie humor so when I laughed I laughed in the "wrong" places and they think that is something psychotic people does.

[-jimi-]

It sounds pretty crappy of them to "test" for everything but autism. Autism isn't an obscure thing anymore, many get diagnosed and even the general population these days know what autism is.

I knew I had aspergers a year before my doc thought so. I actually hinted the right things. I made it look like it was a spontaneous comment. I didn't dare plain suggesting anything. I should add I was only sent to testing because of that, it wasn't the doc I "manipulated" that had the last say.

[-jimi-]

Sorry if I am snoopy but what does he want to test you towards?

And what do you think makes you autistic?

In a way with my first suspicion of aspergers, I don't even remember what they were! I just remember thinking "that is me!"

That you will be diagnosed this age is not especially weird, I am also a gen X'er and when I was a kid, autism was a nonverbal disorder. When I was 20, aspergers was a condition where you did not understand that other people existed or had minds of their owns, also you always lived day to day the exact same and you had to be in an institution. So they couldn't have caught me there because I was not those things. First after letting "light" cases like me in, it could happen. I would say that started about 15 years ago only.

And if you have developed ways of coping, they will not see it, oftentimes the person himself will not even see it. That they are different this particular way. If you are of high intelligence you probably learned to compensate A LOT. So, I am not surprised it took this long.

I think a diagnosis IS important. Not maybe for you, but for your treatment providers. I notice when I "became" an aspie after being personality disordered, the same behaviors were seen very differently. Before I was seen as defiant, a trouble maker. After I was seen as maybe stressed, pressured or not being on the same level of communication meaning misunderstandings.

[The_little_didgee]

My first diagnosis was borderline personality disorder. It never described my experience and I let the clinicians know it. They didn't appreciate it and assumed I was in denial. The BPD diagnosis was given to me, because they had no idea what to diagnose me with back in 1994. I was 16 at the time. At the age of 34 I was diagnosed with ASD.

[yagr]

First of all thank you to everyone who responded.

Originally Posted by -jimi-

Sorry if I am snoopy but what does he want to test you towards?

The are looking for diagnostic confirmation of schizotypal personality disorder.

Originally Posted by -jimi-

And what do you think makes you autistic?

Good question. My answer has evolved as I've learned more about it over the last few months. I'll answer this more down below at the bottom of this post. I've never given it much thought to tell you the truth, until recently. Over the years however, many parents and partners of people with Asperger's have asked me if I had been tested for it. Most recently, two people (from different families) from my sangha (church) who are parents of children with Asperger's. I had shared personal stories from my childhood that led them to believe that I had a high likelihood of being somewhere on the autism spectrum.

With a recent ludicrous diagnosis of schizotypal personality disorder, I decided I wanted to know what the truth was and began researching. What I found was liberating in a sense - recognizing myself. As you said:

Originally Posted by -jimi-

In a way with my first suspicion of aspergers, I don't even remember what they were! I just remember thinking "that is me!"

Originally Posted by -jimi-

And if you have developed ways of coping, they will not see it, oftentimes the person himself will not even see it. That they are different this particular way. If you are of high intelligence you probably learned to compensate A LOT. So, I am not surprised it took this long.

I am a genius and yes, I've learned to compensate tremendously.

One of the most powerful experiences that I've had that led me to believe there is something to this is anecdotal only and completely un-quantifiable, but it is my experience and it does not need to be measureable to be valid for me. It is recent conversations with someone who is autistic - and not a high functioning autistic. My brain doesn't hurt afterwards after talking to her. There is only one other person in the world that I experience that with and it is my wife. After fifty years of life, to find only the second person I can talk to that I am not exhausted after talking to...that is noteworthy to me.

But okay, on to the quantifiable reasons for thinking I may have Asperger's:

As a child I never had friendships with other children. Ever. I failed in every social situation I was ever in. I fell in love with astronomy at age four; I wanted to be an astronomer for my entire childhood. By six years old, I was studying astrophysics. I was a musical prodigy. I had no other interests. Music and astronomy - and math as it related to both. My memory is prodigious, but only on certain subjects.

"Inside voice" was my mother's lifetime mantra - I learned to be silent and not speak. I have a severe case of prosopagnasia or face blindness. I cannot recognize anyone, even family who is outside of their natural environment. i.e. I can recognize the postmaster at the post office I go to daily but not if he is at the supermarket.

I take everything literally and have to translate it in my head before speaking. For instance, at my first therapy session my therapist asked me what brought me there. I answered, "My car." I can't answer questions on these darn psych tests, or even forms and questionnaires unless my wife is there to translate for me. As a child, I could not understand humor at all. At all. Never. I have since studied the subject extensively and compensate effectively.

In social situations that I cannot get out of, I tell stories that history has shown are effective and have become such an accomplished storyteller that people don't want to interrupt and talk back - which is why I learned to do it, so I don't have to make small talk with them - because I flat can't do it without exhausting myself and needing to go hide in a closet for two hours afterwards to detox.

I get sensory overload very easily and will shut down when overwhelmed. Changes to routine will send me into a tailspin and only a very focused effort will prevent a meltdown. As a child I could not make eye contact with people, though that was mostly beaten out of me and I learned to compensate the rest of the way - but still with people I trust implicitly (like this other therapist I have), I resort to old behavior. Despite my lack of ability to get along with other children, I was forced into sports to help me gain coordination, which I lacked.

I have echolalia. I am the master of circumstantial speech. I got straight A's in school throughout my pre-college years except for a complete deficiency during elementary school in handwriting to which I uniformly received C's.

I just realized how long I've been going on because my wife just said 'good night' so I'm going to stop there. Probably too much....

[yagr]

Originally Posted by The_little_didgee

My first diagnosis was borderline personality disorder. It never described my experience and I let the clinicians know it. They didn't appreciate it and assumed I was in denial. The BPD diagnosis was given to me, because they had no idea what to diagnose me with back in 1994. I was 16 at the time.

I was dx'ed with BPD in 1982. I was seventeen at the time. It never fit my experience and I let the doctor know it. They didn't appreciate it either. Heck, I've got Didgee Disorder too!

Originally Posted by The_little_didgee

Yagr, weren't you diagnosed with schizotypal PD?

Yes, this testing is for diagnostic confirmation.

Originally Posted by The_little_didgee

Don't you have Native American heritage?

Yes again.

Originally Posted by The_little_didgee

AS, social anxiety and Native spiritual beliefs can make it appear so. Make sure to mention your ethnic background. I'm Native and have had it used against me to justify the BPD.

I shall. I'm sorry this happened to you. Your time spent responding to this thread won't go to waste - thank you.

[-jimi-]

There is a strong link between at least moderate prosopagnosia and aspergers. I have never heard a link between it and schizotypal.

When I had the DX schizotypal I hadn't really heard much about aspergers. So I thought it could be possible. But thing is, if aspergers explains something within a personality disorder better than the PD, even if you reach up formally to the PD, the aspergers and not the PD DX are set. AS and PD can be set together in cases where the PD is very prominent. But it will never replace AS if AS explains things.

Now you might not have AS a diagnosis anymore but the same goes with autism spectrum.

Maybe find those symptoms you have that are exclusive for AS that don't exist in schizotypal.

[yagr]

jimi et al,

I sure wouldn't be mad ( ) if anyone weighed in on what I wrote and gave me your impressions on what the likelihood of me being dx'ed with Aspergers. I'd feel a lot better bringing up the idea of testing me for it with the test administrator if I had a bit more feedback.

I realize that none of you are diagnosticians and that you can not diagnose me. I'm not asking you to. But frankly, I trust your impressions more than the doctor's impressions at this point.

[-jimi-]

I don't know the likelihood, it seems to depend on your doctor rather than on facts.

I looked further into the DX of schizotypal and I must say, I have doubts it exists, at all. Of course one can cluster up symptoms and people will fit, but the thing is this particular group productive?

In a way I think not, because there seem very few people with this DX, meaning it's simply not a good way of grouping things. The other thing, I feel it is too close to autism to be considered a PD.

Symptoms can be

being a loner with only a few friends or close family as a social network - that is common with AS as well

misunderstanding social ques - VERY common in AS and autism

being seen as odd, acting, dressing odd - common in AS and autism

having trouble with some types of thinking - very common in AS and autism

misunderstanding and thinks things are connected to self that are not - very common with autism where there self is placed in the middle and sometimes other people are "forgotten"

social anxiety - common in AS and autism

hypersensitivity - common in AS and autism

odd perceptions and sensations - exists in some cases of autism

odd, poetic speech, not common with AS where speech tends to be formal, more common with autism especially the type where speech is more affected

not showing much emotion, reacting in a "strange" way - very common in AS and autism

magical thinking - exists in some cases of autism because of poor or different pattern thinking

has relatives with schizophrenia - common in autism


I have a hard time understanding how this is not autism with some kind of comorbidity.

[yagr]

jimi - I can't believe that I asked the question so poorly, my meds must have kicked in already. My question is, and you have my continued gratitude whether you return to this post or not, based on the self-description I gave, does is sound like AS to you?

You may have already answered above but sometimes I can have some problems reading between the lines.

[-jimi-]

Well, there is this rule here about not suggesting diagnoses to other members.

But, to me it sounds like what before what known as atypical autism.

[snickie]

I'm not an expert on psychological anything, but

Based on what I've read about personality disorders (not much), they are a diagnosis for when the symptoms develop post adolescence (you were this way before and now you're this way and nobody knows exactly why), whereas for autism and AS the symptoms had to have been present from a very young age even if you or people close to you didn't understand what they were. I think this is why schizotypal has its own diagnosis even though it seems to me (based entirely on jimi's description btw) to be something like a late-onset AS.

Are you prepared to bring in your parents and other people who knew you as a child for these AS tests?

[yagr]

First, thanks for weighing in.

Originally Posted by snickie

... whereas for autism and AS the symptoms had to have been present from a very young age even if you or people close to you didn't understand what they were. I think this is why schizotypal has its own diagnosis even though it seems to me (based entirely on jimi's description btw) to be something like a late-onset AS.

There was nothing late onset about my symptoms though - it was just that fifty years ago, AS wasn't really on the radar. In fact, it's taken me a lifetime to learn to compensate sufficiently to survive, but my symptoms were more marked as a child.

Originally Posted by snickie

Are you prepared to bring in your parents and other people who knew you as a child for these AS tests?

Not possible, due to death and declining health for my parents. No one else really knew me - never did have friends. Probably the closest thing to a friend I had were some of my teachers in elementary school...as I suspect the majority of them are gone as well.

[Lexi232]

misdiagnosis's... yikes have i had them... so many.. and at one point i had a paragraph long of them and most had "NOS" at the end. in my case that meant "we get more funding if you have these. and since you dont fit under the actual dx's we will diagnosis you with them as not otherwise specified."
Now i like the NOS drink. but the NOS of dx's i didnt lol.
my very first diagnosis was autism, (i was 4yr), altho at that time my family saw it like it was a death sentence or cancer or something, and the rejected it. it kept coming back. and back. and back. and now its back and the rest got tossed. oh, and kept the actual accurate dx's that i had. but since age 4, i had been diagnosied/rediagnosed with add/adhd, depression, manic depressive disorder (when i was 7yr), generalized anxiety disorder, social anxiety disorder, agoraphobia, elective mutism, borderline intellectual functioning, bipolar nos, mood disorder nos, borderline personality disorder, ptsd, combat ptsd, ummmmm... and a lot more. but right now its autism(correct), mood disorder nos(incorrect), and depression(correct).

i have noticed that some of those diagnosing generally somehow often have a hard time pinpointing between autism, borderline personality disorder, and add/adhd (thats just in my experience and knowing a few other people with the same kind of experience).
and at one time a really long time ago, those children who had autism at that time would be diagnosed with childhood schizophrenia.

also another interesting fact is that treatment for mental health first started when a bunch of patients who were in state hospitals was getting sick and they were given cough mediciene and that seemed to help a few if them with their mental health symptoms. and thats how the first medications started.

[muffinhead]

I was misdiagnosed with bipolar before Aspergers. It was partially of my own doing, as I had bias towards being diagnosed with bipolar, but was also due to the fact that the first psychiatrist I saw was an idiot. Try to find the best psychiatrist in your area for a diagnosis, it helped me immensely and could possibly do the same for you.

[The_little_didgee]

Personality disorder develops in young adulthood. People with it understand social cues and have no trouble decoding them. They just misinterpret them because of anxiety and paranoia.

Schizotypal PD is considered a schizophrenia spectrum disorder. I believe it is the prodromal phase that fails to develop into psychosis. My experience with psychosis seems to support this.

[ToeJam]

Was a bit reticent about posting here until I got today out of the way (final NHS asd diagnostic) which during the 2 years since I was first referred to the clinic I've had borderline thrown at me (which I argued vigorously against and they changed it to 'exhibiting personality traits )

But yeah... 38 and got my 'official' dx today.

[Fuzzybear]

grrrrrrrrr, I think I need a muzzle on so I don't voice my thoughts on the above (re NHS )

[catnip123]

I was diagnosed many years ago with depression and anxiety, but was only diagnosed with Asperger's a few years ago at 49.
Now the therapist that diagnosed me is moving away and I have to find a new one. I'm concerned about what the new T will have to say about this diagnosis

[AutismParenting]

I never had a formal diagnosis and I doubt I will ever get one. Since the start of DSM V Aspergers seems to have dropped off the map and many that would have qualified for a diagnosis no longer do any more. Sometimes the best we can hope for is the symptoms that we have or using some kind of online test for aspergers. Depending on what country you live in, it is not always possible to see a doctor or specialist even.

[-jimi-]

If you look at the DSM criteria for autism it is looser than they were for Asperger's. So even if you cannot get a diagnosis of Asperger's per se, it is actually easier now to get diagnosed, as having autism.

[PrairieCat]

Originally Posted by yagr

I am looking for anyone who has any information relating to or was misdiagnosed prior to receiving a diagnosis on the autism spectrum. I am a fifty year old man who is confident that I have Asperger's Syndrome. Since the autism spectrum wasn't discussed much when I was a child, I believe that it was simply not recognized.

Normally, I would be unconcerned. I've figured out a way to live in the world and get by within acceptable parameters. However, I am currently seeing a therapist and psychiatrist and have been referred for a full psychiatrist battery of tests (minus a diagnostic test for autism) for diagnostic confirmation of the psychiatrists pet theories about me. He's wrong.

I would like to make a pitch to the psychologist who will be administering the psych test to include a test for autism. If I can draw a parallel between the diagnosis's that my psychiatrist is considering, and other autistics past misdiagnosis's, I feel I might have a convincing argument.

Hi...I am on the autism spectrum and was misdiagnosed with bipolar disorder. I took the psych meds for 17 years like an idiot, never questioned it as I was so sedated by insane psychiatrist. She kept giving me meds for mania. I was a thousand miles away from mania, never, ever had it. I asked the therapist what was mania and she had no answer except to say, "Well, hypomania must be what you have when you get a little happy or excited about something. Hypomania." Well, it ruined my life. But now I know the answer for EVERYTHING and that is wonderful!