Wrong Asperger's Self-Diagnosis

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Well for one it is possible for doctors to mis-diagnose, especailly with mental things considering there is a lot of room for variation not everyone fits perfectly into one catagory. So maybe the doctor was wrong, you could go to a different one and see what they say or tell the one you went to you that you think something more then mild anxiety and depression is going on, and maybe he will re-evaluate.

Speaking of acting like an NT...

And here lies the root of the problem. Unfortunately, nearly all psychiatrists/psychologists have no real training to detect deviations from their typical patients. They tend to stick to what they are familiar with or understand, or to what they've been told to treat (yes I believe that some organizations do not want to bother treating people on the spectrum-it's costly & time consuming). This is not to say that there are specialists out there who don't specialize in treating people on the spectrum. My beef is that those who are experts can cost a person a lot of money. Most people on the spectrum don't have an unlimited income & have to go to doctors who are covered by mediocre health plans because they are affordable. Doctors only recognize a trait or 2 for anyone on the spectrum. Unless it's their specialty (those doctors usually focus on kids only), & if the patient doesn't exhibit those obvious behaviors like hand-flapping or lack of eye contact (due to age or their symptoms manifest in a subtle way due to years of having to cope with RL), they don't know what to do with that patient. It's insulting when they gather up their expertise & insist it's something else without looking at the obvious. Besides not everyone responds identically with all manifestations. They have no clue what to look for, nor do they listen to the patient about what said patient is/has experienced in life. Life experience is something doctors need to pay attention to & address as well as what the patients is dealing with presently. Life experience speaks volumes for what most of us have endured, but shrinks tend to dismiss them without actually delving into one's past to get concrete answers if one is over a certain age. Nor do they want to spend money on testing, even though the tests would give them concrete answers. It's all very frustrating!

Also because these doctors feel they've gone through all the classes, training, research, they have the actual knowledge to understand something a patient never could. They really believe that they are experts, but there's a lot about the human brain that doctors still don't understand. They know very little about the origin of AS or Autism. But they become closed-minded to even thinking about the issues differently. It's like they have this equation in their mind that if the patient is experiencing symptoms X, Y, & Z, that patient has a manifestation of N. They never look beyond their simple equation because it's concrete & set in stone, even though X, Y, & Z could be part of a bigger equation. Even though said patient has lived with said condition since his/her earliest memories. Give the patient some pills & send them on their merry way! Even if the pills could do more harm than good, better to start with something the doctor understands first.

I've had multiple doctors blow me off because all they wanted to see is the normal stuff that they've become accustomed to treating (bi-polar, depression, etc). It's as though the doctors only wanted to treat symptoms that he/she was familiar with & comfortable treating, things that currently affect me. What they fail to realize is that I am the product of a lifetime of frustrations & experiences...it's not just like I got this mind/body yesterday & don't know how to deal with it. I've had the very same issues for most of my life going back decades to my earliest years of life. Nothing has changed, except I now have a name for the symptoms because I have read books, & done research. I've also taken tests online which point towards AS. So how does one go about opening the eyes of doctors who just can't see the obvious tree in front of them for the forest? I have become an expert on my experiences with AS. I can't speak for anyone else on the spectrum, though I know others personally who exhibit behaviors that cause me to suspect they could also have it. I am not an expert on them....but I do feel I am an expert on me. After all, I have resided inside this body since birth. I think doctors should take that into consideration when talking to a patient instead of treating us like we are all idiots who know nothing about our experiences in life. That's arrogant & rude, & if the shoe were to be placed on the other foot, I'm sure they would not want to be dismissed on what they know about themselves either. I guarantee it!

Sorry this is so long, but this has been something that's bothered me for some time. I guess it's become a passion.

Tomboy

Aspies never tease one another after they learn and master the concept? I'm finding this whole idea that 'Aspies do NOT do this and they MUST do this' a bit hard to wrap my brain around. That sort of thinking sucks the color right out of the spectrum...

just a thought..
I have no idea about the actual statistics, but there are some that are self diagnosed and some who have an official diagnosis. (including Luke Jackson, author of freaks, geeks and asperger's syndrome)

Some of those who do have an official diagnosis most likely self diagnosed before (and perhaps leading to) getting the official diagnosis. does that make them both self - diagnosed and officially diagnosed? Or does the self diagnosis get dropped in the event of an official diagnosis?

I believe I have aspergers, at least nothing else I know of explains my world so perfectly. (my son has been refered for diagnosis and thats where I starteed) My doctor told me there are no experts in my area qualified to diagnose asperger's in adults at the moment, so I am not likely to get an official diagnosis yet.

My AQ score is 43, I'm a female in my 30's. I suppose that makes me self - diagnosed.

I totally relate. For some reason, some doctors think that they are the experts on your mind. I've had them tell me what I think and feel and get it 100% wrong. I had to correct them all the time and tell them that's how they would think and feel. I told them to stop projecting themselves onto me, because my brain doesn't work like their brains. I told them how my brain worked, and what I told them surprised them. They were so focused on the outwards behavior that they couldn't think of anything that might be causing it and how that might be different from what they themselves experience. I lectured them on the differences. They couldn't get a word in edgewise during my lectures. I think that was the #1 reason they started considering AS instead of the more familiar conditions. The stuff that came out of my mouth sounded too different from their own experiences, and I had no regard for their positions as "experts".



Doctors really have problems with Theory of Mind. They don't realize that other minds don't work like their own. Also, they often have problems with rigid thinking and a serious lack of imagination.

I just remembered this one group I went to where I brought up my social and communication problems. I mentioned that the word "paranoia" in the context of social paranoia. And also said that people were trying to "control" me in the context of pressuring me to fit in and become just like them. And the two therapists exchanged glances and seemed nervous. Weeks afterwards, I figured out that they must have been thinking "paranoid schizophrenia".

Firstly, I do realise there must be good and competent doctors out there - but even those good doctors let us ALL down by not tearing down those of their profession who are total idiots. Good or bad doctors they're all part of "the club" and look out for each other. Magistrates are the same.

Yes, by now I'm quite cynical and bitter.

Secondly, the problem some (most? ) doctors can have is the same as other normal people - that they genuinely don't seem to grasp the concept of AS being a real physiological condition. It's like they assume anyone presenting with an arm that's twisted into an awkward position and sore as a result is that way because they're HOLDING their arm in that position - they then seem to figure their task is to work out whether it's deliberate or unconsciously psychological.

In either case they take it as given that the arm itself is basically fine and the discomfort is "simply" from it being HELD there. With Autism - including AS it's of course because the bones or ligaments are ACTUALLY the wrong shape and / or size - causing the twist and the resultant pain. Doctors who understand there's a difference are the good ones - the others are idiots.

I had to doctor shop to get a knee problem resolved. It was a torn ACL, yet 3 visits to 2 different doctors yielded no results, despite me being in quite bad pain.

I did my own research, made an appointment with a sports injury physician who was able to order appropriate scans and found the tear.

If something as black and white as a torn tendon couldn't be diagnosed properly, how can any mental illness be 100% accurately diagnosed by one visit to a psych ?

One psychiatrist I saw last year couldn't remember me from the previous week's visit, and left me sitting in the waiting room for an hour, despite looking directly at me, several times. That scared me off.


Some people may be after a diagnosis for monetary gain, but I'd suggest that a large proportion of people are simply trying to work out where they fit, and why things that NT's seem to do automatically are such a struggle .......

When - yes I have decided I WILL get assessed - go to get an assessment done I'm going to ask if AS can be confirmed or not, but the finding NOT be an official one of any sort. I'm personally concerned about professional ramifications.

My biggest worry however is mis diagnosis - and don't get me wrong - if the first doctor CONFIRMS AS but I'm not happy that they were a competent person then I'll continue "shopping" until i'm personally happy that the diagnosis - whichever way it is - IS ACCURATE!

I agree. Accuracy is paramount. An accurate diagnosis should be a theory of mind that accurately predicts the person's external behaviors and internal thinking/feeling/perceiving processes causing those behaviors in a variety of specific situations. There is no way that I would have accepted an ASD diagnosis if it had failed these tests. The problem with many doctors is that they don't know the right questions to ask to distinguish ASD from more common conditions.

Regarding labels, I think the label is important, even if it is not an official diagnosis used for school or work accommodations. The reason is that everyone already has a label, whether or not they have ever visited a mental health professional. If a person has ASD and is not officially or self-diagnosed, then the person carries the inaccurate label of Neurotypical, reflecting a theory of mind that utterly fails to account for their thoughts/feelings/perceptions/behaviors. The label is useful for understanding the person, both understanding of self by the person and understanding of the person by others, such as family and friends. This is the point of a self-diagnosis, which is not used to gain sympathy or fit into a group. It is used to gain a greater self-awareness to recognize your strengths and weaknesses and why you have them so you can make more informed decisions about your life instead of bumbling about totally confused by what you're doing wrong and why you're struggling so much in a world designed by and for people not like you.

No one know's anything these days. After doing some research and speaking with different people, I've come to the conclusion that most kids who really have aspergers are brushed off with anxiety (although that is a big part of AS), and the ones who do get diagnosed turn out to just be brats with tempter issues. Most of these "doctors" are just going by the textbook, and have never dealt with a true aspergian before. You need to see multiple doctors to get a proper diagnosis.

Why does it matter? It's just a name. If you have "aspergian" traits, and advice on how to treat/deal with those symptoms are helping, than what does it matter what name you put on it? Even if your intention was to be cured, there aren't any magic pills the doctor can give you anyway. "Oh, you have aspergers? Here you go, all better!"

Last edited by boxxarom on 17 Jul 2011, 1:17 am, edited 1 time in total.

^^^ This

Your first paragraph...does that explain vhy regardless of how much I do "practice" I always go back to my default setting of being alone?

Talk about a thread that won't die.

Anyone notice the OP started this five years ago, and hasn't posted anywhere on WP in 2 1/2 years?

This thing taken on a life of its own. Wonder how long it stay alive?

I self-diagnosed sometime around 13-14, and was officially diagnosed with PDD NOS at 15.

At 15 or so, I talked to a psychology professor about a research idea I had, and she said I seemed to know more about how to do research than many of her graduate students. Throughout my teens I obsessively researched not only autism but pretty much everything in DSM. I would often spend the whole day (I was homeschooled) studying psychology.

When I took 1st year psych at the age of 20, the only time I learnt anything new was when my prof got sidetracked into lengthy monologues about practicing psychotherapy. (Not that I found the class boring, because I enjoy reviewing obsessions almost as much as learning new stuff about them, and my prof was a very entertaining person.)



Myth. Supposedly, there are these hordes of people using self-diagnosed AS as an excuse for poor behavior, but I have yet to meet a single person on any of the numerous forums I've frequented who meet that description. I've met some people with AS (self or officially diagnosed) who were also jerks, but didn't use AS as an excuse. I've also encountered one person who has an official diagnosis of AS and uses it as an excuse to be a jerk.

I suspect it's that many people either bullied nerds or were bystanders to the bullying of nerds, and think it's horrible to bully someone with a disability. So in order to keep themselves from realizing they've been party to bullying people with autism spectrum conditions, they try to deny AS exists except in the most extreme cases.



Maybe because they're experiencing 'clinically significant impairment'. Or maybe it's because they feel different and want to find 'their people' who they fit in with. (If the latter, then they don't need an official diagnosis for that.)



My brother's teacher decided he has AS mainly on the basis of him having a conflict with a clique of girls in his school (while being reasonably well-accepted among the boys) and acting weird. He's BAP, but not AS. I sort of see AS now taking the place that ADD had when I was in school. as being the condition teachers randomly suggest when a kid has a problem.

However, when it comes to undiagnosed adults being assessed, AS is far from trendy.



Indeed. No studies have assessed this.

Sometime I'd like to bring in a bunch of self-diagnosed aspies and have them assessed by well-recognized experts in AS, and see what percentage meet criteria for autism spectrum. But that study has not been done yet.



That wouldn't explain AS because there's no pill for it. It's also fairly low-incidence. Depression and anxiety disorders are the ones that are scarily common diagnoses.



That's why I gave up on psychotherapy and decided to just treat my PTSD myself. Here is a blog entry I wrote about that.

Anyway, I'd like to point out that most self-diagnosed aspies, even if they're wrong about their self-diagnosis, probably have something. For example, ADHD or OCD or a personality disorder (and not in the veiled insult sense!).

Oh, and frustrating diagnosis story for me: I'm hypermobile (overly flexible, causing joint pain and coordination problems). I went to a doctor regarding my joint pain and told him that I thought it might be hypermobility, showing him how I could twist my limbs up in knots. He said I couldn't have hypermobility because I didn't have knee pain (I'd mentioned ankle and hip pain). I told him that I actually did have knee pain (which was less severe than my ankle and hip pain), but he acted like I must be lying about that because I wanted to have hypermobility. (I didn't mention that also knee pain isn't required for hypermobility, just common.) He decided to run a blood test for arthritis.

I went and got the blood test done. For several months, I waited for the results. Finally I went to the doctor for something unrelated (I think it was the flu) and happened to mention that I hadn't gotten the results from the blood test. He said 'oh, it was normal, so we didn't contact you'. Never mind that I was still having joint pain and they didn't know why!

Much later, I got physiotherapy for a neck injury, and finally got diagnosed as hypermobile by the physiotherapist.