My issue with "self diagnosis".

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I very much agree with this. Personally at first I noticed some things about my stepson, but didn't know anything about AS at the time, then one day I read an article (a very long article, about parents struggling and not knowing why their child was the way she was, and they found out after many years that she had AS) and it could have been about my stepson, it was an eureka moment. After that I continued reading and learning more and more about AS, and the more I read the more I was convinced that my stepson had AS, and I soon realised that I had AS as well, but certainly didn't come to this conclusion lightly, nor because of one or two "symptoms" or personality traits, nor after reading 1 or 2 articles. And I have also read about other "conditions", bipolarity and AD among others, so I know the difference (one doesn't necessarily exclude the other tho).

Also I don't feel getting an official diagnosis would change anything for me, plus I don't have the money to get one.

I wonder how many other people have noticed that those who self-diagnose are never wrong about their so-called "diagnosis" ( ). Didja also notice that even though a highly competent, appropriately trained, and legally licensed mental-health professional can be wrong, but never, ever a an incompetent, untrained, unlicensed self-diagnosed layman?

Ya gotta love religion and its faith-based claims...

... not ...

Those pesky experts, why do they bother spending so much time for studying and training, if people can just approach an average joe for such medical opinions? Sounds a lot easier.

This appears to be a strawman. I don't see anyone claiming that self-diagnosis is never wrong. Or were you making another point? Your deeply held weird beliefs are making your sarcasm confusing.

screw religion and faith based claims.......how is forming an opinion based on what is known about AS the same as a faith based claim? If I am of the opinion I have AS and based it upon all the research I've done about it, the discussion me and the therapist i was going to had and observations about me from my family I hardly see that as anything like subscribing to a belief based on no evidence.

automatically believing a professional without doing any of your own reserach is much more comparable to religion and its faith based claims.

Exactly.

Well then ... stop pretending that self-diagnosis means anything, and get a real diagnosis - you may find that you don't have AS/ASD after all!

False dichotomy, Fnord. Self-diagnosis doesn't have to be perfect to be useful.

I found a research study through AASPIRE - an autism brain connectivity study being done at NYU Child Study Center. They were looking for both diagnosed individuals and those were self diagnosed. I was accepted into the study. All participants, dx's and self dx's are given a full five hour evaluation before the study to confirm the dx. It is the poor mans way into an 'official' dx. I am self diagnosed and they accepted me because I have a child that is already diagnosed by a highly accredited institution and they are highly interested in the genetic aspects of autism. I may be one of the missing pieces they are currently looking for.

They know that adults are underdiagnosed. They suspect a strong genetic, familial component. It stands to reason that in order to find those undiagnosed adults, researchers are going to HAVE to rely on those who suspect they may be on the spectrum and start from there.

Most doctors are not trained, nor proficient enough with high functioning adults to diagnose any other way than to post dx their childhood autism. Without that history, most doctors are at a total loss. And then there are the professionals who ignore a request for evaluation because you are 'not like Rainman' or 'not odd' or because you can make eye contact. It is NOT a small issue. It is a highly pervasive issue that hinders people from getting an informed, professional dx. There just aren't THAT many competent doctors versed in high functioning adult autism.

Self dx is a beginning. For some people, that is all they need. They may not have difficulties in their life that they feel need addressing with a dx. An 'official' dx is only useful to those that NEED HELP dealing with their symptoms. I get the sense that most people who self dx and who feel they need the help do try and get that official dx. It seems there are quite a few self dxer's here that have been proven right in their suspicions by an official dx. I would never have found AS if not for my daughter's dx. I would never have guessed that the problems in my life were all interconnected and could possibly be one pervasive condition. I'm sure there are a few people who misdisagnose themselves but I do not get the sense that there are many, especially not in the older age ranges.

Trust me - I would much rather not identify with AS. I'd much rather not have symptoms consistent with sound processing disorder. I would much rather not have the distracted thoughts and pervasive inability to maintain enough interest to finish projects common in ADHD. I would like to have an innate sense of time. I would like to remember peoples names and faces after meeting them several times. I would like to NOT be considered passive aggressive for asking so many questions about 'obvious' stuff. The list is much much longer... and irrelevent.

I have symptoms, behaviors and dysfunctions consistent with an AS/ADHD diagnosis - just like my daughter. Self dx is a start - it's a self realization and an acceptance. It is not taken lightly nor is it particulalry easy to admit - hey, I very well may be autistic. There is nothing desirable about having a developmental disorder. Obviously, it can have its positives too but who knowingly wants to stigmatize themselves? I'm not sure how I am taking anything away from those that are 'officially' dx'd. And, at least one professional organization is glad that I self dx'd and sought them out for confirmation. It's not like they can go door to door to find all those undx'd adults they KNOW, statistically, must be out there. If people do not initially self dx, how are they supposed to get help?

Good one. I almost fell for it.

Self-diagnosis had better be perfect, or certainly the treatment will be ineffective.

Is it just a migraine or is it a brain tumor?

Is it just a sprained back or is it a fractured vertebra?

Is it just a bad mood or is it insulin shock?

Is it just AS/ASD or is it BPD?

Giving yourself ineffective treatment is as bad as giving yourself the wrong treatment, as you will only make matters worse, even though you may think that you're getting better.

Here indeed we have the classic case of rigid thinking coupled with a startling display of the inability to see any other view as valid except for your own. One world view and it's my own - would be funny if it weren't so tragic.

Read draelynn's post.

Fnord - what exactly is the treatment for AS that people may possibly be doing so ineffectually?

The truth is that both formal diagnosis and self-diagnosis have the potential for being wrong; neither is 100% infallible. You might hope that a medical professional would have sufficient training and experience to make an accurate diagnosis, but regretfully this is not always the case. Some people can present with classic AS and still not get diagnosed; or can be diagnosed with something else only to be subsequently diagnosed with AS. You might also expect that an intelligent individual might with appropriate readings be perceptive enough to make a successful self-diagnosis; but this is also not always the case. Some people can convince themselves they have something that they in fact do not. So let’s not pretend that it’s clear cut. Formal diagnosis may not always be superior to self-diagnosis; medical professionals may not always be right. Some people might quite like the idea of having AS and so convince themselves they in fact do. Or might have something else like OCD and confuse this with the symptoms of AS. Each case is different and deserves to be judged on its own merits.
I think the main issue here is one of legitimacy. At this point in time rightly or wrongly, a formal diagnosis carries more weight and is seen as more legitimate. Because of this those who have, for whatever reason, not been able to get a formal diagnosis feel disenfranchised; and a little offended by the suggestion that maybe they are just making it all up.
So I think those with a formal diagnosis shouldn’t consider themselves as some sort of higher caste just because they can wave a piece of paper which backs up their AS identity. And those with a self-diagnosis shouldn’t pretend there aren’t at least some people who say they have AS because they think it’s trendy or makes them special.
On the Diagnosis dropdown on our WP profiles there are three related options. ‘Have Aspergers –Diagnosed’, ‘Have Aspergers – Undiagnosed’ and ‘Not sure if I have it or not’.
Think those with a formal diagnosis would rather anyone without such a diagnosis would choose the third option as the ‘Have Aspergers – Undiagnosed’ is nonsensical, as you can’t say for certain that you have AS without a diagnosis; it could just as easily be another ASD. I would therefore agree that the third option is perhaps the most appropriate for those without a formal diagnosis. But I would qualify this by saying that people will self-diagnose whether you like it or not, especially if they don’t have access to professionals able to offer a formal diagnosis. They also expect their views to be respected and their self-diagnosis treated seriously and not just as a flight of fancy.

This claim has not been made. It has been acknowledged more than once that self-diagnosis can be wrong. However, it is likely not because of the reasons cited in this thread, as many of the arguments in this thread seem to be an ideological opposition to self-diagnosis because professionals are supposed to do it and you might be wrong.

You haven't made a case that self-diagnosis is about faith in the absence of evidence. I'm not saying it can't be, but it isn't every time and may not be a majority of the time. But mostly, you're pummeling a straw man, and this discussion has nothing to do with faith.

Well put, Fnord.

And, heaven forbid that any of us who went through the process of getting a diagnosis should challenge someone's belief that their self-diagnosis is just as valid as a professional diagnosis.