I’ve been noticing a new trend as of late – and frankly I find it a bit disturbing. There is a large amount of people on Aspergers support forums who claim to have Aspergers but really may not – they are self diagnosed. While some of these people may in fact have Aspergers, there is no doubt some of these people claim to have Aspergers as its the new emo – in other words a way to claim to be different than everyone else.Many of the people on the Autism and Asperger support websites are there legitimately seeking support for a diagnosed condition, this used to be a really useful tool for seeking support but as of late its been all but helpful. If you look on support websites such as Wrongplanet you notice what was intended as a support website is all but a support website, people with a legitimate and diagnosed condition are often trolled and harassed by those who claim to be self-diagnosed.
Self diagnosis in itself is a inaccurate and possibly dangerous thing. Doctors never recommend self diagnosing people for one reason – people are not good at evaluating their own conditions and they often tend to think the worse possible. Also Aspergers is often mis-diagnosed by professionals as other conditions which can be treated – but if not can result in violent and deadly behaviors, depression and even suicide.
I have yet to see any of the larger people in the Autism and Aspergers advocacy movement address the rise in self-diagnosis. This is most likely due to it being a tense issue, however would like to hear some opinions from people on this.
WARNING: Opinions are not attacks, as this is a tense issue I want oppinions on the issue at hand, not oppinions on me or other commentors – They will be deleted!
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{ 32 comments… read them below or add one }
I agree with chaoticidealism and AnneC.
While disabled people occur in nature, diagnoses are man-made. Diagnostic categories and criteria change all the time. For one thing, the DSM-IV PDD committee is seriously considering getting rid of Asperger’s and PDD-NOS altogether and just using “autistic spectrum disorder.”
I was first diagnosed with nonverbal learning disorder (NLD) in the early 90s, and fit enough of Byron Rourke’s criteria back then. (I’d had years of neurological testing by then which all showed the same things pretty reliably). By 2000, Rourke drafted a set of criteria for the International Classification of Diseases that had some differences from his criteria I was diagnosed with. (Like subjective qualifiers that weren’t in the older stuff: “extreme deficits in social perception,” for instance). I *don’t* meet enough of the new criteria; if the version that exists now ever became official, I wouldn’t have NLD anymore, even though nothing about me has changed.
Professional diagnosis is just a way to categorize different kinds of people, and is as subject to personal biases and subjectivity as anything else.
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I was one of many who self-diagnosed, but I realized that I could have been on the wrong track. So I sought out and easily got diagnosed by more than one professional, although one diagnosed AS and the other PDD-NOS.
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I agree that there’s a lot of self-diagnosis that’s very questionable. And I say that as someone who is self-diagnosed. I think that the younger the person, the more likely they’re going to self-diagnosis incorrectly, usually on the basis of limited information. They see an article or blog post about social difficulties or some other symptom and think that’s their problem. Accurate self-diagnosis requires extensive reading and an understanding of the complexity of the spectrum, and very close and honest self-examination.
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The other thing I’ve heard is that an adult with an ASD diagnosis risks losing health insurance or finding himself unable to get life insurance.
The problem with ASD diagnosis is that everybody is so different. I meet kids with AS diagnoses who don’t have special interests, don’t talk like “little professors,” had late speech development, etc. Many of them have ADHD-type behavior, are picky eaters, and have sensory issues, and this is interpreted by some clinicians as Asperger’s. So I would say there are just as many medical AS diagnoses that are incorrect as there are self-diagnoses.
I seem to recall from Pretending to be Normal that even “Asperger’s spokesperson” Liane Holliday Willey is self-diagnosed (although perhaps she has since gotten a medical diagnosis?).
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Hi, Yes, I have been diagnosed by three clinicans- Tony Attwood,, Rich Howlin and JoSharon Mutcher (MD)
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Personally? I am not worried about self-diagnosis really at all.
If someone is not actually autistic they will more than likely get bored eventually with the idea and move on to something else.
If anyone of any neurology is harrassing or trolling others, that needs to be dealt with on its own terms, but I don’t think diagnostic legitimacy has much if anything to do with how that ought to be dealt with.
I think that dwelling on the legitimacy of other people’s diagnoses is unhealthy. That is my opinion. I think that sort of thing will sort itself out in time.
It *would* bother me if a lot of sociopathic serial killer types were running around claiming they were autistic based on bad and ugly stereotypes about autistics supposedly “not caring about anyone else”. But that seems quite rare.
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This is a very touchy subject and I commend you for taking it on. There are some self diagnosed on the Hub, there are also some famous diagnosed folks who write books that have had their diagnosis critically examined with some pretty convincing evidence to contradict the diagnosis.
There are some undiagnosed that I believe are on the spectrum much more than those that are either diagnosed or self diagnosed.
I do think there is a danger to self diagnosis. I also think there is a danger in unqualified clinicians diagnosing people.
There are certain forums that attract “autistic” people where I don’t find anything in common with in communication style, there are other forums where AS (identified as diagnosed folks) clearly shows in videos. I’ve found the YouTube AS audience much more similar to me than the forums you mentioned. What makes YT different than the other forums is that it isn’t typically used by people with AS to “chat” but to “rant”, which is far more my style. CS – Officially Diagnosed by UNC – Chapel Hill TEEACH Center, 2005. l
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The problem with self-diagnosis is that in many cases a professional diagnosis is hard to get. If you’re in your thirties or older, you were probably never evaluated for autism as a child because nobody knew then that you could talk and still be autistic. And now that you’re in you thirties-plus, nobody who works with adults will expect a “childhood disorder”. What’s more, the diagnostic criteria were designed for children, not adults; so somebody who as a child would have been diagnosed with Asperger’s often does not match those same traits as an adult for the simple reason that a lot of those traits change as you mature and learn more… Many diagnosed adult Aspies were self-diagnosed before a professional confirmed their suspicions… Oh, and many professionals are really pretty bad at diagnosis, so even a professional diagnosis can be incorrect. The most likely state of affairs is that that some self-diagnosed people have subclinical autistic traits (non-diagnosable “spectrum cousins”), but these people still do share a lot of traits with people who are diagnosable as autistic. That might make them technically non-autistic, but not by much… one doesn’t self-diagnose Asperger’s if there aren’t actually any problems with socializing, deficient or different non-verbal communication, stims or special interests.
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