DSM change justified due to pandemic of AS misdiagnosis

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Firstly, thanks to all who have participated in this thread for your well thought out opinions and informative posts. I would like to reply to many of these posts individually, however for now I will answer in a more generalized way as I'm short on time due to studying for exams.

Firstly, I do have a tendency to engage in black and white thinking. I try to regulate this as best I can. This is not because I have sinister underlying motives. Black and white thinking is a trait associated with Aspergers.

Aspergers has changed. I think other people diagnosed 10 or more years ago like myself (13 years ago) would agree with me. This does not mean I believe I am a member of some exclusive/elitist club. Ironically, this accusation is a good example of the change I speak of. 10+ years ago aspergers was not synonymous with "club", the whole 'Aspie culture' just didn't exist. When I was growing up, my family, myself, my teachers, everyone we knew, nobody had ever heard of Asperger's syndrome. My mother had taken me to see specialists since I was 4 but nobody diagnosed me with it until I was 12 and a substitute teacher for my class told my mother that traits I had reminded her of a syndrome described in a book a friend of hers had. In fact, I think I was 6 when the condition was first made official in the new DSM.

I'm digressing here but where I'm going with this is that things have changed dramatically in the last handful of years, and I don't think anybody can contest this. These days it's hard to find anybody who hasn't heard of aspergers, and an entire culture/group mentality has sprung up around it. For many, aspergers has become a badge of pride. Some even go so far as to see the world through an "us" (aspies) vs "them" (NTs) perspective (Oh yes, I personally know people who have gone down this route and its a slippery slope).

This leads me to two questions:

1. is this a good thing? With the exception of the "us" vs "them" and aspies are superior elitist mentality, I argue yes. People at the autistic end of normal will by their very nature feel misunderstood and like they don't quite belong anywhere. Anything that gives then a sense of identity and belonging is therefore a good thing. I'm not talking about borderline cases here, I'm talking about normal people with autistic traits. Which brings me to my second question:

2. Is it appropriate for these people to be self or officially diagnosed with an actual psychiatric disorder (Aspergers Syndrome as defined in the DSM IV)? I argue no.

This results in a conundrum. Consolidating Aspergers with autism and making diagnostic criteria stricter in the new DSM will partially solve this problem by reducing misdiagnosis (a study found 75% of people currently diagnosed with ASD would no longer meet diagnostic criteria under the new system). However, multitudes of vulnerable people are left with an identity crisis. My proposed solution to this problem is to actually create a new "label" of being
on the spectrum that is officially recognized by psychiatrists while not being considered a psychiatric disorder. People with the "label" would not be considered to have serious functioning problems in daily life, but would still be recognized as being on the spectrum. Thus they would be able to gain insight and self understanding, and also be easily able to be upgraded into the psychiatric disorder classification if their severity worsened and they started having serious problems. This is because they already would have gone through the diagnostic process. Also, people such as myself who have significantly improved over time due to learning/developing better coping skills/whatever, and are not currently and have not for a considerable while been (not counting people whose functioning fluctuates fairly frequently - they would still be considered as having a disorder) experiencing serious impairment could then be "downgraded" to being recognized as being "on the spectrum" but not suffering to the degree where it constitutes a clinical disorder.

In terms of borderline cases, I don't have a clear position as I agree that it's very difficult to define what constitutes clinically significant distress or impairment in functioning (this discussion has been directed towards more clear cut disordered vs non-disordered people).

Glider18 I appreciate you sharing your viewpoint about the importance of a positive outlook. However, you are not in the category of people I refer to (misdiagnosed people with autistic traits who are not clinically impaired in daily functioning).

Clearly, some Aspies are able to cope better than others. As Verdandi mentioned, there are numerous Aspies who have found success in their lives.

OK, maybe their symptoms are not as severe. Nevertheless, some Aspies are able to rise up and put themselves into a position where they can be successful in life (by focusing on their strengths and, to paraphrase Ettina, putting themselves into situations where they will do well). To no surprise, this is the same strategy that NTs take.

I think all of us (me included) need to get over this label. Who cares if it's being over utilized. I will quote Temple Grandin from her latest book (“The Autistic Brain”):

I believe that diagnosing Aspergers based on impairments in day to day functioning has the effect of lowering the average IQ of those diagnosed with Aspergers.

This instinctively seems wrong to me, as Aspergers is generally associated with high intellegence in the public understanding. (But maybe many of you will argue that this is an out-of-date stereotype with has little relevence to actual sufferers. )

(To explain why diagnosing Aspergers based on impairments results in a lowering of IQ among those diagnosed.

The ability to overcome lifes challenges depends on 2 factors:
1. The severity of those challenges (dependent on Aspergers)
2. The ability to find ways to overcome these challenges (NOT in my view dependent on Aspergers, but rather, I suspect,correlates strongly with general intelligence.)

I.e people who are good at 2 will be underepresented among those diagnosed.

Although you have come at it from another angle than I was thinking of, this is a good point that ties in with what I said about masking.

Intelligence varies between individuals with Asperger's. There is a very good chance that those at the higher IQ level will find creative and uniques ways of helping them to get through day-to-day, this isn't the same as saying they are coping or not suffering marked impairments. The more intellectual someone is, the more likely they are to be under pressure to perform a certain way. I would be interested to know if those are also the types who suffer more co-morbid mental health issues as a result and end up on medication for years because of trying so desperately to hide their traits and conform whilst knowing that they are so different and it's such a struggle.

Speaking of conformation, I, like other Aspies on here, do not stim in public (but do so all the time at home), this is a type of conforming and masking. So going by sunshower's and daydreamer84's criteria, anyone who is able to hide their AS sufficiently, no matter what torment or hell they are going through inside, is a fake Aspie that doesn't "deserve" a diagnosis.

There is a saying, walk a mile in another man's shoes before you judge him. In other words, stop interpreting what "significant impairment" means by your own standards, until you have tried on the shoes of all other Aspies and walked a mile in them, you have no idea.

I will just have to put down the narrow, restricted and B&W thinking of the aforementioned posters to their AS. It makes me kind of relieved that the clinicians and people who set the criteria are NTs who are far less likely to get stuck in one narrow way of seeing things.

I await with bated breath, the evidence of this substantial group of people, responsible for a plethora of misdiagnoses or erroneous self-diagnoses (and which was so widespread that it had the result of forcing the revised DSM) .

I don't WANT it to be Asperger's or anyplace at all on the autistic spectrum. I've spent my whole life believing there's "nothing different/wrong with me" yet wondering what the hell was in fact wrong with me, and suffering serious consequences of exhaustion and meltdown for even the effort of trying to fit in. Who wants to think that they are anything but "just like everyone else"?

I was normal, I inwardly screamed to myself up until very recently --- except for all the CRAP I've lived my whole life going through, and never feeling "normal" at all.....which I couldn't explain either at the time or even when I was sitting here denying that what I was hearing about spectrum disorders was in fact me.

It has taken me YEARS to stop denying that every time I ran into something to do with Asperger's that all the bells of recognition went off in my head. I fought and fought to deny to myself that this has ANYTHING to do with me.

So when I read your OP, it felt like a slap in the face. This isn't a club I even wanted to join, thanks. I'm on this website now because the very idea is upsetting to me and I don't know what to do or what to think.

All this rings BIG bells for me, well said and not at all ranty!

O.K. that went wrong - all that came before the big bells bit at the bottom was a quote! Is my face red or what?