DSM change justified due to pandemic of AS misdiagnosis

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sunshower
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14 Jun 2013, 11:05 pm

I've noticed during the time I've been a member of WP that a lot of people on this site, especially self-diagnosed and more recently diagnosed/self-diagnosed young people (older people with Asperger's are unlikely to have professional diagnoses because Asperger's wasn't around until the mid to late 1990's) have not experienced the kind of serious problems associated with the condition that others of us have. Added for clarification: (According to what they have said. I also reference people on other sites. Many people have explicitly said that they have never had any serious problems with bullying and other symptoms related to Aspergers).

I guess it's possible for a person with Asperger's to have always had friends and not been bullied (I don't count a few singular occurrences as having a history of being bullied - probably the majority of kids have been bullied at least once or twice during their schooling years) but I think this is highly unlikely considering the obvious idiosyncrasies, bizarre tone of voice, strange movements, and obvious lack of social skills and lack of social awareness (causing them to be unintentionally offensive to other children - which only fuels it) that characterizes a child with Asperger's Syndrome.

I do really hate to categorize/make assumptions, and I'm definitely not referring to everyone in this category, but it is a pattern I have noticed and I won't deny it. I think many people on this site don't have a clear grasp of what Aspergers actually is. Being verbally and physically bullied by multiple other children was a typical day for me, every day, for years and years of my life - and these weren't "one off" incidents - they happened over and over again.

As a child I was extremely literal, couldn't stand being touched, would dry reach (vomit with nothing coming out) at the feel of certain fabrics, didn't know how to use eye contact (had to be trained by my mother), was extremely clumsy and rocked/had strange hand and arm movements, had a "blank face" (didn't make facial expressions), talked non-stop and repetitively all the time about things I was interested in in a really loud voice so nobody could get a word in (for example, I once stood in a bank and talked loudly at the wall for 20 minutes straight without realizing my mother had actually walked away about 3 minutes in).

Yet when I was diagnosed at age 12, I was told that my aspergers was "mild to very mild", and I still agree with this. This was in 2000.

Today things seem to be very different. Many people who are self-diagnosed and even with professional diagnoses either only have mild issues or only don't seem to have any of these problems, and furthermore a large group of people are "pro-Aspergers" - saying that Asperger's is a gift and a positive thing to have, with some downsides but the upsides outway the downsides. This is wrong. Let me make an important distinction here: people with Aspergers CAN be gifted, or have skills, and it can even relate back to certain Asperger's characteristics, but having a diagnosis of Aspergers Syndrome by very definition means you have a negative medical condition that causes significant distress and problems in your daily life.

This is why it makes sense they changed the DSM. In the social sphere, Asperger's Syndrome is no longer perceived as a mental disorder, which is resulting in overdiagnosis and misdiagnosis of people who are not experiencing clinical distress due to Asperger's symptoms.

I am not saying that these people do not have autistic symptoms. I think that the majority of these people ARE on the autistic spectrum, however they should not be diagnosed with a clinical disorder and all that it entails.

This is the ultimate problem with the DSM IV; everything is "you either have it or you don't" so all those people who fall between the two options have nowhere to place themselves.

People on the spectrum should also be able to be labelled as being on the spectrum (without having to be classified as having a clinical disorder when they don't) if they so desire, so they can better understand themselves and their life experiences, and find others to relate to.

What say you all? Agree or disagree?


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Last edited by sunshower on 15 Jun 2013, 4:38 am, edited 3 times in total.

AgentPalpatine
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14 Jun 2013, 11:10 pm

sunshower wrote:
This is a massive issue in the category of ASD disorders as people on the spectrum really needing to belong somewhere, and find other people to relate to due to their different way of thinking and experiencing the world. The only way of doing this seems to be self-diagnosing with a clinical disorder (Aspergers) because they don't understand that a clinical disorder by its very definition must be severe enough to cause serious problems in daily life.


I may be mis-reading your post, does your post refer to all individuals with an AS dx, or those who "self-diagnose"?

In ethier event, I would not be surprised if some WPers consider needing to "Find other people to relate to due to their different way of thinking" to be "severe".


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sunshower
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14 Jun 2013, 11:22 pm

AgentPalpatine wrote:
sunshower wrote:
This is a massive issue in the category of ASD disorders as people on the spectrum really needing to belong somewhere, and find other people to relate to due to their different way of thinking and experiencing the world. The only way of doing this seems to be self-diagnosing with a clinical disorder (Aspergers) because they don't understand that a clinical disorder by its very definition must be severe enough to cause serious problems in daily life.


I may be mis-reading your post, does your post refer to all individuals with an AS dx, or those who "self-diagnose"?

In ethier event, I would not be surprised if some WPers consider needing to "Find other people to relate to due to their different way of thinking" to be "severe".


Sorry, I have been editing it a few times because my initial wording was a bit convoluted. I am referring to some people who have been recently self-diagnosed and some of whom are recently professionally diagnosed (reflected in the massive increase in numbers over the past few years). However, I am not referring to all the people who are self-diagnosed or recently professionally diagnosed. I am not saying these people are not on the spectrum either, but they should not be diagnosed with clinical disorders.


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MjrMajorMajor
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14 Jun 2013, 11:29 pm

The problem lies in where to draw that line between "somewhat effected", and "disorder". How much of a negative effect must autism have before someone is deemed disturbed enough for the ASD rubber stamp? There's obviously a spectrum, and that has to be combined with self awareness/lack thereof and also a possible inconsistency in the presentation of symptoms. Where would your definition lie?



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14 Jun 2013, 11:37 pm

Why do people keep assuming AS is no longer considered a disorder? They have merged it into "Autistic Spectrum disorder" and they got rid of all the autism labels and made it one with three different level subtypes.


I was bullied by the same kids every day off and on and picked on and had a nervous breakdown in 6th grade. I also experienced different behavior, was also clumsy, had sensory issues, talked loud and lacked eye contact so I am good. I could identify myself in what you wrote.


BTW people who fall in between do get labeled too and they are treat like they do have it. I wouldn't call them fake or anything. That is one of the reasons why they have all these NOS labels because they fall in no category. But not all doctors like to diagnose NOS labels so they go by closest match and give them a real label. For some people it comes and goes and they shouldn't be left with no help because they aren't (insert condition here) enough. I still wouldn't call them a fake if they are diagnosed with it still for their worst moments.


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sunshower
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14 Jun 2013, 11:53 pm

League_Girl wrote:
Why do people keep assuming AS is no longer considered a disorder? They have merged it into "Autistic Spectrum disorder" and they got rid of all the autism labels and made it one with three different level subtypes.


I was bullied by the same kids every day off and on and picked on and had a nervous breakdown in 6th grade. I also experienced different behavior, was also clumsy, had sensory issues, talked loud and lacked eye contact so I am good. I could identify myself in what you wrote.


BTW people who fall in between do get labeled too and they are treat like they do have it. I wouldn't call them fake or anything. That is one of the reasons why they have all these NOS labels because they fall in no category. But not all doctors like to diagnose NOS labels so they go by closest match and give them a real label. For some people it comes and goes and they shouldn't be left with no help because they aren't (insert condition here) enough. I still wouldn't call them a fake if they are diagnosed with it still for their worst moments.


I don't think they are "fake" as such, I think they are mislabeled/misdiagnosed. If a person's worst moments cause clinically significant distress or impairment in daily functioning then they can correctly be labelled with a disorder - it's normal for severity to fluctuate over time. I definitely wouldn't meet criteria for a diagnosis of Aspergers Syndrome currently as my severity has massively reduced since my teens due to developing coping mechanisms. But until I reached my teens I would have met the criteria. The people I refer to have never at any stage of their lives experienced clinically significant distress or impairment in daily functioning due to Asperger's symptoms.

MjrMajorMajor I think the DSM 4 criteria for disorder is not too bad (can't remember it off by heart, but it's similar to clinically significant distress or impairment in daily functioning'), although it is a bit too generalized. It's difficult to decide on borderline cases (which is the problem with using qualitative instead of quantitative criteria) but is clear when it comes to cases of people having symptoms associated with the disorder but experiencing little to no impairment.


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14 Jun 2013, 11:58 pm

I think AS as a diagnosis shouldn't exist at all, it should be changed to mild autism. It's just really Hans Aspergers giving himself something to make his name live on. :lol:

With AS it's all pretty hard to say someone has it and someone doesn't. Like autism is on a spectrum.

How autistic do you have to be to be called autistic?
How autistic so you have to be to be called Aspergers?
How autistic do you have to be to be called NT?

Also telling someone about AS is a bit confusing people don't know what it means, but if you say autism then they understand.


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15 Jun 2013, 12:23 am

MR_BOGAN wrote:
It's just really Hans Aspergers giving himself something to make his name live on. :lol:

Hah, though it was Lorna Wing who coined the term. And apparently she later regretted it.



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15 Jun 2013, 12:24 am

yellowtamarin wrote:
MR_BOGAN wrote:
It's just really Hans Aspergers giving himself something to make his name live on. :lol:

Hah, though it was Lorna Wing who coined the term. And apparently she later regretted it.


Oh I didn't know that.


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15 Jun 2013, 12:34 am

yellowtamarin wrote:
MR_BOGAN wrote:
It's just really Hans Aspergers giving himself something to make his name live on. :lol:

Hah, though it was Lorna Wing who coined the term. And apparently she later regretted it.


Just reading about him. Seems Hans Aspergers also had Aspergers. :lol:


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15 Jun 2013, 12:36 am

Why did she regret it?


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15 Jun 2013, 12:41 am

League_Girl wrote:
Why did she regret it?


I'd say the reasons I made in my first post.

Aspergers is hard to diagnose, because how autistic do you have to be to have it.

Aspergers doesn't mean anything to people if you tell them(you will have to explain it is autism), but just saying autism does.


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15 Jun 2013, 1:00 am

MjrMajorMajor wrote:
The problem lies in where to draw that line between "somewhat effected", and "disorder". How much of a negative effect must autism have before someone is deemed disturbed enough for the ASD rubber stamp?


This is what I wonder as well. If Asperger's had been a possible diagnosis in the late 70s I would DEFINITELY been diagnosed when I was in therapy as a senior in high school. I think if/when I would get tested today, I would probably still be, but my traits are indeed less severe than they used to be. I worry that, even though I test highly on the online assessments and have MANY significant Asperger's traits, I'm going to be told by therapists the same thing I hear from my father -- "There's nothing wrong with you. Everybody does those things."

The thing I see in myself is that how severely I'm affected and how dysfunctional I appear depends on who's doing the critiquing. My mother and brother believe that I'm MUCH more dysfunctional than I sense myself. But that might only be because I'm so used to my reaction to things that my behaviors and traits just seem "normal" to me. My mother has pointed out people on television who she claims are very much like I am/used to be like. I see that and go "NO. WAY. There's no way I'm that bad." And she goes "Oh yes. Easily that bad." She's compared me in dysfunction to Isabelle in Mozart and the Whale, LV in Little Voice, Cliff Claven from Cheers ("Cliff" is actually my nickname among family and has been for years -- LONG before I knew about Asperger's), and even Sheldon from Big Bang Theory (I find this one hard to believe, but Mom says yes.) I guess the only why to know for sure is to ask someone informed on the subject but an objective observer.



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15 Jun 2013, 1:00 am

sunshower wrote:
The people I refer to have never at any stage of their lives experienced clinically significant distress or impairment in daily functioning due to Asperger's symptoms. .


You know this how? How many of them are there? What percentage of the increase does this represent?

As to the OP, I disagree. The new criteria were not created for the purpose you describe and will not have the imagined effect. The number of autistics is not going to drop precipitously.

Autism is not the cool club everyone wants to get into. DSM V is not the bouncer.



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15 Jun 2013, 1:17 am

OP, Who the f**k cares what some sh***y kids said? It reflects nothing on autism, only on society. So you prefer us to feel bad because society treats us bad sometimes, rather than loving ourselves? Can't you see where the problem is? Hint: It's not autism.
Anyway, you obviously think activism (which is about accepting ourselves and getting other people to do too) etc must be some kind of misunderstanding based on too little information - which is ridiculously arrogant and wrong. There are many very autistic people that still wouldn't want to be NTs. You can hate yourself all you want, but don't pretend it's an ASD criteria.
I doubt that there is anyone that wants to be labelled autistic who isn't, precisely because we get mistreated. In case you have missed it, some NTs hate autistics enough to consider eugenics. I guess you would like that.
The DSM V's purpose isn't to hinder diagnosis - it is because there isn't enough difference between AS and autism to justify AS being it's own diagnosis. No one respectable have ever claimed there are any misdiagnoses - they just say there are a lot of us.



Last edited by Anomiel on 15 Jun 2013, 2:05 am, edited 2 times in total.

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15 Jun 2013, 1:49 am

I do agree that those who are not affected socially to an extreme should not be diagnosed. I myself can hide my symptoms in plain sight usually without becoming tired. I also do not believe I should have been to diagnosed due (this has been bothering me, in this case would it be do or due) to the fact it has never effected me in a extremely adverse way. I do believe they tried to simple down the diagnosis in the DSM V to prevent over diagnosis


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