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Asperger’s History of Over-Diagnosis {NY Times op-ed} Previous  1, 2, 3, 4  Next  
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Sweetleaf
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PostPosted: Fri Feb 03, 2012 2:18 pm    Post subject: Re: Asperger’s History of Over-Diagnosis {NY Times op-ed} Reply with quote

AardvarkGoodSwimmer wrote:
Quote:
"Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere. . . "


Really ? ? ?

I think we're about 1 out of 100 people. Which means we can find fellow Aspies, but it does take some doing.

fleurdelily wrote:
" . . . But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. . . "


I have actually found it helpful. I am currently self-diagnosed and am comfortable being self-diagnosed. And what Asperger's Syndrome gives me is a conceptual whole that explains a lot of my life. And it explains what I've long suspected, that the things that cause me problems are also the very things which contribute to my good parts. And plus, it tells me that I potential have a tribe of other people also on the spectrum.

And I stand in solidarity with my less communicative brothers and sisters. That needs to be said.


Lol I thought Aspergers was the last name of the guy who discovered Aspergers syndrome, not something we call ourselves.......now I have to read the article to see how stupid it is.
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Sweetleaf
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PostPosted: Fri Feb 03, 2012 2:22 pm    Post subject: Reply with quote

Yeah couldn't finish it, whoever wrote that has no clue what they are talking about........last I checked its considered a developmental disorder that definitively effects social abilities. It is not defined as 'not being able to acquire language' whatever the hell that means. I thought it was more related to communication which would make sense based on the DSM and anything I've learned about the disorder.

Maybe the author of the article should get himself checked for narcissism because they certainly seem to think they know it all and are the authority on autism.
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PostPosted: Fri Feb 03, 2012 2:44 pm    Post subject: Reply with quote

I'll copy what I said in the other thread:

visagrunt wrote:
From a medical perspective, I think that the article is absolutely bang on.

In the medical profession we have fetishized diagnosis. A physician's signature on the bottom line is the gateway to a host of consequences: eligibility for insurance benefits, eligibility for social services, and so forth.

Financial stakeholders, like government and the insurance industry want to see a level of standardization--so that people don't go "doctor shopping" to find the one who will sign the diagnosis that will get them the benefits. Meanwhile the pharmaceutical industry seeks a fairly low bar for those standards, so that physicians can sign those oh-so-important prescriptions.

Meanwhile, the article raises the absolutely crucial question: when a child or an adult is diagnosed with AS (or in the future with HFA), will that diagnosis lead to the correct kind of help?


We share many similarities with autistics to be sure, and many of us present clinically significant symptoms for which some form of therapy is indicated. But the threshold for diagnosis is low (in common with much that is found in the DSM) and the clinical presentations required are so nonspecific that it's a simple matter for a diagnostician to check the boxes.
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AardvarkGoodSwimmer
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PostPosted: Fri Feb 03, 2012 5:46 pm    Post subject: Re: Asperger’s History of Over-Diagnosis {NY Times op-ed} Reply with quote

goodwitchy wrote:
AardvarkGoodSwimmer wrote:
Quote:
"Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere. . . "


Really ? ? ?

I think we're about 1 out of 100 people. Which means we can find fellow Aspies, but it does take some doing.

fleurdelily wrote:
" . . . But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. . . "


I have actually found it helpful. I am currently self-diagnosed and am comfortable being self-diagnosed. And what Asperger's Syndrome gives me is a conceptual whole that explains a lot of my life. And it explains what I've long suspected, that the things that cause me problems are also the very things which contribute to my good parts. And plus, it tells me that I potential have a tribe of other people also on the spectrum.

And I stand in solidarity with my less communicative brothers and sisters. That needs to be said.


Thank you Cool

How many people are diagnosed by social disabilities alone? None that I've come across yet. Surely everyone who is pre- and self diagnosed knows that that is only one small factor.

You're very welcome. I'm glad you like my editorial commentary. bigsmurf

And I've even thought about a spectrum self-help and self-advocacy group where, say, 6 out of 9 voting members of the board are middle-functioning.
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PostPosted: Fri Feb 03, 2012 6:04 pm    Post subject: Reply with quote

visagrunt wrote:
I'll copy what I said in the other thread:

visagrunt wrote:
From a medical perspective, I think that the article is absolutely bang on.

In the medical profession we have fetishized diagnosis. A physician's signature on the bottom line is the gateway to a host of consequences: eligibility for insurance benefits, eligibility for social services, and so forth.

Financial stakeholders, like government and the insurance industry want to see a level of standardization--so that people don't go "doctor shopping" to find the one who will sign the diagnosis that will get them the benefits. Meanwhile the pharmaceutical industry seeks a fairly low bar for those standards, so that physicians can sign those oh-so-important prescriptions.

Meanwhile, the article raises the absolutely crucial question: when a child or an adult is diagnosed with AS (or in the future with HFA), will that diagnosis lead to the correct kind of help?


We share many similarities with autistics to be sure, and many of us present clinically significant symptoms for which some form of therapy is indicated. But the threshold for diagnosis is low (in common with much that is found in the DSM) and the clinical presentations required are so nonspecific that it's a simple matter for a diagnostician to check the boxes.


That just it though. Diagnosis of disorders that can only be seen in symptoms of behaviors that must be considered in contrast to accepted norms have always been, are, and always will be subject to individual opinions paradigms and personal experiences. I do not see how that can possibly ever change. Some doctors are very conservative in their evaluations, others very liberal, while still others sway from one to the other. It's the nature of human beings to behave this way.

There will also always be doctors who feel diagnoses of certain types are being handed out too freely while others feel too many doctors are being too restrictive, and still others feel fair balance already exists. This is something I do not feel DSM-V will affect enough to make much of a difference, at least not where Autism is concerned.

I don't think there is any possible way of preventing doctor shopping. Doctor shopping to get a prescription for certain drugs can be prevented to some extent by watching prescription patterns. Doctor shopping for Autistic diagnoses could open the doors for some patents to avail themselves of services they don't really need, in theory, but I doubt in reality it would work well for patients. What good would services for Autistics do for someone who isn't disabled in any way shape or form by Autistic symptoms or traits? I just don't see that as a real problem.

Maybe I'm missing something? I could be, because even though I and all three of my sons have been diagnosed, there are no services available to any of us, other than for one son (respite, which we have utterly no need for). Are there lots of people getting false diagnoses just to get services they don't need? If so, I haven't heard anything about it.
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PostPosted: Sat Feb 04, 2012 3:37 pm    Post subject: Reply with quote

gadge wrote:
It seems to me we're all on pretty much the same page.

@ AardvarkGoodSwimmer

There should be an article on people who made it thru the "system" without being diagnosed. The assumption that Aspies can't do certain jobs is just not true. My dad was a State Trooper for 21yrs, retired, became a one man tour company, served on the board of directors for an airport, was involved with drafting for a NLF team etc, etc. and he was absolutely aspie !
...myself also, I sat in the back of algebra for 2yrs reading Hot Rod and Car Craft magazines.<and never got below a 95%. They finally put me in advanced science and math class's but then I switched schools to a little hick school. I did well in the army, and excelled in my former job(untill I got sick) In hindsight I stepped on a;ot of toes !!! A union shop with an engineering dept. made up mostly of people with only a drafting degree. And I couldn't keep my big mouth shut whenever I saw something "dumb". I think I scared people there to a degree.

Quote:
this clown is a psychiatrist!

its funny you use this term, I've always thought of myself as a jester jocolor

Thank you for the positive examples of both your dad and yourself.

I think where this psychiatrist makes the mistake, not just that he's factually wrong, but that he's so definite and dogmatic about the whole thing.

I myself find that I usually do pretty well in social situations that are a little bit structured and where there's kind of a ready made topic. For example, I have enjoyed tabling at political events. And when I worked at H&R Block, I felt clients were lucky to get me because I was better than the average preparer and I did make an effort to inform my clients of the negatives of Block's bank products. And I play live poker at the intermediate level (which means I'm really good!). These days I just play league poker for points and caution people to fully understand statistical streaks and upswings and downswings and in particular the statistical phenomenon of 'gambler's ruin.' (and that's my fair warning Razz )

I did have trouble working at a department store a year ago, was too angry when I complained, didn't light touch it, 'beginning to be a problem . . ,' that kind of thing. And when I was a copy center manager years ago, I might have taken the whole thing too seriously, but then it's hard not too.

Anyway, we on the spectrum can do a lot socially and continue to learn new skills.

I'm sometimes kind of a coyote jokester Basketball when I'm at my best, one version of my best. But I can also be a pretty over-serious, nerdy dude.
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AardvarkGoodSwimmer
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PostPosted: Sat Feb 04, 2012 4:38 pm    Post subject: Reply with quote

Sweetleaf wrote:
Yeah couldn't finish it, whoever wrote that has no clue what they are talking about........last I checked its considered a developmental disorder that definitively effects social abilities. It is not defined as 'not being able to acquire language' whatever the hell that means. . .

Very good point. This guy is focusing on a subset of what it means to be on the spectrum, and mistaking it for the whole.

And I think we should look at from time to time how much we can really depend on "experts." I think we should take a deep breath and probably downshift our expectations. Yes, an expert can be helpful, medium helpful. But probably should not put enormous weight on his or her pronouncements. The benefit of getting a second opinion, that kind of thing.
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visagrunt
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PostPosted: Mon Feb 06, 2012 1:09 pm    Post subject: Reply with quote

MrXxx wrote:
That just it though. Diagnosis of disorders that can only be seen in symptoms of behaviors that must be considered in contrast to accepted norms have always been, are, and always will be subject to individual opinions paradigms and personal experiences. I do not see how that can possibly ever change. Some doctors are very conservative in their evaluations, others very liberal, while still others sway from one to the other. It's the nature of human beings to behave this way.

There will also always be doctors who feel diagnoses of certain types are being handed out too freely while others feel too many doctors are being too restrictive, and still others feel fair balance already exists. This is something I do not feel DSM-V will affect enough to make much of a difference, at least not where Autism is concerned.


I agree that DSM-V will change nothing--largely because noone holding the pen on DSM-V has the remotest interest in changing a system that is working very well for them. But it gives the illusion of standards, and it sets such a low bar for most diagnoses that it continues to serve its purpose of feeding the diagnosis industry.

Quote:
I don't think there is any possible way of preventing doctor shopping. Doctor shopping to get a prescription for certain drugs can be prevented to some extent by watching prescription patterns. Doctor shopping for Autistic diagnoses could open the doors for some patents to avail themselves of services they don't really need, in theory, but I doubt in reality it would work well for patients. What good would services for Autistics do for someone who isn't disabled in any way shape or form by Autistic symptoms or traits? I just don't see that as a real problem.

Maybe I'm missing something? I could be, because even though I and all three of my sons have been diagnosed, there are no services available to any of us, other than for one son (respite, which we have utterly no need for). Are there lots of people getting false diagnoses just to get services they don't need? If so, I haven't heard anything about it.


How many people chase diagnoses because they want to affix a label to themselves. They convince themselves that their differences are, in fact, disorders so that they can present themselves as worthy of special consideration or deferential treatment. They then seek out professional after professional in an exercise of bias confirmation. It's certainly a pathology that I have observed in my clinical practice (on the medical side of the world, rather than the psychology side, to be sure--but the pathology is little different).

Meanwhile, what's a clinician to do? In this country, I can tell a patient, "there's nothing medically wrong with you. Go home and enjoy yourself!" I don't have a direct commercial interests in whether or not that patient comes back to see me, because there is more than enough business to go around. Physicians in the United States, and particularly specialists physicians, practice in a business model that relies on ongoing business. In most medical specialties there are enough new patients at the front end to keep a practice thriving without worrying about retention.

But clinical psychologists live in a somewhat different business model. If, say, on patient in six who is diagnosed stays on for some form of therapy, that's money in the bank for the psychologist, and the the larger the number of diagnoses, the greater the patient numbers. In difficult economic times, where discretionary money is tight, there is all the more incentive to keep the numbers up--if only one patient in ten can afford therapy, or if those who can are limited by their insurance provider to a year of benefit, then all the more incentive to keep diagnosing at high levels.
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PostPosted: Mon Feb 06, 2012 7:11 pm    Post subject: Reply with quote

I'm not a fan of the article but I do think that Asperger's is over diagnosed. I feel like it's becoming a trend for a lot of people, who are just socially awkward, to get the excuses they need for awkwardness, when Asperger's is actually much more than that.

It's aggravating to see a personality trait turn into a disorder, when people like me who actually have something more than just a few quirks here and there, get saddled in with the rest of the Cry Wolves.

I can see why a forum of people with Asperger's would feel offended by an article talking about the over diagnosis of it. And there's also that feeling of... 'Well... I'm not one of those people who have a false diagnosis.'

But there are those people out there. And I do think it's a problem that needs to be addressed. They're giving Asperger's a bad name. I mean... a worse one than it already has.
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PostPosted: Tue Feb 07, 2012 5:33 pm    Post subject: Reply with quote

DSM V is definitely step to better direction.
Criteria were so wide that I nearly got the label. I have/had serious mental issues, not ASD.
From Psychology Today: Is Asperger's Overdiagnosed?
Quote:
‘Social disability' does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation
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PostPosted: Tue Feb 07, 2012 8:31 pm    Post subject: Reply with quote

If you are autistic people assume you are not allowed to be anything.

If they see you going against those stereotypes they skew things to make it seem like you are either not autistic or try to make you seem lousy.
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PostPosted: Wed Feb 08, 2012 5:50 pm    Post subject: Reply with quote

In some areas of the article, the author seems misinformed, but it appears to me that the crux of his argument is not that there aren't actual problems (neurological issues, etc.) with those who receive a false diagnosis of Asperger syndrome- just that they shouldn't be classified on the autism spectrum. I can't find any place in the article where he argues that people who are falsely diagnosed with Asperger syndrome don't have other disabilities or disabling conditions which need diagnoses and treatment. So the tone that the article takes in places, I think, is inappropriate. But he (and a few posters in this thread) make valuable points when they say that a diagnosis of Asperger syndrome is too often used as a means of hastily dealing with patients, sometimes for the sake of business, sometimes out of impatience or laziness on behalf of the diagnostician. That definitely needs to stop, for everyone's sakes.
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PostPosted: Wed Feb 08, 2012 7:02 pm    Post subject: Reply with quote

*sigh*

As far as I'm concerned, until we identify definitive objective physical markers for autism/Aspergers, than all of this talk about "misdiagnosis" or "over-diagnosis" is just a bunch of mindless twaddle. The idea that it's being "misdiagnosed" simply because certain people perceive there are "too many people being diagnosed" is utterly bizarre. What exactly is the scientific threshold for how many DXes of any particular mental disorder are "allowed" to be identified in any given population?

Like it or not, ASDs are currently identified by means of observed behavior. In the absence of empirical tests, there is going to be an element of subjectivity inherent in any DX. Researchers are presently making strides towards discovering the underlying physical causes of what we now think of as "autism," but there's nothing concrete yet that says, "This is absolutely what causes "autism" and this group of individuals have it and this other group of individuals definitely doesn't." We're still left with a bunch of speculation and guess-work, and when I read articles like this, all I'm hearing is that some professionals are claiming that their speculation and guess-work is better than other people's speculation and guess-work.

Lastly, I have a professional DX of Aspergers. It doesn't qualify me for squat in terms of benefits, drugs, or special treatment. In the U.S., you need a heck of a lot more than a psychologist's say-so to score "free government money." I don't see how exactly my being declared as Aspie somehow detracts from the "grave seriousness of Aspergers." For the crowd that's worried that "too many Aspies" will lessen the pity society deigns to bestow on those afflicted with Aspergers....tough. I know battle-scarred, disabled war vets who get very little pity or sympathy from society, not because they don't deserve it, but because, in the U.S., it's considered the responsibility of the individual to "conquer and overcome" their shortcomings. That goes double for people with "invisible disabilities." That doesn't make it right, but the truth is, you were never going to get an out-pouring of empathy from strangers simply for having "Aspergers."

Bottom line: get the science straight and then demonstrate that the physical manifestation of Aspergers doesn't exist in the majority of people who are being "over-diagnosed." Until then.....it's MINDLESS TWADDLE.
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PostPosted: Wed Feb 08, 2012 7:17 pm    Post subject: Reply with quote

When I was trying to figure out if I was 'on the spectrum' or not the DSM-IV were not much help. I fit all of the criteria easily but it wasn't until I looked at traits & habits common in autism that I got to the point where I simply couldn't deny it no matter how hard I tried. I still fit DSM-V like a glove, in fact it seems to be a better criteria that shifts focus from language to make more room for sensory problems, stimming and meltdowns.
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PostPosted: Thu Feb 09, 2012 1:13 pm    Post subject: Reply with quote

TheygoMew wrote:
If you are autistic people assume you are not allowed to be anything.

If they see you going against those stereotypes they skew things to make it seem like you are either not autistic or try to make you seem lousy.

At a presentation on ABA at a local university, well, besides the whole thing being rigid and dogmatic, at one point one the young presenters said

" . . even helping customers . . "

Wow, those of us on the spectrum can do a whole lot more than that. Very Happy Not that there's anything wrong with helping customers, but we can do that in addition to doing other things. But if that's an example of the diminished expectations these so-called "professionals" (cough, cough) have of us, we're all in trouble.

Once again, I think most of the progress we'll make will come through self-help and self-advocacy, both individually and in groups which we ourselves form. Good-hearted professionals can help out, but they can't run the show.

=====

For example, on the topic of jobs, there's almost an inverse between "easy," entry-level jobs and what those of us on the spectrum excel at. We do better at the harder jobs! Cool
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