Asperger’s History of Over-Diagnosis {NY Times op-ed}

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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.

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

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.

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

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.

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.

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 )

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 when I'm at my best, one version of my best. But I can also be a pretty over-serious, nerdy dude.

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.

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.



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.

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.

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?

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.

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.

*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.

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.

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. 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!

Those "one in a hundred" who reached adulthood before Asperger's Syndrom was recognized had to cope as best they could. Those who had a particular skill/ability would have their oddities tolerated but the rest of us had to adapt to in order to get any kind of a life.

I learned not to go blank when someone spoke to me by seeing their speech as written words and with practice this become second nature and I had elocution lessons to learn to vary the pitch of my voice. Smiling, returning handshakes and hugs firmly (although I don't like either) became second-nature but it always remained an ACT and acting all the time is extremely stressful. Also, I still made mistakes - not reading signals and unintentionally upsetting others. Social life was always difficult and although I worked until retirement age I dreaded every day. And always the low self-esteeme. What was wrong with me? Why wasn't I like other people? It must be my fault.

Reading about AS was a revelation. Suddenly everything made sense and the sudden realisation that there were others like me was like a burden being removed.

Getting a diagnosis wasn't easy because initially it meant admitting to my GP that I had always been putting on a good act whenever I had dealings with her but once we both got over that hurdle the rest went reasonably smoothly. The problems caused by AS are still there but I feel better about myself and therefore find it easier to deal with them.

What I DO resent is having it suggested that because I learned to cope with the problems of AS I'm not really on the spectrum at all.

That's been one of the biggest benefits for me. AS is a big, thick concept that helps me better understand myself. And what I've long suspected in a vague way, that it's like two sides of a coin, that many of my 'weaknesses' and 'deficiencies' are, in different contexts, actually strengths.

Your GP sounds like a pretty reasonable individual. I'm kind of, of the opinion that a generalist with some horse sense can beat out a specialist who's so convinced he or she is right.

And the part you say at the end, where if a person learns to cope, it's assumed they're not really on the spectrum. That is a very good point. And I think that may be hardwired into DSM IV, and obviously it should not be.