I constantly struggle with the backlash against the DSM 5 — the latest revision of the diagnostic and statistical manual of mental disorders. Every medical text is revised decade after decade with little significant argument.
But when it comes to mental disorders, apparently there’s a different standard for them — one that is neither equal nor fair when compared to their medical brethren.
The latest article on the controversy comes from Rob Waters writing his hyperbole earlier this week over at Salon.com (ridiculous sample: “As the task force producing it has posted drafts on its website, an undercurrent of dissatisfaction has exploded into a full-scale revolt by members of U.S. and British psychological and counseling organization.” [emphasis added]). Repeating many tired phrases like “bible of mental health” in reporting on this story, it’s not exactly clear there’s any objectiveness. Instead, it’s heavily slanted toward the opponents of the revision of the manual.
The proponents are led, ironically, by the former head of the last revision process, creating the DSM-IV, Allen Frances, who gleefully blogs about all the problems he sees in the DSM-5 revision process over at Psychology Today.
It gets even more ironic when you look at the criticisms leveled at the DSM-5 — criticisms that began a long time ago, in a revision we’re all familiar with called… yes, you guessed it, the DSM-IV.
Even the Reporting on the DSM-5 is Flawed
Criticizing new stuff is part and parcel of any profession, I suppose. Especially when that new stuff impacts your daily practice. In this case, hundreds of thousands of mental health professionals around the country will have to learn the diagnostic criteria for the handful of new disorders that make it into this revision, and understand the changes made to existing disorder criteria.
But what I don’t get is the first criticism Rob Waters note is about attention deficit hyperactivity disorder (ADHD/ADD):
For many critics, Exhibit A is childhood ADD. As the disorder describing fidgety, easily distracted kids morphed from “hyperkinetic reaction of childhood” to the current “attention deficit hyperactivity disorder,” the number of children given the diagnosis exploded, fueling, by one account, a 700 percent increase in the use of Ritalin and other stimulants in the 1990s. Diagnosis requires checking six of nine boxes from a list of symptoms that include “often does not seem to listen when spoken to directly” and “often fidgets with hands or feet or squirms in seat.” Sound familiar, parents?
Yet there are absolutely no changes being proposed for childhood ADHD or ADD diagnostic criteria. Doh!
The change that is being proposed is to lower the number of symptoms required from 6 to 4 if the person is an older teenager (17 or older) or an adult. Why the change? Because in reviewing the research, the working group found that while ADHD and ADD can persist into adulthood, adults often exhibit a few less symptoms than children do.
The opponents of this change appear not to argue from empirical data or research. According to Waters and the online petition, the concern is about “over-diagnosis” of this disorder. From the online petition:
The reduction in the number of criteria necessary for the diagnosis of Attention Deficit Disorder, a diagnosis that is already subject to epidemiological inflation. [Ed. – there is no research reference for this term, ‘epidemiological inflation’]
So, despite research demonstrating this change might more accurately categorize people who are adults with ADD or ADHD, opponents are arguing we shouldn’t do it because then more people might be diagnosed with the disorder. That’s convoluted, circular logic if I’ve ever heard it.
In that case, we should never, ever propose the addition of any new disorders, despite any research findings, because a new disorder would result in new diagnoses of people, classifying them as “mentally ill” when previously they were not so classified.
But honestly, if you want to look at the problem with attention deficit disorder, don’t blame a diagnostic manual that hasn’t even been published yet. If you believe the problem is with “over diagnosis” of ADHD, then the actual problem should be able to be traced back to the current ADHD diagnostic criteria (from, yes, the flawless DSM-IV).
Where’s the outcry over the flawed process that created such criteria in the first place? If the DSM-IV process was so reliable and good, how could it have created this current “epidemic” of “over diagnosis” of ADHD?
The DSM Has Always Created New Disorders
As for the other new disorders proposed, I haven’t reviewed the literature like the working groups have, so I have to trust that there must’ve been something in the research that suggested these are potential disorders to consider including.
We should keep in mind that the DSM has always been criticized from two points of view. From the positivist paradigm, criticisms have focused on the “reliability and validity of the conclusions used to justify inclusion and exclusion of particular criteria for a diagnosis,” (Duffy et al., 2002) or indeed, whether a diagnosis should be included at all.
The other criticism comes from a social constructivist standpoint — that the DSM simply reflects the belief system of a socially dominant group that has selectively chosen which knowledge to utilize in order to better understand the world. From this sort of criticism, you can never argue objectively from either side, because both sides of the argument merely change (or redefine) what they consider relevant and valid knowledge of the world. This criticism also worries that the dominance of the DSM model drowns out alternative understandings and categorizations of human dysfunctional behavior and mood (Duffy et al., 2002).
Every new DSM creates new disorders, and there’s usually a resulting outcry about their creation. The DSM-IV brought us one such notable classic — premenstrual dysphoric disorder. At the time, critics (such as Caplan, 1995) argued the PMDD had no solid evidence to support its inclusion in the section of “Criteria sets and axes provided for further study.” There was, in fact, a lot of hand-wringing and outcry over the inclusion of this disorder in the DSM-IV. However, further study proved critics wrong in this instance.
But still, we have to think of the children and the epidemic the publication of the DSM-5 will bring:
Two other newly proposed disorders singled out as problematic in the petition are “mild neurocognitive disorder” in the elderly and “disruptive mood dysregulation disorder” in children and adolescents. Both lack a solid basis in research and may fuel the use of powerful antipsychotic medications, which cause weight gain, diabetes and a host of other metabolic problems, the petition says.
“We are gravely concerned that if this is published as is in 2013, it will create false epidemics where hundreds of thousands of children and the elderly who really are normal will be diagnosed with a mental disorder and given powerful psychiatric medications that have dangerous side effects,” Elkins says. “That is not tolerable.”
Scientists usually argue their differing opinions of what the research does and does not demonstrate in scholarly papers and meta-analytic reviews, not hyperbole spilled out into an online magazine and online petitions. Is popular vote by the masses really the best way to resolve scientific questions?
43 comments
Dear Dr. Grohol:
I wish to respectfully express my disagreement and concerns with your perspective on the DSM-5 controversy. I am Chair of the Open Letter Committee that has raised scholarly and scientific concerns about the proposed DSM-5. Our petition website has collected nearly 10,000 signatures from mental health professionals around the world, along with endorsements of more than 40 mental health organizations, including the prestigious British Psychological Society and 14 Divisions of the American Pschological Association.
We are mainstream professionals who are gravely concerned about the lack of empirical support for numerous diagnostic categories currently proposed for the new DSM-5 and, perhaps even more importantly, we are also deeply concerned that if the DSM-5 is not changed prior to publication in 2013 that hundreds of thousands of individuals whose behavior is well within normative expectations could be inappropriately diagnosed with a mental disorder and treated with powerful psychiatric drugs which, as you know, can have dangerous side effects.
Our concerns are not couched in hyperbole. Indeed, we have provided careful scholarly information in our Open Letter (see URL below). We are not simply concerned about the lowering of the diagnostic threshold for ADHD — which you focused on in your blog — but we are concerned about numerous other diagnostic categories that have been proposed such as “Mild Neurocognitive Disorder,” “Attenuated Psychosis Syndrome,” and “Dysruptive Mood Dysregulation Disorder” to name a few. If you are not familiar with these proposed categories and the dangers they present to the public, we encourage you to look into these issues.
As scholars and researchers ourselves, we have studied the proposed DSM-5 very carefully and we are very concerned that these new categories are so broad that hundreds of thousands (and this is not hyperbole but a carefully considered statement) of young children, adolescents, and the elderly will be incorrectly diagnosed with a mental disorder and treated with psychiatric drugs which can have dangerous side effects. As you know, we already have a national problem with the overzealous prescribing of psychiatric drugs, even to children as young as 4 years of age.
If we are correct about certain new diagnoses in the proposed DSM-5, this problem could be exacerbated exponentially.
When I read your comments, I became concerned that your readers might take what you say without checking more fully into this controversy. Articles such as yours could ultimately prove to be hurtful to the widespread widespread effort to bring about changes in the proposed DSM-5.
If your readers wish to know the major concerns about the proposed DSM-5 that have caused nearly 10,000 mental health professionals and more than 40 mental health organizations to endorse the “open letter” petition, they can read our “open letter” — a scholarly and scientific document — for themselves at:
http://www.ipetitions.com/petition/dsm5/
We hope you will also read this document and perhaps write another article showcasing the concerns that so many thousands of mental health professionals around the world have raised about the proposed DSM-5. That way, your readers could make up their own minds.
Respectfully,
David N. Elkins, PhD
Professor Emeritus of Psychology, Pepperdine University
Chair, Division 32 Open Letter Committee
President, Division 32 of the American Psychological Association
Dear Dr. Elkins,
Thank you for responding to the article. However, you’re being disingenuous by suggesting that the nearly 10,000 signatures are all mental health professionals. Anyone can sign the petition — even anonymously if they want. I’d be interested to hear how many of the 10,000 are actual mental health professionals.
While petitions are a great way to bring light to a particular problem or set of problems, which this letter purports to do, they are a horrible way to conduct science and research. The working groups of the DSM 5 have been doing their research into the revision for a number of years now. How long has the petition committee — self-selected and developed in private, I might add — been working on this issue?
The incorrect information published in a mainstream news article is, I’m afraid, endemic of the problem you face. If problems like the ADHD diagnosis can be misconstrued so that people and professionals alike are awash in incorrect information, it’s no wonder people feel free and are happy to sign a petition that wants to “fix” something that isn’t even being proposed.
Your letter has 17 references. Once we get rid of the Frances self-serving references to his blog that add little to the discussion, and 2 to the DSM 5 itself, we’re left with 12. Of those 12, two are to news articles on Psychiatric Times and Psychiatric News Online, and two more are from an author referring to his 2 books.
I’m not trying to knock your references, but I’d suggest they hardly provide the kind of rigorous scientific evidence — you know, peer-reviewed journal data — that I’m looking for in this debate. Not more opinion.
And again, my point being is that professionals similar to you held similar concerns at the dawn of the publication of the DSM-IV, which was not nearly as transparent as some would be led to believe. They were also expressed at the dawn of the publication of the DSM-III. You’re not saying anything new, so what I’m looking for is the data to support your fears.
Why do you believe that suddenly professionals will grab a hold of these new diagnoses and start looking to diagnose them to everyone who comes into their office? And better yet, what has led your group of professionals to believe that all of these things don’t have enough research support in the literature for their inclusion in the DSM 5? Honestly, I’d love as many specifics as your group has (because I couldn’t find them in the letter).
I’ll even be happy to write a followup blog entry and eat my words if I’m convinced there’s enough doubt there.
Without the evidence, I’m sorry, it’s exactly what I said it was — hyperbole.
John
PS – Frankly, as a free thinker, I don’t care what other professional organizations think — I study the issue, review as much research as I can, and think for myself. So endorsement by X, Y, and Z makes little different to the likes of me.
I signed it after reading about the petition at http://www.1boringoldman.com a few weeks ago, and I am a board certified psychiatrist practicing since 1993.
The DSM 5, as I have been reading about it from various sources, both internet and publications, both general and professional sources, is tainted and not about improving the field first and foremost.
Maybe ask your readers, after you go there first and read about it yourself, what the blog author at 1BOM wrote today, january 1, about the upcoming whistleblower case to start in Texas about 1 week from now, who really benefits from what DSM 5 is really geared to do. Maybe if what is being reported has some merit, that might be a post here to write about as well?
It is suggested that the APA will PROFIT about $10 million in sales of DSM 5 literature. Isn’t that a conflict of interest by a professional group that is supposed to serve the public!?
I don’t like writing for atypical antipsychotics once I got the gist of what their consequences were about, not that I love the earlier generation drugs like Haldol or Thorazine either.
Just one question to readers out there: if meds like Abilify, Zyprexa, Seroquel, and probably the newer agents of late like Latuda are getting $10 or more dollars a pill, which adds up to out of pocket costs like $6,000 a year, shouldn’t these companies be fairly much guaranteeing remission for 70% or more who use their product? You think about it.
And a followup thought…
As an interesting intellectual exercise, from the point of view of “fear of over-diagnosis,” we have a prime example of that offered up by your group already — ADHD in children.
Would it have been better that ADHD was never included in the DSM because of the amount of diagnosis that might come to innocent children?
After all, at one time in the not so recent past, researchers weren’t sure ADHD really existed either.
“(W)e are also deeply concerned that if the DSM-5 is not changed prior to publication in 2013 that hundreds of thousands of individuals whose behavior is well within normative expectations could be inappropriately diagnosed with a mental disorder and treated with powerful psychiatric drugs which, as you know, can have dangerous side effects.”
I was always under the impression that it was the patient being treated, not the diagnosis. Your statement appears to suggest that your 10000 signatories are too incompetent to assess a patients needs and only prescribe by rote.
you know, the DSM should be an idea, not the main criteria. the truth is that even if you want it or not, the dsm is not objective, there can be a lot of “mistakes” (depending on who reads it) and any expert can think about it and if they are clever enough, think on their own.
i think it’s more than to see what you’ve seen on the surface, you have to think more cause it’s not just arguments against the DSM, it’s much more.
and i think it would be wiser to keep an eye on their point of view.
Dr. Grohol,
Like Dr. Elkins, who responded eloquently to your post, I am also a member of the Society for Humanistic Psychology’s Open Letter Committee. In recent months our committee, the British Psychological Society, and the American Counseling Association have independently raised scholarly and scientific concerns about the proposed DSM-5, concerns which you dismiss as mere hyperbole. Yet there is nothing hyperbolic in wishing to see the DSM revision informed by strong and open science. In your blog post, you appear to feel otherwise:
“As for the other new disorders proposed, I haven’t reviewed the literature like the working groups have, so I have to trust that there must’ve been something in the research that suggested these are potential disorders to consider including.”
Good scientists do not simply trust what they are told. Rather, they demand empirical evidence. There is nothing hyperbolic in our rather straightforward and reasonable request that the DSM-5 Task Force submit controversial proposals for independent scientific review. We are merely asking the DSM-5 task force to abide by accepted scientific practice because simply trusting the experts to make important decisions in private (as you appear to advise) makes for rather poor science.
I encourage people not to merely trust your blog post and its erroneous conclusions about those of us with concerns about proposed DSM-5 revisions. Instead, I urge them read our measured and even-handed open letter petition and, should they find its arguments convincing, to consider signing it: http://www.ipetitions.com/petition/dsm5/
At almost 10,000 signatures, it would appear many people share the concerns about the DSM-5 which you so casually dismiss.
Jonathan D. Raskin, Ph.D.
Professor of Psychology and Counseling
State University of New York at New Paltz
Member, Open Letter Committee
http://www.jonathanraskin.com
I think the thing that takes it from a “reasonable request” to a strange, almost outlandish request is the fact that none of you have anything to do with the APA’s DSM-5 process.
It’s like asking the editors of the New England Journal of Medicine to run any articles by an outside, independent peer review group because of past lapses where they’ve published scientific papers they’ve later had to retract. Why would any organization agree to do that? (And I’ve love to learn of any organization that, in history, has…)
You’re coming from competing professional organizations, with competing interests and backgrounds.
In an ideal world, perhaps we wouldn’t need so many groups representing so many different professional interests when we’re all focused on helping people change their lives for the better.
John
PS – I’ve asked the “Open Letter Committee” for a better account of how many of those 10,000 signatures are actual mental health professionals, because another member of your committee mistakenly suggested that all 10,000 were professionals.
PPS – Do the British use the DSM? I thought they used the ICD for diagnosing mental disorders.
John,
You responded to Dr. Raskin’s comment about the need for an external review for DSM-5 by comparing it to “asking the editors of the New England Journal of Medicine to run any articles by an outside, independent peer review group…”
John — there’s a huge difference that you should know:
1. The New England Journal of Medicine editors and reviewers ARE outside, independent, peer reviewers of the research manuscripts they review.
2. The DSM-5 Task Force is NOT outside and independent from the DSM-5 proposals. Even the DSM-5 Scientific Review Committee consists of former task force members. All DSM-5 proposals are reviewed INTERNALLY
Dr. Grohol,
You write: “…If the DSM-IV process was so reliable and good, how could it have created this current “epidemic†of “over diagnosis†of ADHD?”
I believe you miss the point: no one is saying that the current DSM-IV, or the DSM-III before it, are “reliable and good” — but rather, that the problems already inherent in the current psychiatric diagnostic system are not being addressed – and only being made worse – by the same kind of thinking (and prejudice motivated by the profit potential of “big Pharma”) as went into the formulation of the current edition of the DSM.
Scott Churchill
Dallas, TX
Dr. Grohol,
I’m quite stunned at your opinion. Here are some comments I have about your article:
1. Allen Frances is not “leading all” DSM-5 proponents. He is not leading BPS, Dr. Elkins psychologists’ group, or the American Counseling Association. This is an absolutely ridiculous statement. It is also an insult to those of us who, on our own, evaluated DSM-5 and recognized the numerous problems with it.
Allen Frances is not the only person who has written about DSM-5 concerns. Just google “DSM-5 -Frances” (without the quotes) and see what comes up.
2. If you really did YOUR research, you would have read articles written by Allen Frances where he readily admits the lessons he learned from DSM-IV, i.e., the unintended consequences from the changes made in DSM-IV. He has written specifically about how changes in the DSM-IV ADHD diagnosis contributed to the ADHD epidemic in children. He has also talked about DSM-IV’s role in the epidemics of Autism and Bipolar Disorder in children.
3. You state that scientists usually argue their differing opinions in scholarly papers, not hyperbole in online magazines and online petitions. The reality is that many scholarly articles have been published since 2010 about the problems with DSM-5.
Furthermore, I can only assume you are not an academic and are unfamiliar with getting a manuscript published in scholarly journals. Specifically, the time period from submitting a manuscript to a journal and the manuscript being published is usually at least one year. Researchers are using Internet blogs to express their concerns about DSM-5 because it’s much more timely, which is extremely important as the date for DSM-5 publication draws near.
4. You quote Livesley from 1995 on the inadequacies of the DSM-IV personality disorders. Did you happen to read his 2010 journal article in Psychological Injury and Law (a respected, national refereed journal) about the numerous problems with the personality disorder proposals in DSM-5? And, he’s even on the DSM-5 Personality Disorders Work Group!
5. You criticized the references in Dr. Elkins’ letter; yet, your article cites only 5 references — only 3 are refereed journal articles and all 5 references are more than 5 years old. Isn’t there a saying about throwing stones in glass houses…
6. How can you think that the lowering of diagnostic criteria among several proposed DSM-5 disorders and the addition of new “subthreshold” disorders won’t have the potential to create new epidemics? It’s extremely likely that lowering diagnostic thresholds will increase prevalence rates. Experience from DSM-IV changes to ADHD, bipolar disorder in chidren, and autism shows how small diagnostic changes can contribute to epidemics. Why wouldn’t changes in DSM-5 — many of which are much more significant that DSM-IV changes — won’t result in similar epidemics?
7. If you haven’t read enough of the literature about the DSM-5 development process, then you don’t know that there are real problems with inadequate scientific evidence supporting many DSM-5 proposals, poorly designed field trials, insufficient information about the new dimensional assessments, and more.
Don’t judge those of us who are concerned about DSM-5. We simply want to feel confident that the DSM-5 is a safe and credible manual. Unfortunately, there’s more than enough evidence about DSM-5 problems for clinicians to be concerned about its credibility. To not question the problems is to stick one’s head in the sand and pretend that the DSM-5 won’t impact public health. Are you really willing to do that? I’m not.
1. It certainly looks that way in the public eye. Sorry if my perception is inaccurate, but it’s how I — and many of my colleagues — view things.
2. I’m grateful he’s reached such insights and wants to share them with the world. He’s certainly in a position to do so.
3. Yes, I know, but really, Salon.com? And with online journals like PLoS and others, the turnaround time has decreased dramatically.
4. I saw it after I wrote about it, which is unfortunately too late. My response would be apparently there will be some critics who never go away, no matter what you do.
5. I’m writing a blog post for a popular mental health site, not a petition letter that someone references as having lots of scholarly citations to back up their arguments. I read through many of them, and as I said before — some valid points are made.
6. That’s the crux of the matter, isn’t it? Some professionals believe things are being “over diagnosed” while others are looking for the evidence showing that. And then connecting that specific behavior right back to the diagnostic criteria in a straight-line, demonstrating a causal relationship (not just correlational), and ignoring societal, environmental and social factors.
7. I’m well familiar with how the DSM-5 is being created, thanks. Again, many of the same arguments were made against prior revisions of the DSM and the world did not end with their publication.
What some claim are “epidemics” may also be viewed as a refined sensitivity to detecting problems that were affecting people’s lives in ways that nobody previously well-understood or could help them with.
I’ve never argued that the DSM-5 is perfect. It’s not nor will it ever be. Attempts to upend the process as it nears the end of its revision just appear a little strange from the outside world.
If so many professionals (and professional organizations) feel so strongly about it, then either (a) work within the system you’ve got to change it to your liking or (b) create a new system. Trying to (c) overthrow the system from the outside just seems about as effective and useful as giving a fish a bicycle.
Especially when most of the items of contention are areas where two reasonable professionals reading the research might disagree.
And you know what — that’s okay. That’s what science and putting science into practice is all about. We publish something. We get feedback on it. We learn, and then we publish again.
John
Regarding point #6, you state, “And then connecting that specific behavior right back to the diagnostic criteria in a straight-line, demonstrating a CAUSAL relationship (not just correlational), and ignoring societal, environmental and social factors.” No one has EVER mentioned causal relationships. Geeze.
And then you remark that if professionals feel so strongly about DSM-5, they should work within the system to change it. Well guess what — I’m a licensed mental health counselor. Counselors weren’t allowed to be on the DSM-5 work groups or advisory groups. AND, counselors originally weren’t even listed to be volunteer field trial participants (that changed partially because I complained). Furthermore, I helped draft an organization’s letter to APA during the 1st comment period, and NONE of our suggestions were ever reflected in the updated revision online.
Working with “the system” is the ideal situation, but it has been impossible with this DSM-5 Task Force. So, what are the alternatives? Just say nothing? Or create our own diagnostic classification? Those are the only choices? Geeze.
And, we are NOT trying to overthrow the system. That’s just ridiculous. If we did not support DSM we would not be so concerned about it lacking credibility and overall being a mess. Criticizing the DSM-5 is NOT trying to overthrow it.
Hey! A squabble amongst psychologists! Who woulda thunk it?
For anyone who’s interested, the American Psychiatric Association answered (or at least tried to answer to their satisfaction) the American Counseling Association’s concerns in a letter:
http://www.dsm5.org/Documents/DOC001.pdf
It’s worth a read if anyone believes the APA DSM-5 process is somehow just a dog-and-pony show done by a group of psychiatrists in a back room somewhere.
John
PS – In Frances’ largely incoherent response here – http://www.psychiatrictimes.com/blog/dsm-5/content/article/10168/1986297 – he refers to a term I never heard before: “diagnostic inflation.” I couldn’t find any reference to this in PsycINFO either. Anyone have suggestions here, or is he merely coining a new term to mean “over diagnosis?”
In studies I’ve examined that have looked at “over diagnosis,” the problem nearly always seems to boil down to patients not meeting the criteria for the diagnosis. I’m not sure how this is a problem of the diagnostic criteria themselves, when it is clearly the professionals who are incorrectly wielding the criteria who seem to be responsible for much of the problem of “over diagnosis.”
No better example of the where the problem of over-diagnosis lies — with professionals or a diagnostic manual — is the example of childhood bipolar disorder. The DSM-IV does not mention that bipolar disorder can be diagnosed in children. In fact, it’s largely moot on the point, with no specific mention or separate set of criteria for manic episodes for children.
And yet, in the past decade, the prevalence of diagnosis of childhood bipolar disorder has increased dramatically. The DSM-IV didn’t change in that time.
So who’s really to blame here? The clinicians who expand diagnostic criteria based upon research and their own opinions, or the actual diagnostic criteria that remained unchanged since it was published in 1994 (for the DSM-IV)?
Dr. Grohol,
I am puzzled that you do not seem to grasp the meaning of “diagnostic inflation,” which is not a technical term, but simply a description of what happens when you loosen criteria for a diagnosis. You create more people who fit the criteria, and therefore you increase the number of people with the diagnosis. Therefore, you have an inflated number of people with that diagnosis — that is, you have, objectively speaking, more people who are diagnosed with the disorder than before the introduction of the new criteria. You are making too much of this simple description, as if it were some sleight of hand trick. It’s not. It’s a very simple, straight forward and reasonable description of what in fact the DSM-5 is doing with its current proposed changes. This is not the same thing as over-diagnosis, because over-diagnosis is over-stepping the boundaries of an already existing diagnosis, whereas diagnostic inflation means to change criteria for diagnosis so that it applies to more people than it did before. Let’s not muddy the waters. This is a simple concept to grasp.
Did you ever stop to wonder why the DSM gets fatter with every edition instead of smaller? If psychiatry was being truly effective at resolving mental illness, we should see the prevelance of mental illness going down over time, and less people on disability as a result of psychiatric diagnosis. Yet the very opposite reality is the case. With every new DSM, we see the lowering of diagnostic thresholds for current diagnoses, and we see the invention of new diagnoses. I say “invention” because in many cases new disorders are fabricated without much if any empirical support for their existence. This is true of a number of proposed diagnoses for the DSM-5, including for example Dysphoric Mood Dysregulation Disorder and Attentuated Psychosis Risk Syndrome.
There are self-interested reasons why both psychiatry and other mental health professionals may be happy about changes coming with the proposed DSM-5, not to mention certain industries such as pharma companies, since it may lead to economic benefits for our professions. But that doesn’t make it right, nor does it make it scientifically valid. We have an obligation to the truth even when it may not serve our self-interest.
Considering the issue of self-interest, I can honestly say I have no conflict of interest of any kind in my endorsement of the Open Letter to DSM-5 petition. I do not stand to gain in any way by the reformation of the DSM-5. I am obligated to support the petition based on my commitment to the truth and to the well-being of the public, both of which I believe are at risk of being harmed if the current proposed diagnostic manual is to become reality.
Can you say the same, Dr. Grohol? Can you say that you have no conflict of interest in your position on this controversy? As CEO and Founder of PsychCentral, your website’s disclaimer suggests that you do in fact have a conflict of interest.
Here is what your own disclaimer says:
“Psych Central is an independent publisher of mental health information and resources. We accept advertising from many different companies, including pharmaceutical companies who develop, research and sell psychiatric medications for many of the mental disorders listed on this site. We want you to be clear that we do accept pharmaceutical company funding.”
I think it is important for your readers to take this disclaimer into consideration when considering the validity of your argument.
Even if a person has a conflict of interest, their argument can still be valid, of course. But in this case, the Open Letter to the DSM-5 is leaning in the direction of caution, against a proposal that could potentially harm the public in several ways — against a proposed DSM-5 that is increasing the risk of stigmatizing people with a label that may be simply a transient and normative life crisis, putting people at risk of side effects from unnecessary treatments, and/or funneling resources away from people in desperate need of help and redirecting it to people who do not really need psychiatric intervention. You seem to be willing to throw caution to the wind and to simply trust the wisdom of the DSM-5 Task Force. Could your bias in this latter direction stem from a conflict of interest? It seems to appear that way to me and some of my colleagues.
Best wishes,
Brent Robbins, PhD
Director of Psychology Program, Point Park University
Secretary, Division 32 of APA
To your claim that I carry some sort of conflict of interest when discussing something as broad, general, and far-reaching as a once-every-few-decades revision of a diagnostic manual by an organization that I have zero professional or social ties with…
We don’t handle our own ad sales here at Psych Central, so I have no idea what ads are running on the site at any given time. That’s more than WebMD or any other large health website online today can claim. We don’t just have a Chinese wall, we have a wall, an ocean and then some between us and the ads you see here.
In fact, if you review the blog here for the past decade (yes, we’ve been online for well over a decade), you’ll find hundreds of articles proclaiming the benefits of psychotherapy and demeaning many pharmaceutical companies who’ve been caught cooking their data results.
Anyone who’s a regular reader of World of Psychology knows Psych Central is about editorially independent and objective as an organization can be in this day and age. And like you, Dr. Robbins, I’m a member in good standing with the APA and was awarded a Distinguished Professional Contribution to Media Psychology award in August of this year by my division. (You don’t get those for being a pharmaceutical mouthpiece.)
So please, let’s put aside the claims that somehow I’m biased by bringing up these concerns about people who seem to be on some sort of mission to interfere with how other professional organizations conduct their business.
I asked about “diagnostic inflation,” because it is symptomatic of the inflammatory rhetoric being tossed around in this debate that has little basis in the scientific literature. I’m all for fun with words, but in my book, words should still mean something. I was just asking if this phrase actually had any meaning (or backing) in the scientific literature, and you answered — no, it doesn’t. Thanks.
John
I was merely quoting from your own disclaimer, John. If there are no conflicts at all, why the need for the disclaimer?
Thanks,
Brent
Dr. Grohol:
Happy New Year. Thanks for responding to my reply to your blog. A few reactions to your comments:
1. You say that asking the DSM-5 Task Force to submit their work for independent review is like asking the New England Journal of Medicine to run articles by an outside group. Your analogy doesn’t hold up to careful scrutiny. In a scientific journal, there are discrete roles with checks and balances. Authors choose the topics they research and how their research is conducted, editors decide whether the resulting manuscripts authors submit should be peer-reviewed, reviewers provide evaluations of manuscripts, and then editors use these evaluations in deciding on publication. The DSM-5 has no such checks and balances. It is a closed shop. The people who propose revisions, do the research on those revisions, and determine what gets published in DSM-5 are essentially one and the same group appointed by a small cadre of persons carefully orchestrating the process. As such, anything analogous to the independent reviews solicited by the editor of a scientific journal have been sorely lacking in the DSM-5’s development. While you are correct that this is how it has been done throughout DSM’s history, repeating a problematic process doesn’t make that process sound. Comparing the DSM-5 process to a scientific journal only illustrates the Open Committee’s point that independent review of DSM-5’s controversial proposals is called for.
2.When it comes to the signatories of the Open Letter petition (http://www.ipetitions.com/petition/dsm5/), you seem to want to have it both ways. First, you cast unfounded aspersions on the petition by saying that you don’t know how many of the nearly 10,000 signatures are from mental health professionals (feel free to count them; is there a particular percentage that makes a difference?). Then you say that petitions are no way to make scientific decisions and that the DSM-5 Task Force doesn’t need to answer outsiders anyway. Which is it? If the vast majority of signatories are mental health professionals, do their concerns about DSM-5 count for anything? Or should they just remain silent and trust in the wisdom of the DSM-5 Task Force? Are you suggesting that the many thousands of mental health professionals not privileged enough to serve on the DSM-5 Task Force shouldn’t express concerns about DSM-5 proposals? By that logic, neither you nor I have a basis for discussing the DSM-5, as neither of us has been appointed by the American Psychiatric Association as part of the official process.
3. You claim that it is contingent upon those concerned about DSM-5 proposals to illustrate why an independent review is necessary. This is akin to me submitting a manuscript for publication and, in my submission letter, telling the editor it is her responsibility to justify why external reviews are warranted. That would take chutzpah on my part, but would be a pretty neat rhetorical trick were it to work. Verbal gymnastics aside, it is contingent upon the DSM-5 Task Force to explain why an independent review is unnecessary, rather than the reverse.
4. Yes, you are correct that the world didn’t end after questionable revisions were made to previous DSMs. And—despite it being 2012—the world is unlikely to end should bad decisions be made in DSM-5. However, by this logic why even revise the DSM at all, ever? The world won’t end whether we revise it or not. But when did this become about the apocalypse? I thought it was supposed to be about using science openly and transparently to inform decisions on categorizing and diagnosing mental disorders.
5.You wondered whether the British use DSM or ICD. If the latter, does this really negate the British Psychological Society’s extensive concerns about the DSM-5 (http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf)?
6.Perhaps petitions aren’t ideal in scientific discussions. However, when the message conveyed is that mental health professionals not involved in the process should be quiet and trust the insiders, then the reason why petitions become necessary is effectively illustrated. Clearly the Open Letter petition’s signatories have concerns about the DSM-5 process. They are merely asking that these concerns be addressed.
Thanks for hearing me out.
Sincerely,
Jon Raskin
Hi Dr. Raskin,
1. The NEJM, like nearly all the scientific journals published today with the highest impact factors, is also a “closed shop.” I’d suggest the analogy isn’t a bad one on closer examination:
The reviewers at most journals are the same group of reviewers. They are independent from the journal however and are not reimbursed for their reviews.
The working groups of the DSM-5 are also independent and have no financial ties to the APA directly. They are a much more diverse group of professionals than the previous DSM revision, with far more representation of non-medical professionals.
If authors of a research paper disagree with a reviewer’s criticisms, they can resubmit the paper with no changes and an argument as to why it needn’t be changed. The editors examine the article again (again, in-house, with no transparency about the process), and make a decision. If that decision is to still reject the paper, the researcher has no “independent review committee” to appeal to. There’s no third-party they can then contact and argue their research deserves publication, as-is, in the journal.
2. I was asking a simple question that nobody has yet to answer brought solely upon Dr. Elkin’s claim:
This sentence strongly suggests that the 10,000 signatures are only from professionals. I’ve shown that claim to be false already, and was just asking if anyone knew the actual number, since it seems like it might make a difference if the number is 100 versus 9,000.
All I’m asking if that we’re going to use data, let’s be specific and clear on the data being used.
As for the rest… if there’s a difference of opinion amongst researchers about what the data show, something like a meta-analytic review seems like it would answer such questions to everyone’s satisfaction. Then at least we’d all have a real study and data to point to (instead of simply opinions and using made-up terms like “diagnostic inflation”).
It seems like even a draft literature review (even if not a full meta-analytic review seeking to combine and re-analyze datasets) published in an open-access journal would’ve taken less time and coordination than the efforts done to write this petition and argue for it.
John
John,
I did a rough count of the data on the Open Letter to DSM-5 petition, and, as of today, roughly 88% of the signatures are from mental health professionals. If you read the comments of those who are not listed as mental health professionals, many of these signatures are from people with expertise in mental health, including for example developmental psychologists, neuroscientists, and attorneys who deal with mental health issues in their practice. A minority of these signatures are from concerned citizens and consumers of mental health, who apparently did not read that the invitation for the petition was for mental health professionals. Some signatures are of students, mostly doctoral students. But you can identify which signatures belong to these groups because of the questions asked of the signatories on the petition.
So, at this point, to be more exact, you have 10,000+ signatures on the petition, about 8800 of which are mental health professionals, and about 1200 of whom are behavioral and social scientists, students in mental health programs, consumers and concerned citizens.
I have to say that, considering the length and complexity of the petition, it’s truly remarkable that so many have signed the petition and especially that so many organizations have endorsed it. The petition essay is not easy reading, and the essay makes a number of points about a variety of diagnostic categories. A person could easily disagree with a single point on the petition essay and reject the whole thing as a result. Yet, despite all that, there’s 10,000 signatures, many organizations endorsing, and most of the signatories are mental health professionals who are speaking out from their expert experience in the field. That’s quite amazing, if you ask me. I would have never predicted it when the petition was initially launched.
Best wishes,
Brent
John,
Another point about “Why a petition?”
I think the main reason for a petition at this time is not only to appeal to the DSM-5 Task Force, but to raise awareness about these issues. Many are learning about these controversies for the first time through the petition.
If an article was published as you suggested, only a small minority would read it and know about it.
But this petition is something that has raised an incredible amount of awareness about an important and timely issue.
This cannot underestimated. The amount of attention raised by the petition goes way beyond any expectations of the committee who launched it, and clearly this demonstrates there was a need for it. Otherwise it would have fizzled.
Best wishes,
Brent
Hi Dr. Robbins,
Thanks for answering my question and providing some interesting insight into the petition signers. I think it’s helpful and does inform the debate.
I wouldn’t mistake a signature for reading, much less comprehension, of anything however. Almost all of us have agreed to “terms and conditions” (for instance, for Apple’s iTunes) that few of us have bothered to read. In the case of legal mumbo-jumbo, we do it to get to what we want.
In the case of a petition, people may be signing it for reasons that have little to do with the organizer’s desires. For instance, there’s a vocal and active “anti-psychiatry” crowd that will gladly sign-off on anything anti-psychiatry, regardless of its content.
All of which to say, I agree with you that a petition is indeed one way to bring these concerns and issues to light regardless.
One of the primary points of my blog entry on this issue, however, was to point out that while the names have changed, the underlying criticisms and concerns about the “scientificness” of the DSM have not. It comes up every time there’s a new revision, and I suspect will continue to come up for future revisions.
For all its problems — both real and imagined — the DSM-5 has been one of the more transparent and open efforts to update a professional manual of its kind. In fact, I know of no other scientific effort where the entire revision was open to public comment for a period of time where anybody was welcomed to submit feedback for consideration. (An even more open and transparent process would be to have all of those comments available for public view… perhaps next time.)
But I’m left with my original chicken and egg dilemma for which I can find no answer. If over-diagnosis occurs in the absence of diagnostic criteria for a disorder (such as in the case of “childhood bipolar disorder,” a disorder not recognized in the DSM-IV), is that the fault of the reference manual, or someone or something else?
I find it hard to wrap my head around the idea that a reference book such as the DSM-IV could have “caused” the explosion in diagnoses of childhood bipolar disorder in the past decade, given its absence.
So if at least part of the problem is not attributable to the book itself, but to professionals… isn’t at least part of the solution to focus on helping ensure any new revision of the book also includes ensuring clinicians (and primary care physicians) don’t just randomly start diagnosing new disorders from it?
I just don’t see the logic in laying the entire blame for an upcoming “epidemic” at the feet of a diagnostic manual when professionals — who should be expertly trained in mental health and diagnosis — are the actual ones doing the diagnosing.
John
Hi John. Your blog post has clearly generated a lot of discussion and for that, I am very appreciative. Let me reply to your last response to me:
1. We seem to have different opinions on what constitutes a “closed shop.†In an academic journal, the editors don’t choose the authors. In DSM, those in charge select the working groups, then rule on what those working groups come up with. That is like an academic journal limiting itself to only invited manuscripts. It’s a closed process.
2. Roughly 8,800 (or 88%) of the now more than 10,000 signatories identified themselves as mental health professionals. However, I believe Dr. Robbins already shared this information. If nearly 90% of the signatures are from mental health professionals, then it is reasonable to conclude that many professionals share the concerns about DSM-5 discussed in the Open Letter (http://www.ipetitions.com/petition/dsm5/).
3. You would have preferred a meta-analysis to a petition. What data sets would you have meta-analyzed? As far as I know, the DSM-5 Task Force has not shared its data; in fact, work group members are expected to keep all unpublished work confidential.
4. The American Psychiatric Association apparently wishes to limit discussion of DSM-5. They recently coerced the author of the DSM5watch website to change her site’s name, claiming trademark infringement. She felt bullied and changed the name of her site to http://dxrevisionwatch.wordpress.com. To read more about this, see the following: http://www.psychologytoday.com/blog/dsm5-in-distress/201201/is-dsm-5-public-trust-or-apa-cash-cow. Hopefully, APA won’t come after you for using “DSM-5” in the link to this very blog page. By having an open discussion about DSM-5 are we infringing on their trademark?
Jon
1. The NEJM selects which papers it will publish and which it does not. It is entirely the decision of the NEJM — and their hand-picked reviewers — and no outside influence in the world can change what the editors decide to publish or not publish. There is no transparency into the process or their mindset. This is true of virtually all peer-reviewed journals in print today.
Reviewers have their own biases and agendas which sometimes impact the independence and objectivity of the review process. Lacking transparency, there’s little information on how these biases are dealt with, or how they may impact publication of papers.
2. Thanks, indeed this question has been answered and now puts the petition in perspective and context.
3. I misspoke, as I should have also included a literature review as evidence worth consideration. According to the DSM 5 letter I referenced earlier,
4. A trademark lawyer could say more about this, but my understanding of trademark law is that if you don’t actively defend your trademarks, they become “weak” and easier to lose trademark protection in the future. So where some people see an attempt to intimidate, I see the effect of the U.S. trademark laws (because this other person you referenced was using the trademark in their domain name).
This area of trademark law is actually somewhat contentious from my understanding, but it all depends on whether you feel like going to court over the issue (and can get someone like the EFF to defend you).
Since the actual content of the website was never in contention and is safe, I think that’s the important thing, no? It’s also been my experience that when people don’t consult with an actual attorney when dealing with legal issues, their understanding of the issues is often clouded by their lack of specific knowledge about the area of law. (Just like a psychologist wouldn’t practice law, we would hope, I would also hope a lawyer wouldn’t attempt to give an MMPI or interpret its results.)
John
I feel like we’re going in circles, but hey, I’m game.
1. NEJM doesn’t choose who submits research for review. That’s the key. Further, NEJM’s interest is much broader than the DSM Task Force’s in that they are simply looking to disseminate medical research in the most general sense. Not that this doesn’t involve profiting from journal sales, but this is not so narrow a focus as creating and marketing a diagnostic manual with a preexisting underlying philosophy.
2. Thank you for retracting your erroneous assertion that the Open Letter petition was primarily signed by non-professionals. We now agree that almost 90% of signatures to date are from concerned mental health professionals.
3. What we wish to see more openness on is not the literature reviews the DSM work groups have conducted, but the rationale for proposed changes to disorders in DSM-5. Our doing our own literature reviews at this point wouldn’t address this issue.
4. It would appear that APA’s lawyer letter to Ms. Chapman is what attorneys refer to as a SLAPP letter, defined as follows on Wikipedia: “A strategic lawsuit against public participation (SLAPP) is a lawsuit that is intended to censor, intimidate, and silence critics by burdening them with the cost of a legal defense until they abandon their criticism or opposition†(http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation). Not exactly a way to encourage open dialogue.
Jon
1. You’re splitting hairs, and the NEJM was simply an example journal’s name… there are of course very narrow scientific journals. It’s silly to argue that the peer-review process is somehow open or transparent for the vast majority of academic journals out there.
2. If you could show me where I made an assertion that the letter was primarily signed by non-professionals, I’d be happy to do so. However, I never made such an assertion. The false assertion that was made — that all 10,000 signatories were professionals — was made by someone on your committee.
3. Doesn’t it logically follow that either a literature review supports or doesn’t support a new diagnostic category, or a change in diagnostic criteria?
4. Since none of us are lawyers, it’s pointless to debate this concern further. We wouldn’t encourage people to seek out treatment for schizophrenia from a lawyer, so I think it’s equally silly for mental health professionals to try and analyze a legal matter without the underlying background, experience and education.
Since all the blogger had to was change their name to continue blogging and being critical about the DSM-5 (which is exactly what she did), I’m not sure how anything was censored or silenced. (Arguably, had the blogger been aware of trademark law before using someone else’s trademark in their blog’s name, she could have prevented the issue from ever occurring in the first place.) Again, a lawyer would’ve explored many possible avenues with the blogger, but I guess it wasn’t worth exploring from her perspective.
John
1. We’ll just have to agree to disagree; I don’t believe the DSM-5 process is comparable to what happens at a peer-reviewed journal because–in the case of DSM-5–the content, reviewers, and those deciding on what is published are all working under the umbrella of the same parent group.
2. I apologize. You didn’t assert the Open Letter petition was primarily signed by non-professionals. You took Dr. Elkins’ slight misstatement that the petition was signed by 10,000 mental health providers and implied he was potentially wrong on this front, even though in the end you had to admit almost 90% of the more than 10,000 signatories are mental health providers.
3. Literature reviews are, as with all scientific data, subject to interpretation. I still don’t see how us doing some kind of lit review addresses or provides empirical support for changes the DSM-5 Task Force is proposing.
4. One doesn’t have to be a lawyer to know that threatening legal action for using the DSM-5 name discourages open discussion. Website name changes make info originally posted under old link names more difficult for people to locate. The legal intricacies notwithstanding, threatening trademark violation is an effective strategy should one wish to squelch discussion, regardless of whether one has a good case or not.
Also, John, you said:
“I asked about “diagnostic inflation,†because it is symptomatic of the inflammatory rhetoric being tossed around in this debate that has little basis in the scientific literature. I’m all for fun with words, but in my book, words should still mean something. I was just asking if this phrase actually had any meaning (or backing) in the scientific literature, and you answered — no, it doesn’t.”
Diagnostic inflation is not rhetorically inflammatory from my perspective; it is simple, descriptive language. It’s another way of saying ‘lowering of diagnostic thresholds.’ That it appears inflammatory to you is I suppose a subjective thing. When you lower diagnostic criteria, you inflate the number of people who quality for the diagnosis. What’s inflammatory about this statement other than the use of the word “inflation”?
Diagnostic inflation is not in itself a problem if the inflation of the diagnosis is based on diagnostically valid criteria. If this is your concern, then we agree on that point.
My problem with the proposed DSM-5 changes is not that there is an inflation of DSM-5 diagnoses. That’s not really the central point. As you suggested, it could be potentially helpful for people to have an expanded diagnosis, if you are reaching people who really need have a psychiatric problem. Speaking more accurately and technically, the problem is that the proposed lowering of diagnostic thresholds and proposed new diagnoses are lacking in evidence of diagnostic validity.
For example, dysphoric mood disregulation disorder has very very little empirical support of its diagnostic validity. It’s simply a way to try and create a label to replace what was previously identified, outside of DSM nomenclature, as “pediatric bipolar disorder” — a diagnosis with a very dubious history and with highly problematic diagnostic validity.
So, to be clear, the problem as I see it is not that diagnostic thresholds are being lowered or raised, but that the lowering or raising of diagnostic thresholds is lacking empirical support and/or the empirical evidence suggests such changes are based on questionable diagnostic validity.
In principle, the raising of diagnostic thresholds based on invalid diagnoses would be just as problematic and dangerous. What’s especially concerning in the case of the DSM-5, however, is that the lowering of diagnostic thresholds that are proposed by the DSM-5 are not only lacking evidence of validity in many cases, but they are changes that move in a direction that, in practice for many clinicians, could be used to justify expanding the marketing of certain dangerous psychotropic drugs, such as atypical antipsychotics — drugs that are still patented and very profitable — and yet also with potentially very severe and sometimes even irreversible side effects. I find this very disturbing to say the least, and I have published on the issue in a peer-reviewed article on the matter (http://onlinelibrary.wiley.com/doi/10.1002/jpoc.20039/pdf). When you consider the aggressive marketing of psychotropics directly to the public as well as directly to physicians, and enormous amounts of marketing dollars behind such a campaign, moving the DSM-5 in this direction if a very dangerous choice that will put many people at risk.
Best wishes,
Brent
Hi Dr. Robbins,
As with the DSM-IV before it, I agree, there are some disorders where the research doesn’t seem to support their inclusion in the main category of disorders that can be diagnosed for and reimbursed.
It’s not clear to me, however, that the DSM 5 working groups have made any final decisions about whether such disorders would actually make it into the DSM 5 main text (as is the fear). Or whether, instead, they might make it into a chapter that appears in the current DSM as “Criteria sets and axes provided for further study.”
I’m not aware of anything suggesting the DSM 5 will or will not have this chapter. It doesn’t appear on the current DSM 5 website that I could find.
And yet, it’s being diagnosed in thousands of children already. (As any regular read of WoP knows, I’m not a fan either of this diagnosis.)
What do we do when clinicians in the real world are diagnosing conditions that “don’t exist.” Is this a diagnostic manual problem, or is this a more serious problem about lazy diagnosing by professionals in general?
John
Dr. Grohol writes:
It’s far too late to “fix” the DSM 5 now (and I don’t believe it needs much fixing in the first place).
The second statement is reasonable to argue; the first statement is shocking if it means that crucial changes should not be made merely because it is too late to make them.
Dr. Grohol further writes:
… professionals will go on using the DSM-5 just as they use the DSM-IV, because insurance companies and those paying the bills will leave them little choice.
The ICD is a perfectly acceptable alternative. In the past there was substantial concord between DSM and ICD; that seems increasing unlikely to persist going forward.
Gentlemen:
As a journalist specializing in adult ADHD, I’ve been aware of the impending DSM revisions, and observing the emerging controversy and increasingly heated debate amongst various factions and professionals, for some time now.
I came upon your discussion in the course of preparing to write a piece which I’d hoped would inform and update my readers at ADHD from A to Zoë, my blog here at Psych Central. As an adult diagnosed with ADHD at 47, I have both a professional and personal interest in the topic.
Unfortunately, the tenor of your discussion has neither clarified my understanding of, nor quelled my concerns with the proposed DSM revisions, but rather has provoked a new discomfort with those in whose hands the well-being of my peers (namely, undiagnosed adults with ADHD) appears to rest.
In colloquial terms: you guys are stressing me out. I had turned to you for clarification and an objective discussion on the not-insignificant and pressing issues at hand.
I could not sit by passively observing this discussion without adding what I hope will be a compelling third voice: the voice of someone who will be directly affected on a very personal level by the issues you seem to have mutated into weapons to wield against one another.
I’m quite sure I’m not the only non-medical professional reading this dialogue. I’m disappointed that the valid debate has been muddied by unhelpful asides, and thinly veiled personal attacks.
Please, gentlemen (and I am not unaware of the irony of this coming from me) – FOCUS! We need to come up with the best diagnostic tools not just for those with ADHD, but for everyone who so sorely needs your HELP. Let’s have the meat of the arguments without the nasty bits.
Thank you.
Zoë Kessler, B.A., B.Ed. (Adult Education)
P.S. – on the other hand, maybe I’m just naive and need to develop a thicker skin.I admit the nature of your discussion has been vastly more enlightening than a purely objective discussion of the topic at hand. Still, I felt it important and relevant for you to hear from someone who is personally affected by the outcome of this discussion, and also from the perspective of a former consumer of your various professional services.
Zoe and John–
The Open Letter to the DSM-5 is specific in its concerns about ADHD diagnosis as proposed for the DSM-5.
Here are the statements relevant to ADHD in the Open Letter to DSM-5 petition:
“The proposed reclassification of Attention Deficit/Hyperactivity Disorder (ADHD) from Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence to the new grouping “Neurodevelopmental Disorders†seems to suggests that that ADHD has a definitive neurological basis. This change, in combination with the proposal to lower the diagnostic threshold for this category as described above, poses high risk of exacerbating the extant over-medicalization and over-diagnosis of this disorder category.”
We do not believe that professionals “will grab a hold of these new diagnoses and start looking to diagnose them to everyone who comes into their office.” In general, we do not believe that individual clinicians should be responsible for worrying about epidemiological trends, but rather accurate diagnosis of the clients/patients who enter their offices, clinics, and hospitals. Clinicians should be well-educated and using a book that has a solid basis in the scientific literature and has been vetted–over an adequate period of time with adequate research–as reliable, valid, and safe.
As for problems with DSM-IV, certainly there is no perfect product, as Dr. Grohol certainly agrees, and there are plenty of valid critiques, many coming from Allen Frances himself. Clinician bias (for example, stereotypical views about gender) is certainly an issue in diagnostic trends and patterns, as evidenced by Dr. Grohol’s comment about trying to envision borderline personality disorder in a man. Ideally, DSM-5 would be working to correct such problems, and to warn clinicians about their own possible biases and stereotypes.
The point is that mental health professionals are not required to become complacent and simply exacerbate longstanding problems just “because insurance companies and those paying the bills will leave them little choice.”
We do, however, agree with Dr. Grohol about the importance of peer-reviewed scientific studies. In fact, a primary purpose of our petition was to point out the relative lack of such research supporting some areas of the DSM-5 draft. There is, of course, no empirical research on the lack of empirical research in DSM-5. Our petition, just like Dr. Grohol’s blog posting (which has 5 references, one of which is a peer-reviewed journal article containing a research study), is a review of another document (the DSM-5 proposals). Dr. Grohol wrote, “While petitions are a great way to bring light to a particular problem or set of problems, which this letter purports to do, they are a horrible way to conduct science and research.” I agree with this, and would add that we do not consider our petition a scientific study any more than Dr Grohol would probably consider his review of our petition to be a scientific study.
Our claims in the petition are well documented in the empirical literature.
There are plenty of studies on the growing prevalence of ADHD in children and adolescents, and less on adults. See, for example, the following summaries of studies at the Center for Disease Control and Prevention:
http://www.cdc.gov/ncbddd/features/birthdefects-dd-keyfindings.html
http://www.cdc.gov/ncbddd/adhd/workshops/epi.html
One study found that broadly defined ADHD had a prevalence rate of 16.4% in adults: http://www.ncbi.nlm.nih.gov/pubmed/16371661
Some research has suggested that the prevalence of ADHD (like many other mental disorders) declines with age, though this in itself is not sufficient justification to lower criteria for adults: http://ebmh.bmj.com/content/12/4/128.1.extract
As for possible inflation of GAD prevalence, there is already one study suggesting the prevalence could raise by a full 9%:
http://www.ncbi.nlm.nih.gov/pubmed/20815664?tool=bestpractice.bmj.com
There is a growing body of scientific literature on the epidemiological issues associated with Attenuated Psychosis Syndrome/ Psychosis Risk:
http://archpsyc.ama-assn.org/cgi/content/abstract/67/3/241
http://schizophreniabulletin.oxfordjournals.org/content/27/4/563.short
http://www.ncbi.nlm.nih.gov/pubmed/16004653
There is virtually no research on “Disruptive Mood Dysregulation Disorder,” so I cannot provide peer-reviewed studies on that.
There is also plenty of literature on the side effects of neuroleptic medication. I don’t have the links on hand, but I’ll provide a few citations here.
Ho, B-C., Andreasen, N. C., Ziebell, S., Pierson, R., & Magnotta, V. (2011). Long-term antipsychotic treatment and brain volumes. Archives of General Psychiatry, 68, 128-137.
Reynolds, G. P. (2010). Metabolic side effects of antipsychotic drug treatment – pharmacological mechanisms. Pharmacology & Therapeutics, 125, 169-179.
Roke, Y. van Harten, P. N., Boot, A. M., & Buitelaar, J. K. (2009). Antipsychotic medication in children and adolescents: A descriptive review of the effects on prolactin level and associated side effects. Journal of Child and Adolescent Psychopharmacology, 19, 403-414.
Rummel-Kluge, C., Komossa, K., Schwarz, S., Hunger, H., Schmid, F., Lobos, C. A., Kissling, W., & Davis, J. M. (2010). Head-to-head comparisons of metabolic side effects of second generation antipsychotics in the treatment of schizophrenia: A systematic review and meta-analysis. Schizophrenia Research, 123, 225-233.
Uchida, H. Kapur, S., Mulsant, B., Graff-Guerrero, A., Pollock, B. G., & Mamo, D. C. (2009). Sensitivity of older patients to antipsychotic motor side effects: A PET study examining potential mechanisms. American Journal of Geriatric Psychiatry, 17, 255-263.
I hope that satisfies your thirst for more substantive commentary, Zoe. If you have specific questions for me, the Open Letter Committee, or to Dr. Grohol, just ask.
Best wishes,
Brent Robbins, PhD
Director of Psychology Program, Point Park University
Secretary, Division 32 of APA
Thanks, Dr. Robbins. I appreciate your response and certainly intend to contact a number of professionals and experts in the field to address my remaining questions.
I am preparing a series of posts in an effort to help me and my constituents understand the discussion, the proposed changes, and the potential impact on the lives of individuals with ADHD.
I will contact both you and Dr. Grohol by PM shortly.
Best,
Zoë
Zoë Kessler, B.A., B.Ed. (Adult Education)
Author and Blogger, Psych Central, ADHD from A to Zoë
Hello Dr. Grohol,
I am a psychologist who shares the concerns of the
Open Letter Committee. Perhaps more importantly, however,
I was misdiagnosed with AD/HD while a teenager. I was
placed on Ritalin, which gave me nausea and insomnia. My
prescriber, a well trained psychiatrist who had completed
her residence at the prestiguous Mount Sinai Medical Center
in New York, never ruled out other possible causes of my poor
concentration and poor memory. 15 years later I discovered
the real cause: I had undiagnosed severe obstructive sleep
apnea, and was losing massive amounts of oxygen to my brain
every night. If my teenage psychiatrist had bothered to
take the time to consider sleep apnea, I could have gotten
treatment for it as a teenager instead of limping through
college and grad school unable to remember anything teachers
told me. Later, after getting good treatment and working
as a psychologist, I have encountered many patients with
misdiagnoses of AD/HD whose doctors never considered other
possible causes. Everybody knows AD/HD is overdiagnosed,
especially those of us whose lives have been touched by its
misdiagnosis.
Hi Dr. Arnold,
Thanks for sharing your story with us.
So clearly there’s some mis-diagnosis going on with all mental disorders. In your case, it seems it was a problem with the specific professional, and in the other cases you mentioned, again, it appears it’s a problem with professionals who don’t properly consider alternative diagnoses.
How is this the fault of the book? Wouldn’t all of this energy be better directed at your colleagues who seem to inadequately trained in the art of diagnosis and properly considering differential diagnoses? We have to have as a given that (a) any human-invented diagnosis system is going to be imperfect and (b) in use, it will be imperfectly applied, no matter how well or scientifically designed.
John
John,
It is the fault of the book because the diagnostic criteria are already too loose, and the DSM-5 will further loosen the criteria. The inadequate training of many DSM users makes this more of a concern, not less of one. Looser criteria make the tool easier to misuse. With all the misdiagnosis that occurs, the commonsense thing to do is to tighten the criteria, not relax them.
Hi Dr. Arnold,
To make the generalized claim that the DSM-5 will “further loosen the criteria” across the board is a bit too broadly worded to be accurate. Unless you were 17 when you were diagnosed, for instance, your ADHD diagnostic criteria remain exactly the same.
The DSM-5 loosens some criteria and refines other criteria in the draft that’s been published. We have no idea which of these changes will make it into the final revision.
If professionals are already mis-applying the existing specific criteria, how is adding even more criteria to each diagnosis going to help? If we already see that professionals don’t bother to keep tabs on every criteria for every diagnosis made, adding more criteria is highly unlikely to change this problematic behavior.
John
To be honest, I sense a fallacy in the rationale of the original text. Namely: if it has usually been done in one way, this is the right way. The DSM has always made new disorders in not an argument why it should do so in the future. Moreover: that scientists used to keep the knowledge and right of discussion to themselves in scientific literature (available only to the scientists and the rich) is not an argument that this mode of knowledge production should persist.
Maybe it is actually time to critically evaluate the new revisions of the DSM as well as critically evaluate the (normative) value we attribute to the manual.
Moreover, it might be the time to evaluate the ways in which humanity practices science as a whole. Maybe it is time to no longer separate the scientific debate from the societal or, as you call it, popular vote. Why don’t scientists have to bear the (social) responsibilities of their work as politicians, for example, do? What makes science so much different from the other public goods that it should not be incorporated in the public or societal debates?
Sam Schrevel, MSc
You either misunderstand or misconstrue my argument. It’s not that “this is the way it’s always been done, so stop yer complaining.”
It’s that the rhetoric being put forth by critics is inflammatory and ridiculous, with words like “epidemic” and a “full scale revolt.” Unless psychologists and researchers have become soothsayers now, too (in addition to the lawyering some are trying to do in this thread), I find such hyperbole unhelpful to understanding the problem and finding workable solutions.
It also puts such psychologists in a very negative light in my book, as they are making predictions and prophecies that they cannot possibly know will come true.
Groups and various independent researchers have, for decades now, proposed alternative diagnostic models. None of them have caught on or sparked more than cursory academic interest. Critics should examine why that is before proposing yet again that the current system is “broken” and needs replacement.
There’s wisdom and knowledge there, if only people learned from their history.
John
I’m coming late to the discussion so forgive me if I say something that has been brought up in other blog posts…
What is missing from this discussion about the issues with DSM-5 and how it relates to patients is the complexity of the diagnosis process. A patient might be diagnosed with something purely from an insurance and billing standpoint. Not every mental health professional sees their patient as being purely their diagnostic code. This leads to these questions:
Where are these “epidemic” numbers coming from? Are they based solely on diagnosis codes? Who is doing the diagnosing? Without answers to these questions, how can there be a reasoned debate?
The supposed issues of over/under diagnosis seem to have more to do with the lack of training on the part of health professionals rather than the DSM itself. The diagnosis process itself is very flawed and until that is revolved, I can’t see how the new DSM will make or break that process.
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