© Copyright 2011 Paula J. Caplan All rights reserved
DSM-5 leaders fail to reassure about lack of science, openness, and harm
This essay is the second and last part of a description of the June 8, 2011, letter sent by DSM-5 heads David Kupfer and James McNulty to three representatives of MindFreedom International (MFI): MFI Executive Director David Oaks; a founding member of MindFreedom Florida, psychiatric survivor, and human rights activist Frank Blankenship; and me. Their letter was in response to questions and concerns the three of us had sent to them in May. Our message to them appears at the end of this essay.
Kupfer and McNulty wrote that their upcoming field trials will include use of multi-dimensional assessments to see whether they help gauge if and how patients are improving. But consider this: They wrote their letter on June 8, 2011. The May, 2012, American Psychiatric Association convention is the time set for adoption of the final content and organization for DSM-5. How much information about complicated human behavior do you think they will be able to obtain and analyze in the next 11 months? Even if they miraculously discovered their system to help gauge patients' improvement in, say, six months (they need some time after that to analyze and write up their findings, after all), they would know absolutely nothing about the usefulness of that system beyond that brief period of time. The fact that new drugs can go on the market without longterm usefulness or negative effects being studied should not be used to justify this rush to try to conclude that a vast, heretofore unproven system should be hurriedly implemented in the next manual.
We had expressed concern about their proposals to add Psychosis Risk Syndrome and Temper Dysregulation with Dysphoria, because these carried enormous risk that of greasing the skids of, for PRS, young people who seem to some therapist or other (or teacher or parent) to be a little strange, and for TDD, to lose their temper "too much," getting them labeled early as mentally ill, with all the dangers that go with that. Of course, their proponents claim that this is actually about trying to "catch problems before they get worse," but while that is a worthy aim in principle, the claim to have a crystal ball is unwarranted by the research in these areas, and preventive aims tend these days to follow the "Let's get them on medication fast!" pattern, with risks of meds and of damage to self-confidence, as well as development of a sense of hopelessness to be deadly serious.
Kupfer's and McNulty's response to those concerns: They inform us that the titles have been changed (DSM folks do that a lot, as though it makes any difference other than to try to throw people off the track and make them think some good change has been made) to Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder. They say that one aim of the field trials is to see if clinicians can accurately recognize the symptoms associated with a disorder. Now, let's consider what that means. If you tell a clinician that someone who seems troubled and acts in strange ways has a real thing called Attenuated Psychosis Syndrome, they know they are supposed to assign that label. Telling someone that a horse is really a zebra increases the chance that they will look at horses and see zebras. And since a major concern about these two categories is that they imply that there will be even more serious trouble some years down the road, it seems irresponsible to try to test much of anything about these manufactured categories in a field trial of a few months.
We had written to them about addictions: "The potential list of kinds of behavior that could be called addictions is endless. What criteria would make it possible to list only those that have been proven by good scientific research to be addictions and that would benefit sufferers by having them listed in the DSM?"
Kupfer and McNulty responded only that addictions that are "true mental disorders" that need to be defined narrowly rather than broadly and that that is why pathological gambling is the only addiction unrelated to a substance that is proposed under Substance Use and Addictive Disorders. They did not address the massively important and controversial questions of how to define a "true mental disorder," despite acknowledgements from previous DSM heads about the impossibility of coming up with a good definition, nor of how to decide what should be called an addiction.
We had expressed concern about the proposal that had come from outside the Task Force, to add Parental Alienation Syndrome, and they replied that it will not go in the next edition. As I have noted elsewhere, this does not mean that it will not go in the manual under some other title or in some altered form.
We had objected to the proposal to include Paraphilic Coercive Disorder (PCD: see my blog essay about the problems with this: "Does Committing Rape Mean You Are Mentally Ill?" http://www.psychologytoday.com/blog/science-isnt-golden/201106/does-comm...), which would be a virtually automatic mitigating factor for rapists on trial in court. Kupfer and McNulty simply wrote: "The Sexual and Gender Identity Disorders Work Group is only discussing Paraphilic Coercive Disorder for inclusion in the DSM-5 appendix section on criteria sets for further study."
If that strikes you as innocuous, it shouldn't. There are three reasons for this:
(2) Why should an act of violence be automatically reclassified as a mental illness (please see my previous essay about PCD), especially in light of an Assistant Attorney General of the United States' notice to the authors of an earlier DSM edition when PCD was first proposed, to the effect that if they included PCD in the manual, the Attorney General would file lawsuits? Seems that somebody wants awfully badly to get rape into their book.
(3) The appendix to which they refer has been around since DSM-III-R, when Task Force Head Robert Spitzer created it as a way of trying to deal with the vast protest about two particularly misogynist categories his group had planned to include. The appendix has not contained anything like "Warning: Do NOT apply these labels to anyone, since there is as yet no scientific evidence that they represent real entities," and in fact the labels have been widely used, and drugs have received FDA approval to treat these entities. One such category was actually declared by the European Union's equivalent of the FDA to have been shown by research not to be a real entity. Furthermore, as soon as one of these allegedly provisional categories went in that new, special appendix, it was simultaneously (but without public announcement) also placed in the main text of the manual, which is supposedly reserved for fully proven categories (though even that is not an accurate description of most of the categories in the main text). Any attempt to silence opponents with the claim that a label is "only" going in that provisional appendix should be ignored.
The following is the full list of questions and recommendations that Oaks, Blankenship, and I had sent to the DSM-5 heads. You will see from this essay and my previous one here that they simply did not respond to five of the seven that were about procedures and to four of the seven that were about content. Many of the ones they ignored had to do with requests for them to be open and aboveboard about their procedures and about the limitations and dangers of the manual and psychiatric drugs.
Questions and Recommendations about Procedures
1. Because of inherent and ongoing significant problems in the process of creating DSM-5, we request the publishers announce an indefinite delay on finalizing any changes.
2. You said you received more than 8,000 comments during the brief period of time when you opened your website to input from the public.
(A) What has been done with those comments?
(B) How many more times will you make public the plans for what will go in DSM-V and open your site for further comments from the public, and what will be done with those comments?
(C) Where can the public see the schedule for the steps you plan to take between now and the time the final version goes to press?
3. When will be the last opportunity for you to listen to suggestions for changes?
4. Given the intense opposition not only to the procedures you have been following in preparing DSM-V but also to much of the proposed content, is there any reason for your continued rush into print? The brief delay you have already implemented comes nowhere near to being adequate for dealing with the serious concerns that have been expressed, including those expressed by the lead editors of the current and the two previous editions of the manual.
5. Given the vast amount of harm caused by use of DSM categories, as well as to the widely-believed but mistaken assumption that some body such as the FDA must be regulating the use of psychiatric diagnosis, would you be willing to join an initiative to hold Congressional Hearings about psychiatric diagnosis? In such hearings, both those who feel they have been helped and those who feel they have been harmed could speak, and a national conversation about ways to minimize the harm could begin.
6. Are you aware of any well-done research that proves that psychiatric diagnosis is helpful in any way other than in making possible reimbursement by insurance companies?
7. When will you provide additional opportunities for conference calls such as this one?
Questions and Recommendations about Content
1. In light of the impression the public has that the DSM-V is solidly grounded in high-quality scientific research, what steps do you plan to take to disclose to therapists and the public the extent to which it actually is not grounded in good science?
2. Given the power and influence of the DSM, will DSM-V include alerts to therapists about the many kinds of harm that can result solely from receiving just about any psychiatric diagnosis, and will it include concrete suggestions for ways that therapists can help minimize the harm that can result? As a start, we suggest that you include the following, Black Box warning in the next edition:
""The publishers of DSM do not intend this manual to be the basis for any professional or legal decision that may limit the liberty, or discriminate against, any individual who receives a diagnosis of a psychiatric disorder."
3. Will DSM-V itself make it clear that having a psychiatric diagnosis has not been shown to improve treatment or prognosis and can even get in the way of good treatment and outcome?
4. What steps other than within the manual itself will you be taking to educate the public about the lack of usefulness of psychiatric diagnosis for treatment and outcome? This is particularly important, given that few people realize that the manual itself does not provide treatment recommendations.
5. We have many recommendations about specific categories and would be glad to provide more on request. A few suggestions are:
(A) Introduce a category called Toxic Psychiatric Drug Syndrome to provide for systematic documentation of such effects and, in the first instance, to call attention to the negative effects that psychotropic drugs often have.
(B) Do not include Paraphilic Coercive Disorder, which would become an automatic mitigating factor in cases of rape.
(C) Do not add Parental Alienation Syndrome, which has no scientific foundation, which was created by a known advocate of child-adult sex, and which has been used with disastrous consequences in child custody cases.
(D) In light of the kinds of concerns that many have already expressed, do not include Psychosis Risk Syndrome or Temper Dysregulation with Dysphoria.
6. No convincing case based on solid science has been made that dimensional assessments
(A) Are of any real help in trying to assist people with emotional problems or
(B) Do not carry significant risks of their own
7. The potential list of kinds of behavior that could be called addictions is endless. What criteria would make it possible to list only those that have been proven by good scientific research to be addictions and that would benefit sufferers by having them listed in the DSM?
As I was completing this essay, a reader drew my attention to the fact that the DSM-5 website now contains an announcement that it will remain open for public comments through July 15. Kupfer and McNulty say in their letter to us that there will be an additional period when they will accept comments from the public, but if you object to anything they are doing, I urge you to start a petition (online, ideally) and gather signatures from people who share your concerns. Send the petition to the media and the DSM-5 heads. There is no need to wait for them to declare that they will again accept comments. Indeed, one wonders why they only want to be open to people's concerns on their strict schedule. Those who suffer because of psychiatric diagnosis do not suffer on schedule but on an ongoing basis.