The Inside Story of Our Conference Call with the DSM-5 Heads
©Copyright 2011 Paula J. Caplan All rights reserved
In Part 1 of this essay, I described some of the historical lack of openness that characterized the process of composing the successive editions of the major manual of psychiatric diagnosis, the Diagnostic and Statistical Manual of Mental Disorders (DSM),  and indicated that, if anything, the transparency has only decreased as DSM-5 is prepared.
This matters so much, because the welfare and in some cases the very lives of the millions of people in the United States and dozens of other countries are profoundly affected by what the DSM authors decide is a mental illness and what they decide are the varieties of mental illness. As I have noted,  countless individuals have encountered devastation of an almost unimaginable variety of sorts simply because of being given a diagnosis from the DSM.
When I wrote my first book about this,  describing the insider's view of the process of composing the DSM, deciding who is and who is not normal, it was based partly on what I had observed during the time I served as an advisor or consultant to two DSM-IV committees. As I sent my editor one chapter after another, she read them and at some point wrote to say that I sounded incredibly naïve, because I kept describing how surprised I was each time I learned something more about how those who were preparing DSM-IV ignored or distorted the scientific research, how little they seemed interested in hearing about the harm that resulted from diagnosis, and how they publicly misrepresented some of the steps they took. My editor wondered why I had not come to expect this sort of thing from them.
I explained that each time I learned something new and troubling, I assumed that now I knew the worst. As a psychologist who previously had uncritically taught the DSM to my students, I needed a lot of time to register how seriously flawed was the process of making decisions about what would and would not go into it.
Although I do not consider myself an optimist, perhaps I am more optimistic than I assume. A few days ago, David Oaks, the founder and head of MindFreedom International (MFI), a group of - depending on whom you ask - mental health consumers or psychiatric survivors, asked if I wanted to participate in a conference call that the top DSM-5 editors were holding with representatives of consumer and family groups. I actually thought there might be a chance for truly open dialogue.
Here is what happened. David Oaks, Frank Blankenship, and I were to represent MFI, and Oaks had heard from the call organizer that, besides the DSM representatives, there would be 20 of us on the 60-minute call, which was scheduled for Monday, May 2. I thought some of us might share the same concerns or have the same questions and that the call would be very brief, at most allowing us less than 3 minutes for each of 20 questions and answers. With Oaks and Blankenship, I created a 2 1/2-page document with seven questions/concerns/suggestions about procedure and seven about content. I sent it to Tamara Moore, who had emailed information about how to dial in to the conference call, asking that she circulate it ahead of time to all participants, in order to increase the chances that we could work efficiently and not overlap too much. We were short on time, but I got the document to Ms. Moore on May 1. I asked her to copy us in when she sent out the document.
By the time of the call on Monday, I had not heard back from Ms. Moore, nor did I see any email from her to the participants with our document included. Well after the conference call took place, Ms. Moore told me that she had sent the list only to the DSM people and would not send it to the others. She further wrote, "We are not prepared to forward your list of questions to all participants on the call, nor share the list of participants with you."
In the communications Ms. Moore sent, there was no information about her role in the process, so after the call, I wrote to inquire. She replied that she is employed by "GYMR Public Relations, the communications firm that supports the DSM-5 team at the American Psychiatric Association." So a public relations firm is, shall we say, regulating what the DSM people are describing as an open dialogue.
The call began with a woman introducing herself as Dr. Carol Bernstein, President of the American Psychiatric Association. She told us that this call was part of APA's request for input about how the DSM affects "real people." She said the APA needs "the expertise of patients, families, and their advocates" and that they would have other such calls "down the road," though no specifics were given.
We learned that there were three DSM-5 representatives on the line, including Jim McNulty, a past president of the National Alliance for the Mentally Ill (which in my experience has done some good work, particularly in certain of their chapters, but is known to be heavily funded by drug companies), who was the DSM group's chosen consumer representative; and the top two DSM-5 men, David Kupfer and Darrel Regier. No one said how the time would be used, but immediately, McNulty began to speak, then the other two. This took up nearly half of the call.
McNulty said that this was the second time in fifteen months that they had "invited public comment" and that that was "a level of public comment that's unprecedented in medicine." Twice in fifteen months does not seem like much, when, as he also said, the social implications of psychiatric disorders are vast. Of course, he said that the other time, the DSM-5 website had been opened for input from all and sundry, and they had received more than 8,000 comments. Short of making public their work groups' deliberations and minutes of their meetings, however, there is simply no way to know what they did with those comments. McNulty said that the comments "did influence much of what we're going to be talking about." But from what I saw firsthand of those kinds of internal deliberations in the work on the previous edition, input from any professional or nonprofessional source that did not fit with what the committee members want were almost always ignored. And, as noted in Part 1 of this essay, those who work on the DSM-5 have had to sign nondisclosure agreements, making openness even less likely than for previous editions.
Dr. Kupfer told us that this Wednesday (that means today, as I write this), the www.dsm5.org site would again be opened for public comment. He said that links would be provided for comments at every proposed revision and every change and that this would continue until June 15. (Note to readers: Please consider going to the site and writing whatever you want to say. Your comment may or may not be acted upon, but your silence certainly will do no good. And please consider posting a copy of your comments as a Comment at the end of this article.)
Kupfer and Regier made some opening remarks about DSM-5's content and structure that I will address in Part 3 of this essay, where I will also address the content of the questions they were asked and their replies, but here I want to focus on the matter of openness to dialogue.
McNulty asked us to keep our questions to 1 ½ to 2 minutes each. A woman's voice then told us that if we wanted to ask a question, we should press *1, and I did that immediately. After a silence, the same voice said that there would be a silence while the queue was prepared. Nothing was said about how that would be done. Who would choose the speakers and their order?
In all, six questions were asked, so 14 of the non-DSM callers never got to speak. And speaking of not getting to speak, each person who was called on to ask a question was rapidly cut off, so that if they had responses to the DSM person who was answering their question, they were not heard. I realized this when the respondents failed to identify themselves, and I asked if they could say their names as they answered...and understood that no one could hear what I was saying.
I was the second questioner. I said that, in light of the vast number and array of serious concerns that have been expressed about DSM-5, including by the top editors of the three previous editions, I wondered if there was any reason not to delay indefinitely its publication. In Part 3, I will tell you their reply, but what relates to the question of openness to dialogue is that I expressed appreciation for their having arranged for this conference call and said that, because there would be no time on this call to address most of the questions, we wanted to ask when further calls could be scheduled and/or if they would arrange to continue the dialogue via email. At one point, some DSM person (I couldn't tell which one) said that email dialogue would not be possible. No explanation was given, and not a word was said about other ways to continue the dialogue.
David Oaks had a chance to speak briefly and thanked Dr. Regier for participating in the call, noting that over many years, he had tried repeatedly to communicate with Dr. Regier and had never received a reply of any kind. Dr. Regier did not respond to this.
In a way, the most telling moment in regard to openness to what "real people" have to say came in response Oaks' raising of the concern about the ways that DSM labels have been harmful: McNulty said that "Humility is in order," because "we" had not realized the extent to which, for instance, the forensic community uses the DSM. I am rarely speechless, but I sit here now, aware that I cannot find an adequate reply to one of the top DSM people's claim about such ignorance. In the decades since successive editions of the DSM have ballooned in size, as more and more new categories have been added, have the world's most powerful psychiatrists and their allies not been listening? I know that I am only one of an enormous number of people who have tried since 1985 to tell those at the top about people who have lost rights of all kinds or lost custody of their children solely on the basis of even some of the milder diagnostic labels. As the faces of many of those whose suffering I have seen firsthand come to my mind now, I am stunned into silence.
 American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders. Washington, D.C.: APA.
 Paula J. Caplan. (1995). They Say You're Crazy: How the World's Most Powerful Psychiatrists Decide Who's Normal. Addison-Wesley. See also psychdiagnosis.net
 Caplan, 1995.