My two years of trying to work with the DSM people taught me that psychiatric diagnosis is largely unscientific (I am a research methodology specialist) and that the process of creating the categories is often astonishingly arbitrary or intensely political. This makes it all the more appalling that the whole enterprise of psychiatric labeling is completely unregulated. No one and no government or professional body exercises the quality control — or discipline for lack of that control — that ought to be exercised by the lobby group that is called the American Psychiatric Association, which creates, publishes, markets, and profits from the manual.
Given that at least half of everyone in the United States will be diagnosed as mentally ill at some point during their lives, at least 150 million people in this country alone are at risk of harm from receiving one or more labels, in addition to many in the dozens of other countries where the DSM (including translated versions in many languages) is sold. In important ways, then, the APA should be seen as embodying many of the dangers of what are usually considered the multinational corporations, whose actions have global impact and who reap vast profits from their products with little concern for the harm that they cause. The APA has apparently earned more than $100 million from the current edition of the DSM, and there is no indication that they have spent one cent of that money even to try to document the harm done by the manual, never mind to redress any of that harm. The APA does not have to care, and no one has held them accountable.
Although in recent years, much has become known about the harm caused by Pharma and by involuntary commitment and forced treatment, surprisingly few people have seemed to notice that everything bad that is done to patients in the mental health system begins with psychiatric diagnosis. These diagnoses are the fundamental building blocks for damage, because they are used to justify a host of terrible approaches, on the grounds that those are the ways to treat someone who is labeled mentally ill. Even in a superficially more innocuous way, once someone is psychiatrically labeled, even if the treatments are not actively damaging (such as interminable psychotherapy), the fact that the person has been labeled gives authority to the therapist who continues with ineffective treatment, because the therapist who assigns the diagnosis tends to be considered the expert about what the suffering person needs.
Until recently, almost no one has tried to hold the APA accountable for the harm for which their diagnostic manual is the “first cause,” but that has recently changed (more about this subsequently). Although individual practitioners ought to be held responsible for studying how the DSM is put together and therefore knowing that its contents do not hold water, that giving a suffering soul a psychiatric label does not improve the outcome, and that giving someone one of these labels carries many risks of harm, many of them simply are unaware of these facts, partly because the APA has so effectively made the DSM into the diagnostic bible, and clinical training programs and the authors of abnormal psychology textbooks do little or nothing to call its validity and alleged helpfulness into question or to warn of the harm it can cause.
To my knowledge, no one has tried to hold the relevant people in the APA responsible for their role in causing harm. But when a corporation that manufactures automobiles knowingly puts dangerous vehicles on the market, claims that they are safe, and fails to warn its distributors about the danger, it is clear that the corporation is the first cause of the harm that results, and it ought to be held accountable. The corporation that is the APA needs to be held similarly accountable for the harm that it causes, and a first attempt at doing so has recently begun, as will be described.
In my 1995 book where I describe what I learned as an insider in the DSM process, I sadly speculated that the APA was so powerful that lawsuits held the only hope of stopping them from causing harm. In all that time, I have been unable to find an attorney who both appreciates the importance of the role of psychiatric diagnosis in causing harm and has enough financial security to be able to take on this kind of case.
Several years ago, psychiatrist Allen Frances, probably the single individual responsible for the pathologizing of millions more human beings than anyone else in history, began lighting into the people preparing the DSM-5, the edition due to be published in 2013. He claimed that what they were doing was unscientific and would cause harm. Frances had headed the Task Force that prepared the DSM edition that is currently in use and has been since 1994, the DSM-IV (and its slightly revised offspring, DSM-IV-TR, of which he was one of three editors). He was the person who had invited me to serve on two of his Work Groups, telling me that for his edition, “this time” the decisions would be based on the science, and “this time” they would have open and honest debate. I smiled to myself when he told me that, because that was what Robert Spitzer, who oversaw the production of the two previous editions, had said about his. But I wanted to believe what Allen told me. After two years, I quit his Work Groups when I saw how he and his colleagues used junk science to support whatever they wanted to do and ignored, distorted, or frankly lied about well-done research when it failed to support their aims. I also quit when I saw that, despite my sending them reports of people harmed by their labels, he and his colleagues failed to act to try to prevent that harm, and some even claimed publicly that they caused no harm.
When criticizing the DSM-5 leaders, Frances writes as though his critique had sprung straight out of his own head, failing to cite the enormous number of people who had legitimately voiced those criticisms about his own editions. Furthermore — and strangely — although he has actually gone so far as to say that there is no good definition of mental disorder, declaring that it’s “bullshit,” he nevertheless continues to spend a great deal of time claiming that for his editions of the manual, the process was painstakingly scientifically grounded.
One might say that there’s no harm in Frances’s railing against DSM-5 and that in fact he is doing a service by pointing out its dangers. There are several problems with that, however, and I will state one here: Because of the drama of his position, having headed DSM-IV and now casting himself as Cassandra for DSM-5, so much attention has been focused on the forthcoming edition that the harm currently being done every day by his own editions is being overlooked. Certainly neither Frances, who apparently no longer belongs to the APA for reasons the APA will not disclose, nor anyone currently within the APA has taken steps to redress any of that harm.
Months before last May’s APA convention, where it appeared that the vote would be cast to send DSM-5 to press, I contacted the brave PsychRights attorney James Gottstein, who has done so much brave work to reveal drug companies’ abuses and secrets and to fight against involuntary commitment and treatment. I asked him about some grounds I had identified for lawsuits about harm from psychiatric diagnosis. He suggested to me that, given that I hoped to draw attention to the harm already done by diagnosis and to do so before the APA’s vote, the better thing to do would be to file complaints with the APA about the violation of its ethical standards in the creation and promotion of the DSM.
My first step was to send out a request for stories from people who had been harmed because of receiving psychiatric labels. Since the APA requires that complaints involve harm suffered in the past ten years, I looked for stories that met that criterion (we would argue that even if they had been diagnosed more than ten years before, the suffering experienced in the past ten years ought to be considered legitimate grounds for complaint), for indications that the labels they had been given came from the DSM and not the International Classification of Diseases or some other source, and for clear causal connections between getting a diagnosis and experiencing harm. I then offered to help each such person prepare a complaint if they wished to do so.
In late April of this year, nine complaints were filed. Seven were by individuals who had been harmed, one was by someone whose loved one was harmed, and one was by me as an “interested party” who had seen harm caused. All of us listed quite a few of the APA’s published ethical standards that had not been met, those which in essence require its members to make patients’ welfare paramount and to take careful account of scientific research. In the eight other than mine, the respondents named were the three editors of DSM-IV and DSM-IV-TR. For mine, I named only Allen Frances, because I had had so many direct communications with him that it made sense to focus on those interactions, which revealed that he knew about the lack of good science in his work and some of the harm that labeling had caused. Each of us complainants requested that the APA notify us that our complaint had been received and tell us what the next steps would be, since the APA’s published material about complaints procedures is rather general.
For weeks, no one heard anything from the APA. Requests for responses finally brought two pieces of news: One was that Allen Frances was no longer an APA member, and the other was that the other two respondents, Drs. Harold Pincus and Michael First, are both members of a particular APA district branch in New York state, so the complaints other than mine would be handled by that district.
Considering what to do about my now moot complaint led me to ask myself the question, “Who, besides those three editors, is genuinely responsible for the harm done by the DSM?” As soon as that question came to mind, the answer was clear, so I got in touch with the other complainants, each of whom then wrote to the APA to say that they would be submitting amended complaints and that no action needed to be taken on the original ones.
The answer to the question I asked myself was, “Everyone who has been a president or a trustee of the APA corporation from 1988, when the DSM-IV Task Force was appointed, to the present is responsible for the harm that has been done. Each of them, because of their positions, knew or ought to have known that the manual is not scientific, does not improve outcome, and carries great risk of harm, and each of them should have made that information known to professionals and the public. Had any one of them done so, much of the harm would have been prevented. In the absence of such action, both many professionals and the public have believed that diagnosis is scientifically grounded and that classifying patients according to the DSM will be helpful to them.”
Then an additional part of the answer became clear: “The APA itself, as an entity, is also responsible. The APA is the publisher and marketer of the manual, and it reaps the enormous profits both financial and reputational.”
The amended complaints of the nine of us – known colloquially as “The DSM 9” – were filed in late June and early July. The respondents we each named were the presidents and trustees beginning in 1988 and the APA itself. We said in our amended complaints that the APA as an entity ought to be bound to meet the same ethical standards that it requires its individual members to meet, and we said that in addition, the APA as an entity was violating section (g) of its own Purposes and Objectives clause, which is: “(g) to promote the best interests of patients and those actually or potentially making use of mental health services. ” In addition, each of the other eight named the Work Group heads or members who had had responsibility for the label(s) given to them (or, in the one case, the complainant’s loved one).
In the amended complaints, we requested that they be handled not by one of APA’s district branches, as described in their complaints procedures, but rather at the national level, in light of both the variety of geographical areas of residence of the respondents and of the national and indeed international import of the complaints. We also asked that, since the APA itself was named as a respondent, in order to avoid conflicts of interest or even the appearance of such conflicts, the Ethics Committee should bring in outside, objective parties to handle the complaints. We further asked to be shown all material submitted by the respondents and to be allowed to cross-examine witnesses.
I informed the complainants from the outset and subsequently that I believed there was no way to predict what the APA would do in response to the complaints. I said that I feared that, based on the resistance I had directly observed since the 1980s when concerns have been raised, they might find ways to do nothing at all. Some of the complainants found it so painful to write their stories that it took them a great deal of time, and support from others as they went through that process was helpful. Many, however, have said that even if the APA takes no positive, fair, and appropriate steps, the very act of filing the complaints, of making a first attempt to hold accountable those whose actions and failures to act have caused so much harm has been strengthening and even, in some cases, inspiring for them.
I have been deeply moved by the honesty and the courage of the complainants – both in writing their stories and in taking the risks of filing their complaints. The procedures are said to be confidential, but confidentiality has been known on occasion to be broken, and despite my saying that to them, they chose to move forward.
More than a month again passed with no reply to our requests that the APA notify us that they had received of our complaints and that they inform us what the next steps would be. I sent inquiries to Linda Hughes, who signs her emails with the position of “Director, Office of Ethics and District Branch/State Association Relations” at APA headquarters, asking her to respond to each of us. On August 3, Ms. Hughes sent me an email in which she said in essence that nothing like this had been done before, because complaints are handled by district branches, not at the national level as we requested, and that they would have to discuss what to do at the Ethics Committee’s next regularly scheduled meeting, which would be in September. She said — apparently in response to our requests to see all materials submitted by the respondents and be allowed to cross-examine witnesses — that their procedures are “not like court proceedings” but instead are “peer review”; that complainants are witnesses rather than “active participants”; and that the APA does not have strict timelines for dealing with complaints.
Ms. Hughes also wrote on August 3 that we seemed not to have seen the “Principles of Medical Ethics with Annotations Especially Applicable to Psychiatry “(2010 Ed.), and the “Procedures for Handling Complaints of Unethical Conduct” (contained in the Principles document),” and she sent each of us those documents. In addition, she wrote: “You may want to review the current Principles and Procedures and determine whether this is the type of proceeding you are interested in pursuing. If it is not, please let me know by the end of the month.”
I had been certain that their delay in responding to us about both the original complaints and the amended ones was at least in part because they were consulting with their attorneys. I hoped against hope that they would not seek ways to dismiss the complaints without giving them serious consideration. When Ms. Hughes wrote that we seemed not to have read the current edition of their manual, it appeared that there was a danger that they might dismiss the complaints by asserting that we had made wrong assumptions about the complaints procedures and, in essence, did not know what we were doing. So most of us complainants wrote to Ms. Hughes to point out that we were indeed familiar with the current version of their procedures and had in fact cited them on page 1 of our complaints. On August 3 I sent her the following email:
Dear Ms. Hughes,
Let me respond to what you wrote:
First of all, if you read the complaints that were filed, you will see that we had indeed read the document for which you are sending the URL, because we cited it -- the 2010 edition -- early in each of the complaints. It was because there is so little information in that document that the other complainants and I took care to request information from you about what would happen next.
It is interesting that you tell me that what we have done is in fact groundbreaking, that you have never before had anyone file a complaint that cannot simply be sent off to one limited district branch. I will be interested to learn what the APA Ethics Committee decides to do about this, but it is problematic that they will not discuss this until sometime a month or more from now. With the ease of conference calls and videoconferencing, may I request that a meeting of that sort be arranged sooner. After all, more than a month has passed since the complaints were submitted, and this is the first communication any of us has had from you about what the next step will be. I will look forward to hearing from you whether an attempt will be made to arrange an earlier meeting.
I can assure you that the world will be watching to learn how the APA handles these complaints about such very serious and pervasive problems, and it is to be hoped that the Ethics Committee will do what is clearly the right, proper, and humane thing.
May I assume that you have sent this same information to all of the other complainants? It is important for you to communicate directly with them and not just with me, out of respect for the work they have done in filing the complaints and the suffering they have already endured.
With regard to your final question, I personally am interested in pursuing whatever the APA Ethics Committee decides to allow or make happen, because it is better than no action at all being taken. As for the other complainants, you will of course need to ask whatever questions you have of each of them.
I have one further question, the answer to which I have not been able to find since your message arrived: Who are the current members of your Ethics Committee, or where I can I find that listing?
Paula J. Caplan, Ph.D.
Ms. Hughes has not responded to the question about who are the members of the Ethics Committee. Phone calls to APA headquarters yielded the response that the members’ names cannot be divulged. I also wrote on August 13 to say that the APA was showing an absence of concern for the other eight complainants by failing to move the process along, and I requested that things be moved forward rather than waiting for an already-scheduled September meeting to take place. I asked whether, given the available technology, there was any reason that the committee could not schedule a telephone conference call to discuss the matter. The only relevant information I have received in response was that no earlier meeting would be scheduled and that the September one would be “early” in the month.
This is my August 13 letter to Ms. Hughes:
Dear Ms. Hughes,
I am wondering if perhaps you failed to receive my email of August 3, 2012, since you did not respond to the questions I asked therein. So here it is again, below.
Please let me know by return email:
(1)The names of the members of the Ethics Committee (not counting you and Urysha). At the very least, this information should be sent, when these are the people who will be deciding what to do about our complaints. It would be alarming indeed and not do the APA's reputation any good if these names were not to be provided.
(2)Why you or the committee members have chosen to postpone a decision about how next to proceed until after a meeting that you had already scheduled anyway. With all of the available technology, when people care enough about doing the right thing, it is a simple enough matter to hold a teleconference. It is unconscionable to inform complainants that they will simply have to wait until after a meeting that you had already planned to have anyway. This shows an absence of concern for the suffering of the complainants.
I wonder why you continue to inform complainants that you think they have failed to read the 2010 version of the APA's Ethical Principles, given that every complainant actually cited that document within their complaint. May I assure you that it is not effective for you to write in this demeaning way to any of us. The fact that the APA has historically handled (or failed to handle) reports of ethical problems in a particular way ought not to mean that people who have been harmed by the APA and some of its members should fail to request what is fair, reasonable, and ethical. Then the APA can decide whether to refuse to act appropriately. I hope to hear from you that the Ethics Committee will consider the seriousness of the harm that has been done by the breaching of its own Ethical Principles and not retreat behind a narrowly chosen definition of what the Committee "can" and "cannot" do. Ethics is not supposed to be about hiding behind technicalities. As written in your own APA documents and as quoted in these complaints, the APA Ethical Principles exist for the purpose of ensuring the "lessening of unethical conduct."
Paula J. Caplan, Ph.D.
On August 20, 2012, having received no reply from Ms. Hughes, I received an emailed letter from the APA’s general counsel, Colleen Coyle. She wrote to me:
APA appreciates that you have filed an ethics complaint and that you are anxious to have that complaint resolved. However, you have selected this forum and therefore its rules of procedure, which apply to you, our members or any other person that files a complaint with the Ethics Committee. This is not a matter of how APA historically handles matters. It is a matter of due process in a proceeding that is expressly governed by the published rules which do not change to meet the objectives of each individual complainant. The Ethics Committee in September will consider whether the complaint you filed is in compliance with the rules of procedure that Ms. Hughes has provided to you. If it is not, then APA will notify you that the Complaint is not in compliance with the procedures and this file will close. If the complaint does comply with the procedures, then, as stated in the rules, APA will determine the appropriate District Branch(s) to hear the case according to the “Procedures for Handling Complaints of Unethical Conduct.” With both the APA and the District Branches, the names of the volunteer members of their ethics committees are not released except as provided in the Procedures (the names of the members appointed as reviewers or the names of those serving on the hearing panel in a particular case, for example.)
The process you initiated is underway. If the Committee has any questions or needs any additional information from you prior to its meeting in September, I will be in contact with you. Otherwise, the Ethics Committee will get back to you with information about whether and how this complaint will proceed after it has met and discussed it at their September meeting.
Colleen M. Coyle,
American Psychiatric Association
1000 Wilson Blvd. Suite 1825
Arlington, VA 22209
On August 20, I sent this reply:
Dear Ms. Coyle,
Thank you for getting back to me in response to the messages that I sent to Ms. Hughes.
First of all, may I assume that you will be sending this message to the other people who filed their complaints in late June/early July and who made similar procedural requests?
Second, I trust it is clear that the APA's published information about procedures for Ethics Complaints provide only some information about what to expect, how these things are carried out, and what the APA Ethics Department and/or Ethics Committee considers to be its procedures, what flexibility it does or does not have, and what it is able to do or not to do. Please note: Nothing in my complaint must be taken to mean that if you do not agree to everything requested, then you ought simply to dismiss the complaint out of hand. I request that the APA proceed with this complaint, addressing anything in the complaint with which the APA decides it can deal and in whatever ways the APA decides it can proceed. The contents of the complaint are designed to request reasonable responses from the APA, but if the APA chooses not to respond to part of it or to follow some different procedure other than what is requested, I request that the APA move forward as it chooses to do. Needless to say, the best thing would be to address everything in the complaint and to follow the procedural requests that I have made, and the next best thing would be for the APA to do part of this. What would not be acceptable would be simple dismissal of the complaint altogether on the grounds that the APA has different procedures and chooses not to alter them.
Third, I have repeatedly asked when in September the Ethics Committee is scheduled to meet and discuss these complaints, and these requests have been ignored. I now request that you personally send me this basic information.
Fourth, as an attorney, I am sure that you understand that APA's apparent intention to send this complaint to some district branch, when in fact it is hard to think what would warrant dealing with it as though it raised matters limited to one geographical region, is puzzling. What bases for choosing a particular district make sense, given that the respondents live in many different APA districts and given the national and even international import of the matters addressed in the complaint? Whatever the answer to these questions, as stated above, I request that my request for this to be dealt with at the national level — understanding that APA has never been asked to do this before and may decide still to send it to a district branch — not be used as a "rationale" to get rid of the complaint altogether. If you choose nevertheless to send it to some district branch, I will hope to be informed of the reasoning behind the choice not to deal with it nationally and also behind the choice of the particular district to deal with it.
Fifth, wherever APA decides to handle this complaint, I would like to draw your attention to the request that I made that the APA appoint people external to the APA itself, objective people, in order to avoid a conflict of interest or even the appearance of one. Clearly, having APA's own members handle a complaint whose respondents include so many APA members and also the APA itself as an entity risks carrying out proceedings that are not fair, do not reduce unethical behavior (as the APA itself states is the aim of such proceedings), and frankly makes the APA look bad.
Thank you for your attention to these matters, and I will look forward to your reply.
Paula J. Caplan, Ph.D.
On September 12, having heard nothing further from Ms. Coyle or Ms. Hughes, I wrote to Ms. Coyle as follows:
Dear Ms. Coyle,
We had been informed that the Ethics Committee was going to meet in early September to decide about the next step for the complaints filed in late June and early July. We complainants have not heard back about what it decided, and on behalf of the complainants, I hereby request that information.
Furthermore, as you are no doubt aware, we had written to request explicitly that if the Committee should decide that it could not proceed in the fair and appropriate ways we requested and/or could not take one or more of the requested actions, that it nevertheless make sure to proceed with whatever portions of the complaints with which it decided it was prepared to proceed. We have not received confirmation that this would be done either, and we would appreciate receiving that notification.
In reply to this message, please write to all of the complainants who filed at that time.
Thank you for your attention to this matter.
As of this writing (September 30), we complainants have received no further communications from the APA.
On the advice of attorney Wendy Murphy, on July 4, I had informed Ms. Hughes as follows:
Dear Ms. Hughes:
In the past week, you will have received a number of complaints with regard to the harm caused by psychiatric diagnoses from the DSM.
In the event that the Ethics Department declines to respond effectively to these complaints, complainants will seek alternative remedies from the Department of Health and Human Services' Office for Civil Rights and/or via equitable actions for relief seeking declaratory and injunctive remedies in federal and state court.
Paula J. Caplan, Ph.D.
At the time the original complaints were filed, I wrote an article for the Washington Post about harm from diagnosis, in which I mentioned that some of those who had been harmed were finding their voices and trying to hold accountable the people who were the first cause of the harm by filing these complaints. Within the first four days after the article appeared, more than 400 comments were posted after the online version, and the vast majority were extremely positive.
As word began to spread about the filing of the complaints, I began to receive requests from others wishing to file. I prepared a template and instructions for filing a complaint. Anyone wishing to consider filing a complaint can go to psychdiagnosis.weebly.com and send a message requesting information via the Contact Us form. They will be sent an initial set of instructions about how to determine whether the label(s) they have received came from the DSM and how to write a very brief description of the labels they received, what was happening to them at the time that was labeled mental illness, and any harm that came to them as a result. They do not need to send that to the website but only need to send word through the contact form that they have completed those two steps (and if they wish, send their story with a request for feedback about its clarity and completeness for purposes of the complaint). At that time, they will be sent the template, the length of which is daunting, but it is accompanied by instructions about the few places that they need to fill in a blank or delete a few sentences.
What is in the complaints and the template? There are five sections. Section 1 includes a statement that the complaint is filed because of the harm done by diagnostic labeling, a list of the APA’s Ethical Standards that were not met, and the respondents who failed to meet them. Section 2 is called “My Story” and includes a listing of the kinds of harm the complainant suffered. Section 3 is by far the longest, including extensive documentation that the respondents knew or ought to have known that the manual is not scientifically grounded, does not improve outcome, and carries great risks of harm. A lengthy subsection is based on every presidential address and address by the president-elect from 1988 to the present, showing whether they either failed to mention the DSM or diagnosis at all — disturbing in light of the fact that the DSM is such a huge source of APA profits and prestige — or they made unfounded claims that the DSM or psychiatric diagnosis has become very scientific. (I wrote my amended complaint after the other eight had been filed, and mine includes a section not found in the others. It is called, “A Longstanding and Pervasive Pattern of Deception in the Creation and Public Presentation of the Manual.”)
Section 4 is a list of each complainant’s requests for action by the Ethics Committee. Some vary from one complainant to another, including whether or not they request compensation for financial losses, but all eight ask for a letter to the effect that the label(s) given are not scientifically grounded, should not have been applied to them, and should not be applied to anyone. All nine of us ask, among other things, that black-box warnings be placed on every copy of the DSM and related products (the APA publishes, sells, and thus profits from numerous books and other products related to the manual), stating that the DSM is not scientifically grounded, does not improve outcome, and carries substantial risks of harm; that within six months of the receipt of the complaints, the APA hold hearings at which people can testify about the harm they have suffered because of receiving DSM diagnoses; that the APA actively seek to document harm and use some of its $100 million profits from the current edition to begin to redress the harm; and that the APA arrange for a session at its next convention that will include testimony from some who have been harmed. We complainants thought it was important to ask for anything that would truly redress the harm done so far and/or to try to prevent harm in the future. Section 5 is composed of the procedural requests mentioned earlier.
Hopefully, more people will file complaints, and hopefully, word will get out about whatever the APA does, whether good or bad. I would love to hear from attorneys who recognize the importance of filing lawsuits (I have a number of grounds in mind, as well as a wealth of documentation) about harm from psychiatric diagnosis.
Other actions that anyone can take to help try to reduce the harm from psychiatric diagnosis include:
- Signing the “Boycott the DSM” petition at http://www.change.org/petitions/boycott-the-dsm
- Signing the “Call for Congressional Hearings about Psychiatric Diagnosis” petition at http://www.change.org/petitions/everyone-who-cares-about-the-harm...
- Joining the Facebook page called “Stop Psychiatric Diagnosis Harm,” which is moderated by Moss Bliss and is a place where a great deal of information is provided about this subject
- Checking out the websites psychdiagnosis.net and psychdiagnosis.weebly.com for information about six different kinds of solutions, updates that will be posted there about what is happening with the complaints, and many stories about the harm