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Paula Joan Caplan's Authors Guild Blog

To Warn or No To Warn: A Critique of MIA's Use of Diagnostic Terminology

Initially published June 18, 2019 at https://www.madinamerica.com/2019/06/critique-diagnostic-terminology/ Please note that this was written about the publication MadInAmerica (MIA) and its policy about naming psychiatric diagnosis. Robert (Bob) Whitaker is the founder of the publication and the author of the extremely important book, Anatomy of an Epidemic, a scrupulously researched book about the truth about psychiatric drugs.

 


By Paula J. Caplan, PhD
June 18, 2019

I appreciate Bob Whitaker's encouraging me to write this essay after I had written to him several times over the years to express concern about how Mad In America deals with psychiatric diagnoses. Below, I will report his responses to my concerns and my replies to those.

 

I need to begin with some history, so that readers will understand why I feel so passionately about an MIA practice that might seem to some to be relatively trivial.

 

In 1985, I had been teaching the Diagnostic and Statistical Manual of Mental Disorders as an advocate, believing the advertising produced by its publisher, the American Psychiatric Association, and by its Task Force leader Robert Spitzer, to the effect that it was a scientifically-grounded document. Then, through a series of events described in They Say You're Crazy: How the World's Most Powerful Psychiatrists Decide Who's Normal, in 1988 I accepted the invitation of DSM-IV Task Force head Allen Frances to serve on two DSM-IV committees. In that capacity, over two years I received internal communications, mostly but not solely with regard to the two DSM labels "Self-defeating Personality Disorder" and "Premenstrual Dysphoric Disorder," and through these I was shocked to learn that the ways that "abnormality" and its varieties were chosen and described within the manual were extremely far from scientific (this troubled me all the more because I am an author of a textbook about research methods) and that those heading the Task Force minimized and even denied harm that getting any of their labels could cause. When I utterly failed to persuade them to come clean with the public about the unscientific nature of the labels and their criteria and to warn of the harm they could cause, I felt I had no choice but to resign on moral, ethical, and professional grounds.

 

Since then, the more I have spoken and written publicly about these matters, the more I have learned two kinds of things. One is that there is a vast array of approaches to reducing human suffering that do not involve calling sufferers 'mentally ill' and that are proven to be effective. The other is that I have received letters, email messages, and in-person reports from thousands of people whose lives were variously harmed or ruined and from loved ones of labeled people whose lives were ended due to sequences of events that began with a psychiatric label.

 

I have called psychiatric diagnosis "the first cause of everything bad in the mental health system." https://www.youtube.com/watch?v=-qIQqRl94_Y&t=22s     If they don't diagnose you, they cannot "treat" you, whatever that means in various contexts. But once they give you even what sounds like the most innocuous label (often Adjustment Disorder is named as the least dangerous), there is almost no limit to what they can do to you in the name of "treatment"… and too often, they escape all accountability because the diagnosing and the kinds of treatment that tend to follow are considered "standard of care."

 

Since few laypeople (and even surprisingly few professionals) have any idea about these facts concerning psychiatric diagnosis, when they are suffering and seek help in the mental health system, they rarely even know to ask the therapist such questions as, "Do you have to give me a diagnosis? If so, which one will you be giving me? What steps are you taking to protect me from the many kinds of harm that can result from getting a psychiatric label? If you are going to recommend ways for me to feel or function better, how are you going to decide what to recommend, given that treatments based on assumptions about unscientific categories might help me but might be harmful and might not work?"

 

Furthermore, the mental health establishment that uses these labels and falsely claims that they are "scrupulously scientific" (in the words of DSM-IV head Allen Frances describing his edition), helpful, and not harmful has vast wealth and media access. Mad in America has reached huge audiences and successfully educated untold numbers of people about the truth, but even MIA and other publications that challenge traditional practices still have a long way to go to reach and persuade as many people as does the establishment.

 

As a result, when anyone in the few challenging publications uses any psychiatric diagnosis without signaling that they are constructs and unscientific, I feel alarmed for those who will be strengthened in their mistaken beliefs about the labels. An example would be an article about a researcher's study of "children who have ADHD." Some people have learned to challenge what the DSM and APA brass claim, but for those who trust that what they read on MIA is far more likely to be well thought out and true and thus not misleading, I am especially concerned about their vulnerability to the reification of the categories by MIA specifically.

 

There are simple ways to signal that these diagnoses are constructs and unscientific, and over the years, I have repeatedly expressed my concerns to MIA when they publish pieces in which psychiatric diagnostic terms are used without a single mention of the fact that they are NOT scientific, that it is NOT helpful to use these terms when trying to alleviate suffering or help people change their behavior IF THEY WANT TO, and that getting ANY psych label exposes one to a vast array of kinds of harm, and that there are MANY other approaches that do NOT involve pathologizing or drugging and that have few or no risks and are shown to be effective. I have begged MIA to stop this practice and instead, for instance, simply to put all such labels in quotation marks or to include a simple sentence such as, "This is a review of a research report about children who have been given the ADHD label, which is not a scientifically supported entity" or "Our study was of people who had been given the Bipolar Disorder label, so since it is known that this label does not represent a scientifically supported entity, we ensured that our participants all reported struggling with changes in mood they felt they could not control."

 

In the June 9, 2019 MIA weekly newsletter, an article is described as showing "how genetic models of 'schizophrenia' explain very little." This is a perfect and very simple and unobtrusive way to solve the problem. And in articles, the first time a psychiatric label is used, it can be put in quotation marks followed by a note that it is in quotation marks this first time it appears in the article because it has not been shown to be a scientifically valid category, but that the reader is urged to think of quotation marks going around the label each time it appears in the piece.

 

MIA reader and longtime advocate Amy Smith suggests a couple of other approaches: One is to run a succinct header or footer on every page of articles that include mention of psychiatric diagnoses, making MIA's positioning clear, and, in her words, "proudly wearing their ideology on their sleeve," since it is clear from most of the content of the publication's articles that they aim to publish the truth. Her other suggestion is that for specific articles that are glaring in their use of unscientific constructs, MIA could insert a "Note from the editor" in between the title of the article and the body of the text to make this kind of point as it relates to that article.

 

Bob Whitaker, who knows I have tremendous respect for his own many scrupulous pieces of research and writing, has replied to these suggestions by stating that he sets the editorial rules for MIA and does not plan to change in response to my concerns. He replied further that MIA has "many blogs published deconstructing [psychiatric diagnoses], and published reviews of articles published in journals with that theme." Given the overpowering and pervasive extent to which "psychiatric diagnosis as truth" has permeated Western culture and is fast spreading to other parts of the globe, and given that not every reader reads everything published on MIA, I don't think this is sufficient justification for failing sometimes or at all to implement the kinds of solutions suggested above.

 

Bob also wrote to me that MIA is using psychiatric diagnostic terms because they signal "societal speaking about this diagnosis that exists in our society, and not because we are saying it is valid." I find this frankly alarming. There are many terms that, for instance, are sexist, racist, ageist, etc., that either now or previously have been widely used, and the harm that goes with their use is perpetuated and can rub off on readers. In addition, how in the world is a reader supposed to know that in a particular MIA piece, a diagnostic term is not supposed to be thought to be valid if there is no disclaimer to make that clear?

 

Finally, Bob wrote that "To put quotes around [psychiatric labels] every time just becomes superfluous, and in reviews of science articles reporting on that diagnosis, would just put us in the position of wearing an ideology on our sleeves that would discredit our reviews." I have two responses to this:

(1) As a longtime editor myself, I am aware that one of the solutions suggested above allows for more editorial elegance than do the others. Fine. I don't care which solution is implemented when. Just please consistently convey the truth rather than helping perpetuate harmful untruths.

(2) I would think a greater concern about ensuring that MIA publishes credible assessments of scientific research would be not avoiding "wearing ideology on its sleeve" but rather omitting the extremely important information that the studies under review were based on the use of psychiatric categories that have been shown to be unscientific, unhelpful, and often harmful. Doing the latter means that such reviews would include the whole truth, not omitting the parts that someone is scared will make them look biased.

 

I hope that Bob will reconsider the MIA policy about this matter.

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The Truth About Trump and Psychiatric Diagnosis — The Lightbulb Has to Want to Change

Originally published 02/20/2017 10:34 pm ET @ http://www.huffingtonpost.com/entry/58abb3b0e4b0417c4066c22b

Once you know a crucial fact about what gets called mental illness, the debate about whether or not President Donald J. Trump is mentally ill disappears, and what is left is what really matters. What really matters is that President Trump apparently has no desire to change behavior that has been described as totally self-absorbed, self-referential, misogynist, racist, xenophobic, and otherwise abusive.

It’s ironic that the arguments on both sides of the debate about whether or not Trump is mentally ill are based on the one “alternative fact”: that deciding who is mentally ill is a science. That could not be farther from the truth.

Those who are arguably the world’s most powerful psychiatrists — those who periodically create and publish a new edition of the psychiatric handbook called the Diagnostic and Statistical Manual of Mental Disorders (DSM) — typically acknowledge that the foundational premise of the entire book, that it is possible to define “mental illness” in an adequate, appropriate, and useful way, is wrong. In each edition of the DSM, the new set of arbiters tries to create a definition of “mental illness,” since the book consists of hundreds of alleged categories and subcategories of mental illness and thus depends on their getting that primary definition right. Each time, they have acknowledged their failure to do so. Even Allen Frances, who oversaw creation of the DSM edition that held sway from 1994 to 2013, famously called psychiatric diagnosis “bullshit” (cited in Gary Greenberg’s excellent Book of Woe from his article in Wired based on his interview with the psychiatrist).

As far as I can tell, no one else weighing in on the debate about the President has served on a DSM Task Force...and then felt they had to withdraw because of what they had learned. I spent two years as an insider on Allen Frances’s Task Force, where I learned that — despite what is widely assumed to be true — psychiatric diagnostic categories are not scientifically derived but are constructed, made up by the handful of people with the most power in the DSM hierarchy. When Frances in various media currently gives the impression that he is uniquely qualified to judge President Trump because he wrote the criteria for Narcissistic Personality Disorder (NPD), the label that many therapists have recently applied to him, Frances neglected to note that the criteria for NPD change with every edition. Frances changed them somewhat from the DSM edition that came before his, and the NPD criteria in the edition subsequent to his — the currently in use DSM-5 — differ from his. These changes reflect the moving-target nature of this label.

The changes over time in how NPD is defined are important, because to debate about whether or not the President has NPD is to reify misguidedly and harmfully the notion that there is a scientific way to find out. I resigned from the DSM-IV Task Force because I could not participate in the creation of a book that would be marketed as scientific when I knew that it was not — and that would garner more than $100 million for its publisher, the American Psychiatric Association, and help Big Pharma earn billions of dollars for psychiatric drugs marketed as curing the ever-growing number of manufactured categories.

Some people try to prove that Trump does not have NPD on the grounds that his self-centeredness and so on do not cause him to suffer; but even that argument is irrelevant, because no version of NPD has specified that in order to “qualify” for this label, one has to be suffering because of its features.

Do people suffer and deserve help to alleviate that suffering? Of course, they do, and that is the subject of many books and other articles. But the research about how that is best done — what behavior, feelings, and/or thoughts can be changed — and what cannot is a side issue for our purposes here, because there is not a shred of evidence that President Trump wants to change. Remember that old joke: “How many therapists does it take to change a light bulb?” “One. But the lightbulb really has to want to change.”

There is great debate among therapists about whether or not any personality disorders belong in the manual of mental illnesses, since it is an arbitrary decision left to each individual therapist whether or not a particular patient’s personality is extreme enough to qualify as a disorder. To engage in the attempt to decide whether or not President Trump has NPD is to act as though that label is clearly a description of a mental illness, however one defines “mental illness.”

Some believe that if they were to prove that the President is mentally ill, it would be easier to turf him out of office. But it was morally wrong that Senator Thomas Eagleton was removed as George McGovern’s vice presidential running mate in 1972 when it became publicly known that he had suffered from bouts of depression and had been hospitalized for that reason, because what should have mattered for him and should matter for all elected officials is how well they can do their jobs. Eagleton had been a great Senator. Whether or not one believes that Trump is doing his current job well depends partly on whether or not you share his views of the world, partly on whether or not he is truthful with the people of this nation (many Presidents have not been), and partly on how he manages his various tasks.

At this crucial time in our nation’s history, the last thing we need is to let debates about whether or not the President is mentally ill divert us from deciding whether or not he is doing his job, whether or not we like what he is doing, and whether or not what he is doing is dangerous or evil.

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Author’s note: I am the author of They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal, which is my insider’s description of the process of creating the book that is called the psychiatrist’s “Bible” and is used to determine who is mentally ill. I am editor of Bias in Psychiatric Diagnosis and have written many articles and book chapters about psychiatric diagnosis, which I would be happy for people to read.
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Myths are Used to Justify Depriving People Diagnosed as Mentally Ill of Their Human Rights

Who in this world ought to have the right to make decisions about their lives, and who is required to lose that right and have the medical community and the courts take over?

Despite the fact that no one in history, not even the omnipotent American Psychiatric Association -- which produces and profits mightily from the "Bible" of mental disorders -- has come up with a halfway good definition of "mental illness," and despite the fact that the process of creating and applying the labels of mental illness is unscientific, any of those labels can be used to deprive the person so labeled of their human rights. This is terrifying. It ought to terrify those who are so labeled and those who are not, because deprivation of human rights on totally arbitrary grounds is inhumane and immoral.

The combination of the specter of terrorism and highly publicized incidents of gun violence have led rapidly to politicians, therapists, and the general public blaming "the mentally ill" for these dangers, and that is used to justify depriving not just terrorists and other killers but anyone with a label of mental disorder of their rights. They can be locked up against their will, they can be ordered to comply with just about anything that a professional calls "treatment of the mentally ill," no matter how these actions can harm the person and in the absence of scientific evidence that the "treatments" of people who have been psychiatrically labeled will prevent violence. In other words, the huge leap is often made from "This person has a psychiatric label" to "This person is therefore dangerous to themselves and others," even in the absence of any history or current indication of such dangerousness, and that leap is then used to lock people up and/or otherwise "treat" them against their will.

Now the United Nations human rights treaty called the Convention on the Rights of Persons with Disabilities includes the absolute prohibition of forced commitment and forced treatment, and the brilliant and tireless advocate Tina Minkowitz is leading a campaign to show that there is a wide base of support for these prohibitions. This is especially important in the United States, because 162 nations have ratified the CRPD, but the U.S. has not.

Minkowitz worked on drafting and negotiations for the treaty from 2002-2006 and helped ensure the incorporation in the CRPD of Article 12, which says that "states," countries and national governments bound by international law recognize that people with disabilities have the right to make their own decisions in all aspects of life and to do so free from coercion. Note that "people with disabilities" applies to anyone who has received a diagnosis of any mental disorder (in addition to other disabilities). It is important to note the CRPD's Article14, which specifies according to the text and the authoritative interpretation by the Committee on the Rights of Persons with Disabilities that the existence of disability or perceived disability cannot be used to justify deprivation of liberty, and Article 25 requires that healthcare be provided on the basis of free and informed consent. The word "perceived" is crucial, in light of the fact that the ballooning numbers of categories listed as mental disorders in the two primary handbooks used to classify people as mentally ill have made it possible, even likely, that anyone entering a therapist's or other professional's office in other than a calm and happy state will be diagnosed as psychiatrically disordered, moving just about anyone into the "perceived as disabled" category. So one crucial myth that is relevant to the CRPD is that psychiatric diagnoses are scientific and usually appropriately applied.

If no harm came from being classified as mentally ill, there would be less cause for alarm. But it is easy, even likely, for laypeople, therapists and other healthcare professionals, and judges to assume wrongly that having a disability (even a perceived disability) means that one's judgment is impaired and that one should not be allowed to make choices about their lives, their bodies, and the treatments to which they will be subjected. Frequently, the criterion of "dangerous to oneself and/or others" is used to justify forced commitment or forced treatment, and this is done despite the proven fact that people diagnosed as mentally ill are actually less likely than others to commit acts of violence and more likely to be victims of violence. The evidence for this pattern is all the more remarkable, given that for a number of reasons (e.g., defense attorneys trying to get psychiatric labels for their clients in order to obtain reduced sentences or diversion from prison to the mental health system; the skyhigh frequency of prisoners being diagnosed as mentally ill so that they can be heavily medicated and thus reduce the need for prison staff), statistics in the near future are likely to show an increasingly high correlation between psychiatric labels and violence. Thus, two other crucial myths that are relevant to the CRPD are that people who have received psychiatric labels are likely to be incompetent to make choices about their lives and that they are more likely than other people to be violent.

A fourth crucial myth is that forced commitment and forced treatment are beneficial (and, by implication, not harmful). That this is a myth is reflected in the high rates of suicide that follow inpatient treatment and the increased rates of suicide caused by many psychiatric drugs, as well as the plummeting rates of recovery and increased rates of longterm disability that have followed the introduction of various psychiatric drugs into the market and the use of electroshock.

Another myth is this: The important word "orthogonal" applies to the question of whether people diagnosed as mentally ill are able to make their own choices and whether they have good judgment. We all know people who have no psychiatric labels but who make terrible choices and poor judgment, yet those limitations are not used to deprive the of their human rights. These capacities are orthogonal to whether or not one has been diagnosed as mentally ill, meaning that knowing whether or not a person has a diagnosis is simply not a predictor of their judgment and ability to make good choices for themselves. A related myth is that if someone is diagnosed as mentally ill, all of their decision making power must be wrenched away from them, when -- as with many people who are not so diagnosed -- sometimes what the person needs is a little support of various kinds, including assistance with filling out forms or practical help with cooking or shopping or getting a service animal during times when they are struggling.

The CRPD standard is for people who have or are perceived to have disabilities must be provided the opportunity to give free and informed consent. That is very far from what happens with the vast majority of people treated by psychotherapists, not to mention those who are deprived of their human rights. Consider this: Psychiatric diagnosis is the bedrock, the first cause of everything bad that happens to people in and through the mental health system. If they do not diagnose you, they cannot treat (or "treat") you, whether or not the treatments are helpful to you. But almost no one who enters a therapist's office is ever fully informed and thus almost no one is put in a position where they even might give informed consent. Why? There are three reasons:

(1) They are almost never told, "In order for your insurance to pay my bills, I will have to give you a psychiatric diagnosis, but you have the right to know that psychiatric diagnoses are unscientific, that getting one does not help alleviate suffering, and that getting one carries a wide array of risks of harm, from plummeting self-confidence to loss of employment and of child custody and of security clearance...even to death from treatments that are justified on the basis of your label."
(2) They are almost never told, "I am recommending Treatment X, but I am going to tell you everything about the potential benefits and potential kinds of harm that can result." The reason they are almost never told this is that these days, the vast majority of treatments are with psychiatric drugs, and lawsuits have repeatedly revealed that the drug companies purposefully conceal much of the harm, so there is no way for conscientious therapists to get that information and thus no way for them to convey it to their patients. Something similar happens with electroshock and with expensive but intensively marketed programs called things like "neurobiofeedback" that have not been shown to be helpful but that are often very costly.
(3) They are almost never told, "I am recommending Treatment X, but I am also going to describe for you the huge array of approaches that have been helpful to people who are going through what you are going through ... and that often carry little or no risks of harm."

Alarmed about the lack of disclosure, which puts suffering people who seek help in the mental health system at huge risk of harm with no way even to know what questions to ask and what recommendations to challenge, I organized the filing of nine complaints to the Ethics Department of the American Psychiatric Association, because that APA publishes and hugely profits from the Diagnostic and Statistical Manual of Mental Disorders (DSM), whose categories had been used against the complaints with tragic effects. We said that if the APA had honestly disclosed the unscientific nature of its categories and the risks of harm, as well as that getting a label would be helpful largely or only in order to get insurance coverage for treatment, the complainants would not have blindly accepted their labels and the treatments that were justified to them on the basis of the labels ("You have Disorder Y, so you should accept Treatment Z, because that is what is used for people with Y"). The APA dismissed the complaints on spurious grounds and with not one iota of attention to their merits.

Five of those complainants then filed complaints with the U.S. Department of Health and Human Services's Office of Civil Rights (OCR). The complaints were filed pursuant to the Americans with Disabilities Act, according to which people can be discriminated against by being treated as though they are disabled (mentally ill in these cases) when in fact they are not. All of the complainants had been experiencing upsetting life situations but should by no means have been diagnosed as mentally ill. Yet according to the (falsely-marketed as scientific) DSM, they were mentally ill, and the treatments that were justified on the basis of their labels had had devastating consequences for them. The OCR dismissed the complaints on spurious grounds and with no attention to their merits.

The outcomes of these complaints provide a solid paper trail revealing that in the United States, the enterprise of psychiatric diagnosis is entirely unregulated. This makes it even less regulated than the major financial institutions whose unregulated actions seriously damaged the economy. The paper trail shows that both the lobby group called the APA, which earned more than $100 million from the last edition of the DSM and spent not one cent to reveal the truth about its manual or to warn of the harms they knew about, and the government entity (OCR of HHS) that by all rights ought to provide oversight and regulation, have chosen to do nothing. This makes it all the more compelling for all of us to press for the United States government to ratify the CRPD. The loss of human rights of just one of us through fraudulent advertising, cover-ups, and perpetuation of dangerous myths is the loss of human rights of us all.

As a U.S. citizen, I am embarrassed and appalled that as this country discusses whether or not to ratify the CRPD, it wants to add what are called "RUDs," reservations, understandings, and declarations created by the current federal administration and the Senate Foreign Relations Committee. According to Minkowitz, these include the claim that U.S law already fulfills or exceeds the obligations our country would have under the CRPD treaty. The above described complaints that we filed -- and the rejection of those complaints by the U.S. Department of Health and Human Services's Office of Civil Rights gives the lie to that claim, since there is simply no governmental regulation of psychiatric diagnosis, and diagnosis is the sine qua non of forced commitment and forced treatment.  Read More