The last chapter demonstrated how a particularly narrow scientific concern—diagnostic reliability—was used creatively by a few researchers to justify an entirely new approach to diagnosis. Descriptive diagnosis, as this approach was called, was developed by capitalizing on the vulnerabilities of psychiatry to scientific criticism. The new approach then benefited, not from improving reliability, but by merely claiming to have done so, using data that was difficult for outsiders to assess accurately. The details of the data, moreover, were quickly forgotten in the wave of celebration over the “scientific” nature of the new DSM-III. In this chapter we continue to follow the story of DSM’s evolution.
For the most part, we, too, will leave reliability behind and move, first, to a much larger and significant problem that emerges at every turn in the story, the problem of the meaning (i.e., the validity) of the modern DSM classification of mental disorders. Did the descriptive approach to diagnosis deliver on its promise to more accurately identify and describe valid markers of mental illness—and of different mental illnesses? Did the new manual improve clinical practice, lead to more effective treatment, and allow researchers to make scientific breakthroughs in understanding the claimed biological and medical causes of mental disorders? In short, has all the effort and subsequent celebration been matched by major scientific or clinical advances?
We answer these questions by first examining the “diagnostic criteria” that are the signature characteristic of all DSM editions since 1980. Then, after understanding how and why the diagnostic criteria have failed to ensure diagnostic validity, we turn to the institutional investors and supporters of DSM, who collectively ignored these scientific failures, thus ensuring that the flawed manual became viewed as indispensible to mental health thinking and practice. With this as background, we finally examine the current efforts to produce the DSM-5, due in 2013. The controversies surrounding the DSM-5 illuminate many of the inherent and inevitable problems of descriptive diagnosis and the profound mistakes that are made when the anguishes, fears, worries, and sufferings of human beings are—on the basis of no more than the beliefs of psychiatric observers in late-twentieth-century America—classified as disorders of the brain.
Unreliability is an important diagnostic problem because it undermines the validity of the construct of mental disorder. The diagnostic criteria were attempts to improve reliability, but, more importantly, to buttress validity. The gay activists who asked the APA why homosexuality was defined as a mental disorder were questioning the validity of a psychiatric diagnosis. They wanted to know exactly how DSM distinguished between mental disorder and non-disorder, that is, how DSM established diagnostic validity, or the truth of diagnosis. As discussed, DSM-III first addressed this problem by dodging it, then by removing homosexuality from the diagnostic manual, and later by providing criteria for each disorder. DSM-III, as we noted in chapter 1, also for the first time offered a definition of the concept of mental disorder. Unfortunately, this definition invoked other undefined notions. For example, in addition to meeting specific criteria, all disorders had to be “clinically significant,” associated with “distress” yet not be an “expectable . . . response to an event,” and also had to be the result of biological, behavioral, or psychological “dysfunction.” The problem was that none of these additional requirements was defined at all. So rather than clarifying or anchoring the concept of mental disorder in a solid foundation, the DSM definition further obscured matters (Bolton, 2008; McNally, 2011). In order to know what the APA/DSM considers a valid mental disorder, one must therefore examine the diagnostic criteria for each disorder, which themselves do not represent any coherent framework.
Scientific tradition requires that assertion about the validity of concepts, such as “mental illness,” cannot rest on mere personal opinion or even group consensus but must be supported by an independent body of theory and evidence. This is an extremely important point to note, as misunderstandings about how validity is established may blind many to a fundamental problem with the DSM. To state that mental illness is a valid concept (that it truly identifies a phenomenon of nature), means that some body of evidence has been amassed according to the guidelines of a specific biomedical theory, and then has survived rigorous tests devised upon the notion that the specific theory might be false. Then and only then might we entertain with some confidence that behaviors now defined as symptoms of mental disorders might “truly” be the manifestations of diseases or brain disorders. This has not occurred. But history, of course, is littered with people’s assumptions and even certainties about things that later are shown to be untrue, to be invalid.
The classification of mental illnesses, such as DSM, must be tested if it is to be considered valid. Unlike a pontifical statement, it cannot be accepted on faith. The modern DSM, beginning in 1980, could identify no neuropsychological or medical or remotely physiological criteria for any of its categories of mental illness—which would buttress the idea that these categories pointed to real phenomena of nature rather than being mere ideas arising out of speech, faith, belief, or expediency. It offered no explicit theory of cause, nor pointed to any body of evidence to justify its claim that its description of mental disorders was scientifically valid. Instead, it offered (false) claims of greatly improved reliability, which was really only a preliminary issue to the central issue of whether the hundreds of specific diagnostic criteria had any bearing on the validity of presumed illnesses. The claims of improved reliability were false, but even if true, they were not adequate pillars on which to rest claims that psychiatric diagnosis was now “scientific.”
To be sure, the diagnostic practices of its predecessor DSM-II were a hodgepodge; that 1968 version of the manual offered little specific guidance in making diagnoses, giving at most a few sentences, although these sentences did suggest prototypes of the disorders. But to the research psychiatrists who dominated the deliberations that produced DSM-III, such brevity in describing diagnostic categories undermined claims that diagnosis was scientific and that “real mental disorders” actually existed out there, independently of the ideas American psychiatrists might have about such matters. The new descriptive formats that they developed were expected to add more precision to diagnosis, improve reliability, and buttress claims about validity.
Although DSM avoids making any definitive statements about the actual meaning of the lists of diagnostic criteria, their primary function surely was to identify presumably valid cases of mental illness, or, conversely, screen out cases in which mental disorder was not present. The criteria are the essence of descriptive diagnosis. That is why NIMH and psychiatric leaders routinely use these criteria in research that determines how many people in the population are mentally ill and why clinicians use the criteria to claim reimbursement from insurance companies for the treatment of mental disorders. In short, DSM’s diagnostic criteria are the established definitions of mental disorders in the United States.
Do these criteria ensure diagnostic validity? The answer is, no. DSM’s diagnostic criteria do not establish the validity of any disorders. If they did do so, the controversy over homosexuality could have been quickly resolved by a simple diagnostic list of homosexual feelings and behaviors. But a simple listing of behaviors would not have convinced the scientific community or gay activists why the behavior represented a mental illness. Describing a set of behaviors and labeling them as pathological symptoms never establishes the validity of an illness. At a minimum, one would need to identify a cluster of medical signs and symptoms consistently occurring together (a syndrome)—the minimal requirement for a medical disorder—and linking them empirically to an underlying, demonstrable physiological dysfunction. DSM offers behavioral diagnostic criteria as if they confirm the existence of a valid disorder, when the criteria merely describe what is claimed a priori to be an illness. Descriptive diagnosis is a tautology that distracts observers from recognizing that DSM offers no indicators that establish the validity of any psychiatric illness, although they may typically point to distresses, worries, or misbehaviors.
Many other reasons help explain why lists of criteria for DSM disorders have not established the validity of the illness categories. Over the following pages we will discuss some of the major ones.
Throughout the DSM the diagnostic criteria are ambiguous, which can be problematic. For example, if the Internal Revenue Service stipulated that taxpayers were expected to pay their “fair share” of taxes without providing guidance about what that meant, individuals and tax professionals would have vastly different interpretations of the meaning of fair share and how to determine it. The diagnostic criteria in DSM generally fail to specify the conditions under which the criteria would be met, meaning that clinicians ultimately provide their own interpretation. For example, the first two criteria for Generalized Anxiety Disorder include “excessive anxiety” that the person finds “difficult to control.” How exactly does a clinician determine what is excessive or how difficult it is to control? How much control? Similarly, with Histrionic Personality Disorder, which can be identified by criteria such as when a person “is uncomfortable in situations in which he or she is not the center of attention,” “displays rapidly shifting and shallow expressions of emotions,” or “shows self-dramatization.” How uncomfortable? What is a shallow expression? What exactly constitutes self-dramatization? Clinicians and others would find it very difficult to know exactly when such criteria are sufficiently manifested, thus producing unreliability in diagnosis and undercutting the validity of the presumed personality disorder.
DSM requires that disorders meet multiple criteria. The ostensible purpose is that multiple criteria are supposed to raise the threshold for the use of each diagnosis, making it appear that the DSM standards will ensure validity (i.e., those diagnosed with a disorder would be clearly different from those without a diagnosis). For example, using only one behavioral criterion would be viewed as unjustifiable because it would produce many false negatives (cases diagnosed with the disorder but not “really” having the disorder). By using multiple criteria, DSM conveys that it is enhancing the validity of diagnosis. Any careful reading of these lists of criteria, however, finds that many supposedly different criteria are merely the same stated differently. For example, the first of five criteria for the diagnosis “Social Phobia (Social Anxiety Disorder)” is:
•a marked and persistent fear of one or more social or performance situations in which the person is exposed to unfamiliar people or to possible scrutiny by others. The individual fears that he or she will act in a way (or show anxiety symptoms) that will be humiliating or embarrassing. (APA, 2000, p. 456)
So the first criterion is whether the person if fearful and anxious about some social situation. We will ignore that the DSM provides no specification about the nature of “fear” or its many different contexts and types.
The additional four criteria just reiterate elements of the first criteria:
•“a feared social situation provoking anxiety;
•the person recognizes that there is unreasonable fear;
•the feared situation is avoided or endured with anxiety; and
•the feared social situation interferes with the person’s normal routine or he is distressed about the phobia (APA, 2000, p. 456).”
In other words, there are not five criteria to be met but only one—and that one criterion is actually contained in the title of the disorder. This redundancy is so blatant that one thinks this must be a rare mistake in the manual. But it is not.
One of the most common diagnoses for children is Attention-Deficit/Hyperactivity Disorder (ADHD). There are three subtypes: Inattention, Hyperactivity, and Impulsivity. For each type there are supposedly different criteria. For Inattention six criteria must be met to use the diagnosis. The first criterion for Inattention is:
•“often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities.”
But this is restated in other criteria:
•“difficulty sustaining attention,”
•“does not seem to listen,”
•“fails to finish school work,”
•“avoids . . . tasks that require sustained mental effort,”
•is “easily distracted,” and
•is “forgetful in daily activities (APA, 2000, p. 92).”
Six of the nine criteria are explicit or clearly implied by the first criteria. What at first appears to be a stringent threshold for use of the diagnosis, supposedly enhancing validity, is in reality one criterion restated in different ways. Little wonder that 10 percent of schoolchildren in the United States are labeled with the diagnosis (Pastor & Reuben, 2008).
The redundancy also occurs in the criteria for Hyperactivity, where six of nine criteria must be met. The first criterion is “often fidgets with hands or feet or squirms in seat.” Other criteria are implicit in the first:
•“often leaves seat,”
•“often runs about,”
•“has difficulty playing . . . quietly,”
•“often on the go,” and
•“often talks excessively (APA, 2000, p. 92).”
Apparently, the developers of this list then ran out of synonyms for fidgeting, which The Random House Unabridged Dictionary (Author, 1987) defines as: “to move about restlessly, nervously, or impatiently.”
Similarly, there are three criteria for Impulsivity, which also reflect, upon a cursory inspection, the same criterion:
•“often blurts out answers before questions have been completed,”
•“often has difficulty awaiting turn,” and
•“often interrupts or intrudes on others (APA, 2000, p. 92).”
In the case of ADHD, therefore, there is really only one or maybe two criteria, and they are both implied in the title of the disorder. The title of the disorder says all the architects of DSM intended to say about this category. The point is that lists containing multiple criteria provide a false sense of validity by appearing to use substantively different criteria. Using synonyms as criteria does not enhance validity any more than using a checklist of synonyms for ghost—spirit, ghoul, or poltergeist—would enhance the validity of the category ghost.
Descriptive psychiatry requires the implausible belief that the meaning and causes of observable behaviors can be understood and used as symptoms of mental disorder without paying attention to the social context of the behaviors themselves, and of course the meaning of the behaviors to the person and those who observe the person. For example, is it a sign of mental illness if a devout Christian converses intimately with God, a young woman becomes extremely morose after learning that she is afflicted with a terminal illness, or a child severely misbehaves in an abusive, alcohol-drenched, chaotic household? DSM’s almost total neglect of the interpersonal, social, cultural, and physical environment ensures that the diagnostic criteria are susceptible to what psychologists have called the fundamental attribution error. That common error is interpreting the behaviors of others as due to their own personality and personal tendencies, rather than as responses to their social circumstances (Levy, 2010; Ryan, 1971; Weiner, 1995). That error, of course, is compounded when those making the attribution lack the time, the skills, or the genuine interest to listen to people’s own uncertain, groping explanations of why they behave as they do.
DSM has placed the fundamental attribution error as the cornerstone of descriptive diagnosis. For example, all the major epidemiological surveys that purport to establish the prevalence of mental illness in the population rest on simple counts of whether the diagnostic criteria are met or not. DSM assumes that individuals’ social class, past life experiences, current social context, ethnic and cultural identity, religious beliefs, loves and losses, aspirations and frustrations, intentions and excuses, competence and failure, joys and heartaches—as these individuals see them and understand them and have acted on these perceptions and as others have responded—are irrelevant to the issue of knowing precisely what ails them. None of these dimensions of experience is explored in determining whether people’s behavior meets the established criteria for some presumed mental disorder. The diagnostic criteria, for the most part, are devoid of context (Jacobs & Cohen, 2010). Certainly some clinicians rightfully explore these personal and contextual dimensions in their assessment interviews, but when they need to make a diagnosis, they are required to assume that some mental illness exists and then to conform only to the checklists of criteria. Descriptive psychiatry, in fact, was designed to minimize clinical intuition and inferences and to push clinicians into assuming that human troubles inevitably constitute signs of disorder. Neglecting to value the importance of social context in understanding human behavior is absurd and only undermines the validity of DSM (Bolton, 2008; Greenberg, 2010; Horwitz & Wakefield, 2007; Horwitz & Wakefield, 2012; Hsieh & Kirk, 2003; Jacobs & Cohen, 2012; Kirk, Wakefield, Hsieh, & Pottick, 1999; Kirmayer & Young, 1999; Lane, 2007; Wakefield, Pottick, & Kirk, 2002).
Apart from their ambiguity, redundancy, and neglect of social context, using multiple diagnostic criteria supposedly helps to identify valid cases of mental illness. Some DSM disorders require that only a few criteria are met, whereas other disorders require many. The number of required criteria is arbitrary: just as disorders are created and deleted with each revision of the manual, so too are the type and number of criteria. There is no established method or standards that DSM uses in deciding how many criteria should be required for any disorder. This is because no scientific links or any other indicators exist that psychiatric researchers themselves consider important between the diagnostic criteria and any specific biological pathology (or anything biological). Without that scientific foundation, the decision about the number of criteria is essentially a practical and public relations problem.
It is self evident that when more criteria are required, fewer people will qualify as having the disorder (if, as we have shown earlier, the criteria are not merely synonyms); with fewer criteria, more people will be labeled as mentally ill. For example, DSM-IV requires that any three of fifteen criteria be met to diagnose a child with Conduct Disorder. Why three and not two, five, or seven? Probably, if only one was required many children would qualify for the mental illness, but if seven were required fewer would be defined as ill. The makers of DSM recognize this, and use cutoff numbers so that not too many children are defined as disordered—causing public skepticism and scientific rebuke—and not so few children that funding for research and services might be decreased because the problem seems rare. Again, this is not a decision driven by scientific findings but rather a public relations, economic, and political judgment.
In general, the developers of DSM select cutoff points that boost the number of people that can be labeled as mentally ill using the DSM. Even by their own estimates, which assume that DSM is describing valid “disorders” (an assumption that we do not make), they acknowledge that the diagnostic system makes two types of misdiagnosis. The first, mentioned previously, is what is called a false negative, which is to falsely identify a child as not having a presumed “disorder” when they actually do have such a disorder. The second, called a false positive, is falsely identifying some child as having a presumed “disorder” when they do not have that disorder. Using several standard computations, the rate of both types of errors can be calculated. For example, looking at the list of criteria for disorders for children and adolescents in DSM-IV (Kirk, 2004), the misdiagnosis or error rate for the diagnosis of ADHD is about 38 percent, for Conduct Disorder about 11 percent, and for Oppositional Defiant Disorder about 21 percent. (Of course, these computations assume that the diagnostic categories are valid.) The overwhelmingly more frequent error is identifying children as mentally ill who are not. For example, with ADHD, for every 1,000 children screened using the DSM criteria, about 4.5 with ADHD would be incorrectly diagnosed as not having it (false negatives), but 370 kids who don’t have ADHD would be misdiagnosed with it (false positives). These errors rates were known before the criteria for DSM-IV were selected. In other words, the makers of DSM-IV chose cutoff points for DSM children’s disorders that routinely exaggerate the prevalence of presumed mental disorder in the population. The ambiguity and redundancy of criteria, the neglect of social context in identifying the meaning of behaviors, and the arbitrary method of establishing cutoff points contribute to additional, more profound problems with validity of DSM categories.
The fundamental objective of DSM’s categorical approach was to capture people who all had the same presumed mental illness. Studying them as a group, it was hoped, would lead to the validation of the disease category by discovering some underlying biological marker that would validate the categories as existing in nature by distinguishing those who have the illness from others without the illness (Rounsaville et al., 2002). This was the Kraepelinian goal: to discover biological markers (hopefully causal) to confirm the existence of the diseases in those in whom diseases were hypothesized to exist and the inexistence of such markers in others.
This hasn’t happened. There are no known biological markers for any category. This observation is not only a Szaszian attack on the myth of the validity of mental disease; it is today the oft-repeated conclusion of current leaders of psychiatry. After thirty years of research using the modern DSM categories, there is agreement among the researchers who have looked at the problem that the DSM categories do not group together people with distinguishing characteristics (Regier, Narrow, Kuhl, & Kupfer, 2009; Jablensky, 2012; Rounsaville et al., 2002).
It is easy to understand why this lack of homogeneity within categories arose. First, there may be no distinguishing characteristic underlying the DSM madness categories to be found. If the categories themselves are invalid, precisely sorting types of behavior into them won’t make them meaningful. Recall that many women were identified and sorted into an earlier category of “witches,” but that sorting did nothing to establish the validity of the idea of witches. Second, as we have said, the criteria used for the sorting are ambiguous, redundant, and arbitrary. Third, the use of multiple criteria, that is, multiple behaviors, provides many entrances into the same category. For example, for Conduct Disorder for children, any three of fifteen different behaviors must be observed. But three of fifteen allows for many different combinations. In fact, it allows for precisely 455 different combinations of children’s behaviors in diagnosing a child with Conduct Disorder. Heterogeneity of children should be expected. The only consistency to be observed with Conduct Disorder is that clinicians use the same diagnosis for many different types of children and behaviors. Common problems such as this undermine the validity of DSM categories.
In addition to heterogeneity within categories, there is comorbidity across DSM categories. Comorbidity refers to people having more than one “disease,” more than one morbid condition. Since some DSM categories share diagnostic criteria (behaviors asserted to be representative “symptoms”), some people either meet the required criteria for more than one category or have some but not enough symptoms to “qualify” for any one DSM disease category. In short, many people don’t fit neatly into the DSM categories. This is not merely the case of the occasional person having more than one “independent” illness at the same time. This is a much more extensive and common problem, undermining the DSM assumption of discrete categories of illness. In fact, studies (Kessler, Chiu, Kemler, & Walters, 2005) have found comorbidity in about half of people diagnosed, suggesting, as one researcher said, that “there is no empirical evidence” for “natural boundaries between major syndromes,” and that “the categorical approach is fundamentally flawed” (Cloninger, 1999, as cited in Rounsaville et al., 2002, p. 12).
DSM provides various tactics for categorizing messy cases. One is a catchall option within most categories: NOS “Not Otherwise Specified.” If a person doesn’t meet the required specific criteria demanded by DSM, clinicians can use NOS. Another tactic, added in DSM-IV (p. xxiii) allows clinicians to use a category even if the problem “falls just short” of the full criteria. In these ways, the entire effort of the modern DSM to specify required diagnostic criteria can be ignored at any time by any clinician by using NOS or the “just falls short” options.
The categorical system has not carved nature at its joints, as is expected of any scientific classification system. The evidence is accumulating that there may not be joints to be found for presumed mental illnesses. There is growing recognition among researchers, including those crafting the DSM-5, that almost all of the phenomena of concern to psychiatry—behaviors, moods, perceptions, emotions, cognition—are better conceptualized as continua, ranging from the less intense (more frequently noticed) to the more intense (less frequently noticed), without any clear discontinuities along the way. If sharp discontinuities of feelings and behaviors were found, it might suggest some natural cutoff points at the boundaries of normal and unusual, lend some empirical validation to the disease categorical approach. We find this in most categories of serious physical illness, where there are independent tests to determine whether one has a cancerous tumor or not, pneumonia or not, tuberculosis or not. The exceptions tend to be around “illnesses” for which drug companies with a profitable product to sell until the patent on the product expires have lobbied powerfully to establish lower cutoff scores from physical tests for such things as bone density, high blood pressure, and cholesterol levels (Healy, 2012). In doing so, these drug companies greatly reshape the understanding of disease while extending their markets and profits (Greene, 2007).
In psychiatry, by contrast, we do not find natural discontinuities or bimodal distributions of anxiety, insomnia, irritability, or sadness or most other relevant experiences. Even hearing voices or thinking that others mean to harm us is a widely distributed phenomenon (Luhrmann, 2010). The dimensionality of the “symptoms” used in DSM suggests that the categorical system is problematic and that the attempt to distinguish disorder from nondisorder is arbitrary (Bolton, 2008). As we will see, most of the struggles over DSM-5 are, in fact, disputes over where the arbitrary boundaries should be drawn between phenomena that have not been validated as disease categories.
The modern DSM purports to provide guidance in identifying valid instances of mental illness. The manual explicitly claims that it is “atheoretical,” terminology that was used to imply that the categories did not contain any inferences about the “causes” of the disease, no theory about what it is or why it occurred. That’s why it is known as “descriptive diagnosis.” This is about all the manual could officially claim, because there is no convincing scientific evidence concerning what causes people to feel or act in ways that are uncomfortable to themselves or bothersome to others. But in practice, clinicians use DSM, because it does offer “medical” explanations for behavior, although it does so in a tautological manner.1
Imagine that you go to your physician complaining of a sore throat. The physician listens to your complaint and explains that you have Sore Throat Disorder. You inquire how he reached the conclusion about your illness, and he responds, “Because you have a sore throat.” This diagnostic reasoning would strike you as a joke, because, in medicine, when possible symptoms are noted, the physician uses independent procedures to gather information about the presence of some underlying disorder that might explain your symptom. For example, he might give you a physical exam or order blood tests, X-rays, throat cultures, or various invasive physical probes. If the physical tests and probes confirm that there is some underlying pathology, the physician can then conclude reasonably that your symptoms were caused by the pathology, perhaps in this case an infection triggered by some virus or bacteria. Even if the ultimate cause of the pathology is unknown, we can explain the symptoms as a result of the observable, tested pathology. The point here is that a symptom (a complaint, a behavior) explains nothing by itself. The symptom might have several underlying causes. And in the absence of a physical sign—which itself may also have several different underlying causes—the symptom is an extremely poor guide to determine what, if anything, is the matter.
Contrast this with diagnosis in psychiatry. You take your young son to a psychiatrist and complain that he doesn’t pay attention, doesn’t listen, and is fidgety most of the time. The psychiatrist listens to your story and shares that disturbing news that your child’s behaviors are due to a mental disorder: Not Paying Attention Disorder. You may be comforted to learn of the diagnosis that explains your child’s behavior, but you ask the psychiatrist how he reached this conclusion. He explains that he reached the diagnosis because the boy doesn’t pay attention.
This is precisely how children are diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD). To use the diagnosis of ADHD, a child must exhibit at least six behaviors from a longer list in DSM, such as he often fidgets or “often fails to give close attention to details” or “often does not seem to listen”—redundant criteria—as we have pointed out in detail. If the child meets the criteria, the child is said to “have” the underlying disease of ADHD. But no independent tests can verify any underlying mental disorder; the very symptoms used to construct the alleged mental disorder confirm the presence of the disease. Why does the child fidget and not listen? Because he has ADHD, the construct that uses these descriptions as its defining criteria. How do we know he has ADHD? Because parents and teachers state that he fidgets and doesn’t listen. The acceptance of this patently circular reasoning by countless experts, authorities, and parents in America and increasingly around the world is a sad measure of the scientific “progress” that has been achieved in mental health.
This tautological ruse with ADHD is not confined to children’s disorders. Psychiatric diagnosis in general is the equivalent of Sore Throat Disorder. It is description masquerading as explanation. In psychology, this is called the nominal fallacy, in which naming is presented as explaining (Levy, 2010). DSM has made the nominal fallacy another foundation stone. Naming and describing a phenomenon as a mental disorder does not in any way confirm the validity of diagnosis or of the existence of a presumed disorder.
One would reasonably expect that these glaring weaknesses of descriptive psychiatry—unreliability and invalidity due to ambiguous and redundant criteria that ignore social context; the lack of homogeneity within categories and comorbidity across categories; arbitrary decisions about cutoff points biased in favor of false positives; and where merely naming is passed off as explaining—would have completely undermined the credibility of the modern DSM and that the APA’s ownership and monopoly over the terrain of madness would be called into question.
When such serious flaws are found with other consumer products, such as were allegedly seen with Toyota’s automobiles, this would justify a recall, a suspension of sales, an independent scientific review, and a search for a different manufacturing approach. Instead, DSM has been a huge success and created an epidemic of labeling people as mentally ill (Whitaker, 2010). In thirty years, DSM went from a meaningless codebook to a veritable bible on madness and misbehavior. Ironically, the serious flaws of DSM have been exploited to extend its use. If there are no solid conceptual or empirical standards for what should be considered a psychiatric “brain” disorder, if the diagnostic criteria are ambiguous, if any troublesome behavior can be designated as a “symptom,” and if clinicians have wide latitude and financial incentives to find disorder, the DSM becomes a handy dictionary of disorders with a scientific patina only provided by the APA. It is then understandable that with each edition, the list of disorders and the criteria expand, the thresholds for diagnosis become less stringent, and proposals for new “recently discovered” brain disorders pour in—binge eating, shopping disorder, psychosis risk syndrome, road rage, temper dysregulation disorder, and more. Many people, professions, and programs are stakeholders, and they relentlessly push for more psychiatric brain disorders—that is, for more names of entities to be accepted as brain disorders.
Nothing in the turgid text or detail of the modern DSM can possibly account for its huge success. Nor was there ever any solid scientific evidence of its vast superiority. Its success was that it found an eager market among powerful groups, institutions, and organizations, and perhaps fed on an insatiable urge to medicalize that which is difficult to understand. Let’s look briefly at these groups and institutions and some of their actions.
The boosters of DSM in 1980 skillfully used the professional journals of the American Psychiatric Association as part of the promotion of the manual. Instead of a scientific journal functioning as an arbiter of truth and tests for truth, the APA-sponsored American Journal of Psychiatry promoted a commercial product in which it had a financial stake (for details, see Kirk & Kutchins, 1992: 185–187). Rarely would you see in a scientific article, as one did in 1980, a footnote directing readers to the sales department of the APA and instructing them in precisely how much money they needed to send to the APA for a copy (Spitzer, Williams, & Skodal, 1980). The APA’s leadership, however, had not given Spitzer a mandate to radically change the diagnostic system, not sanctioned the methods he used to accomplish it, or welcomed the controversies he created behind the scenes and publicly. Nevertheless, by the time the new manual was approved, the APA rallied behind Spitzer’s efforts.
Spitzer had proved himself an able advocate and a tireless crusader. The task force he chaired and the committees he created and coordinated were composed of many of the rising scientific elite of psychiatry. Although psychoanalytic factions of the profession and many psychologists were skeptical about the nature of the new manual, the APA could hardly turn its back on a diagnostic effort that was being billed as a great scientific achievement and as a way for psychiatry to take the upper hand in a battle with critics. Spitzer offered irresistible products: scientific respectability and the illusion of supportive data. After 1987, however, Spitzer’s personal stamp on the manual and strong control over the processes of revision began to grow uncomfortable for the APA and the APA replaced Spitzer as the chief DSM guru with another DSM insider, Allen Frances, an expert on personality disorders, who was chosen to guide the development of DSM-IV (Spiegel, 2005).
The APA’s rapid embrace of the DSM was only part of what propelled its success. Mental health professionals were easy converts or draftees, and it was their purchasing of the manual that created a multimillion-dollar commercial windfall for the APA. Psychiatrists were only a small proportion of the professionals in the burgeoning mental health professions during these decades (Goleman, 1990). Although most clinicians weren’t embroiled in the academic debates over the meaning of mental illness or the reliability of diagnoses, they were aware of the growing attention of the public to mental health and the growing popularity of psychotherapy in its many forms. The reestablishment of the credibility of psychiatric diagnosis, under the medical imprimatur of the APA, provided a plausible defense for all these clinicians, not only for psychiatrists. The new DSM gave them all a handy scientific-looking codebook that provided a rationale for labeling human troubles as true “mental disorders” and a medical justification for their helping services, along with a renewed sense of respectability and status. Whatever the concerns of psychologists about the increased medicalization of behavioral problems or of social workers about the emphasis on internal pathology to the neglect of the social environment, clinicians eventually lined up to buy the new tome and to use it, in part because they had little choice. The more DSM was used, the more it had to be used. The use of DSM was rapidly adopted and required by clinics and agencies, and those in private practice needed it as well, since filing a specific, recognizable, and codified diagnosis quickly became a requirement for insurance reimbursement for services rendered. For clinicians, DSM migrated from codebook to bankbook.
In addition to the APA, a chorus of institutional voices sang praises to the biomedical revolution in psychiatry and helped establish DSM’s dominance (see, for example, Whitaker, 2010, pp. 276–280). The first was the NIMH. As the federal government’s major advocate for mental health research and services, NIMH played a marginal role in the development of DSM-III, although indirectly it funded many of the psychiatric studies that brought attention to the problems of psychiatric diagnoses. NIMH, after all, had a stake in finding a better scientific grounding for diagnoses as a way of organizing knowledge about mental illness. The claims made about DSM-III were music to the bureaucratic ears of officials at NIMH, and NIMH signed on as a booster. Shortly thereafter, NIMH made the use of DSM’s criteria a virtual requirement for those seeking funding for research on treatment, diagnoses, and epidemiology.
The second institutional investor was comprised of multinational drug companies. Although the role of pharmaceutical companies in psychiatric research is now pervasive (Carey, 2006; L. Cosgrove, Krimsky, Vijayaraghavan, & Schneider, 2006; Healy, 2012), as it is in most areas of medical research, the role of the drug industry in the original development of DSM-III is obscure (though some studies, as in the case of panic disorder, do exist, see Jacobs, 1995, pp. 441–442). Nevertheless, the creation of DSM-III and the expanding number of disorders with lists of vague diagnostic criteria was an incredible gift to the pharmaceutical industry, offering not only scientific respectability to diagnosis, but also an opportunity for the expansion of the range of behaviors that might be legitimately labeled as symptoms of disorders and thereby treated with patented and prescribed psychoactive medications (see chapter 6 and 7). DSM gained prominence as these companies, part of one of the largest and richest industries in the world, exploited the expansion of mental disorders (Angell, 2011a, 2011b).
The third institutional investor in DSM was the health insurance industry, both public (e.g., Medicaid) and private. As more insurance policies began to include coverage for psychiatric treatment of some mental disorders, the insurance industry relied on the DSM to guide decisions about what distinguishes a mental disorder from other human problems. Also, the industry appreciated the lists of diagnostic criteria, which put constraints on mental health professionals using diagnostic labels indiscriminately. Thus, the appearance of a new “reliable” diagnostic system with lists of diagnostic criteria provided guidance to insurance companies sorting out whether reimbursement claims from mental health clients represented help with “genuine” psychiatric illness or merely with ordinary problems in living for which insurance would not pay. For example, parents seeking help for managing an unruly child might consult friends, teachers, or members of the clergy but would normally not seek, nor would companies pay for, professional services unless that child was officially labeled as having a mental disorder, such as Attention-Deficit Disorder. The new revised DSM gave insurance companies two tools. One was a list of specific behavioral criteria that had to be met before a diagnosis was used, providing the appearance that objective criteria, rather than clinicians’ vague judgments, were employed to distinguish illness from other problems in living. Second, the expanded list of disorders forced insurance companies to select which specific disorders they would pay for and which they would not cover. Few insurance plans will cover all of the disorders in DSM; most cover only the more “serious” ones or the more popular ones; and most impose sharp limits on the number of treatment visits in a given time period. Thus, despite the potential expansion of disorders that the drug companies encouraged, the insurance companies could use DSM selectively to regulate their exposure to financial risk and costs.
Two federal laws, the Mental Health Parity and Addiction Equity Act of 2008 and the Patient Protection and Affordable Care Act of 2010 are likely to alter the insurance terrain in unpredictable ways. The first legislation insists that insurance coverage for mental disorders have “parity” with the coverage for physical diseases, and the second is the massive health reform legislation introduced by President Barack Obama. Although too early to know as of this writing, it is likely that DSM’s uses will increase through these initiatives and that the demand for and cost of treatment for mental disorders will increase. Conversely, to limit their costs, insurance companies might begin to insist that, in addition to diagnoses, measures of actual disability or impairment and their reversal determine eligibility for insurance coverage of mental disorders. Similarly, measures of efficacy as determined by clients, rather than only asserted in the professional literature, might be used by insurance companies to determine whether a given treatment for a mental health problem receives coverage. We will return to some of these issues in the concluding chapter of this book.
The fourth institutional investor was the news media, which has provided the public with a steady diet of stories about purported scientific advances in psychiatry since the 1960s. If one had asked ordinary people on the street in 1960 whether they had ever heard of the Diagnostic and Statistical Manual of Mental Disorders, only a few would have expressed any recognition. Today, many would not only say that they had heard of it, but most likely they would also be able to say which DSM disorders they qualify for. The DSM criteria sets for psychiatric diagnosis frequently appear in magazine and newspaper articles and are featured in stories on television. Pharmaceutical companies advertise these criteria in ubiquitous TV ads to increase their markets of people seeking and taking psychiatric drugs.
The APA, mental health professions, NIMH, drug and insurance companies, and the news media were all using DSM for their own disparate and often inconsistent institutional purposes: as a declaration of professional jurisdiction; medical dictionary of disorders; compendium of human troubles; administrative codebook; textbook and training manual; protocol for research funding; justification for prescription medications; insurance reimbursement claim form; and as a legal tool in forensic settings. Together this alignment of powerful professional, governmental, and commercial institutions—perhaps accurately termed the biomedical or biopsychiatric industrial complex—ensured the expansion of DSM because, even though each member may have had a different agenda, all were united to promote the idea that deviant or strange behavior should be understood as a medical illness subject to government-supported medical authority and intervention. Remarkably, little public opposition arose. Although DSM-III and DSM-IV completely failed to deliver on their scientific promises and claims, their marketing was effective, pervasive, and unstoppable.
Science is always the ostensible rationale for revising DSM. Ever since Robert Spitzer first claimed science as the rationale to reform the DSM in the 1970s, each subsequent revision (DSM-III-R, DSM-IV) was justified by claiming that the manual needed to incorporate new scientific knowledge. As implausible as that rationale has been, it is nearly impossible to assess before the revision is published. Even afterward, the manual contains no footnotes directing the curious to the scientific data on which hundreds of decisions were made. Despite criticisms of each edition, the promoters of DSM hope that among the vast armies of users the manual, like religious dogma, will be accepted gratefully and uncritically.
Something different emerged for the next edition, DSM-5. Work on DSM-5 began five years after the publication of DSM-IV in 1994. Discussion about the next revision began among the director of NIMH, the medical director of the APA, and the chair of the APA’s committee on psychiatric diagnosis who jointly organized a DSM-5 Research Planning Conference in 1999 to “set research priorities” (APA, 2008). Over the next years, they set up planning work groups, commissioned a series of white papers, and sponsored over a dozen conferences to discuss and develop a research agenda for DSM-5. The APA stressed the global nature of the efforts, which involved consultations with the World Health Organization (WHO), the World Psychiatric Association (WPA), and others. NIMH was asked to fund a series of “research planning conferences that would focus on the research evidence for revisions of specific diagnostic areas” (APA, 2008). NIMH, the National Institute on Drug Abuse (NIDA), and the National Institute on Alcoholism and Alcohol Abuse (NIAAA) provided over $1 million. Originally expected by 2010, the publication of DSM-5 has been pushed back several times as political and scientific problems have mounted. The latest date posted by the APA as of this writing is May 2013, making the gestation period for the next edition nearly three times longer than it took Robert Spitzer to give birth to DSM-III.
Selected experts were invited to participate in the important initial planning conference, but, curiously for a purportedly scientific effort, those closely involved in the development of DSM-IV were not included, “to encourage thinking beyond the current DSM-IV framework” (APA, 2008). We will return to this matter shortly.
In 2006 the APA president appointed Drs. David J. Kupfer and Darrel A. Regier, prominent insiders at the APA and NIMH who had key roles in prior DSM editions, as the chair and vice chair of the DSM-5 task force. Kupfer and Regier then nominated other APA members as chairs of the various work groups and as members of the central task force. The rhetoric of the APA was similar to that used in prior revisions. There were assurances that the diagnostic categories “will evolve to better reflect new scientific understanding,” that there were “no pre-set limitation on the nature and degree of change that work groups could recommend,” that their work would encourage “research questions and hypotheses . . . that can be “investigated through literature reviews and analyses of existing data,” and that “they will also develop research plans, which can be further tested in DSM-V field trials involving direct data collection.” Based on this “comprehensive review of scientific advancements, targeted research analyses, and clinical expertise, the work groups will develop draft DSM-V diagnostic criteria” (APA, 2008).
In May 2008 the APA announced the appointment of most members to all the major committees, “more than 120 world-renowned scientific researchers and clinicians” to “examine the extent to which this new research warrants modifying the current organization of disorders, descriptions of disorders and the criteria for diagnosis” (from APA press release: “APA names DSM-V work group members: Experts to revise manual for diagnosis of mental disorders” May 1, 2008).
One element of these APA announcements, however, had never appeared in prior DSM revisions, namely, that in order to avoid any “conflicts of interest” all task force and work group members had to “disclose all significant relationships with entities that have an interest in psychiatric diagnoses and treatments.” Further, no participant was allowed to be paid more than $10,000 per year from “industry sources” while working on the revision. The APA press release provided reassurance that “we have made every effort to ensure that DSM-V will be based on the best and latest scientific research, and to eliminate conflicts of interest in its development” (May 1, 2008; emphasis added). Investigative journalists had already documented that the pockets of the APA, psychiatric leaders and organizations, and leading officials at NIMH and elsewhere were bulging with drug money (Willman, 2004a, 2004b; see chapters 6 and 7). The APA’s announcement about avoiding conflicts of interest and voluntary disclosures had the appearance of a requirement forced onto the APA after a series of disturbing public revelations (see also Cosgrove et al., 2006).
For years drug industry ties to psychiatry had been hidden, although there was increasing evidence of financial conflicts of interest in medical research (Bekelman, Li, & Goss, 2003; Campbell et al., 2007; Campbell et al., 2006; Rothman, 2008). Drugs firms make billions of dollars marketing psychoactive drugs to primary care physicians and psychiatrists. For example, prescriptions for powerful antipsychotic drugs rose to 54 million in 2011, with total US sales of $18.2 billion (Friedman, 2012). As the DSM-5 revision got underway, however, there was a cascade of negative revelations about psychiatry and the drug industry. For example, in 2007, it was revealed that psychiatrists top the list of medical specialists in accepting gifts from drug companies (Harris, 2007), and in 2010 a study in the Archives of Internal Medicine found that nearly 80 percent of psychiatrists had some kind of a relationship with drug companies (Graham, 2010). A congressional investigation, led by Senator Grassley, uncovered a series of conflicts of interest in psychiatry, which were reported by most major newspapers. These articles documented hidden financial payments by drug companies to influential psychiatrists at Harvard, Stanford, and Emory universities, and elsewhere.
Take the case of Charles B. Nemeroff, who resigned from his position as chair of the psychiatry department at Emory University after it was disclosed (Harris, 2008b) that he had received funds from drug companies without revealing them as required by the university and by NIMH, which also funded his research. In this and other cases, the universities and the NIMH began internal investigations. To the authors of this book, the reactions of the universities and of NIMH appear as disingenuous as that of the APA. For example, Emory University claimed to have been misled about Nemeroff’s extensive involvement with drug companies though he was hardly secretive about his conflicts of interest (which were probably taken to constitute business-as-usual in that academic field). For example, in his 2004 book, The Peace of Mind Prescription: An Authoritative Guide to Finding the Most Effective Treatment for Anxiety and Depression (Charney, Nemeroff, & with Braun, 2004), Nemeroff provides a footnote in the introduction that lists the drug companies (and one research group primarily funded by the drug industry) from whom he received support. They include the following:
•Abbott Laboratories
•AFSP
•AstraZeneca
•Bristol-Myers Squibb
•Corcept
•Cypress Biosciences
•Eli Lilly
•Forest Laboratories
•GaxoSmithKline
•Janssen Pharmaceutica
•Merck
•NARSAD
•Pfizer
•Wyeth-Ayerst
•Acadia Pharmaceuticals
•Neurocrine Biosciences
•Novartis
•Organon
•Otsuka
•Sanofi
•Scirex
•Somerset
As an indicator of how little Nemeroff’s history of undisclosed payoffs bothered the psychiatric community, shortly after he was forced to resign from Emory University as department chair and his NIMH funding was suspended, Nemeroff was recruited by the University of Miami as chair of its psychiatry department. Thomas Insel, the director of NIMH, even recommended him for that position (Basken, 2010).
Another scandal involved P. Trey Sunderland, the head of the NIH’s geriatric psychiatry branch, who was charged by federal prosecutors for taking $285,000 in fees from a drug company, Pfizer, without the permission or knowledge of NIH (Wilson, 2006). Another public embarrassment was caused by Frederick Goodwin, the former director of NIMH, who was a radio celebrity on National Public Radio (NPR). In 2008, NPR fired him when it learned that he promoted the off-label use of mood stabilizers for children on the radio without disclosing that he had received more than $1 million from drug manufacturers since 2000 (Harris, 2008a).
Still another public relations disaster involved Harvard psychiatrist Joseph Biederman, the leading promoter of labeling children with bipolar disorder, a diagnosis which had rarely been applied to children (Harris & Carey, 2008). His promotion was credited with the dramatic increase of the use of that unusual diagnosis, which directly encouraged the off-label use of antipsychotic and anticonvulsant drugs for children—drugs with commonly dangerous effects. It was revealed by the congressional investigation that Biederman and his drug industry-funded research center had received millions of dollars from companies that profited handsomely from his advocacy (Harris, 2008c).
Although the APA is not directly responsible for these unethical practices by individual members, universities, or federal research institutes that regularly choose to look the other way or do not enforce their own rules, it also benefits from drug industry money. The US congressional investigation requested that leading medical associations reveal details about the amount of money that they and their directors receive from drug makers (Harris, 2009b). The APA receives 30 percent of its $62 million budget from pharmaceutical companies in ad revenues, convention support, and other income. Its own president in 2010, Alan Schatzberg of Stanford University, had $4.8 million in stock holdings in a drug company that he had cofounded. A huge proportion of the costs for the required continued education of psychiatrists and other physicians are paid by drug companies (Carlat, 2007). In addition, the APA and other publishers of medical journals have been faulted for failing to reveal conflicts of interest among authors of research articles funded by or conducted by drug companies; failing to prevent the publishing of articles ghostwritten by drug company employees (Wilson, 2009), and failing to reveal that drug companies’ studies that don’t support their products have been suppressed or manipulated (The Economist, 2008). Even when an APA committee made fourteen recommendations designed to regulate and significantly curtail conflicts of interest between psychiatrists and the pharmaceutical industry, the APA Assembly, its governing body, quashed the report before it could even be discussed and debated (Cassels, 2010). Universities, too, are not blameless; they have also failed to control conflicts of interest (Basken, 2009b; Harris, 2009; Monastersky, 2008), because they too are not immune to the attractions of money.
The actions of many drug companies have been described as criminal and have resulted in about $7 billion in fines or penalties for illegal off-label marketing and overcharging government health programs between 2004 and 2009 alone (Bloomberg.com, 2009; New York Times, 2010). There is rising concern that drug companies have corrupted medical research (Angell, 2004; Barber, 2008; Whitaker, 2010). A coalition of concerned scientists and ethicists petitioned NIH to investigate the many conflicts of interest that pervade medicine, including ghostwritten articles, physician payoffs, and the use of hired academic opinion leaders, such as Goodwin, Biederman, and Nemeroff, to increase markets for drugs (Basken, 2009a).
It was then—as a defensive reaction to these unfolding investigations of corruption and conflict of interest and to a study that uncovered that a majority of the psychiatrists who had served on the DSM-IV task force had financial ties to drug companies (Cosgrove et al., 2006)—that the APA responded with a conflict-of-interest policy for those working on DSM-5. (Note: in 2010, the APA officially changed DSM-V to DSM-5.). A response from the APA was needed, since another study had shown that psychiatrists were more likely than other medical specialists to receive payoffs from drug companies. To defend the profession, the APA requested that all of the participants in the DSM-5 work groups sign a pledge (APA, 2012) to limit the income they receive from pharmaceutical companies. But the agreements are hardly reassuring. Each task force member pledged to take no more than $10,000 a year from drug manufacturers during the at least five-year process. Few observers would doubt that $50,000 or more might influence judgment. Among some public figures or public servants, such conflicts could lead to criminal conviction and prison sentences. There are other loopholes: there is no limit to the amount of money that participants can receive in “unrestricted” research funds from the same companies, nor is there a limit to how much they had received in prior years or will be paid in years immediately following the release of DSM-5.
Many principal members of the DSM-5 task force have had lucrative relationships with many drug companies. The Center for Science in the Public Interest reported that twenty-eight members of the DSM-5 task force are reported to have drug industry ties (Kaplan, 2009). The APA disclosure forms were incomplete and misleading, according to a report in U.S. News and World Report (Garber, 2007). For instance, they didn’t reveal the drug industry funds that were funneled through other companies to the task force chair, David Kupfer. Also, the forms do not reveal how much money changed hands—as if the difference between $500 and $500,000 is irrelevant. Finally, disclosures were voluntary. In short, the APA’s feeble attempt to control conflicts of interest in the revision of DSM only called attention to the wave of influence from the drug industry that permeates the psychiatric establishment. In fact, the most recent study (Cosgrove & Krimsky, 2012) of conflicts of interest among those working on DSM-5 reports that 69 percent of the participants have ties with pharmaceutical companies, a one-fifth increase over the previous edition.
Although Robert Spitzer was removed from DSM oversight by the APA in the late 1980s, he resurrected himself with DSM-5. This time, instead of effectively managing political controversies created by outsiders, he created one himself. In September 2008 Spitzer sent an open letter (via e-mail) to a wide swath of mental health professionals, accusing the APA and the DSM-5 task force of revising the next edition of DSM in secret (Spitzer, 2008). His letter was the purported outgrowth of his frustration in attempting to have the task force leaders, David Kupfer and Darrel Regier, make public the minutes of DSM meetings. Apparently they had refused his requests by invoking the need “to maintain DSM-V confidentiality.” In his letter, Spitzer revealed that all those involved in the DSM revision process had been required to sign a confidentiality agreement that prohibited them from disclosing anything about the DSM-5 to anyone, including the spiritual godfather of the modern DSM, Spitzer himself. Spitzer found this unprecedented, puzzling, and “ludicrous.” He argued that an open and transparent process would allow for wide critical review—the very “foundation of science.” He stated:
It is ironic that one of the most widespread (and in my view unfair) criticisms of DSM-III and progeny has been the process of decision-making by committee. This silly new “confidentiality” policy plays right into the hands of these critics and fuels cynicism about the decision-making process—except that in this case, in contrast to decision making for the revision of prior DSMs, the cynicism may be well justified. (Spitzer, 2008)
It was clearly Spitzer’s intention to create a political controversy for the APA and the DSM-5 participants. And he did. Newspapers picked up the story (Carey, 2008; Grossman, 2008; Lane, 2008). But so did the other DSM guru, Allen Frances, who had guided the development of DSM-IV. Both Spitzer and Frances, the two psychiatrists in charge of DSM for thirty years, opened a public attack on those working on DSM-5. Their attack is worth describing in some detail, because it borrows heavily from those who have been psychiatry’s severest critics, portending yet another impending crisis in American psychiatry.
For years, outside critics and some marginalized psychiatrists have been accusing psychiatry of engaging in the systematic medicalization of normality (Boyle, 2002; Breggin & Breggin, 1994; Caplan, 1995; Caplan & Cosgrove, 2004; Chodoff, 2002; Cohen, 1990, 1994; Conrad, 2007; Kutchins & Kirk, 1997; Szasz, 2007). Now those accusations were coming from insiders who had promoted and worked for the American Psychiatric Association. On June 19, 2009, Spitzer circulated a new long essay by Allen Frances that struck at the very heart of DSM’s weaknesses. Frances forecast “grave problems in the DSM-V goals, methods and products” that if not corrected would “lead to many damaging unintended consequences,” and he described a psychiatric debacle that he feared was in the making (Frances, 2009c). Someone who spent decades developing and strengthening the DSM enterprise had transformed himself into a critic of that enterprise. As Greenberg (2011) quipped, Frances was “hurling grenades into the bunker where he spent his entire career.”
First, Frances accused the leaders of DSM-5 of soaring ambition and remarkably weak methodology. He thought the task force leaders’ claim that the next revision would be a “paradigm shift” was absurd. The simple truth, he said, is that “there can be no dramatic improvements in psychiatric diagnosis until we make a fundamental leap in our understanding of what causes mental disorders.” The advances in neuroscience, he said, “are still not relevant to the clinical practicalities of everyday psychiatric diagnosis.” He reminded them of the “disappointing fact that not even one biological test is ready for inclusion in the criteria sets of DSM-5.” No paradigm shift can occur now, he argued, because “descriptive diagnosis is simply not equipped to carry us much further than it already has” (Frances, 2009c). He questioned the advantage of moving toward dimensional ratings, arguing that introducing more complexity into the manual would not be a paradigm shift and would probably be ignored by busy clinicians.
Most of his essay focused on the great risks to psychiatry if the rumors behind the secret revision process were true. First, if the revisions were not based on substantial evidence, any “innovations” would likely be trivial and arbitrary while requiring unnecessary efforts by clinicians, educators, and researchers to adopt new diagnostic procedures.
Frances went further: he cautioned in an astounding mea culpa that changes in the DSM-IV diagnostic criteria had created three false epidemics: those of autistic disorder, ADHD, and bipolar disorder. He warned that the drug industry was ready to pounce on every change in criteria that “could conceivably lead to a marketing advantage . . . to promote drug sales.” He predicted “many new ‘epidemics’ based on changes in DSM-V” (Frances, 2009c).
Frances worried that little new research or field testing of DSM-5 using any new criteria sets or studies of reliability or prevalence would occur (eventually there were field trials, as we will discuss in a moment). He discounted research in university settings as not generalizable to normal practice settings. He faulted the DSM-5 work groups for using inconsistent standards to make changes and of ignoring many research papers prepared in the last revision. He fretted about DSM-5’s “shallow foundation” and “embarrassing post publication surprises.” He pointed to some representative examples of DSM-5’s “most reckless suggestion,” namely its inclusion of many new categories to capture “the milder subthreshold versions of the existing more severe official disorders.” He argued that recognizing milder versions of disorders would “flood the world with new false positives” and prevalence rates would “skyrocket,” resulting in “a wholesale imperial medicalization of normality . . . a bonanza for the pharmaceutical industry.” (emphasis added). “Psychiatry,” he asserted, “should not be in the business of inadvertently manufacturing mental disorders.” Frances also criticized the proposal to add a “prodromal” or so-called pre-psychotic category. “This is a drug company’s dream come true,” providing “ways of penetrating the huge new markets with medications having largely unproven benefit and very substantial side effects” (Frances, 2009c).
As if this weren’t damning enough, Frances continued to press his concerns about what appeared to be a runaway train of diagnoses. He castigated the task force for even considering the expansion of the “behavioral addictions” (to shopping, sex, food, internet, etc.) and other proposals for new, questionable disorders or expansion of existing ones. He concluded by worrying about the “extremely puzzling” secrecy of the whole process and confided that he had “little confidence” in the current DSM-5 leadership. He and Spitzer called on the APA to establish an external review committee to monitor the progress of DSM-5 (Frances, 2009c).
This early and unexpectedly forceful public attack on DSM-5 did not go unanswered by the APA and the task force leaders (Schatzberg, Scully, Kupfer, & Regier, 2009), who nonetheless avoided responding to the core of Frances’s critique. The APA leaders claimed that the DSM-5 process was “the most open and inclusive ever,” implicitly comparing theirs to the prior ones of Spitzer and Frances, and that their new process was “scientific.” They explained that the key difference was that their “focus is not on keeping things as they are” but on determining what was wrong with the current DSM and trying to correct it, implying that Spitzer and Frances were merely wedded to their own prior work. Instead, the APA leaders said without providing specific details, the DSM-5 would optimize clinical utility and be guided by research evidence. They then counterpunched: “The DSM-III categorical diagnoses with operational criteria were a major advance for our field, but they are now holding us back because the system has not kept up with current thinking” (Schatzberg et al., 2009). The APA leaders ended their rebuttal by implying that Spitzer and Frances’s critique was motivated by financial conflicts of interest, noting that the two were still getting royalties on earlier DSM-associated products that would end with the publication of DSM-5.
Spitzer’s reply to the APA focused on terrain that he knew well: field trials. After acknowledging that the APA’s response had “taken an ugly turn” (Spitzer, 2009), Spitzer resumed his attack on the APA’s secrecy. If the DSM-5 process was the most open and inclusive ever, he asked, why were the leaders of the APA unwilling to reveal any details of the field trials that were scheduled to begin imminently? As Spitzer knew from personal experience, the field trials were complicated to conduct in the process of a manual revision, but they also were useful in providing a scientific patina to the hundreds of decisions that were being made. There was no conceivable reason that the plans for the field trials should not be made public. He asked pointedly: what proposals are being tested in trials; what is the empirical basis for the trials; what is the planned methodology of the trials; and what are the questions being asked of the trials—reliability, validity, rate of false positives? Spitzer offered two possible reasons why the APA remained silent concerning these simple scientific questions: (1) the APA leaders were shielding themselves from criticism or (2) they did not yet know the answers to those questions. In short, Spitzer was striking at the heart of the APA’s scientific pretense.
The rancor continued in the Psychiatric Times between the prominent inside defenders and inside critics of the DSM-5 process. (See the variety of responses at http://www.psychiatrictimes.com.) Allen Frances was compelled to defend his motivations for his criticisms, pointing out that his royalties on products from DSM-IV were no more than the conflict-of-interest policies for everyone working on DSM-5. He argued that there were profound risks to psychiatry of making ill-considered changes to the diagnostic manual. He also reiterated that “descriptive psychiatry had reached its limits of usefulness” and that at best the new task force should strive to “do no harm” (Frances, 2009b). Six months later, Frances issued an alert to the research community, based on his “several converging, anonymous . . . sources” (Frances, 2009a).
Using the gambit of an investigative reporter relying on insider informants, he relayed to the psychiatric community that the APA was about to release a draft of options for DSM-5 on the web in January and February 2010 and that the research community would only have a month to respond, an exceedingly brief review period for such an important document. He also leaked the news that the field trials had been postponed, that the proposal for external funding for the trials had been rejected, that early drafts of diagnostic criteria sets displayed their drafters’ inability to write clearly and consistently, and that the final publication of DSM-5 had been set back to 2013. He repeated his warnings that there was much harm that an ill-considered DSM could bring to the practice and research communities in the form of the further “medicalizing normality and trivializing psychiatric diagnosis” and again noted the influence of the drug industry and the excessive use of medications that are potentially dangerous. He ended by encouraging the research community to be prepared to apply “pressure” on the DSM-5 process by pointing out specific problems when the draft was released. And then Frances stated:
The APA realizes that it holds the franchise to publish the DSMs only by historical accident, and that this is easily revocable if enough interested organizations lose confidence in its competence and its ability to control its inherent conflict of interest. (Frances, 2009a)
Frances’s warnings proved correct. In February 2010 the APA released a draft of DSM-5 on its website, which contained scores of pages and documents and solicited comments. It provided less than two months for comments on the exceedingly complex document. And, as forecast, it announced the postponement of both the field trials and the publication of DSM-5. The media immediately began covering issues raised by the draft (Carey, 2010b).
What even a cursory review of the draft of DSM-5 revealed was that Spitzer and Frances’s fears were well grounded. Everything that Frances fretted over was included in the draft and more. While the developers of DSM-5 invited private comments about the draft directly on its own website—comments that would be available to them alone and not to the interested psychiatric community—Frances immediately began publishing scathing critiques of its contents (Frances, 2010a, 2010d). He said that the plans for field trials had at least six “seriously disabling limitations” and one fatal one (Frances, 2010b). Among the six disabling limitations, three focused on reliability: namely, that unclear diagnostic criteria would lower reliability, that field trials in average clinical settings were likely to show low reliability and “undercut the credibility” of diagnosis, and that reliability studies in special research settings would not be generalizable. Two other limitations were that the design of the field trials were unfocused and would not provide much useful information and that the complexity and logistics of the field trials would postpone the manual by at least a year. The most serious and fatal problem was that the new manual would lead to a tsunami of overdiagnosis.
In another article, Frances argued that normal grief would be diagnosed as a mental disorder in DSM-5 and would invite harmful, unneeded medical intervention (2010c). Other critics jumped on the proposed changes to the personality disorders section of DSM, in which five of the ten existing disorders would be eliminated and the others would be given different names (Carey, 2010a; Zanor, 2010). This proposal was a stunning admission of the invalidity of one of psychiatry’s key set of disorders. In a commentary in the APA’s flagship journal, seven prominent experts questioned the changes being proposed for the personality disorders (Shedler et al., 2010; Shedler et al., 2011; Skodal, 2011). Even members of the DSM-5 task force worried about “monumental screwups that will turn the field into a laughingstock,” but would not go on record for fear of retaliation, according to Gary Greenberg, who interviewed them (Greenberg, 2011).
On several critical fronts, the leaders of the DSM-5 had to acknowledge limitations, some profoundly unsettling, while acting as if great progress was being made. For example, in a commentary in the APA’s flagship journal, Kupfer and Regier acknowledge that when they began planning the revision they expected that scientific advances in genetics, neuroimaging, and pathophysiology during the last twenty-five years would “mitigate” the known limitations of DSM (Kupfer & Regier, 2011). They anticipated that this knowledge would help to provide a more valid classification of mental disorder, one at long last grounded on some neuroscience findings. They conceded that this was currently not possible. Rather than admit failure, they noted proudly that NIMH would be continuing to search for this elusive neurobiology and that “we believe this initiative will be very informative for subsequent versions” (p. 673) of the manual. They acknowledged that “it is difficult to assess how quickly progress will come about . . . but genetic data are clearly not yet ready for clinical applications” (p. 673). They continued: “Can we ask psychiatrists to use genetic markers to assist in diagnosing a patient with schizophrenia? At this point in time, the answer is no.” But they reassured readers that the time is “soon coming,” that like the Bible, DSM is a “living document,” a “work in progress” that will incorporate “dramatic neuroscience discovery” (p. 674). This is DSM’s, and psychiatry’s, perennial promise: valid psychiatric diagnosis is just around the next (neuro)science corner.
Even if neuroscience isn’t ready for prime time, the DSM-5 task force posted on its website the proposed changes to the DSM and invited feedback from any interested parties. This posting was itself claimed as some achievement, although it was, for the most part, a public relations process. In periodic reports, Kupfer offered positive and upbeat news of DSM-5 developments, largely ignoring the storms that were brewing. For example, in the August 2011 commentary (Kupfer, 2011), he says that the “feedback was so successful” that they received “visits” from 125,000 individuals. He mentions, however, that only 2,120 (less than 2 percent) made comments or asked questions. Curiously, most frequent comments were about sexual and gender identity disorders. Some comments were concerned with insurance reimbursement, some with pathologization, some promoted particular diagnoses, and others were from consumers talking about their own experiences. Nonetheless, Kupfer conveys excitement about these comments and reassures everyone that they are “sorting through all submissions.” He asserts, “The importance of public and professional input into DSM-5 cannot be understated” (Kupfer, 2011). The importance, of course, is in appearing to be responsive, while keeping the work and the decision processes of the committees essentially private.
But the appearance of openness and vacuous press releases didn’t quell concerns about the revisions of the DSM; in fact, the concerns intensified as questions arose about the “science” of diagnosis and its social implications. One unlikely example was the emergence of controversy about Asperger’s syndrome, a “disorder” that DSM-IV had defined as a mild form of autism.
Like childhood bipolar disorder, the likelihood that children were diagnosed with autism, defined as a pervasive developmental disorder, had been increasing rapidly for at least a decade, without convincing evidence about whether this was due to increasing incidence, better surveillance by clinicians, or the overuse of DSM’s broadened definition of autism (Carey, 2012d; New York Times Editorial, 2012; Steinberg, 2012; Zarembo, 2011). The DSM-5 task force proposed that the definition of autism be narrowed (DSM Task Force, 2012) to avoid defining socially awkward children (i.e., shy, timid, or having trouble relating to peers) as autistic. This proposal provoked a public battle that played out in blogs and newspapers across the country (e.g., Nugent, 2012), pitting those questioning why social awkwardness, whatever its disadvantages, should be considered as a serious mental disorder against those concerned that more restricted boundaries of autism would disqualify some children for state-funded education and support. This controversy highlighted that defining any behaviors as symptoms of a mental disorder provides a medical rationale for providing services. Drawing the arbitrary boundaries for mental disorders controls the allocation of billions of dollars in health, educational, and social services (Carey, 2012b).
As mentioned above, another controversy emerged about the diagnosis of depression. In prior editions of DSM, the criteria for Major Depressive Episode (APA, 1994, p. 323) acknowledged that “symptoms” of depression could result from the loss of a loved one but that normal sadness should not be viewed as a mental disorder. Excluding normal bereavement from mental disorders was a rare acknowledgment by the developers of the manual that the social context of behaviors should be taken into account. The new DSM-5 proposal, however, eliminated the bereavement exclusion and thus would allow normal grief to be considered a mental disorder.
The media and the experts immediately challenged this proposal (Carey, 2012a; Frances, 2010c), suggesting that the APA appeared to be pathologizing normal sadness following the death of a loved one. The controversy was furthered by a detailed analysis of the empirical evidence (Wakefield & First, 2012), which showed that the DSM-5 proposal was based on faulty and misinterpreted data and rested on no convincing scientific evidence.
Such concerns about the DSM-5 proposals came not just from a few newspaper columnists, concerned families, or psychiatric experts, nor did they include only a few controversial categories. Mental health professional organizations began questioning the entire medical orientation of the DSM. For example, the Society for Humanistic Psychology (2012) of the American Psychological Association circulated a ten-page detailed critique and petition online against the DSM-5. The American Counseling Association (2012) publicized its own concerns. The British Psychological Society distributed a detailed document questioning the “medicalization of . . . natural and normal responses” of people, “which do not reflect illnesses so much as normal individual variations.” Their response continues:
The putative diagnoses presented in DSM-V are clearly based largely on social norms, with “symptoms” that all rely on subjective judgments, with little confirmatory physical “signs” or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations. . . . diagnoses are plagued by problems of reliability, validity, prognostic value, and co-morbidity. (British Psychological Society, 2011, p. 2)
Even the prestigious medical journal Lancet joined the fray, publishing an (anonymous) editorial calling the medicalization of grief in the forthcoming DSM-5 “not only dangerously simplistic, but also flawed” (Lancet, 2012).
Among the whirl of criticism, few voices were as persistent or public as that of Allen Frances, the former leader of the DSM-IV. Nor could other critics match his “insider” status. Frances first began writing regular blogs appearing in the online Psychiatric Times (available at www.psychiatrytimes.com) and another series entitled “DSM5 in Distress” for Psychology Today (available at www.psychologytoday.com). In dozens of blog posts, he relentlessly criticized the DSM-5 task force, dozens of proposals for changes in the manual, and the APA for ignoring or mishandling the rising chorus of public and expert criticisms. In March 2012, he wrote:
In fact, my criticisms of DSM-5 arise precisely from its obvious failure to be an impartial, meticulous, and consensus academic endeavor. DSM-5 has suffered from a fatal combination of excessive ambition, sloppy method, and closed process. It fully deserves the concerted opposition it has generated from 47 professional organizations, the world press, the Society of Biological Psychiatry, The Lancet, and the general public. (Frances, 2012a)
Even long-forgotten scientific issues stimulated new conflicts. After thirty years of neglect since the publication of DSM-III, the DSM-5 task force created an unexpected controversy over the reliability of diagnoses. The DSM-5 designers had decided to conduct field trials that would include tests of the reliability of the proposed diagnoses. As these trials were nearing completion, but before any results were reported publicly, the co-chairs and other members of the DSM-5 task force published a commentary in the January 2012 issue of American Journal of Psychiatry (AJP), lowering the expectations for “acceptable” levels of reliability (Kraemer, Kupfer, Clarke, Narrow, & Regier, 2012). As we described in chapter 4 (table 4-1), the standards previously promulgated for interpreting studies of reliability were that “good” reliability was achieved with kappa scores above 0.70; “no better than fair” for scores around 0.50; and “poor” for scores around 0.40 and less. For DSM-5, however, Kraemer et al (2012) now suggested that scores of 0.80 “would be almost miraculous”; between 0.60 and 0.80 “would be cause for celebration”; between 0.40 and 0.60 would be a “realistic goal”; while “between 0.20 and 0.40 would be acceptable” (p. 14). With this type of grade inflation, “poor” scores disappear. This effort to significantly lower expectations—presented as dispassionate technical analysis—did not go unnoticed. In a letter to the editor in AJP, Robert Spitzer and associates questioned depicting kappas around 0.4 as “the standards of what is acceptable reliability in medicine” (Spitzer, Williams, & Endicott, 2012). They concluded: “Calling for psychiatry to accept kappa values that are characterized as unreliable in other fields of medicine is taking a step backward” (p. 537).
Allen Frances reminded Psychiatric Times readers that the chair of the DSM-5 task force, responding to those who worried that final decisions about diagnoses had already been made prior to the field trials, had reassured them that the early draft of the manual contained proposals that wouldn’t necessarily “end up in the DSM-5. If they don’t achieve a level of reliability, clinician acceptability, and utility, it’s unlikely they’ll go forward” (Frances, 2012c). Similarly, the head of the DSM-5 oversight committee stated in an interview in 2010, “It’s going to be based on the work of the field trials—based on the assessment and analysis of them. I don’t think anyone is going to say we’ve got to go forward if we get crappy results” (as quoted by Frances, 2012b). Apparently, in the continuing mad science of diagnostic reliability, one approach to avoiding “crappy results” is simply to redefine them as acceptable results.
In May 2012 at the APA annual meeting in Philadelphia, the DSM-5 task force unveiled some preliminary reliability findings from the field trials. With the announced lowering of standards as the prelude, it shouldn’t have surprised observers that the findings, appearing to be “crappy,” were now defined as “acceptable.” Medscape Medical News called them “mixed,” and Darrel Regier, the task force co-chair, offered various explanations for disappointing results (Brauser, 2012). For example, in the limited data released,2 only a single category reached the standards applied to DSM-II and DSM-III (“good” kappas were at or above 0.70): Major Neurocognitive Disorder (for organic mental disorder), with a kappa of 0.78. The other results were as follows:
Adults Diagnoses
| Schizophrenia | 0.46 |
| Schizoaffective | 0.50 |
| Bipolar I Disorder | 0.54 |
| Major Depressive Disorder | 0.32 |
| General Anxiety Disorder | 0.20 |
| PTSD | 0.67 |
| Alcohol Use Disorder | 0.40 |
| Borderline Personality Disorder | 0.55 |
| Antisocial Personality Disorder | 0.22 |
| Obsessive-Compulsive | |
| Personality Disorder | 0.31 |
Children and Adolescence Diagnoses
| Autism Spectrum Disorder | 0.69 |
| ADHD | 0.61 |
| Oppositional Defiant Disorder | 0.41 |
| Conduct Disorder | 0.48 |
| Disruptive Mood Disorder | 0.50 |
| Major Depression Disorder | 0.29 |
What is readily apparent from this partial peek at the initial data is that the DSM-5 task force had nothing to cheer about. Conducting a few limited studies usually provides a scientific patina to the development of new editions of DSM, but in this case the results undercut the efforts. Forty years after the invention of descriptive diagnosis, with the major objective to greatly improve reliability, the DSM-5 field trial results, no matter how they were spinned, showed that there was no general trend toward higher reliability over the 1980 DSM-III. In addition, with some high-profile diagnostic categories, there were worrisome findings. Schizophrenia, Schizoaffective, and Bipolar disorders for adults—the bedrock diagnoses of psychosis—were between 0.46 and 0.54, which would have placed them in the lower range of major diagnostic classes in the DSM-III field trials (see table 4-3). Major Depressive Disorder and General Anxiety Disorder presented enormous scientific and political problems, with kappas of 0.32 and 0.20, a range that by every past standard would easily be classified as unacceptable or poor, raising the problem of how to justify even including these diagnostic categories in DSM. The task force is hardly likely to abandon these diagnoses, regardless of their unstable scientific grounding. They constitute two of the most prevalent diagnoses made (Kessler et al., 2005) and provide an enormous population target for the marketing of psychiatric drugs. Despite the earlier struggles to alter and improve the diagnosis of personality disorders, their reliability was dismal, lower than the DSM-III field trials (see table 4-3). Similarly, the children’s disorders saw no improvement over the middling levels of DSM-III (see table 4-4).
The release of information about the field trials at the annual convention and the growing concerns and protests over the direction of DSM-5 was reflected in generally negative media coverage (Jabr, 2012; Urbina, 2012). The prior week, the Washington Post ran an op-ed by Paula Caplan: “Psychiatry’s bible, the DSM, is doing more harm than good” (Caplan, 2012), and Allen Frances’s op-ed in the New York Times on May 12, 2012, blasted the DSM-5 and proposed that the APA “should no longer be permitted to call all the shots” and that ownership of the DSM needs to be lodged in an independent, scientific organization, such as the Department of Health and Human Services or the World Health Organization (Frances, 2012b).
In the face of widespread criticism, the task force, “in a rare step,” according to the New York Times (Carey, 2012c), backed away from several controversial proposals that they vigorously championed for several years. Frances blogged on Psychology Today, “Wonderful news: DSM 5 finally begins its belated and necessary retreat” (Frances, 2012d). Although Frances was encouraged, he listed a dozen other proposals that he thought had serious flaws. The APA had backed away from a new “psychosis risk” disorder, tweaked slightly major depression in response to concerns that it was pathologizing normal sadness, and nixed a new “mixed anxiety depressive disorder.” But it held firm to the narrowing of its definition of autism and to much of the rest of its proposals. Whether there will be other proposals withdrawn or significantly modified by the task force is unclear as this is written. In May 2012 the task force gave the public only several more weeks to review the hundreds of changes to the manual, perhaps the last public exposure to DSM-5 until it is publicly released at the APA annual meeting in May 2013. David Kupfer, the co-chair, invited “patients and their loved ones, professionals, and the general public . . . to review the proposed changes, and let us know their thoughts” (Kupfer, 2012). There is no reason to assume that the controversies will cease during the final year, nor that the APA will conduct new field trials on all or any of the recently altered diagnostic categories, because it would again delay publication.
What is most striking about all the controversies over DSM-5 and all its prior editions is that the conflicts are not really about science or empirical evidence about the reliability of psychiatric diagnoses. The evidence suggests that reliability has worsened over time, undermining the validity of the classification system. In a truly scientific endeavor, this would send the DSM-5 task force back to the drawing board. True science does not require publication deadlines, press releases, public relations specialists, reviews by the public nor by patients or their loved ones. Science stands or falls on the empirical outcome of rigorous tests of claims, regardless of popular opinion.
On the other hand, proposals in a democracy to fundamentally alter social and economic policy do require such public scrutiny, precisely because the decisions are rooted deeply in social values that may be informed by science but cannot be decided by scientific evidence. For example, revising the United States tax code can only be accomplished in a process that involves many strong institutional stakeholders concerned primarily with their own self-interests and their own social values. In such a process, controversy, conflict, distortions, and public relations campaigns are unavoidable.
DSM is like a tax code masquerading as a scientific classification system. Contending psychiatric factions and opinion leaders argue over specific criteria for substance, mood, anxiety, or personality disorders, as if through debate or field trials they can “get it right,” can truly “discover” the true nature of medical disease categories of mental illness. The various criteria being debated are largely meaningless. This is because, as we have argued, the existence of a disease of mental illness has never been established or satisfactorily defined, so on what basis can anyone “scientifically” judge the validity of one classification of an illusion against a slightly revised one? The self interests of the psychiatric stakeholders—the APA, mental health professions, clients, insurance companies, pharmaceutical industries, and government—will inevitably determine the decisions that are made, as would be the case in any major tax code revision. Madness, whatever its nature and whatever its social uses, resides deeply in human distress and in our social norms and values. The current squabbles about DSM are largely scientifically meaningless, although they are certainly meaningful in terms of the threats to the dominance of American psychiatry in controlling the business of mental illness.
We have documented in detail the controversies over the revision of DSM-5 because they are more visible than the diagnostic controversies of the past, although the dynamics are similar. The Internet, of course, has magnified that visibility, making it easier to see how the leaders of the latest DSM revision maneuver through a political minefield of contending parties while steadfastly claiming that they are being driven by “scientific evidence.” And, similar to prior revisions, it remains unclear what exactly the evidence is or how it is connected to any of the task force’s decisions. DSM is more than a classification system of purported disease; it is also an expression of professional power within American psychiatry and the pharmaceutical industry, as both seek relentlessly to expand the reach of the manual among the US population as a target of medical intervention.
DSM provides a method of identifying presumed afflictions, as the APA, pharmaceuticals, and NIMH expand surveillance of the population, screening children in schools and enlisting general medical practitioners to be on the lookout for mental troubles among children and adults. Psychiatric experts are expected to find hidden diseases in people harboring mental illnesses by noting signs that often consist of common expressions of emotions and behaviors. These experts claim to act in the best interests of the community and the person in need, although in some cases the remedies they offer may involve considerable harm.
Part of DSM’s success can be attributed to the willingness of the public, disordered and non-disordered alike, to accept this psychiatric reframing of what is the matter and when intervention is needed. It seems clear that the public has generally accepted the medicalization of many problems in living. Part of this undoubtedly started with the popularization of psychology in American society, which communicated an essentially hopeful message. The language of psychology encourages the public to view myriad personal troubles as normal events in the struggles of living, not—as in former times—as signs of immorality, failure, or personal weakness. Self-help and self-improvement books encourage people to be optimistic that life is malleable and that things can be improved. The public is told that they are not prisoners of fate, that although human travail and anguish have many sources—poverty, bad parenting, troubled childhoods, and the common stresses of life—people can overcome adversity and improve their circumstances. This view accepts human pain and struggle as inevitable but within the abilities of people, perhaps with assistance, to overcome. Human agency is emphasized.
Psychiatry’s discourse of brain disorder is rapidly supplanting the psychological perspective, though the conquest is not yet complete. The discourse of disease removes normal troubles from an arena in which the individual can overcome personal problems with encouragement, support, education, and discipline. In its place, human troubles are sequestered in an arena of disease, pathology, and medical prescriptions. The NIMH, the APA, and the pharmaceutical companies, using the modern DSM, have forcefully promoted the view that even mild forms of discomfort, anxiety, sadness, and misbehavior should be redefined as illness or impending disease, and those with difficulties should ask their doctors for the medication that “is right for you,” before their “condition” deteriorates and they become targets of coercive intervention. Human agency has shrunk to require only that the individual seek professional help, as directed by state and other agencies working in tandem with psychiatric organizations. The doctor will take responsibility from there. Capitalizing on the high prestige of medical science and on people’s obvious and natural desire to lessen pain and disability, psychiatry encourages the fantasy that human anguish is a disease that can be effectively treated.
The DSM facilitates this ideological maneuver with a novel method of counting troublesome behaviors and converting them into treatable pathology. With the development, recycling, and marketing of psychoactive medications (see chapters 6 and 7), descriptive diagnosis has melded parallel systems of beliefs for physical and mental illnesses. Without definitively identifying the existence of its putative brain disorders or understanding their presumed causes, the DSM provides the illusion that the diagnostic criteria validly distinguish pathology from normality. And many people, including mental health professionals, unable or unwilling to exercise their critical faculties, mistake the illusion for reality. In addition to how psychiatry and DSM shaped popular views of life’s struggles and the role of human agency, the DSM has distorted other realms of activity.
Ironically, one of the early criticisms of DSM was that it was designed as a research, not a clinical, tool. In fact, the DSM became a prominent clinical tool for financing care and marketing medications, but its scientific weaknesses, as we have seen, have distorted and undermined research.
The DSM’s diagnostic criteria have shaped psychiatric research for thirty years, but, because of its unreliability and thus its indeterminable validity, DSM has undermined the integrity of the studies it has spawned. Having valid categories of disorder matters fundamentally in epidemiological research, for example, which must sort people consistently into categories (i.e., the disordered versus the non-disordered) on which predictions and other scientific or practical efforts will rest. If the diagnostic criteria do not or, as we have argued, cannot validly identify who is disordered, epidemiological research based on them is largely meaningless, except as a sociopolitical tool for psychiatric expansionism (Horwitz & Wakefield, 2007; Whitaker, 2010).
Other forms of research are also impaired when they rely on DSM. For example, in research that compares the effectiveness of different forms of treatments, often using complex designs called randomized clinical trials, patients must be carefully selected with similar problems and then randomly assigned to different treatment or control groups. Following several weeks or months of treatment, patients are assessed to see how they are functioning and whether those receiving different treatments had different outcomes. If their diagnoses are unreliable or invalid, the patients selected for the study would be too heterogeneous in general and in their responses to the same treatment, undermining the conclusions that the researchers may reach. There is emerging evidence that this, in fact, has happened.
For example, several years before the official launch of the DSM-5 task force, the APA and NIMH commissioned six white papers to stimulate research and planning for the upcoming edition to “fundamentally alter the limited classification paradigm [DSM-IV] now in use” and to “. . . search for new approaches to an understanding of the etiological and pathophysiological mechanism . . . to improve the validity of our diagnoses” (Kupfer, First, & Regier, 2002). These quotes are from the opening of the introductory paragraph of the volume containing the white papers and written by two of the psychiatrists who would eventually be selected to co-chair the DSM-5 task force. Why would they suggest the need to fundamentally alter DSM, search for new approaches, or improve validity, unless, after thirty years of monumental commercial success and dominance, the current DSM is, after all, fundamentally flawed and based on a defective approach that has limited validity?
In fact, the opening chapters of their book, A Research Agenda for DSM-V, Kupfer and his associates (2002) admit that research has not been able to document the validity of the DSM classification system (Kupfer et al., 2002). They note the following: that research has not discovered common etiologies for the major DSM disorder categories; that not one laboratory marker has been discovered for any DSM-defined syndrome; that studies have found disorder categories overlap, undermining the belief that these disorders have distinct causes; that there are high degrees of short-term instability for many disorders; that there is lack of specific treatments: the same treatment, drugs, or psychotherapy are used for many supposedly different disorders; and that even studies of twins have contradicted the DSM assumption that different disorders have different underlying genetic bases.3 All of these findings suggest that the DSM classification system is of questionable validity.
No modern (or older) edition of DSM has produced scientific breakthroughs. Kupfer et al. (2002) conclude that “researchers’ slavish adoption of DSM-IV definitions may have hindered research in the etiology of mental disorders,” and that “research exclusively focused on refining the DSM-defined syndromes may never be successful in uncovering their underlying etiologies.” They argue that the reification of DSM entities “is more likely to obscure than to elucidate research findings” (pages xviii–xix). More recently, in attempts to gain leverage to make dramatic changes, the developers of DSM-5 continue to attack the validity of prior editions of DSM (Regier et al., 2009; Schatzberg et al., 2009). They argue that because of fundamental validity problems, DSM has hindered psychiatric research. With so much concern about the validity of DSM, even those at the center of the DSM enterprise appear to admit that they don’t know what the DSM-defined disorders really are. Unfortunately, however, they want the public to believe that they can solve these problems by tinkering yet again with the diagnostic criteria. Can they really believe this? These scholars read and understand the same literature that the authors of this book read and understand. In our view, the most plausible reason for more tinkering with DSM categories is that psychiatry must go on.
The psychiatric research enterprise is not the only institutional investor to be misled by a false sense of diagnostic accuracy. With the wholesale adoption of DSM by hospitals, clinics, and private and government insurance programs, inaccurate and invalid psychiatric diagnoses have been indelibly written into the medical records of millions of children and adults who seek help with all manner of human troubles, many of which neither the clinicians nor the clients themselves view as mental illnesses. Nonetheless, because medical insurance coverage requires that a diagnosed physical or mental disease is being treated, primary care physicians, psychiatrists, and other mental health professionals routinely scan the DSM looking for a diagnosis that can be used for reimbursement (Braun & Cox, 2005; Greenberg, 2010; Kirk & Kutchins, 1988; Rost et al., 1994). Regardless of the validity of the diagnosis, clinicians are paid to provide services to these clients. Clinicians, clinics, hospitals, and clients may accrue some benefits, but the residue of false and misleading psychiatric diagnoses distort the medical records of many whose only distinguishing feature was to have requested assistance from a service or professional who formally diagnosed them, which can easily cause future legal and employment problems. Moreover, the practice of deliberate misdiagnosis raises ethical issues for the mental health professionals who use questionable diagnoses to gain reimbursement for services.
The harms of surveillance and misleading diagnoses extend far beyond psychiatry. Much disagreement exists in the medical community about the costs and benefits of mammograms to detect breast cancer in women and the PSA blood test to detect prostate cancer for men. The diagnostic tests are not definitive; very few of those screened will enjoy any benefit, and many of those screened will be subjected to medical procedures that are worrisome, costly, and probably unwarranted (Aschwanden, 2011; Woolston, 2011).
In psychiatry the problems are probably more severe, because the diagnostic gamesmanship that is common to many clinicians and clinics is totally unnecessary to provide help for people who actually need it. Psychiatric diagnosis is, in fact, not needed in order to help the vast majority of those currently labeled as mentally disordered. A former president of the APA was asked in a recent interview how he used DSM. He said that his secretary had just asked him for the diagnosis of a patient he’s been seeing in treatment for several months in order for her to send a bill to the insurance company. He “hadn’t really formulated it,” but scanned DSM and suggested that the patient had obsessive-compulsive disorder.
Interviewer: “Did it change the way you treated her?”
Psychiatrist: “No.”
Interviewer: “So what would you say was the value of the diagnosis?”
Psychiatrist: “I got paid.” (Greenberg, 2011)
A case for requiring a psychiatric diagnosis for the receipt of services would only be legitimate if an identifiable medical problem existed, the diagnosis pointed to a specific underlying “pathology” causing the “symptoms,” and if without knowing the diagnosis, clinicians might provide harmful, less effective help for the person. None of these conditions is true for the vast majority of people who seek assistance for problems in living from clinical psychologists, social workers, marriage and family counselors, psychiatrists, or others. DSM diagnoses describe behaviors unconnected to any known biological causes or medical conditions; the treatments used on those diagnosed with mental disorders are nonspecific to the diagnosis (including the uses of psychoactive drugs, as discussed in the next chapters); and clinicians provide similar services and interventions across diagnostic categories, from bipolar disorder to mood, anxiety, and personality disorders. In fact, the placebo effect may rank as the most generally effective treatment in psychiatry and certainly the one with the fewest and least harmful side effects (Fournier et al., 2010; Greenberg, 2010).
Moreover, providing help to children, adults, and families who may be troubled generally consists of offering support, advice, clarifying emotions and thoughts, exploring options, and linking the person to other supports and helping resources. Clinicians have known for decades that the natural ingredients of helping come from providing a tolerant and safe environment, conveying a sense of respect and trust, and offering assistance in a manner that is warm, nonjudgmental, and empathic. A DSM diagnosis is largely irrelevant to the helping relationship.
Counseling and psychotherapy do not require a specific diagnosis, are not improved by a specific diagnosis, and are not made more effective by a specific diagnosis. The helping relationship is certainly enhanced when clinicians develop a broad understanding of the person’s life space, family, friends and social ties, struggles, pain, and failures, and of sources of strength and resiliency. This was true prior to the transformation of DSM and remains true today. In a recent study by the World Health Organization and the World Psychiatric Association (Reed, Correia, Esparza, Saxena, & Maj, 2011), an overwhelming majority of the nearly 5,000 psychiatrists from forty-four countries preferred classifications that were designed for clinical use, not research purposes, which allowed for more flexible diagnostic criteria and fewer than a hundred categories, versus the current three hundred. Whether they favor one hundred or three hundred diagnoses, these clinicians may not be critiquing the dominant disease model. However, they seem to be suggesting that DSM-type classifications add little except administrative distraction to the generic helping process. We know of no evidence showing that people diagnosed by DSM are more likely to receive effective treatment than they would otherwise receive.
Thirty years after DSM-III revolutionized American psychiatry by claiming to have solved the fundamental problem of diagnostic reliability and thus to have taken a great leap toward establishing diagnostic validity, mental health professionals still can’t reliably agree on diagnoses—or even on what constitutes a mental disorder, much less establish diagnostic validity. The rhetoric about diagnosis has never matched the actual science. The old promises of progress have remained unfulfilled, as yet more new promises are made by the architects of the forthcoming DSM-5.
The quest of biological psychiatry, adopted and aided by DSM, is to claim a brain disease for every human trouble. From Kraepelin to NIMH’s Decade of the Brain, the perennial promise is that brain diseases will be discovered. Despite decades of failure to confirm that misbehaviors and emotional turmoil are caused by disordered brains—a search floated on the massive stream of funding from the federal government and the drug industry—the effort has never lost momentum and even enthusiasm, as if the key to human misery will be discovered. The failure for the enterprise to deliver on its promises has not discouraged efforts to support it, which suggests that it is at its core a moral crusade.
A corollary illusion is that every “symptom,” every expression of anguish and anger, hurt and heartache, exuberance and despair is presumed to be linked to some unknown biochemical pathology. And while the causal links are elusive, those who are anxious, scared, sad, lonely, inept, or frustrated, can, in the meantime, occasionally find comfort in any one of a number of pharmaceutical remedies.
The APA and the pharmaceutical industry appear to be on a quest to find disease and disorder everywhere. Descriptive psychiatry has enticed the public to swallow the myth that all manner of human troubles are not the inevitable nature of the human comedy: they are expugnable illnesses. The implicit ideal of the healthy, normal, and truly happy camper is someone who, properly treated, will harbor no serious worry or animosities, no sadness over losses or failed ambitions, no disappointments with children or spouses, no doubts about themselves or conflicts with others, and certainly no strange ideas or behaviors. Children should be well-behaved, bright and attractive, and have flawless DNA. These “normal” people will only have orgasms that are perfectly controlled and properly timed and directed. Their moods will be mellow in all circumstances, and bad hair days will be a thing of the past.
Could anyone truly be swayed by these illusions, duped into believing that problems are solved when they are not? The history that we have reviewed previously and mankind’s perennial follies suggest a resounding yes. DSM has become so encrusted into the American public’s and professionals’ views of madness, into how services are arranged and financed to help people, that it has become almost impossible to think about a world without a diagnostic manual of mental disorders. But perhaps it is time to consider a radical alternative by asking some questions. Are we really well-served by a DSM that provides a dictionary of fictitious brain disorders as a guide to describe, name, understand, or cope with human adversity? Is it really necessary to place people into illness categories to provide them with humane and effective help if they need and request it?
1.Even clinicians who do not have a medical orientation, or are uninterested in making a DSM diagnosis, or even those who believe DSM diagnoses are invalid frequently end up making such diagnoses, because these clinicians and their patients operate within a biomedical industrial complex (see Gomory, Wong, Cohen, and Lacasse, 2011). See also discussion in this chapter under “Distortion of Records and Help.”
2.The initial presentation of these data took place at the annual meetings, with PowerPoint slides of the data. Neither the full data nor the methodological details have been published as this is written. Published news accounts have presented slightly different kappas, thus these initial partial results are tentative.
3.It is beyond the scope of this book to undertake a critique of genetic hypotheses of mental disorders, and especially the validity of twin studies upon which the inadequate notion of “heritability” rests and is used misleadingly and incoherently to claim that various human behaviors and actions have “genetic causes.” For this purpose, see, for example, Jay Joseph, The gene illusion.
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