Where are the Social Workers?
One Social Worker’s Road to Active Opposition to the New DSM
In November, 2011, the Society for Humanistic Psychology of the American Psychological Association (APA) and the American Counseling Association (ACA) sent their infamous Open Letter to the DSM-5 Task Force (Locke, 2011). When I read it shortly after it was posted on the APA/ACA website, I found myself dismayed, then outraged, but not surprised. After all, I had read Stuart Kirk’s and Herb Kutchin’s (1992) scathing critique of the DSM-III, questioning the DSM’s legitimacy, several years earlier. Their focus was on the scientific foundations of the DSM III, viz., the construct validity of the disorders or diagnoses it purported to categorize, and its inter-rater reliability or the consensual validation of those diagnoses by clinicians in the field. Their conclusions were succinct: the DSM-III evidenced neither (see also Kirk, Gomory, & Cohen, 2013).
The APA/ACA had even broader-based concerns. The authors of that lengthy letter questioned the organization of the DSM-5’s ballyhooed field trials; the ongoing medicalization of mental illness and increasing reliance by psychiatrists on psychoactive medications; and the accompanying patholigization of human behaviors ordinarily considered normative. More fundamentally, they challenged the presumption of the DSM-5 Task Force and the American Psychiatric Association to devise a taxonomy of illness with no input from professionals from other disciplines. Accordingly, they attached a petition to their letter, signed, through July, 2013, by 15,000 mental health practitioners and other stakeholders, requesting that the Task Force suspend its operations and allow a multi-disciplinary committee to review its work and recommend changes.
The Task Force, of course, proceeded with its work as per its scheduled timetable. It did listen to some of the criticisms directed its way: it removed several new child-focused diagnoses; excluded “grieving” from consideration as a Major Depressive Disorder for a two-week period subsequent to a personal loss; extended its public commentary period by two months, inviting additional input on its Personality Disorders section (Frances, 2013a). Nonetheless, the DSM-5 essentially remained as it was – more disorders affecting more people; no consideration of construct validity, which has become a non-issue; and, as reported on the Task Force’s own website, poor inter-rater reliability. Its May, 2013, publication date proceeded as planned.
My personal response after reading the Open Letter was to sign the petition, urge colleagues to sign it and write a series of five articles which were posted on two websites — www.behavioral.net and www.madinamerica.com — over a seven-month period, November, 2011 through May, 2012. Three of those blog posts, in modified form, appear in the following three sections of this paper.
The first, “1984 Revisited: The New DSM,” (Carney, 2011) is essentially my critique of the DSMs: a review of Kirk’s and Kutchin’s evaluation of the landmark DSM-III, which was echoed by Bentall (2004); of the DSMs’ continued lack of construct validity and poor inter-rater reliability; of alternatives to the DSM and its underlying biological explanation of mental illness; and a consideration of evidence-based psychosocial treatment interventions. My Orwellian conclusion: social control and unwelcome intrusions into people’s lives were about to become commonplace.
The next, “1984 & DSM-5 Revisited: Where Are the Social Workers?,” (Carney, 2012) expresses my disappointment with the social work profession for distancing from the DSM-5 controversy. Again, I was not surprised. I’ve been a social worker for over forty years and I know my colleagues are a cautious bunch – while individual social workers might have signed the Open Letter Petition, as I did, no social work organizations, including the NASW, did. The article upbraids social workers and our professional organizations for their non-involvement and for missing an opportunity to re-assert social work as a core stakeholder in the public mental health system; to underscore our helping mission and our commitment to the psychosocial to explain and address human distress. I conclude the second article by urging social workers to join the struggle, sign the petition and press their professional organizations to do likewise.
The third, “Boycott DSM-5? Why Not?,” (Carney, 2012b) presents that action as a rejection of the new DSM and challenges Psychiatry’s hegemonic role in determining who is ill and how best to treat them. Practical issues are also discussed – potential consequences; what to use in lieu of the DSM; the need to become familiar with the ICD-10, now scheduled for issuance in the U.S. in October, 2014; as well as with Allen Frances’s new book, an alternative to the DSM published prior to the DSM-5.
This paper concludes with a two-part Afterword, the first completed in August, 2012, the second completed in July, 2013. The former contains an update of the DSM-5, i.e., what’s in and what’s out, through August, 2012, when the DSM Task Force concluded its final public commentary period, as well as access to a powerpoint presentation entitled “Where Are the Social Workers” – I seem to be preoccupied with this question. It can be used to present to social workers and other interested practitioners a summary of the key issues outlined in this paper. Whether social workers will be interested in learning what’s at stake and deciding how to respond is open to conjecture. To sum up with an often abused quote and nods to Ignatius Loyola and Cornell West, “I’m not optimistic but remain a prisoner of hope.”
By the time I wrote part two of the Afterword in July, 2013, our DSM Boycott had been up and running for more than six months and I had returned to my Alinsky roots – I had originally been trained as a “grass roots” community organizer by Warren Haggstrom, who headed Alinsky’s campaign against Kodak in Rochester in the early 1960’s. Our announced Boycott goal of curtailing sales of the DSM-5 and revenue for the APA became secondary to our systems change goal of discrediting the APA and its DSM and disrupting its salutary relationships with the entities I termed the “Big 3” – Pharma, Insurance and Government. So we sought the moral high ground, began to build a mass organization via social media and pursued every opportunity to depict the APA as a corrupt and morally bankrupt organization.
Our systems change analysis and strategies are described in detail in two articles I posted at MadInAmerica.com In February and May, 2013, with more to come this Fall.
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1984 Revisited: The New DSM (November 28, 2011)
Which of us is crazy and who isn’t and why? These are the questions that psychiatrists and the rest of us have been trying to answer since the late 18th century and the advent of moral treatment, when mad men and women were unchained and treated as human beings. One hundred years later, Emil Kraepelin actually drew a line demarcating one group from the other: on the one side, were those individuals who experienced hallucinations, delusions; were affectively dysregulated; and cognitively disorganized, i.e., had disturbed speech and attention deficits. On the other side of the line was everybody else, i.e., those whose behavior was normative.
Kraepelin went on to postulate that persons who were mad were mentally ill, were suffering from a neurophysiological pathology; that the symptoms they exhibited were attributable to or caused by the fundamental pathology, and that the pathology itself could be further sub-divided into a system of classifications or nosology. He identified three: dementia praecox, which Bleuler later re-classified as schizophrenia; manic depression, which included both bi-polar and unipolar depression; and the paranoias. Karl Jaspers, a younger contemporary, later added what amounted to the personality disorders and anxiety-related disorders.
These are the schemata under which Western psychiatry has operated ever since, with some notable exceptions largely driven by class differences among their patients. For example, here in the U.S., American psychiatrists, indeed all mental health professionals, were trained in Freudian psychoanalysis. Nonetheless, poor persons and persons of color were those most likely to be confined in large state institutions where Kraepelinian principles governed and, much like today, were rarely afforded psychotherapy as a treatment option; persons of means were largely treated in outpatient settings by therapists trained in psychodynamic approaches. All this came to an abrupt end with the publication of the DSM-III in 1980. Freud and psychoanalytic conceptions of mental disorders were out and Kraepilinian concepts – or as per Gerald Klerman’s triumphalist notion, neo-Kraepelinian – were in (Kirk & Kutchins, 1992; Kirk et al., 2013).
DSM-III had multiple objectives, some clinical, some political. Primarily, evidence was to be gathered through extensive field trials to demonstrate that mental disorders were true medical illnesses, of neuro-biological origin, best treated by medical means, i.e., psychoactive medications. The validity of the diagnoses presented – DSM-III classified 163 distinct diagnoses, up from DSM-II’s 137 (1968) and DSM-I’s 94 (1952) – i.e., their construct validity, would then no longer be open to question. Further, the inter-rater reliability, i.e., the extent to which clinicians and researchers, particularly the latter, could agree on a diagnosis, would be significantly improved. In sum, psychiatrists, having demonstrated that they treated bona fide illnesses, would unquestionably be seen as bona fide members of the medical profession, distinct and apart from all other mental health professions, and would have to be regarded as such by their peers as well as by the insurance companies that paid their fees. Their status as physicians would also guarantee them clinical deference from other mental health professionals and their statutory capacity to write prescriptions would install them as gatekeepers to the mental health system and pre-eminent collaborators of the pharmaceutical industry. In sum, psychiatrists’ leadership of the mental health system would be unchallenged.
Kirk and Kutchins (1992) and, later, Bentall (2004) wrote precise analyses of DSM-III’s shortcomings, rebutting all the foregoing claims its authors had made for it. Pointedly, Kirk and Kutchins entitled their book The Selling of DSM: The Rhetoric of Science in Psychiatry. They emphasize that construct validity is never addressed in the DSM-III; Bentall chimes in to say that it wasn’t addressed in III-R or IV, as well. The highly ballyhooed field trials show no direct connections between specific diagnosis or presumed illness, etiology, symptoms unique to that diagnosis, treatment unique to the diagnosis and prognosis or anticipated outcome. Furthermore, the attention focused on reliability obscures that fact. In short, no diagnosis has a proven construct validity, i.e., has no basis in empirical data, is, to be blunt, a construct of the authors’ collective imaginations. To compromise the DSM even more, inter-rater or –clinician reliability is barely supported by the data aggregated in the field trials.
As per Kirk and Kutchins, DSM’s authors decided to make use of the kappa statistic, a mathematical formula often utilized in social science research – e.g., anthropology, sociology – to minimize reliability occasioned by sheer chance. High reliability would be signified by a kappa score of .7. In the DSM-III reliability field trials, no Axis I or II diagnosis achieved the .7 score – the data analysis came close but never got there. The follow-up field trials for DSM-IIIR and –IV scored low in reliability particularly as regards personality disorders and disorders of childhood and adolescence. Interestingly, no alarms were raised, no protests made that the DSM authors’ claims for construct validity and reliability were never realized. Kirk and Kutchins’ explanation is that psychiatrists and other clinicians bought the rhetoric; further, the effective propaganda campaigns undertaken by the insurance and pharmaceutical industries completed the tautology — the unquestioning reliance of those industries on the DSM were proof of its reliability. Similarly, construct validity was no longer an issue because the medications, prescribed to treat biomedical illnesses, worked. Didn’t they?
When I first read Kirk and Kutchins’s and Bentall’s accounts of the DSMs, I was struck by the fact that each succeeding edition moved Kraepelin’s line demarcating the ill from the not-ill to include more of the former. DSM-III R, published in 1987, included 174 diagnoses, up from III’s 163; less than 10 years later, DSM-IV, issued in 1994, had 201 diagnoses; IV TR, 2001, had over 250 diagnoses. One of the key criticisms directed at DSM-5, published in May, 2013, three years later than its original release date, is that it has lowered the threshold for mental illness, leading to expectations that the number of newly conceptualized diagnoses will surely grow. An analysis of the DSM-5 conducted by the Society of Humanistic Psychology of the American Psychological Association and contained in an “Open Letter to the DSM-5 (Task Force),” draws attention to several diagnoses – e.g., Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder – largely aimed at children and adolescents, which, the APA contends, have little support in the clinical research literature and which undoubtedly will result in treatment with neuroleptic or other psychoactive medications.
Similarly, the APA raises concerns about the re-classification of Attention Deficit/Hyperactivity Disorder to “Neurodevelopmental Disorders,” which will now give it a clear “neurological basis”, result in the “medicalization as well as the over-diagnosis of this disorder” and the depreciation of the importance of socio-cultural factors. The “Letter” also describes the DSM-5’s rejection of the earlier DSM-III definition of “a mental disorder (as) a behavioral or psychological syndrome or pattern that is not primarily a result of social deviance or conflicts with society.” The APA’s expressed concern is that DSM-5’s proposed new definition “fails to explicitly state that deviant behavior and primary conflicts between the individual and society are not mental disorders.”
The APA summarizes its concerns as follows: that “the proposal to lower diagnostic thresholds is scientifically premature and holds numerous risks … (that) increasing the number of people who qualify for a diagnosis may lead to excessive medicalization” and increased prescription of neuroleptic medications with all their attendant risks. Unstated but implied are the beliefs voiced nearly ten years ago by Loren Mosher in the book of readings he co-edited with John Read and Richard Bentall (2004), just before he died: that psychiatry has sold its soul to Big Pharma; that neither the biomedical model in which modern psychiatry is rooted nor the nosology of mental illness publicized via its series of DSMs has an empirical basis and that environmental factors at the heart of psychotic experiences, particularly childhood abuse and resulting trauma, have been systematically ignored.
When I first read the APA’s open letter, my first thought was Orwell and 1984, his increasingly prescient novel published in 1949, over sixty years ago. He envisioned a world whose “citizens”, the 99% , would be drugged on soma, a presumed narcotic that rendered people emotionally numb and submissive to “Big Brother”, their unknowable protector who safeguarded them from an unknowable enemy. I couldn’t help thinking that this was indeed the possible endpoint that the DSM and its authors, the ivory tower researchers and psychopharmacologists, together with Big Pharma, might bring us to.
I was also reminded of Thomas Szasz (1960) and his argument that mental illnesses are myths whose function is to justify control of individuals who are a nuisance to others. As Bentall reminds us, Szazs has never considered himself as “anti-psychiatry,” but rather sees “mental illness” as an incoherent concept, with no evidence ever presented of its existence as a physical pathology. I’ve always been sympathetic to the notion that that the social welfare system, including the mental health system, function as mechanisms of social control.
Many years ago, when I was a brand new social worker working as a child welfare worker in the LA County Department of Public Social Services, in the late 1960’s, at the height of the anti-war movement, my fellow workers and I referred to ourselves as “cops in mufti.” Given the racism inherent in mental health and the wholesale discrimination directed at the system’s survivors, who are principally poor and persons of color, I can’t disagree with the notion that the mental health system exists largely to control and marginalize poor people. Just remember that, in the early 1950’s, when the DSM-I was published, psychiatry decided that homosexuality was a mental illness. Twenty years later, psychiatrists took a vote at their annual convention and decided that homosexuality was no longer a mental illness. Was new clinical evidence submitted to support that change or did the gay community simply organize and muster the political muscle to protect their rights as bona fide citizens?
So, if the psychologists are correct and the biomedical model of mental illness is to be discarded or substantially revised; if, similarly, the DSM itself is to be discarded or substantially revised as they are requesting in the “Open Letter”, what are we, both practitioners and survivors, to be left with? Well, several of my earlier blog-posts were devoted to advocating the replacement of the biomedical model with a trauma model connected in some manner, consequent to additional research, to the ACES study. Interestingly, John Read and colleagues recently reviewed studies demonstrating a clearer link between early childhood trauma and the origins of schizophrenia or severe psychosis. Specifically, from two-thirds to eighty-five percent of all women hospitalized in acute psychiatric units were found to be victims of childhood sexual and/or physical assault and/or of emotional abuse or neglect (Read, Goodman, Morrison, Ross, & Aderhold, 2004).. Surprisingly, sixty percent of all hospitalized men had been similarly victimized.
Bentall’s (2004) alternative is more systematic. He begins with what he terms the “principle of continuity,” which suggests that madness or psychosis is but one end of a continuum of human experience, with presumed normative social functioning anchoring the other. To illustrate this notion, he cites several relatively recent studies that examine key Schneiderian first-rank positive schizophrenic symptoms – or, as Bental terms them, “complaints”: hallucinations, delusions and cognitive disorganization, particularly incoherent speech. He begins with John Tien’s study (1991) wherein Tien, an American psychiatrist, reported that ten percent of 18,000 randomly selected individuals, with no psychiatric histories and drawn from disparate locales across the U.S., had experienced auditory hallucinations at least once during the course of their lifetimes.
Similar results were obtained in a study published by Jim van Os (2000) involving 7000 persons in Holland, as well as in a study published that same year of 700 persons living in Dunedin, New Zealand. Since the incidence of persons diagnosed with schizophrenia in these three countries is about 1%, it would appear that, at least in the three studies, ten times that number reported hearing voices. Bentall proceeds to cite Newman’s and Baumeister’s (1996) report that nearly four million, never-hospitalized Americans earlier in that decade had claimed to have been abducted by aliens and then returned, unharmed, to their homes. He concludes with Andreasen’s and colleagues’ article (1995) that disordered speech is more likely to be encountered in persons suffering from non-psychotic depression than in those persons diagnosed with schizophrenia.
So why weren’t any of these folks hospitalized? I guess they didn’t offend or get noticed by the right people.
As for treatment, Bentall doesn’t advocate junking the bio-psycho-social model, but does believe it needs to be re-balanced. As Read and colleagues have argued, the biological aspect of this model has “colonized” the other two, rendering them ignored and meaningless. Since no biologically-based etiology for psychosis has been established, biology and biological treatment, viz., psychoactive medications, should be assigned adjunctive roles in what the APA in its “Open Letter” terms the “psychiatric taxonomy” or system of classification. Greater prominence needs to be accorded the psycho-social nature of individuals’ symptoms or “complaints” and their psychotic experiences.
As per Bentall, research is continuing to identify hallucinations and delusions as psychological complaints, i.e., products of individuals’ minds that affect their behaviors; and their origins are to be found in individuals’ environment, i.e., the socio-cultural context in which they live. Accordingly, Bentall proposes a “complaints-oriented” treatment approach, where psychotherapists assist persons experiencing the complaints to explore them, validate/accept their existence, and learn skills necessary to cope with/manage their complaints and so live life to the fullest. As per Bentall, if the complaints are successfully treated, only the “ghosts” or faint memories of their presumed illnesses will remain and there will longer be need for diagnoses.
Specifically, he recommends two research-validated treatment interventions: cognitive-behavioral therapy and “need-adapted” family therapy. The latter, which centers around a psychosis treatment team comprised of therapists, the person experiencing the psychosis, and her/his family members, is home-based rather than hospital- or clinic-based, and is the treatment of choice used throughout Finland and other Scandinavian countries for individuals experiencing their first psychotic episode. Results over the past 40 years, when the Finns began developing this model, have been uniformly good. A two-year outcome study published in 2001 showed nearly half of study participants to be working two-years post-discharge (Seikulla, 2006). The sparing use of neuroleptics with these persons also highlights its preventative/prophylactic character. To which I would add DBT and its Group Skills Training, which I always found useful in ameliorating the painful feelings that torment its participants; and the group support provided by peer-run programs. Who else but fellow survivors will know what you’re going through and won’t judge you for it?
In the interim, what are we to do? The American Psychological Association, which has joined forces with the American Counseling Association and the British Psychological Society in requesting that the DSM-5 Task Force allow a broader review of its work to date by other mental health professionals, is correct in asserting that the bumbling performance of the Task Force presents those of us who are dismayed by the current disarray of the public mental health system in this country an unprecedented opportunity to change things — to bring psychiatry back from its delusions of grandeur and to curb the excesses of Big Pharma (e.g., Lacasse & Leo, 2006) and the insurance industry. Big targets with lots of power and money, but vulnerable because of the harm they’re doing to so many. We can begin by signing the APA/ACA petition [which is still posted and can still be signed] at http://www.ipetitions.com/petition/dsm5/. Please note that the “Open Letter to the DSM-5” is also found there and serves as both explanation of and preamble to the petition.
As of July, 2013, nearly 15,000 mental health professionals and scores of organizations have signed the petition. Even Allen Frances, chair of DSM-IV, has urged his fellow psychiatrists to sign. To quote him: “But what is the most compelling reason for signing the petition to reform DSM-5? This is easy. Our first responsibility is to DO NO HARM!!! (Caps and exclamations Allen’s not mine.) DSM-5 will do grave harm to the people who are misdiagnosed and often receive unnecessary medication …”
Frankly, I haven’t been able to locate the metropolitan NYC and national chapters of NASW or the Nurses’ Association as petition signatories. Maybe I haven’t looked hard enough, or maybe most other mental health professionals and our professional organizations, unlike our psychologist brothers and sisters, have simply accepted DSM-5 as a fait accompli. I’ve recently contacted the NYC Chapter of NASW, which is awaiting publication of this blog-post. [More about this in the Afterword.] You have to start somewhere. I invite those of you who are reading this and feel similarly compelled to do likewise. Remember … don’t mourn, organize!
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1984 & DSM-5 Revisited: Where Are the Social Workers (March 26, 2012)
Where are the social workers? Where are the NASW and its local and state-wide chapters? For that matter, where are the peer-run and -led advocacy and service organizations?
Over 12,000 individuals, mental health professionals and other stakeholders, have publicly declared their concern at the planned 2013 publication of the DSM5 [14,000, as of August, 2012; 15,000 by July, 2013]. They’ve signed the petition launched six months ago by the Society for Humanistic Psychology and the American Counseling Association requesting that the DSM5 Task Force delay finalization of the new DSM and allow a broader review of its work by professionals from disciplines other than psychiatry. Fifty-one professional organizations have also endorsed the petition … the National Association of Social Workers and its local affiliates, which represent 150,000 professional social workers, are not to be found among them.
So what’s going on with social workers? It’s almost like asking “What’s the matter with Kansas … ?” It seems like they and their professional organizations are voting against their own self-interest. Unquestioning acceptance of the DSM translates into unquestioning acceptance of the biological or medical model, which Read and colleagues have characterized as colonizing, i.e., diminishing, the psychosocial aspects of treatment — and, in the process, the relative importance of social workers (Lacasse, 2005). A 2008 article in the Archives of General Psychiatry describes the decline in the provision of office-based psychotherapy by psychiatrists, matched by a corresponding increase in psychopharmacology services – an apparent opportunity for social workers and psychologists, who comprise almost 90% of mental health professionals and provide the bulk of psychotherapy services nationwide. Offset, however, by the increasing proportion of outpatients who receive psychoactive medications without psychotherapy, as per the American Journal of Psychiatry (Druss, 2010).
Ultimately, however, most social workers, like most Kansas voters, are not motivated by self-interest but by core values and beliefs. Their acquiescence to the DSM-5 as currently composed signifies for me an abandonment of core principles – service to others; pursuit of social justice; respect for the worth of the persons being served; the importance of human relationships; and the salience of integrity and competence in social work practice (Code of Ethics @ www.socialworker.org) – and seriously undermines their fundamental mission of helping those who need it (see Lacasse, 2014).
The Open Letter which the Society for Humanistic Psychology and the American Counseling Association addressed to the American Psychiatric Association and which serves as the preface to their petition contains a pretty comprehensive review of the DSM-5 Task Force’s proposed revisions, most notorious of which include:
- lowering the threshold for mental illness, thereby increasing the likelihood of new and additional diagnoses;
- increasing the focus on children and adolescents via such novel diagnoses as Attenuated Psychosis Syndrome and Disruptive Mood Dysregulation Disorder, which appear to have little support in the clinical research literature and could well result in treatment with neuroleptic or other psychoactive medications;
- “fail[ing] to explicitly state that deviant behavior and primary conflicts between the individual and society are not mental disorders.”
- adding “grieving” that lasts for two weeks or longer to the list of criteria for Major Depressive Disorder.
To sum up the Letter’s principal concerns: “the proposal to lower diagnostic thresholds is scientifically premature and holds numerous risks … (that) increasing the number of people who qualify for a diagnosis may lead to excessive medicalization” and increased prescription of neuroleptic medications with all their attendant risks. To which I would add … “occupiers” beware, particularly when you “occupy” the APA Convention in Philadelphia on May 5 (2012); in addition — read Joanne Cacciatore’s blog-post entitled “DSM5 and Ethical Relativism” that she posted on March 1 (2012) at (http://drjoanne.blogspot.com) and that has attracted widespread attention: she’s been grieving the loss of loved ones for more than two years and is still sad. How crazy is that!
Finally, be aware that the DSM-5 Task Force will soon announce its last public commentary period – check its website @ www.dsm5.org — after which it will begin to finalize the new edition. [That public commentary period ended in mid-June, 2012.] Accordingly, if you’re a social worker dismayed with a public mental health system in disarray, alarmed at the distortions resulting from the system’s sole reliance on the biomedical model, determined to re-commit to core social work values and promote change in a system that no longer works, here’s what you need to do:
- Read the Open Letter and sign the petition … http://www.ipetitions.com/petition/dsm5/;
- E-mail the Board of Directors of NASW and ask them to endorse the petition … President@naswdc.org [still not too late to do so, as of August, 2012];
- Spread the word to your social work brothers and sisters. There’s still time to put a stop to the DSM.
- Don’t mourn, organize!!
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Boycott DSM-5? Why Not? (May 18, 2012)
Captain Boycott was the British land agent for Lord Erne of County Mayo who, in 1880, was ostracized from the local community as part of the Irish Land League’s campaign for agrarian tenants’ rights. Rather than harvest Lord Erne’s crops, his tenants let them rot in the fields, obliging the good captain to leave Ireland. Wittingly or not, he left behind his name, which was promptly applied to a protest tactic that has proved effective over the years.
I still don’t eat Iceberg lettuce or Thompson seedless grapes. And if grapes, why not the DSM?
The DSM-5 proved to be the center of conversation and contention at the American Psychiatric Association’s annual convention conducted in Philadelphia May 5 to 9. Even as the convention was concluding, a host of articles were published in the print and on-line press trumpeting the news that the DSM-5 Task Force had backed off including several proposed and controversial additions to the new DSM. Time magazine and Benedict Carey of The New York Times reported that two of the more controversial diagnoses, Attenuated Psychosis Syndrome and Mixed Anxiety Depressive Disorder, have been dropped because the field testing research undertaken by the Task Force did not provide sufficient supporting data. The “bereavement exception” to the diagnosis of Major Depression has also been re-inserted, if only as an explanatory footnote; and public commentary was re-opened on the DSM5 website until June 15 although the projected publication date of May, 2013, remained unchanged (Frances, 2013a).
Medpage Today printed a comprehensive summary of all the changes in the draft DSM-5 to date, “DSM5: What’s In, What’s Out” (Gever, 2012); and Allen Frances, the editor of DSM IV and foremost critic of the new DSM, breathed a “Sigh of relief…” in his blog on Psychology Today. “… For the first time in its history,
DSM-5 has shown some … capacity to correct itself … the first step in a systematic program of reform … before DSM-5 can become a safe and scientifically sound document” (Frances, 2012a). He topped off his comments in an op-ed published in The Times May 11: “… Psychiatric diagnosis is simply too important to be left exclusively in the hands of psychiatrists. They will also be an essential part of the mix but should no longer be permitted to call all the shots” (Frances, 2012b).
While I’m a great admirer of Dr. Frances, I don’t share his optimism regarding psychiatry’s ability to reform itself or the DSM-5 or psychiatrists’ willingness to share clinical decision-making or continued development of the DSM with other professional stakeholders. Those who have power don’t surrender it so quickly, unless under considerable duress. And I don’t believe the “public outrage” and the “uniformly negative press coverage” which Dr. Allen cites as instrumental in the APA Task Force’s modest turnaround, even if augmented, will prove sufficiently persuasive. Hence my idea for a boycott.
A recent article published in The New England Journal of Medicine (McHugh & Slavney, 2012),,“Mental Illness – Comprehensive Evaluation or Checklist?”, which expresses a point of view sharply if politely critical of the DSM5, persuaded me that a boycott might not seem so far-fetched. The authors make three fundamental observations: first, the DSM task force has failed to answer the key question about the disorders that it presumes to categorize: “What are they?” In fact, the authors contend that the APA and its DSM task forces, dating from the DSM III, have failed to answer that question. Which is a polite way of re-stating Kirk and Kutchins’s and Bentall’s contentions that the DSM’s presumed disease entities, i.e., the mental illnesses it categorizes, have no construct validity, no data to support their existence. Accordingly, the DSM and its last four editions, III through IV TR, ignore the issue of causality – what’s behind these “illnesses” – and have substituted symptoms and their categorization in its stead. These same symptoms, the authors remind us, are common to a multitude of disorders and distinguishing between them as illness-specific is further confounded by continued poor inter-rater reliability. To bypass this problem, the DSMs have reduced presumed illnesses to symptom checklists which are expedient, cost effective and serve more the interests of insurance companies and government monitors than those of clinicians and their patients. In practice, the checklists have replaced what the authors call the “bottom-up method of [assessment and] diagnosis … based on a detailed life history, painstaking examination of mental status and corroboration from third-party informants …”
The authors end with a biting admonition to psychiatrists: “ … [Only when psychiatrists address] psychiatric disorders in the same way that internists address physical disorders, explaining the clinical manifestations … by the causal processes and generative mechanisms known to provoke them … will psychiatry come of age as a medical discipline and a field guide cease to be its master work” (McHugh & Slavney, 2012, p. 1855)
Medical snobbery and one-upmanship aside, that statement tells me that psychiatry and its status within the medical profession hasn’t moved off the dime, that it’s still back where it was pre-DSM-III. As per Kirk and Kutchins (1992), one of the key motivating factors for the APA in assembling the DSM-III was to demonstrate to psychiatrists’ medical brethren that psychiatry had a solid scientific base and qualified as a medical discipline as valid as any other. The DSM-III and its subsequent iterations appeared to have secured professional legitimacy for psychiatry. Now it would seem that the brouhaha stirred by the DSM-5 has succeeded in blowing the smoke from the mirror, revealing anew the DSM’s original flaws – lack of construct validity and poor inter-rater reliability. Probably the best reason to not buy, to boycott the new DSM.
And what would be the consequences? For starters, the APA would lose a lot of money.
As Allen Frances has pointed out, the DSM, which has sold in the millions over the past thirty years, has been a “cash cow” for the APA (Frances, 2013a). More importantly, the thirty-year long momentum to label more and more individuals as mentally ill and to pathologize their behavior would be checked, even if not stopped entirely. Which would help to undermine the DSM as a tool of social control.
And what would clinicians use in its stead? Well, the DSM-IV-TR is still in circulation and could be used as a diagnostic checklist, its current principal function. Clinicians could also begin relying solely on the ICD (International Classification of Diseases) manual, which is itself a diagnostic checklist and must be used by providers, in accordance with U.S. law and international treaty, when submitting bills to CMS, the Center for Medicare & Medicaid Services, and to insurance companies. Coincidentally, the ICD-9 U.S.CM (clinical modification), which has been in use in this country for the past twenty years, was scheduled to be replaced by the ICD-10 in the Fall of next year. If you didn’t know already, the new ICD will contain 46,000 disease classifications, more than triple ICD-9’s current 14,000. Talk about bureaucracy. I guess the Feds and the insurance companies have been busy parsing every illness known to medical science. In that spirit, the DSM5, now scheduled for release in May of next year, is being designed to contain a DSM à ICD 10 crosswalk as an aid to clinicians.
In any event, Kathleen Sibelius, Secretary of Health and Human Services, the Federal agency that oversees the use of the ICD, recently announced postponement of the issuance of ICD 10 until 2014. Seems the necessary software programs are still being written. Something to look forward to! [There has also been speculation that the U.S. will bypass ICD 10 and proceed to issue ICD 11, which is scheduled to appear in 2015.]
It would be great to boycott use of the ICD as well; which would rattle the cage of the entire public mental health system; which serves to demonstrate how intertwined and intellectually bankrupt and financially fragile the whole mental health system is. A mirror image, so to speak, of our banking and financial systems. No, I would settle for a boycott of the DSM-5 to get things rolling. As I said earlier, I have no trust that continued pressure, even the threat of a boycott, would deter the APA from publishing #5.
At this point, the question I’d like answered is whether anyone reading this agrees that the idea of a DSM5 boycott has some merit. Or is it just a crazy idea that would never fly? And if any one or more of you have any ideas about how to test the waters, how to get the word out to see if other folks, particularly the clinicians, who would be most likely to purchase copies, think a boycott could be mobilized.
Let me know what you think. Remember, don’t mourn, organize! Lots of work still to be done!
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Afterword: Part I (August 23, 2012)
So what’s happened in the interim?
For starters, immediately after the American Psychiatric Association’s annual meeting ended in Philadelphia in early May, 2012, where the new DSM was the major topic of discussion, John Gever, senior editor for Medpage Today, wrote a very thorough review of DSM-5’s post-APA status. Entitled “DSM-5: What’s In, What’s Out,” (Gever, 2012). Among the newly proposed diagnoses, all of which stirred some controversy, Gever noted that “Disruptive Mood Dysregulation Disorder,” aimed at “children [over 5 years of age] showing persistent foul temper punctuated by burst of rage,” had been retained in DSM-5 despite earlier criticism deriding it “as an attempt to medicalize ‘toddler tantrums’.”
On the other hand, “Attenuated Psychosis Syndrome,” to be applied to individuals “with low-level hallucinations and thinking disturbances,” was put on hold “because it might give patients who might never go on to more severe symptoms the ‘psychotic label” [and expose them to unnecessary] antipsychotic drug therapy.” Rather than being discarded, however, it along with several other proposed diagnoses – “body integrity disorder”; “hypersexual behavior”; “skin-picking syndrome”; “persistent complicated bereavement disorder” – were relegated to DSM-5’s “Section III with the hope of attracting more research.” It would appear that the DSM-5 Task Force is thinking ahead and already laying the groundwork for the DSM’s next revision.
Gever had little to say about the “Personality Disorders” section of the new DSM, which was proving so controversial that the Task Force was obliged to extend the public commentary period to July 15. To quote from the July 7 APA press release defending the Task Force’s work, the “diagnostic criteria [for personality disorders represent] a significant reformulation … [integrating] disorder types with personality disorder traits and … levels of impairment in what is known as ‘personality functioning’.” Critics such as Allen Frances debunked this assertion, contending, as Frances (2013b) does in his new book soon to be in press, that “the DSM-5 section on personality disorders is unusable” (Frances, 2013b) (see below). Much was also made of the resignation from the Personality Disorders Committee of its last two non-American members two months earlier, who had declared “We resigned from the DSM-5 … Personality Disorder Work Group … because the Work Group … has advanced a proposal that is seriously flawed.”
Fortunately for me, I’ve been able to continue to participate as a social worker in a public discussion dominated by psychiatrists and psychologists, thanks to several initiatives taken by my local, New York City, chapter of the NASW. First, in response to my queries re. social worker inaction on the APA/ACA Open Letter petition, the Chapter leadership invited me to write an article for Currents, the Chapter’s on-line newsletter, which was published on the front page of its February edition. So far as I know, the article elicited little response from Chapter members. Next, the Chapter put me in touch with the person at NASW headquarters who had been charged with “monitoring” what was transpiring with DSM-5. She assured me that she was, that the NASW leadership was fully informed and that the NASW would maintain its “wait and see” stance. Zero for two, but still swinging.
Over the summer, the Chapter partnered with NYU’s Silver School of Social Work to co-sponsor a conference scheduled for October to discuss the new DSM and its implications for Social Work. The conference is titled “Evolution of the DSM and the Application of DSM-5 to Social Work Practice.” I’ve been invited to talk about “What changes mean for the profession,” which has been the occasion for developing the powerpoint presentation, “Where Are the Social Workers?’, which I’m offering to interested readers. (E-mail me for a copy). In it, I list my principal objections to the DSMs, which I’ve enumerated in section II of this article; remind conference participants that the public mental health system could well be entering a transitional stage, which will present social work with a unique identity to re-assert its essential role, reformulate its helping mission and champion the psychosocial as cause, consequence and solution (Gomory, Wong, Cohen & Lacasse, 2011). The presentation will conclude with the implications of my proposals for social work education and a listing of what I consider “essential readings.” While many audience participants – in the main, rank and file social workers – appeared interested, those in positions of authority – agency and program directors, were dismissive. Their concerns were centered on the changes – in computer software and billing practices – that the new DSM might occasion. Discussion with NASW NYC chapter leaders at the conference’s conclusion about follow-up actions were never resumed.
I followed the Conference’s keynoter, Dr. Jerome Wakefield, professor at the Silver School, whom I met online – how else? – at the instigation of Allen Frances. Dr. Frances, with whom I also have an online relationship – we read one another’s blog-posts – was determined to involve other professionals, particularly social workers, the single largest group of mental health practitioners in the country, in the struggle to stop or at least slow the new DSM. In addition to Dr. Wakefield, Dr. Frances introduced me to Dr. Joanne Cacciatore, an assistant professor of social work at Arizona State. Circles within circles. Dr. Frances prodded us to reach out to our social work networks, whose immediate negligible results might still have some longer term positive consequences. On a more personal level, Dr. Frances afforded me the opportunity to provide him with feedback re. the book he’s preparing for publication in the very near future, before the DSM-5 is published next May. It’s entitled The Essentials of Psychiatric Diagnosis and Coding, and it’s noteworthy, in my estimation, for its warm, welcoming tone. It will serve, as Dr. Frances intended, as an alternative to the DSM-5 that will help novice and experienced practitioners effectively engage and diagnose the persons they’re intending to help, as well as to develop a treatment plan to address the problems they uncovered. If I had my druthers, there would be no DSM and no alternative to it; but, as I indicated above, this is, at best, a time of transition, and practitioners will be besieged by the Centers for Medicare and Medicaid Services (CMS), other government agencies and insurance codes for diagnoses and codes. Dr. Francis doesn’t eschew the biomedical model; doesn’t include as key etiological factors trauma, racism or poverty; but he does emphasize the imperative for practitioners to do no harm. I have great respect for him and his endeavors.
As final reminders for readers, the APA/ACA Open Letter is still posted at http://www.ipetitions.com/petition/dsm5/ and should be read by all those who wish to inform themselves of the issues in question. It is comprehensive and clearly written and its accompany petition can still be signed by all who support the Open Letter’s message. Similarly, the DSM-5 Task Force’s website is also up and running – www.dsm5.org — and will contain periodic posts from the Task Force as the new DSM is finalized and nears publication. Finally, the struggle to change – and perhaps end – the public mental health system can only gather momentum as new actors, peer-survivors as practitioners, enter the field and the fray. Accordingly and despite DSM-5’s probable publication, don’t mourn, organize! Remember, we’re all “prisoners of hope.”
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Afterword: Part II (April 21 and July 30, 2013)
In late December, 2012, I decided to proceed and organize a boycott of the DSM-5. I recruited two individuals who were like-minded, Dr. Joanne Cacciatore, an assistant professor of Social Work at Arizona State University, and Dr. Dan Fisher, a psychiatrist and Executive Director of the National Coalition for Mental Health Recovery Cambridge, Massachusetts, and we set about organizing the Committee to Boycott the DSM-5. An account of the difficulties we experienced in launching the Boycott on February 6, 2013 is to be found in an article posted on Mad in America on February 26 and titled “The Politics of Systems Change: Lessons Learned from the Launch of the DSM-5 Boycott.” Another follow-up article, “Next Steps: More Lessons Learned From the DSM-5 Boycott,” was posted on Mad In America on May 24, four days after the official publication date of the DSM-5. Both describe, among other things, two unanticipated phenomena:
- The apparent indifference by most mental health professionals in the U.S. to the fundamental flaws uncovered in the DSM-5 and its predecessors. Less than 2000 persons have endorsed our Boycott statement in the more than three months it has been posted on our ipetitions website. (As of July 30, that number had risen to 2082.) Allen Frances has interpreted this to indicate that the “DSM-5 has a captive audience.” I prefer John Read’s earlier explanation, viz., that the biomedical model has succeeded in colonizing all others, including , so it seems, the critical thinking of most practitioners.
- The greater willingness on the part of European professionals, particularly psychologists and psychoanalysts, to refuse to purchase or use the new DSM and
to call for fundamental changes in existing public mental health systems. In part, it appears they resent what they consider the American cultural imperialism embodied in the DSM. In any event, it has taught us that opposition to the DSM is world-wide and that international collaboration is not only possible but, thanks to social media, practical.
In the end, despite our several setbacks, hope, like the Dude, abides, and our strategy to discredit the APA and the credibility of the DSM appears to have been on target.
On April 24, Dr. Thomas Insell, Director of the National Institute of Mental Health, announced that NIMH would no longer use DSM’s nosology or disease classifications in its research. Rather, NIMH will only fund investigations that utilize its own “research framework,” the “Research Domain Criteria (RDoC)”; which, wonder of wonders, is at least ten years away from being operational. To quote Insell, “… we cannot design a system based on biomarkers or cognitive performance because we lack the data … RDoC is a [research] framework for collecting the data needed for a new nosology … Not a clinical tool … a decade-long project that is just beginning…” (Insel, 2013).
The timing of Insell’s announcement could not have been worse for the APA – less than one month before the new DSM’s publication. And the rationale couldn’t have been more damning: the DSM’s continued poor construct validity – 20 years and still no biomarkers – and its worsening inter-rater reliability (see also Carney, 2013x). It’s not that NIMH was about to embark on a radically different course – it is still wedded to the biomedical model – and it would take, as per Insel’s estimate, a good ten years for its researchers to develop its own classification system. Yet, NIMH had dumped the DSM and set the stage for our next phase of action.
Come this Fall, we plan to launch our No-Diagnosis Campaign, asking practitioners committed to change to eschew the use of all DSM diagnoses with individuals who seek their services and to limit their utilization of ICD codes for billing purposes only. We will suggest as an alternative the “psychological formulation” methodology being promoted by Lucy Johnstone and colleagues in the U.K. – quite similar to the “collaborative formulation” pioneered by Paula Caplan twenty years ago, as well as to the psychosocial assessment which has historically been the bedrock of social work practice. Keep an eye peeled for the article I plan to post on MIA detailing the specifics of the campaign sometime in September and join us.
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Final Word (August 2, 2013)
One of this journal’s editors asked me to speculate as to why social workers have remained quiet about the new DSM, why they appear to have surrendered their allegiance to the psychosocial and succumbed to the biomedical.
Two thoughts on that. First, let me start with Tom Frank’s (2004) Whatever Happened to Kansas …? He theorized that Kansas voters abandoned the state’s traditional liberalism and went conservative, to the apparent detriment of their self-interest, as a consequence of their loyalty to fundamentalist religious principles. Social workers have done just the opposite, abandoning fundamental social work principles and, in the process, their commitment to change and social justice. Ironically, conservative Kansans and social workers, two presumably disparate groups, made apposite decisions by following the very same practice, i.e., by ignoring the facts. In the case of the Kansans, their self-identity was on the line and so creationism trumped evolution. Social workers, on the other hand, have surrendered who they are to a shell game promoted by hucksters who promise a magic pea, the biological origins of mental illness
Speculation #2. Ira Katznelson (2103), in Fear Itself: The New Deal and the Origins of Our Time, describes how the metaphor of “the market” has come to dominate the political as well as the economic spheres of American life, replacing bottom-up democracy and inter-group cooperation with competition between interest groups: those with the money and the power get what they want; ordinary Americans, with little of either and no large entity or institution to represent their interests, get growing income inequality and the promise of social marginalization.
American cultural and intellectual institutions have proceeded to adopt the market metaphor and its practices and now follow the money, regardless of the consequences for their constituencies or the larger society. Social work has not been immune to this phenomenology. Its leaders – academics; agency directors; policy planners — have accepted the hegemony of Psychiatry and its biomedical model with little inquiry into their validity, offering their constituency, rank-and-file social workers, no alternatives but to abandon social justice for social control and incarcerate their historical constituency, the poor and powerless, in an oppressive social welfare system. In short, following the money.
The facts are in. The biomedical model has no empirical foundation. Psychiatry is corrupt and bankrupt. The choices are clear. Remember Joe Hill’s plaintive reminder to us all as he faced a Utah firing squad — “Don’t mourn, organize!”
Author Note: Jack Carney is a private practitioner, Brooklyn, NY, and a blogger at MadInAmerica.com and SocialJusticeSolutions.org. Correspondence should be directed to email@example.com.
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