For a short time in the 1990s, I helped a small company develop proposals for providing mental health services. My desk housed two standard references: the Chicago Manual of Style, and the fourth edition of the Diagnostic and Statistical Manual (DSM-IV) of the American Psychological Association (APA). The DSM is essentially a classification system, like a taxonomy, providing a structured list of the psychiatric diagnoses used by mental health practitioners.
The DSM has long been regarded as the psychiatrists’ bible, just as the Chicago Manual is still widely and highly regarded as the writers’ bible. It looks like the DSM is now going down a different path. The APA’s proposed changes for the May 2013 release of the DSM-5, which were made public two years ago, have triggered strong letters of protest from numerous experts and organizations, and even from within its own ranks. Some petitions are circulating, and an “Occupy the APA” protest demonstration is planned for this May.
As reported by Gary Greenberg (“Inside the Battle to Define Mental Illness,” Wired Magazine, January 2011), “Psychiatrists at the top of their specialties, clinicians at prominent hospitals, and even some contributors to the new edition have expressed deep reservations about it.” One of the most prominent and outspoken critics of the DSM-5 draft is Dr. Allen Frances, lead editor of the DSM-IV (he readily admits some of its errors and urges them to be corrected). Dr. Frances has fired off several open letters to the APA (see his blog) that have been published by the Psychiatric Times. Greenberg observes that “some are beginning to agree with Frances that public pressure may be the only way to derail a train that he fears will take psychiatry off a cliff”.”
Do the DSM draft’s faults, whatever they are, matter all that much? Well, as Greenberg explains, “The book is the basis of psychiatrists’ authority to pronounce upon our mental health, to command health care dollars from insurance companies for treatment and from government agencies for research. It is as important to psychiatrists as the Constitution is to the US government or the Bible is to Christians. Outside the profession, too, the DSM rules, serving as the authoritative text for psychologists, social workers, and other mental health workers; it is invoked by lawyers in arguing over the culpability of criminal defendants and by parents seeking school services for their children. If, as Frances warns, the new volume is an “absolute disaster,” it could cause a seismic shift in the way health care is practiced in this country. It could cause the APA to lose its franchise on our psychic suffering, the naming rights to our pain.”
Why all the controversy? There are numerous reasons. One root cause is that the task force responsible for revision seems to have ignored best practices for classification system construction and revision. The task force has been widely accused of 1) a closed, secretive development process; and 2) resistance to constructive criticism and external recommendations.
The closed, secretive approach has promoted distrust, especially as details of potential conflicts of interest (including contracts with pharmaceutical companies) have emerged. Revision contributors have complained that they were obliged to sign nondisclosure agreements before participating in DSM-5 draft development. Benedict Carey, in an article for The New York Times (“Psychiatrists Revise the Book of Human Troubles”), quotes DSM-III lead reviser Dr. Robert Spitzer as saying, “When I first heard about this agreement, I just went bonkers. Transparency is necessary if the document is to have credibility, and, in time, you’re going to have people complaining all over the place that they didn’t have the opportunity to challenge anything.”
Furthermore, the closed approach seems to have gone hand in hand with a resistance and lack of responsiveness to external criticism and recommendations. The draft changes have been online and open to public comment since February of 2010. However, despite the many subsequent criticisms, the committee has persisted in defending its proposed changes, even the more controversial ones.
As reported by Michelle Diament on March 28, 2012 (“DSM Committee Standing Firm on Autism Changes”), “Members of the committee tasked with updating the diagnostic criteria for autism appear to be digging in as critics worry that proposed changes will strip many of their diagnosis. In a commentary released this week, members of the American Psychiatric Association panel charged with revising the autism definition appearing in the forthcoming edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM, defended the changes they’re proposing.” Despite petitions, and despite two recent scientific reports that indicate that a large number of people who rely on various medical and other services would lose those services with the proposed changes to the DSM-5, “the committee continues to defend its proposal.”
The large potential influence on funding, diagnosis, treatment, and services is why many parents and advocates of people on the “autism spectrum” are concerned about the proposed changes, as reported by Amy Harmon in The New York Times (“A Specialists’ Debate on Autism Has Many Worried Observers”). (Note: Autism, Asperger syndrome, and other autism spectrum conditions are neurological conditions, not mental disorders, but their inclusion in DSM means that the DSM governs diagnosis, funding, etc.) Harmon quotes the DSM task force: “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder. It involves a use of treatment resources. It becomes a cost issue.” The committee’s solution was to lump all autism spectrum conditions together, subsuming autism, Asperger disorder, and “not otherwise specified” pervasive developmental disorders under the umbrella of a single diagnosis, “Autism spectrum disorder.” At the same time, they narrowed the scope of what conditions would be covered by that umbrella, forcing a narrowing of the options of clinicians and service providers.
As for the controversial disappearance of Asperger syndrome from the DSM, it’s not just about funding. Harmon quotes Michael John Carley, director of the Global and Regional Asperger Syndrome Partnership: “Having a diagnosis helps people understand why we process thoughts and emotions differently and make positive changes. Sadly, we may be heading back to the days when our differences are seen through the lens of character deficits rather than in the context of brain wiring.”
The committee justified their approach in an unusual and disturbing way on the APA’s DSM-5 website: “A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.” The perceived problem was one of blurred boundaries. Taxonomies and classification systems often present taxonomists with the dilemma of blurred boundaries. Tossing out the more specific classifications might temporarily make things easier, but it sacrifices specificity down the road. True, taxonomies and indexing must do a balancing act between specificity and sensitivity, so as to adequately cover what’s represented by the text or the situation while not being too vague about it. In the present case, though, the APA has chopped off the ends of the so-called meatloaf, at the same time that it refuses to slice it. It has sacrificed both specificity and sensitivity.
Classification systems such as the DSM are not merely tools of convenience; they can shape thinking and practice in entire professional, scholarly, and scientific areas. Therefore, the revisers have a special responsibility to users and to others who may be affected by it. They might carefully set an initial framework, but from then on they should be open to at least considering the comments and recommendations of experts and users.
Barbara Gilles, taxonomist
Access Innovations, Inc.
Taxonomy by committee is never easy. The tug between gathering what seems to be broadly representative SME groupthink and the need to finish the project is a challenge we all face.
From its beginnings under Spitzer on his own, as chronicled in an NPR piece years ago, trying to hammer the loose vocabulary of the art of psychology into the early DSM’s controlled vocabulary was a struggle, impeded by naysayers who wanted to retain their unique interpretations. In this case, there are serious consequences. Always hard, and worse when so much now depends on elusive agreement.