They plotted a revolution, fell to debating among themselves, and in the end overturned very little except their own expectations. But the effort itself was a valuable guide for anyone who has received a psychiatric diagnosis, or anyone who might get one.
This month, the American Psychiatric Association announced that its board of trustees had approved the fifth edition of the association’s influential diagnostic manual — the so-called bible of mental disorders — ending more than five years of sometimes acrimonious, and often very public, controversy.
The committee of doctors appointed by the psychiatric association had attempted to execute a paradigm shift, changing how mental disorders are conceived and posting its proposals online for the public to comment. And comment it did: Patient advocacy groups sounded off, objecting to proposed changes in the definitions of depression and Asperger syndrome, among other diagnoses. Outside academic researchers did, too. A few committee members quit in protest.
The final text, which won’t be fully available until publication this spring, has already gotten predictably mixed reviews. “Given the challenges in a field where objective lines are hard to draw, they did a solid job,” said Dr. Michael First, a psychiatrist at Columbia who edited a previous version of the manual and was a consultant on this one.
Others disagreed. “This is the saddest moment in my 45-year career of practicing, studying and teaching psychiatry,” wrote Dr. Allen Frances, the chairman of a previous committee who has been one of the most vocal critics, in a blog post about the new manual, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM5.
Yet many experts inside and outside the process said the final document was not radically different from the previous version, and its lessons more mundane than the rhetoric implied. The status quo is hard to budge, for one. And when changes do happen, they are not necessarily the ones that were intended.
The new manual does extend the reach of psychiatry in some areas, as many critics feared it might. Hoarding is now a mental disorder (previously it was considered a symptom of obsessive-compulsive behavior). “Premenstrual dysphoric disorder,” a severe form of premenstrual syndrome, is also new (it was previously in the appendix).
And binge-eating disorder (also formerly in the appendix), a kind of severe, highly distressing gluttony, is now a full-blown diagnosis. This one by itself could tag millions of people considered healthy, if often overindulgent, with a psychiatric label, some experts said.
But the deeper story is one of compromise. It is most evident in how the committee handled three of the thorniest diagnoses in psychiatry: autism, depression and pediatric bipolar disorder.
The group working on depression declared early on that it wanted to eliminate the so-called bereavement exclusion, which stated that grieving the loss of a loved one should not be considered a clinical disorder, though it shares many of the same outward signs. Grief has always been a normal reaction to death, not a kind of depression.
Advocacy and support groups, such as those representing people who have lost a child, objected furiously to the idea that the bereaved might be given a diagnosis of depression.
“This was just astonishing, that they would eliminate the exclusion, and a distortion of the research on the subject,” said Jerome Wakefield, a professor of social work and psychiatry at New York University, who did not work on the manual.
In the end the committee cut a deal. It eliminated the grief exclusion but added a note in the text, reminding doctors that any significant loss — of a job, a relationship, a home — could cause depressive symptoms and should be carefully investigated.
“It’s like they took it all back,” Dr. Wakefield said. “I don’t like the way it was done — in a footnote — but it’s there.”
The debate over autism was even more furious, and it resulted in a similar rapprochement.
From the outset, the committee intended to tighten the definition of autism and simplify it, eliminating related labels like Asperger syndrome and “pervasive developmental disorder not otherwise specified,” or PDD-NOS. The rate of diagnosis of such conditions has exploded over the past decade, in part due to the vagueness of the definitions, and the committee wanted to draw clearer boundaries.
It proposed a single “autism spectrum disorder” category, with stricter requirements.
Some outside researchers raised concerns. In January one of them, Dr. Fred Volkmar of the Yale School of Medicine, who had quit the committee in protest, presented research suggesting that 45 percent or more of people who currently had an autism or related diagnosis would not have one under the proposed revision.
Autism groups reacted immediately, fearing that the change in the diagnosis would deny services to children and families who need them.
The committee countered with its own study, suggesting that the new definition would exclude about 10 percent of people currently with a diagnosis. And again, the experts took a half step back.
The new, streamlined definition was approved, but with language that took into account a person’s diagnostic history. “It’s explicit that anyone who’s had an Asperger’s or autism or PDD-NOS diagnosis before is now included,” said Catherine Lord, a committee member who worked on the new definition and who is director of the Center for Autism and the Developing Brain in New York. “Essentially everyone gets in.”
Pediatric bipolar disorder posed a different challenge.
In the 1990s and 2000s, psychiatrists began giving aggressive, explosive children a diagnosis of bipolar disorder in increasing numbers. The trend appalled many patient advocates and doctors.
Bipolar disorder, which is characterized by episodes of depression and mania, had previously been an adult problem; now the diagnosis is given to children as young as 2 — along with powerful psychiatric drugs and tranquilizers that also cause rapid weight gain. The committee wanted to stop the trend in its tracks, said experts who were involved.
Most of the children treated for bipolar disorder did not have it, recent research found. The committee settled on an alternative label: “disruptive mood dysregulation disorder,” or D.M.D.D., which describes extreme hostility and outbursts beyond normal tantrums.
“They essentially wanted to have some place for these kids, and D.M.D.D. was all they had in their kit,” said Dr. Gabrielle Carlson, a child psychiatrist at Stony Brook University Medical Center, who provided some outside consultation. “These are mostly kids who have A.D.H.D. or what we would call oppositional defiant disorder, but with this explosive feature. They need help; you can’t wait forever. The question was what to call it, without pretending we know enough to saddle them with a lifelong diagnosis” like bipolar disorder.
D.M.D.D. has its own problems, as many experts were quick to point out. It could be a symptom of an underlying condition, as Dr. Carlson argues. It could “medicalize” frequent temper tantrums. It’s brand new, and no one knows how it will play out in practice.
But it is now in the book — because it was the best solution available, experts inside and outside of the revision process said.
From beginning to end, many experts said, the process of defining psychiatric diagnoses is very much like finding the right one for an individual: it’s a process of negotiation, in many cases.
“That’s one of the take-aways from all this, and I think it’s a good one,” Dr. Carlson said. “A diagnosis is a hypothesis. It’s a start, and you have to start somewhere. But that’s all it is.”
One of the committee’s most ambitious proposals was perhaps the least noticed: a commitment to update the book continually, when there’s good reason to, rather than once every decade or so in a giant heave. That was approved without much fanfare.
A version of this article appeared in print on December 11, 2012, on page D1 of the New York edition with the headline: A Tense Compromise On Defining Disorders.
Allen J. Frances, M.D. said:
This is the saddest moment in my 45 year career of studying, practicing, and teaching psychiatry. The Board of Trustees of the American Psychiatric Association has given its final approval to a deeply flawed DSM 5 containing many changes that seem clearly unsafe and scientifically unsound. My best advice to clinicians, to the press, and to the general public – be skeptical and don’t follow DSM 5 blindly down a road likely to lead to massive over-diagnosis and harmful over-medication. Just ignore the ten changes that make no sense.
Brief background. DSM 5 got off to a bad start and was never able to establish sure footing. Its leaders initially articulated a premature and unrealizable goal- to produce a paradigm shift in psychiatry. Excessive ambition combined with disorganized execution led inevitably to many ill conceived and risky proposals.
These were vigorously opposed. More than fifty mental health professional associations petitioned for an outside review of DSM 5 to provide an independent judgment of its supporting evidence and to evaluate the balance between its risks and benefits. Professional journals, the press, and the public also weighed in- expressing widespread astonishment about decisions that sometimes seemed not only to lack scientific support but also to defy common sense.
DSM 5 has neither been able to self correct nor willing to heed the advice of outsiders. It has instead created a mostly closed shop- circling the wagons and deaf to the repeated and widespread warnings that it would lead to massive misdiagnosis. Fortunately, some of its most egregiously risky and unsupportable proposals were eventually dropped under great external pressure (most notably ‘psychosis risk’, mixed anxiety/depression, internet and sex addiction, rape as a mental disorder, ‘hebephilia’, cumbersome personality ratings, and sharply lowered thresholds for many existing disorders). But APA stubbornly refused to sponsor any independent review and has given final approval to the ten reckless and untested ideas that are summarized below.
The history of psychiatry is littered with fad diagnoses that in retrospect did far more harm than good. Yesterday’s APA approval makes it likely that DSM 5 will start a half or dozen or more new fads which will be detrimental to the misdiagnosed individuals and costly to our society.
The motives of the people working on DSM 5 have often been questioned. They have been accused of having a financial conflict of interest because some have (minimal) drug company ties and also because so many of the DSM 5 changes will enhance Pharma profits by adding to our already existing societal overdose of carelessly prescribed psychiatric medicine. But I know the people working on DSM 5 and know this charge to be both unfair and untrue. Indeed, they have made some very bad decisions, but they did so with pure hearts and not because they wanted to help the drug companies. Their’s is an intellectual, not financial, conflict of interest that results from the natural tendency of highly specialized experts to over value their pet ideas, to want to expand their own areas of research interest, and to be oblivious to the distortions that occur in translating DSM 5 to real life clinical practice (particularly in primary care where 80% of psychiatric drugs are prescribed).
The APA’s deep dependence on the publishing profits generated by the DSM 5 business enterprise creates a far less pure motivation. There is an inherent and influential conflict of interest between the DSM 5 public trust and DSM 5 as a best seller. When its deadlines were consistently missed due to poor planning and disorganized implementation, APA chose quietly to cancel the DSM 5 field testing step that was meant to provide it with a badly needed opportunity for quality control. The current draft has been approved and is now being rushed prematurely to press with incomplete field testing for one reason only- so that DSM 5 publishing profits can fill the big hole in APA’s projected budget and return dividends on the exorbitant cost of 25 million dollars that has been charged to DSM 5 preparation.
This is no way to prepare or to approve a diagnostic system. Psychiatric diagnosis has become too important in selecting treatments, determining eligibility for benefits and services, allocating resources, guiding legal judgments, creating stigma, and influencing personal expectations to be left in the hands of an APA that has proven itself incapable of producing a safe, sound, and widely accepted manual.
New diagnoses in psychiatry are more dangerous than new drugs because they influence whether or not millions of people are placed on drugs- often by primary care doctors after brief visits. Before their introduction, new diagnoses deserve the same level of attention to safety that we devote to new drugs. APA is not competent to do this.
So, here is my list of DSM 5’s ten most potentially harmful changes. I would suggest that clinicians not follow these at all (or, at the very least, use them with extreme caution and attention to their risks); that potential patients be deeply skeptical, especially if the proposed diagnosis is being used as a rationale for prescribing medication for you or for your child; and that payers question whether some of these are suitable for reimbursement. My goal is to minimize the harm that may otherwise be done by unnecessary obedience to unwise and arbitrary DSM 5 decisions.
1) Disruptive Mood Dysregulation Disorder: DSM 5 will turn temper tantrums into a mental disorder- a puzzling decision based on the work of only one research group. We have no idea whatever how this untested new diagnosis will play out in real life practice settings, but my fear is that it will exacerbate, not relieve, the already excessive and inappropriate use of medication in young children. During the past two decades, child psychiatry has already provoked three fads- a tripling of Attention Deficit Disorder, a more than twenty-times increase in Autistic Disorder, and a forty-times increase in childhood Bipolar Disorder. The field should have felt chastened by this sorry track record and should engage itself now in the crucial task of educating practitioners and the public about the difficulty of accurately diagnosing children and the risks of over- medicating them. DSM 5 should not be adding a new disorder likely to result in a new fad and even more inappropriate medication use in vulnerable children.
2) Normal grief will become Major Depressive Disorder, thus medicalizing and trivializing our expectable and necessary emotional reactions to the loss of a loved one and substituting pills and superficial medical rituals for the deep consolations of family, friends, religion, and the resiliency that comes with time and the acceptance of the limitations of life.
3) The everyday forgetting characteristic of old age will now be misdiagnosed as Minor Neurocognitive Disorder, creating a huge false positive population of people who are not at special risk for dementia. Since there is no effective treatment for this ‘condition’ (or for dementia), the label provides absolutely no benefit (while creating great anxiety) even for those at true risk for later developing dementia. It is a dead loss for the many who will be mislabeled.
4) DSM 5 will likely trigger a fad of Adult Attention Deficit Disorder leading to widespread misuse of stimulant drugs for performance enhancement and recreation and contributing to the already large illegal secondary market in diverted prescription drugs.
5) Excessive eating 12 times in 3 months is no longer just a manifestation of gluttony and the easy availability of really great tasting food. DSM 5 has instead turned it into a psychiatric illness called Binge Eating Disorder.
6) The changes in the DSM 5 definition of Autism will result in lowered rates- 10% according to estimates by the DSM 5 work group, perhaps 50% according to outside research groups. This reduction can be seen as beneficial in the sense that the diagnosis of Autism will be more accurate and specific- but advocates understandably fear a disruption in needed school services. Here the DSM 5 problem is not so much a bad decision, but the misleading promises that it will have no impact on rates of disorder or of service delivery. School services should be tied more to educational need, less to a controversial psychiatric diagnosis created for clinical (not educational) purposes and whose rate is so sensitive to small changes in definition and assessment.
7) First time substance abusers will be lumped in definitionally in with hard core addicts despite their very different treatment needs and prognosis and the stigma this will cause.
8) DSM 5 has created a slippery slope by introducing the concept of Behavioral Addictions that eventually can spread to make a mental disorder of everything we like to do a lot. Watch out for careless overdiagnosis of internet and sex addiction and the development of lucrative treatment programs to exploit these new markets.
9) DSM 5 obscures the already fuzzy boundary been Generalized Anxiety Disorder and the worries of everyday life. Small changes in definition can create millions of anxious new ‘patients’ and expand the already widespread practice of inappropriately prescribing addicting anti-anxiety medications.
10) DSM 5 has opened the gate even further to the already existing problem of misdiagnosis of PTSD in forensic settings.
DSM 5 has dropped its pretension to being a paradigm shift in psychiatric diagnosis and instead (in a dramatic 180 degree turn) now makes the equally misleading claim that it is a conservative document that will have minimal impact on the rates of psychiatric diagnosis and in the consequent provision of inappropriate treatment. This is an untenable claim that DSM 5 cannot possibly support because, for completely unfathomable reasons, it never took the simple and inexpensive step of actually studying the impact of DSM on rates in real world settings.
Except for autism, all the DSM 5 changes loosen diagnosis and threaten to turn our current diagnostic inflation into diagnostic hyperinflation. Painful experience with previous DSM’s teaches that if anything in the diagnostic system can be misused and turned into a fad, it will be. Many millions of people with normal grief, gluttony, distractibility, worries, reactions to stress, the temper tantrums of childhood, the forgetting of old age, and ‘behavioral addictions’ will soon be mislabeled as psychiatrically sick and given inappropriate treatment.
People with real psychiatric problems that can be reliably diagnosed and effectively treated are already badly shortchanged. DSM 5 will make this worse by diverting attention and scarce resources away from the really ill and toward people with the everyday problems of life who will be harmed, not helped, when they are mislabeled as mentally ill.
Our patients deserve better, society deserves better, and the mental health professions deserve better. Caring for the mentally ill is a noble and effective profession. But we have to know our limits and stay within them.
DSM 5 violates the most sacred (and most frequently ignored) tenet in medicine- First Do No Harm! That’s why this is such a sad moment.