This article is part of Next, The Globe's five-day series examining the people, places, things and ideas that will shape 2013.
The latest revision of the Diagnostic and Statistical Manual of Mental Disorders, the most current attempt to catalogue humanity’s moods and mania, confirms one thing: Diagnosing the trials of the mind is still more art than science. It’s vulnerable to both trends and politics. The field’s brightest experts bicker, and the patrons, Big Pharma, have their own agenda.
When it’s published in May, the DSM-V will become the new textbook for mental-health professionals, influencing everything from workers’ compensation claims to research, and, perhaps most significantly, how and when medication is prescribed. The DSM is published by the American Psychiatric Association, but has international sway with mental-health practitioners. It identifies emerging areas of study, defines new disorders, and updates the definitions of core mental illnessessuch as depression and anxiety. Its contents are already forcing questions about society’s ever-shifting definition of “normal,” with the number of diagnoses increasing.
“Billions of dollars are riding on these decisions,” says medical historian Ed Shorter, at the University of Toronto. “It’s very important in the real world which diagnoses get in, and which ones get taken out.”
Critics have decried the final draft as “hopelessly flawed, warning it may lead to unnecessary treatments. The best that most of its defenders can say is that it’s a sound, if imperfect, compromise. To illustrate the delicate – and, many argue, dysfunctional – balancing act, here are a few high-profile examples among the many revisions expected when the DSM-V comes out next spring:
When a revision of the DSM-IV in 2000 made Asperger’s, a disorder on the mild end of the autism spectrum characterized by behavioural symptoms, a separate disorder, it launched a wave of research in the area. The new version of the DSM moves Asperger’s back under the umbrella of Autism Spectrum Disorders. The DSM panel estimates that 10 per cent of patients may no longer qualify for a diagnosis, but the real effect is hard to predict. (Asperger’s is also one of the few examples of a revision that narrows a diagnosis rather than expands it.)
Dr. Pippa Moss, a child psychiatrist with the Cumberland Health authority in Nova Scotia, who also has a child with autism, says the decision is based on the science that the previous DSM definition fostered. “If a diagnosis is going to be useful, it needs to tell you something unique about treatment or support,” Dr. Moss says. Not only do children tend to drift over their lifetime between the symptoms of Asperger’s and high-functioning autism, especially during stressful periods, the therapies are similar. Basically, making Asperger’s a distinct disorder in 2000 helped researchers study it enough to conclude that it didn’t need to be one.
The decision has prompted an outcry from powerful family lobby groups, who worry about the impact of school resources, and that some children, who need support, may now fall outside of the diagnosis. (The DSM clarifies that patients who now have the diagnosis will not lose it.) The diagnosis of Asperger’s, with its positive association with bright, eccentric adults and prodigies, is a good example of the power of language in psychiatry. Parents would rather be told their child has Asperger’s than high-functioning autism, even if there isn’t a science-based difference.
The DSM is crafted largely by U.S. doctors trying to strike a tricky balance between not missing patients, and not catching too many. Some outspoken critics, such as Allen Frances, a Duke University psychiatrist who chaired the DSM-4 task force, argue that the manual keeps expanding, often without clear supporting science. The number of people diagnosed under these new or widened disorders is almost always higher than field trials predict. “Psychiatry is subject to fads,” he says, “and very small changes can have huge unintended consequences.”
For example, the new DSM removes the “bereavement exclusion,” which previously restricted psychiatrists from diagnosing depression in patients who were grieving. But some feared that people with clinical depression weren’t getting help.
But expanding the definitions of mental-health conditions has been a worrisome trend for many experts, especially as the use of anti-anxiety drugs and anti-depressants has skyrocketed. In psychiatry, the line between function and dysfunction are, after a certain point, subjective for both patient and practitioner. When does sadness become depression? Or worry slide into anxiety? The most important measuring stick is distress: When someone can’t live with their symptoms, it becomes a mental-health issue. Removing the grief exclusion is designed to allow psychiatrists to make that assessment as the situation warrants. In the end, the DSM authors compromised and included a note that reminds practitioners to consider that a tragic event could cause “depressive symptoms,” but not clinical depression.
Fixing temper tantrums
One of the most hotly debated additions to the manual is “Disruptive Mood Dysregulation Disorder,” which critics worry will see more kids receive a diagnosis – and possibly medication – for what may really be just awful temper tantrums. The actual criteria is somewhat more stringent: The diagnosis is meant to cover children and teens who have lengthy and sever “temper outbursts” three or more times a week.
DMDD, as it will be called, has “probationary” status, recognizing that there isn’t a lot of research to support the disorder (its inclusion will help researchers investigate it). It was included because of concerns that troubled children were being mislabelled with bipolar disorder – a highly questionable diagnosis in children that has seen a steep rise in the last decade. In addition to being saddled with a lifelong condition, this often led to the prescription of antipsychotic and mood-stabilizing drugs, which haven’t been tested on kids. The DMDD diagnosis is meant to give physicians a new label for these complicated patients, one without the baggage and stigma of the adult disorder. Moss rejects the notion that the diagnosis will become a catch-all for kids with normal tantrums. “A child like that would soon be screened out, and mom and dad are going to be sent to parenting class.”
But Frances says that there is no guarantee that the new diagnosis itself wouldn’t be treated with medication, especially when child psychologists are in short supply – and when many patients are first seen by family doctors, with little training in the field. “These aren’t academic questions,” says Frances. “It’s not something you throw out there and see how it works. These are people’s lives.”
Breaking out binge eating
Much of the in-fighting around the DSM involved determining the criteria for a diagnosis. The manual has always given psychiatrists some wiggle room when they see patients whose symptoms are severe but not packaged neatly into a clear diagnosis. In the eating-disorder category, binge eaters are often placed in that more open-ended “not-otherwise-specified” category.
But that doesn’t help researchers and it may complicate treatment. Dr. Giorgia Tasca, director of Ottawa’s Centre for Eating Disorders Research, estimates binge-eating makes up at least 20 per cent of his non-specified cases – a statistic believed to be much higher in community-based programs. The disorder, in which people eat to excess but don’t purge afterward, “is very different from Thanksgiving dinner, where you are eating way too much, but it’s a social, pleasurable event,” says Tasca. “People typically do it in secret. And they will say, ‘I couldn’t stop myself. I couldn’t help it.’”
The DSM has controversially lowered the criteria – instead of two times a week for six months, patients can be diagnosed if they binge eat once a week for three months. (The treatment is typically psychotherapy, but anti-depressants may be prescribed.) Tasca expressed concerns about lowering the bar for the disorder. “I don’t know if there is enough research to support it.” But the impact of the change – particularly, how many people will be diagnosed – won’t be known for many years.
Refining adult ADHD
The DSM, like the Bible, is open to interpretation, which is what makes its wording so important. “If a diagnosis doesn’t make sense,” says Moss, “physicians will vote with their feet. They won’t use it.” But that’s overly optimistic, critics argue, pointing to the decision to give Adult Attention Deficit Hyperactivity Disorder (ADHD) it’s own stand-alone diagnosis.
Dr. Lily Hechtman, professor of psychiatry and pediatrics at McGill University and an expert in ADHD, says the previous description was based on field trials with children. The new manual has added criteria such as quitting jobs repeatedly, ending long-term relationships abruptly, running red lights. Of the 5 to 10 per cent of children diagnosed with ADHD, Hechtman says, it’s now estimated at least half of them have trouble managing the symptoms in adulthood. In her view, the revised DSM more accurately reflects the knowledge of the last decades, and if followed strictly, the diagnosis shouldn’t expand prevalence of the disorder among adults.
But critics are concerned that it will become too easy for adults to get medication for everyday distraction and stress. Frances points out that in all three revisions he oversaw in the 2000 edition of the DSM-IV (one of which included pulling Asperger’s out from under the autism umbrella) the rates of diagnosis increased many times more than they had predicted, and that is especially true when there’s a drug available. “However well-intended the suggestion, it’s the translation to actual clinical practice that is treacherous,” Frances says. “What’s written in the manual doesn’t determine how it will be used, particularly with drug companies on the sidelines with huge marketing budgets.”