This weekend, 20 people from around the country will meet in a nondescript hotel room in Arlington, Va., and take a vote. A passing stranger who stumbled on this group wouldn't see much of anything, just a bunch of graying academic types sitting around a table.
But millions of people will be touched by that vote because the graying academic types are voting to approve the 5th edition of the Diagnostic and Statistical Manual — the bible of psychiatry.
The DSM, published by the American Psychiatric Association, is an enormous tome that defines every mental disorder. And in defining every mental disorder, it helps determine many other things, such as how struggling children are treated in school.
If the disruptive behavior of a child is seen as a disorder — like attention deficit hyperactivity disorder or autism — schools will help with subsidized services. If not? Well, then the schools often see the child as just trouble, and the child will be penalized.
So it's no surprise that there's lots of controversy every time the DSM is revised, with people arguing that the new definitions are too narrow or too broad. And the DSM-5 is no exception — it's considered the single most controversial DSM of them all.
So what are the likely changes? How have the many controversies been decided?
The APA refuses to say anything about what's in and what's out, and they've also told people associated with the DSM-5 that they shouldn't speak specifically, so it's very hard to know. But some of the changes that were published last year on the APA website (they've since been removed) are likely.
Asperger's Syndrome may be eliminated: Asperger's Syndrome is currently a popular diagnosis, but soon it may not be used by mental health professionals to identify people with mild autism. Instead, there will be a spectrum of autism, and people who would once have been diagnosed with Asperger's will instead be diagnosed as mildly autistic.
Many people with Asperger's syndrome opposed this change. "People with Asperger's preferred that identity, as opposed to being seen as part of autism spectrum. I think that's been part of the complaint," says Roger Peele, secretary of the APA.
There will likely be a new childhood disorder called disruptive mood dysregulation disorder: The people in charge of childhood disorders proposed this diagnosis because they felt very strongly that too many children were being categorized as having bipolar disorder and then prescribed anti-psychotic drugs.
The hope is that psychiatrists will use this new diagnosis for kids, instead of bipolar disorder, and not prescribe as many drugs. Critics say it's not clear that the change will work out, and that the history of mental health is littered with good intentions like this gone terribly wrong. But the hope is that it will shut down the rise of bipolar diagnoses in children.
There will be a new way to think about sadness in the wake of the death of a loved one: In the last DSM (DSM-4), psychiatrists were warned away from diagnosing major depression in people who had recently lost someone they loved, because grief in the face of loss was seen as a normal — not abnormal — response.
"That's reasonable thinking, and certainly no one wants to pathologize grief or sadness or call it an illness when it is an absolutely normal human experience," said Dr. Sidney Zizook of the University of California, San Diego.
But Zizook was one of the people who argued — probably successfully — to change that because, he says, telling psychiatrists that people who are grieving shouldn't be diagnosed as depressive "excludes a bereaved person from being diagnosed with depression, if they have a depression, and no one wants to do that, either."
This is a small change, but to critics, emblematic of a much larger and more sinister problem: the expansion of behaviors considered abnormal. Shyness becomes "social phobia," restlessness becomes ADHD.
Chris Lane, author of Shyness: How Normal Behavior Became a Sickness, is a DSM critic. He worries the new version will label people sick when they are not. "I'm very concerned about the number of false positives from this edition," he says. "That is, the number of people who are overdiagnosed."
Roger Peele of the APA obviously doesn't agree, which doesn't mean that he thinks the DSM-5 is infallible.
"It's important that people not see the DSM as a bible," he says, "that they respect it but don't worship it."
Hundreds of researchers have worked hard to make the DSM as good as they could figure, Peele says, but the entries are simply their best guesses on how to define and think about mental disorders.
ROBERT SIEGEL, HOST:
This weekend, 20 people from around the country will meet in a nondescript hotel room in Arlington, Virginia and they'll take a vote. A passing stranger who looked in wouldn't see much - just a bunch of graying academic types at a table. But millions of people will be touched by what they do. That's because they're voting to approve the new diagnostic and statistical manual, the DSM-5. It's the bible of the mental health profession and it defines all official mental disorders. Every 10 to 15 years, a new one comes out and NPR's Alix Spiegel has the story of this fifth edition.
ALIX SPIEGEL, BYLINE: One of the graying academic types due to sit at the table this weekend is a tall, elegant man named Roger Peele, a longtime member of the American Psychiatric Association.
ROGER PEELE: I'm secretary of the APA, so I'm on the board.
SPIEGEL: OK. So, you're one of those people who's going to be voting?
SPIEGEL: Peele has been in the DSM business for a long time. He's worked on every DSM since 1975. So, Peele knows well just how influential the DSM actually is.
PEELE: It is used in the courts. It is used in the schools. It defines what we will call a mental disorder.
SPIEGEL: And in defining what we call a mental disorder, the DSM helps determine many, many other things. For instance, how struggling children are treated in school. If the disruptive behavior of a child is seen as a disorder - ADHD, autism - schools will help with subsidized services. If not, schools often see the child as just trouble. So it's no surprise that there's lots of controversy every time the DSM is revised - people arguing that the new definitions are too narrow or too broad, and the DSM-5 was no exception.
PEELE: I think DSM-5 has had more controversy - much more in terms of media attention.
SPIEGEL: So, what in the end is actually in? The APA won't give specifics but some of the changes that have been proposed are likely. Asperger's Syndrome is very likely to be eliminated. Instead of being diagnosed with Asperger's, people with mild autism are going to be categorized as autistic but mildly autistic - there's going to be a spectrum. Which, Peele says, upsets many people with Asperger's.
PEELE: People with Asperger's preferred that identity, as opposed to being seen as part of autism spectrum. I think that's been part of the complaint.
SPIEGEL: Many Asperger's patients see autism as a label signaling severe disability. The new DSM will also likely create a new disorder for children called Disruptive Mood Dysregulation Disorder. Many psychiatrists believe that too many children are diagnosed as having bipolar disorder and given anti-psychotic drugs and they want this new diagnosis to be used instead of bipolar for kids, so hopefully psychiatrists will reduce their prescriptions. Then there's the issue of how to think about bereavement. Dr. Sidney Zisook says in the last DSM, psychiatrists were told not to diagnose major depression in people who'd recently lost someone they loved, because grief after death is normal.
SIDNEY ZISOOK: That's reasonable thinking and certainly no one wants to pathologize grief or sadness or call it an illness when it is an absolutely normal human experience.
SPIEGEL: But Zisook argued, probably successfully, to change that. He believes many clinically depressed people were being ignored.
ZISOOK: It excludes a bereaved person from being diagnosed with depression if they have a depression, and no one wants to do that, either.
SPIEGEL: Now, this is a small change, but to critics, it's emblematic of a much larger problem, the expansion of behaviors considered abnormal. Shyness becomes social phobia, restlessness ADHD. Chris Lane is a DSM critic who worries the new DSM will label people sick even when they are not.
CHRIS LANE: I'm very concerned about the number of false positives that are likely to come from this new edition. That is, people who are overdiagnosed.
SPIEGEL: Roger Peele of the APA board obviously doesn't agree with Lane, which doesn't mean that he thinks the DSM-5 is infallible. Do you have a wish for this DSM?
PEELE: That people not see it as a bible, that they respect it but don't worship it.
SPIEGEL: Because, Peele says, while hundreds of researchers have worked hard to make the DSM-5 as good as they could figure, in the end, these are just their best guesses about how to define and think about mental disorders. Alix Spiegel, NPR News, Washington. Transcript provided by NPR, Copyright NPR.