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It's fair to say at least officially that a mental disorder does not exist until it's in the DSM, that's the Diagnostic and Statistical Manual of Mental Disorders. It is the bible of psychiatry and it describes all the different mental disorders recognized by modern psychiatrists and insurance companies. Today, after almost a decade of work, the American Psychiatric Association released a list of disorders that it intends to publish in the next DSM. There will be some big changes, specifically when it comes to kids with what's known as bipolar disorder. The number of kids diagnosed as bipolar has been growing exponentially in recent years.
But as NPR's Alix Spiegel reports, the people behind the new DSM hope to change that.
ALIX SPIEGEL: The number of kids diagnosed as bipolar has rapidly increased. One study found that kids today are 40 times more likely to be diagnosed with bipolar than they were in 1994. And over a million kids were now treated for the disorder with heavy duty medications. One of these kids, an 11-year-old named Jacob, woke from sleep one morning last week and found his mother cheerfully waving a borrowed microphone in his face.
REBECCA: Get up, come on.
REBECCA: Come on, get up.
SPIEGEL: Jacob sounds meek as a kitten. But by the time he was three, he had chipped one of his mother's teeth and bloodied her nose a handful of time. It wasn't that he was a bad kid. He was very often sweet. But he had rages. And his mother, Rebecca, who didn't want to use their full names, says these rages could not be controlled.
REBECCA: His temper tantrums - nothing worked. He was the toughest kid. And he couldn't calm down. He couldn't shift his attitude the way other kids can, even if he wanted to.
SPIEGEL: And Rebecca says Jacob's rages weren't a rare event. They were everyday, anything could trigger them.
REBECCA: My daughter had ballet twice a week and he hated getting in the car seat to go to ballet. And so he hit me. And he would have furious fits about the car seat. It was just terrible. So it was all the time, all the time.
SPIEGEL: Rebecca was a single mother raising her two children alone. And her life in those early years felt almost unbearable.
REBECCA: Everyone has lots and lots of advice because remember the mommy is the problem every time. It's always the mommy. And many times people who are in my situation get, you know, get really despondent because they read all the books, they follow all the advice. And it doesn't work. It just doesn't work.
SPIEGEL: So, Rebecca did her best, prayed her kid would grow out of it. Then, a month into kindergarten, Rebecca got a call from Jacob's school. Jacob had gotten upset.
REBECCA: The teacher tried to hold him, tried to hold both of his arms. And he swung back and hit her in the mouth, and busted her lip, I'm talking blood everywhere.
SPIEGEL: The principal told Rebecca her son couldn't come back. So, the next day she stayed home and made appointments a pediatrician, a psychologist, a psychiatrist. After a round of visits, Jacob was diagnosed with bipolar disorder. Bipolar disorder used to be known as manic depression. In adults, it's a disease characterized by episodes of intense highs and lows, periods of mania, periods of depression. It's seen as a lifelong biological problem that can be controlled by medications. So Jacob was put on medications: mood stabilizers, antidepressants. He was four years old.
REBECCA: This is you pod. And now you can decorate it, see.
SPIEGEL: Today, Jacob is a video game enthusiast who shows me a game called, "Little Big Planet." Since his diagnosis at four, he stayed medicated. And there's absolutely no trace of the angry child his mother describes. Not even Jacob seems to remember him.
JACOB: I remember a little but not that much.
SPIEGEL: Do you ever get angry now?
JACOB: Very little.
SPIEGEL: His mom says the same. And according to her, the meds changed Jacob almost immediately within days.
REBECCA: You know, it was just clear, you know, if you said, Jacob don't do that. He said, okay. He didn't cling onto things the way he did. You could negotiate with him. (unintelligible).
SPIEGEL: The number of kids like Jacob, kids on serious bipolar medications like mood stabilizers, atypical antipsychotics, has grown enormously. In fact, Medicaid spends more money on antipsychotics than it does on any other drug expenditure. Now, many of these kids haven't had the positive experience that Jacob had. But even if they had, David Shaffer, one of the psychiatrists responsible for the changes coming up in the DSM, said that while the medications might be helping kids like Jacob today, we have no idea how they will affect them tomorrow.
Dr. DAVID SHAFFER (Child Psychiatrist): In many states you go to, people are worried about the proportion of extremely young children who are receiving atypical antipsychotics which we think have quite profound effects on important mechanisms in the brain which may influence growth and development of the nervous system.
SPIEGEL: You see almost all of the drugs now used have never been tested in children. So what's happening, critics argue, essentially amounts to an enormous, unregulated experiment directly on American children. And this morning, in a move they could potentially change mental health practice all over America, the American Psychiatric Association announced that it intends to include in its new DSM a diagnosis that it hopes will be used by clinicians instead of the bipolar label. Essentially, they're trying to use the power of the DSM - which is incredibly important because insurance companies use it to decide what to reimburse - to change the behavior of doctors. But Shaffer says that the move shouldn't be misinterpreted.
Dr. SHAFFER: I don't think anybody's arguing that these are perfectly normal children that get the label - far from it. We're saying these kids are very sick. But they probably don't have bipolar disorder. And they probably do deserve a name which adequately describes what they're doing.
SPIEGEL: Child psychiatrist Janet Wozniak helped popularize the bipolar diagnosis for kids. And she says she knows why the diagnosis took off.
Dr. JANET WOZNIAK (Child Psychiatrist): The diagnosis took off because it makes clinical sense, because we opened our eyes.
SPIEGEL: But Gabrielle Carlson, a child psychiatrist at Stony Brook University, disagrees. She feels the bipolar label took off for a host of other reasons. For example, many of the kids now categorized as bipolar were once upon a time, she says, diagnosed as having conduct disorder. Kids with conduct disorder are seen as potential juvenile delinquents: aggressive, prone to anger and destructive behavior. But, says Carlson, the treatments for conduct disorder are really pretty limited.
Dr. GABRIELLE CARLSON (Child Psychiatrist, Stony Brook University): Prayer and fasting. We've got parent kinds of treatment, but the evidence that therapy makes a big difference is not wonderful.
SPIEGEL: Which is why, says Carlson, when psychiatrists were told that they could now think of this set of behaviors not as conduct disorder but as manic depression, they got so excited because manic depression was treatable with drugs.
Dr. CARLSON: Heck, if that's what it is, we have got a bunch of medicines that are supposed to be helpful for mania. I give it one of these drugs, maybe it will get better.
SPIEGEL: Another advantage to bipolar, Carlson points out, is that because the insurance industry saw bipolar as a biological medical problem, they were happy to fund it. While conduct disorder, a parenting problem, they didn't want to pay for. Finally, Carlson argues parents themselves were relieved on some level.
Dr. CARLSON: The part of the acceptance of the bipolar if you're a parent is, hey, I'm off the hook on this one. It's not because I'm a bad parent. I've got a kid with this genetic problem. It's not my fault. And, you know, there's some pros and cons to that, but the fact remains many people found that liberating.
SPIEGEL: So clearly, there were some real advantages to using the bipolar label. But the disadvantages, including some of the medications, were so great that David Shaffer told me he and his colleagues on the DSM felt that they had to weigh in and come up with a diagnosis that might be a better fit for kids like Jacob with rage problems.
Dr. SHAFFER: So, what we thought would be valuable would be to carve out a group with the most severe reactions. So ones who, when they do lose their temper, do so with, you know, great force, and who are having them frequently two or three times a week.
SPIEGEL: The disorder, Shaffer says, will be called temper dysregulation disorder and it will be seen as a brain or a biological dysfunction, but not necessarily as a lifelong condition like bipolar. Of course, there's no way to predict what practical effects these changes might have. How insurance companies, schools might react. For instance, when Rebecca, the mother of Jacob, took paperwork that said that her child was bipolar to the school and to her neighborhood, Jacob's violent outburst wasn't seen as evidence that he was a bad seed, he was just sick.
REBECCA: And the school then made plans to immediately take care of the situation, you know, it was Jacob wasn't suspended from school. He wasn't, you know, he didn't have all those ramifications. It was as if we had discovered he had cancer, you know, he needed accommodations, he needed help. Not a whole lot of craziness.
SPIEGEL : But, Rebecca was told, if he had conduct disorder he would probably have to go immediately to a special program. So, how will temper dysregulation disorder be seen? Shaffer admits it's hard to say whether doctors will change their behavior and use this new diagnosis. And Gabrielle Carlson says it's possible that even with the new diagnosis kids will get the same medications.
Dr. CARLSON: They may get many of the same, absolutely, absolutely. But the difference is going to be that you won't have to take this for the rest of your life.
SPIEGEL: So, the people at the DSM have spoken. Whether doctors will pay attention remains to be seen.
Alix Spiegel, NPR News, Washington.
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