Before the mid-1990s, bipolar disorder was almost never diagnosed in those under 18, and it was especially rare to see the label applied to a preschooler. Today, 800,000 kids have been diagnosed, and a surprising number of them aren't yet in kindergarten. The diagnosis is still highly controversial, but clearly, some child psychiatrists now think the disorder is much more common than they used to. What caused them to turn around so dramatically in their thinking and how exactly are children diagnosed with the disorder? NEWSWEEK's Mary Carmichael asked several experts to share their thoughts.
How difficult is it to diagnose bipolar disorder in young kids? What do doctors look for?
Adelaide Robb, child psychiatrist, Children's National Medical Center, Washington, DC:
"You look at family history -- you ask about [relatives] with bipolar disorder, what medications were they treated with, what has the child's development has been like. You do a thorough interview of the parents and the child, and a mental status exam, which is the physical exam equivalent for a psychiatrist. You ask for observations from the teachers. Is the child disheveled? Does he invade your personal space? Things you wouldn't do to a stranger, but manic people have problems with. Is his pattern of speech rapid? Is he hopping from topic to topic? He might have delusions, believing that he's the king of the universe, that he can fly, that he has special X-ray vision. He can have hallucinations, he may see things or think he hears the voice of God. He might take a towel and wrap it around his shoulders and jump out the window, believing with all his heart that he can fly. A lot of times you can distract a two-year-old and the temper tantrum blows away. But these kids you cannot distract. They rant from the time they get up in the morning until they go to bed. When you see many typical toddlers every day and somebody is way worse than anything you've seen, to the point that the parents have been run ragged and they're competent parents, you know it's not just a terrible two-year-old."
David Miklowitz, professor of psychology and psychiatry, the University of Colorado, Boulder: "We wouldn't diagnose bipolar disorder just because someone is moody. But the younger the kid, the less certain you become of the diagnosis. Often, we have to follow the kid over time in order to know if it's bipolar disorder, some other disorder, or just a phase of childhood. We don't always know when we just interview a kid. When the kid's very young, it's less clear what you call a symptom. Take hyper-sexuality--what does that look like in a four-year-old? Or grandiosity--kids often think they're superheroes and have imaginary playmates. What does it mean to be elated at four or five? Kids are giddy. The answer we usually give families is you have to look for phases of illness and co-occurring functioning problems in the kid--for example, they're getting kicked out of daycare, or there have been multiple experiences where other parents are saying, "come pick up your kid, my kid can't get along with them." These kids are the ones who cause the problems at the sleepover, or have huge meltdowns in the supermarket, or fits of rage when they go to the dentist. They have particular problems functioning in the roles that are expected of them."
Ross Baldessarini, professor of psychiatry, McLean Hospital, Belmont, Mass.: "You don't often have clear cut highs and lows in children, and the younger the child is, the more difficult it is to distinguish disorders. It all comes at you like behavior and distress and acting up and excitement and misery. It's really difficult to diagnose."
John Weisz, president and CEO, Judge Baker Children's Center, Boston: "Diagnosing these disorders in kids is tricky. One aspect of bipolar disorder, for example, can be that children feel so enthusiastic about things that they get out of control and can't get back to the middle. But that's also part of being a regular kid. So how far do you have to go on that continuum before you have a disorder? It's a judgment call. ... A lot of times, if you put two clinicians in a room with a child and have them observe, they might come to different conclusions. Then there's the fact that some kids seem to mature out of [bipolar disorder] while others get worse, and we're not very good at predicting which will be which. ... There are even more questions about diagnosing the disorder in preschoolers. The younger you go, the more disagreement you get among clinicians."
Ellen Leibenluft, chief of the Section on Bipolar Spectrum Disorders, Emotion and Development Branch, Mood and Anxiety Disorders Program, National Institute of Mental Health, Washington, DC: "I think that people should be cautious in terms of diagnosing it early. In our group, we really like to see clear episodes of mania and depression - not chronic irritability - before we will diagnose bipolar disorder. A case of clear cut bipolar disorder at age two would be extremely unusual. What you see more typically is chronic irritability. But the important thing to say is this: Whether or not these kids have bipolar disorder, they are very impaired, and they need treatment. People tend to take the issue about whether or not the child is bipolar and segue it into a discussion of whether or not the child is ill. And those aren't the same questions."
Jean Frazier, child psychiatrist (and one of NEWSWEEK's cover subject, Max Blake's doctors), Cambridge Health Alliance: "It's very rare to see a child this young with something like bipolar disorder. But Max has classic bipolar disorder, without question, from a very early age. He has clear episodes where he'll get manic for a sustained period of time, at least a week in duration, sometimes more, or he'll get hypomanic, [an overexcited state that falls short of mania] and that will last about four days. Then he goes through profound depressions and those can last for weeks. ... Very young children can't really describe their feelings very well, so in order to get a sense of how they're feeling, a lot of what we do is based on observation or asking questions through play. Generally, I would use puppets or tell a story about another child who is having trouble with being angry a lot. Max is good at this-- he'll say, 'oh, really? I have that problem too.' ... There's also, in these kids, an inability to reality-check. I remember very well when Max was much younger than he is now, there was a time when he came in and was wearing a Batman costume, or maybe Spiderman, and he really believed that he was that action hero. Most kids his age will say, 'oh, it's not really true,' and it's all in good fun. But there's a difference between make-believe and really believing the fantasy. He couldn't reality-check around it at all."
What was the reaction in the mid-90's when doctors first proposed the idea that bipolar disorder was relatively common in kids?
Robb: "As far back as the early 1900s, there were doctors who talked about kids having it, though very rarely, before puberty. It's not something that just fell out of the sky. But I think that prior to the 1990's, American psychiatry was much more influenced by Freudian thinking, which did not believe children were developmentally capable of having either depression or mania. I came to the field having spent four years in the early '90s working at the National Institute of Mental Health in the bipolar branch and seeing lots of kids coming in with their parents, who had a diagnosis of bipolar disorder. The parents were saying to me, 'Dr. Robb, my child has bipolar disorder too. You've got to help my kid.' I think since then, there has been a big change in believing in it --a combination of better diagnostic interviews and a better long-term understanding of the disorder. When I sat at NIMH and talked to these adult patients, they would tell me, 'I got kicked out of three private schools in Washington and sent off to boarding school.' Their problem had not been recognized as a mental health issue; it was treated as a disciplinary issue. We're getting better at recognizing things now."
Janet Wozniak, assistant professor of psychiatry, Harvard Medical School, Boston: "When I started doing this work in the early '90s, early onset of bipolar disorder was thought to be age 18. The first paper we wrote described a group of patients who were under 12. That paper made a big splash. It was met with a sense of disbelief: 'How could it be that your clinic has seen so many children with this disorder under 12?' We saw them at eight, but three-fourths of parents described it prior to age five. These children had already been suffering for half their life. That was our first clue to this being a disease of preschoolers. ... Child psychiatrists have had to retrain themselves. There were plenty of papers at the same time about children who were aggressive or depressed. We missed the manic part. Most of these children have some form of [attention deficit hyperactivity disorder] too, and to see the ADHD part of them is a no-brainer from a clinician's standpoint. ... Plenty of these parents would go in and describe irritability, and what clinicians did was to say, 'ADHD is probably why the kids are irritable.' They also got medicines for depression. The co-existing mania was easy to overlook."
Demetri Papolos, associate professor of psychiatry, Albert Einstein College of Medicine: "Even when we started to write our book ("The Bipolar Child," Broadway Books) in 1997, there were fewer than 100 published studies on pediatric bipolar disorder. Many of them were uncontrolled and based on a limited number of subjects. The book first came out in January 2000, and there were a lot of critics. The existence of bipolar disorder in children was very controversial then. To come out with a book suggesting that it actually existed and there were ways of defining it didn't sit well with a number of movers and shakers in the field of child psychiatry. I think now, gradually what's happened is that the whole controversy has moved from whether it exists to how we go about diagnosing it. But even today there are places where it's received with a great deal of skepticism."
Baldessarini: "The whole idea that kids could have it was not seriously entertained until the last decade. At that time, in my lab, [colleague Dr. Gianni Faedda] was seeing a number of children with unusual illness that didn't seem to fit clear diagnostic disorders. The other thing that got us thinking was that even at that time, the epidemiology suggested that at least half of known adult cases of bipolar disorder had declared themselves by age 20. This was a revolutionary idea - that half of bipolar people had already been that way in childhood or adolescence."
How did the bipolar diagnosis in kids, and treatment with medications, eventually become so widespread?
Baldessarini: "I think that in part the movement was driven by the recognition of the importance of lithium as a treatment option. Having an effective treatment for a syndrome is a great way to popularize it. Once you have something to offer, you're going to start looking for things to use it on --so I suspect that when clinicians were given a hammer, they started looking for nails."
Robert Whitaker, author, 'Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill:' "Why do we start medicating kids younger and younger? I think one reason is the pharmaceutical companies have products and they want to expand the market. They saw that there was this untapped market of kids. They started working with doctors, creating a market for drugs. And the doctors benefited financially from that. They got grants; they became leaders in the field. It's possible for doctors to be very deluded about their motivations."
Kiki Chang, associate professor of psychiatry and behavioral sciences at the Stanford University School of Medicine: "People are so concerned about the pharmaecutical industry's impact. It's a factor, but a very minor factor that's gotten beaten to death. Meanwhile, we've missed the whole point about how sick these kids are."