Paul Williams, 13, has had almost as many psychiatric diagnoses as birthdays.
The first psychiatrist he saw, at age 7, decided after a 20-minute visit that the boy was suffering from depression.
A grave looking child, quiet and instinctively suspicious of others, he looked depressed, said his mother, Kasan Williams. Yet it soon became clear that the boy was too restless, too explosive, to be suffering from chronic depression.
Paul was a gifted reader, curious, independent. But in fourth grade, after a screaming match with a school counselor, he walked out of the building and disappeared, riding the F train for most of the night through Brooklyn, alone, while his family searched frantically.
It was the second time in two years that he had disappeared for the night, and his mother was determined to find some answers, some guidance.
What followed was a string of office visits with psychologists, social workers and psychiatrists. Each had an idea about what was wrong, and a specific diagnosis: “Compulsive tendencies,” one said. “Oppositional defiant disorder,” another concluded. Others said “pervasive developmental disorder,” or some combination.
Each diagnosis was accompanied by a different regimen of drug treatments.
By the time the boy turned 11, Ms. Williams said, the medical record had taken still another turn — to bipolar disorder — and with it a whole new set of drug prescriptions.
“Basically, they keep throwing things at us,” she said, “and nothing is really sticking.”
At a time when increasing numbers of children are being treated for psychiatric problems, naming those problems remains more an art than a science. Doctors often disagree about what is wrong.
A child’s problems are now routinely given two or more diagnoses at the same time, like attention deficit and bipolar disorders. And parents of disruptive children in particular — those who once might have been called delinquents, or simply “problem children” — say they hear an alphabet soup of labels that seem to change as often as a child’s shoe size.
The confusion is due in part to the patchwork nature of the health care system, experts say. Child psychiatrists are in desperately short supply, and family doctors, pediatricians, psychologists and social workers, each with their own biases, routinely hand out diagnoses.
But there are also deep uncertainties in the field itself. Psychiatrists have no blood tests or brain scans to diagnose mental disorders. They have to make judgments, based on interviews and checklists of symptoms. And unlike most adults, young children are often unable or unwilling to talk about their symptoms, leaving doctors to rely on observation and information from parents and teachers.
Children can develop so fast that what looks like attention deficit disorder in the fall may look like anxiety or nothing at all in the summer. And the field is fiercely divided over some fundamental questions, most notably about bipolar disorder, a disease classically defined by moods that zigzag between periods of exuberance or increased energy and despair. Some experts say that bipolar disorder is being overdiagnosed, but others say it is too often missed.
“Psychiatry has made great strides in helping kids manage mental illness, particularly moderate conditions, but the system of diagnosis is still 200 to 300 years behind other branches of medicine,” said Dr. E. Jane Costello, a professor of psychiatry and behavioral sciences at Duke University. “On an individual level, for many parents and families, the experience can be a disaster; we must say that.”
For these families, Dr. Costello and other experts say, the search for a diagnosis is best seen as a process of trial and error that may not end with a definitive answer.
If a family can find some combination of treatments that help a child improve, she said, “then the diagnosis may not matter much at all.”
A Kaleidoscope of Diagnoses
The most commonly diagnosed mental disorders in younger children include attention deficit hyperactivity disorder, or A.D.H.D., depression and anxiety, and oppositional defiant disorder.
All these labels are based primarily on symptom checklists. According to the American Psychiatric Association’s diagnostic manual, for instance, childhood problems qualify as oppositional defiant disorder if the child exhibits at least four of eight behavior patterns, including “often loses temper,” “often argues with adults,” “is often touchy or easily annoyed by others” and “is often spiteful or vindictive.”
At least six million American children have difficulties that are diagnosed as serious mental disorders, according to government surveys — a number that has tripled since the early 1990s. But there is little convincing evidence that the rates of illness have increased in the past few decades. Rather, many experts say it is the frequency of diagnosis that is going up, in part because doctors are more willing to attribute behavior problems to mental illness, and in part because the public is more aware of childhood mental disorders.
At the playground, in the gym, standing in line at the grocery store, parents swap horror stories about diagnoses, medications or special education classes. Their children are often as fluent in psychiatric jargon as their mothers and fathers are.
“The change in attitude is enormous,” said Christina Hoven, a psychiatric epidemiologist at Columbia University. “Not long ago people did all they could to hide problems like these.” Attention deficit disorder is perhaps the most straightforward diagnosis. Elementary school teachers are often the ones who first mention it as a possibility, and soon parents are answering questions from a standard checklist: Does the child have difficulty sustaining attention, following instructions, listening, organizing tasks? Does he or she fidget, squirm, impulsively interrupt, leave the classroom?
These behaviors are so common, particularly in boys, that critics question whether attention disorder is a label too often given to boys being boys. But most psychiatrists agree that while many youngsters are labeled unnecessarily, most children identified with attention problems could benefit from some form of therapy or extra help.
They are less certain about the children — perhaps a quarter of those seen for mental problems, some experts estimate — who do not fit any one diagnosis, and who often go for years before receiving a satisfactory label, if they receive one at all.
These youngsters collect labels like passport stamps, and an increasing number end up with the label Paul Williams received: bipolar disorder.
An Illness Under Dispute
Until recently, psychiatrists considered bipolar disorder to be all but nonexistent in children under 18. Today, it is the fastest growing mood disorder diagnosed in children, featured on the cover of news magazines and on daytime talk shows like “The Oprah Winfrey Show.”
The explosion of interest in bipolar disorder came after the approval of several drugs, called antipsychotics, or major tranquilizers, for the short-term treatment of mania in adults.
Beginning in the 1990s some researchers began to argue that bipolar disorder was underdiagnosed in adults. Soon, several child psychiatrists were arguing that the illness was more common than previously thought in children too.
Some experts who made those arguments had ties to manufacturers of antipsychotic drugs, financial interests disclosed in professional journals. But the message struck a chord, particularly with doctors and parents trying to manage difficult children.
Parents whose children have been given the label tend to adopt the psychiatric jargon, using terms like “cycling” and “mania” to describe their children’s behavior. Dozens of them have published books, CDs, or manuals on how to cope with children who have bipolar disorder.
A recent Yale University analysis of 1.7 million private insurance claims found that diagnosis rates for bipolar disorder more than doubled among boys ages 7 to 12 from 1995 to 2000, and experts say the rates have only gone up since then.
Katherine Finn, a 14-year-old who lives in Grand Rapids, Mich., said she was grateful for the growing awareness of the disease. Possessed by feelings of worthlessness as early as the fourth grade, Katherine said that by the sixth grade she “threw my sanity out the window.”
She became impulsive, loud, and abrasive, she said, adding, “I would blurt things out in class, I would moo like a cow, act like a little kid, just say the most random stuff.”
A psychiatrist promptly diagnosed the problem as bipolar disorder, after learning that there was a history of the disease on her mother’s side of the family. Katherine began taking drugs that blunted the extremes in her mood, and she now is doing well at a new school.
“It hit me like a Mack truck when I heard the diagnosis, but I knew right away it was correct,” said her mother, Kristen Finn, who is writing a book about her experience.
Still, many psychiatrists believe that, although childhood bipolar disorder may be real in families like the Finns, it is being wildly overdiagnosed. One of the largest continuing surveys of mental illness in children, tracking 4,500 children ages 9 to 13, found no cases of full-blown bipolar disorder and only a few children with the mild flights of excessive energy that could be considered nascent bipolar disorder — a small fraction of the 1 percent or so some psychiatrists say may suffer from the disease.
Moreover, the symptoms diagnosed as bipolar disorder in children often bear little resemblance to those in adults. Instead, the children’s moods seem to flip on and off like a stoplight throughout the day, and their upswings often look to some psychiatrists more like extreme agitation than euphoria.
“The question with these kids is whether what we’re seeing is a form of mania, or whether it’s extreme anger due to something else,” said Dr. Gregory Fritz, medical director of the Bradley Hospital, a psychiatric clinic for children in Providence, R.I.
Dr. Ellen Leibenluft, a research psychiatrist at the National Institute of Mental Health, argues that children who are receiving a diagnosis of bipolar disorder fall into two broad groups. The children in one group, a minority, have mood cycles similar to those of adults with bipolar disorder, complete with grandiose moods, and a high likelihood of having a family history of the illness. Those in the other group have severe problems regulating their moods and little family history, and may have some other psychiatric disorder instead.
“It is a mistake to lump them all together and assume they are all the same,” Dr. Leibenluft said. “It may be that the disorder has different dimensions and looks different in different kids.”
For parents with a child who is frantic and possibly dangerous, these distinctions may be academic. The medications may blunt their child’s extreme behavior, which may be all the confirmation they need.
For others, though, the uncertainties about childhood bipolar disorder loom larger. They wonder whether mania really explains what their child is going through, and if not, what it is that is being treated.
Evelyn Chase of Richmond, Va., said that a neurologist drove home his diagnosis of bipolar disorder in her 10-year-old son by pulling out “a copy of Time magazine and slamming the article in front of me.”
Ms. Chase said her son seemed to react most strongly to abrupt changes in the environment and to certain dyes and chemicals. “I used the bipolar diagnosis for school and getting services, but I don’t think it covers his behaviors,” she said.
For Paul Williams, the diagnosis simply feels like a temporary stop. In his short life, Paul has taken antidepressants like Prozac, antipsychotic drugs used to treat schizophrenia, sleeping pills and so-called mood stabilizers for bipolar disorder, in so many combinations that he has become nonchalant about them.
“Sometimes they help, sometimes they don’t,” he said. “Sometimes they make me feel like another person, like not normal.”
In recent months, his mother said, Paul seems to have improved: he visibly tries to control himself when he is upset and usually succeeds. He is an eager Mets fan who loves reading Harry Potter and the Goosebumps series. He gets out and plays baseball and football, like any 13-year-old boy.
But he has grown tired of telling his story to doctors, and neither he nor his mother expect that bipolar disorder will be the last diagnosis they hear.
In Search of Clarity
The specialists who manage children’s psychiatric disorders are trying to bring more standards and clarity to the field. Harvard researchers are completing the most comprehensive nationwide survey of mental illness in minors and hope to publish a report next year. And a recent issue of the journal Child and Adolescent Psychology was entirely devoted to the subject of basing diagnoses in hard evidence.
Given the controversies, one of the articles concludes, “we acknowledge that tackling the issue may be tantamount to taking on a 900-pound gorilla while still wrestling with a very large alligator.”
Dr. Darrel Regier of the American Psychiatric Association, who is coordinating work on the next edition of the association’s diagnostic manual for mental disorders, due out in 2011, said that researchers would focus on drawing distinctions among several childhood disorders, including bipolar disorder and attention deficit disorder.
“We wouldn’t disagree that criteria for these disorders currently overlap to some degree,” Dr. Regier wrote in an e-mail message, “and that a significant amount of research is under way to disentangle the disorders in order to support more specific treatment indications.”
Until that happens, parents with very difficult children are left to read the often conflicting signals given by doctors and other mental health professionals. If they are lucky, they may find a specialist who listens carefully and has the sensitivity to understand their child and their family.
In dozens of interviews, parents of troubled children said that they had searched for months and sometimes years to find the right therapist.
“The point is that not everything is A.D.H.D., not everything is bipolar, and it doesn’t happen like you see in the movies,” said Dr. Carolyn King, who treats children in community clinics around Detroit, and has a private practice in the nearby suburb of Grosse Pointe Farms.
“Kids often have very subtle symptoms they can mask for short periods of time,” Dr. King said, “and the most important thing is to observe them closely, and get a complete history, starting from birth and straight through every single developmental milestone.”
She added, “A speech delay can look like anxiety,” an obsessive private ritual like mania.
Or struggling children, in the end, may look only like themselves, with a unique combination of behaviors that defy any single label. Camille Evans, a mother in Brooklyn whose son’s illness was tagged with a half-dozen different diagnoses in the last several years, said she concluded, after seeing several psychiatrists, that the boy’s silences and learning difficulties were best understood as a mild form of autism.
“That’s the diagnosis that I think fits him best, and I’ve just about heard them all,” Ms. Evans said.
The label is not perfect, she said, but it is more specific than “developmental delay” — one diagnosis they heard — and does not prime him for aggressive treatment with drugs like attention deficit disorder or bipolar disorder would. He has not responded well to the drugs he has tried.
“Most important for me,” Ms. Evans said, “the diagnosis gives him access to other things, like speech therapy, occupational therapy and attention from a neurologist. And for now it seems to be moving him in the right direction.”