New
York Times
Nov
11, 2006
includes
an article: "What's Wrong With
a Child? Psychiatrists Often Disagree"
by
Benedict Carey
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."
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