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At age 5, Molly began keeping a secret about herself
that she really didn't believe. Sure, she and her family, and even
her teacher, had seen the signs. And yes, she often could feel
her schoolwork suffer. But despite the fact — and in large
measure, because — her father was a pro at identifying the
symptoms in other children, Molly refused for years to accept what
adults in her life were saying about her.
||Dr. Alan Zametkin spoke at
the recent STEP forum on attention deficit/hyperactivity disorder.
"Her mind seems to wander in the middle of a task and during instruction," her
first-grade teacher wrote in a parent-requested evaluation. "Molly
is easily distracted." Math — particularly when tackled in
small groups — proved most challenging.
Molly was diagnosed with attention deficit/hyperactivity disorder
that year, and now at age 17½ she was on stage at an NIH STEP
forum sharing the secret she'd been too afraid would label her
as one of her dad's "mental patients." The picture of a healthy,
successful high school student/athlete, Molly gave one of four
presentations on ADHD at a Jan. 10 conference in Natcher auditorium.
"I have regrets about the way I handled my ADD diagnosis," Molly
admitted, recalling that at first, her parents tried to ease her
symptoms with behavior modification. That's because Molly had refused
all medication. Taking ADHD drugs, she reasoned, would mean she
had the disorder. But by third grade, Molly was taking a prescription
stimulant to manage the ADD. (ADHD and ADD often are used interchangeably.
Although many girls with the disorder, like Molly, do not seem
to experience the hyperactivity component, the disorder officially
is known now as ADHD.) She seemed to accept the reality of her
condition in 8th grade, when she no longer had to be reminded to
take her meds. It took the youngster several more years before
she felt comfortable enough to reveal her ADHD to peers, but she
had realized the disorder was affecting her life.
"I felt as though my ADD was affecting my future and my ability
to learn," Molly said.
Significant Effects on Family, Society
NIMH's Dr. Judith Rumsey, who moderated the forum, put the disorder
in perspective. "ADHD is highly heritable and spans a range of
severity and varies in its presentation," she said. It affects
about 5 percent or more of school-age children in the U.S., but
is by no means solely a kid's disorder. Contrary to popular belief,
many children do not outgrow it, but continue to have impairing
symptoms through adulthood. "Chances are that you personally know
someone with ADHD — a child, adolescent, or adult, maybe
a coworker," Rumsey said.
||Presenters at the ADHD forum
include (from l) Dr. Alan Zametkin, Molly Zametkin, Dr. Maureen
Donnelly, Dr. Xavier Castellanos and Dr. Judith Rumsey.
The effects of the disorder are significant for those who have
it as well as for their families and communities. Consider, for
example, that 50 percent of adults with ADHD are also smokers. "It's
one of the ways people self-medicate for ADHD," pointed out Dr.
Xavier Castellanos, director of the Institute for Pediatric Neuroscience
at New York University. "It's a very addicting way to treat oneself."
Motorists with ADHD are more prone to car accidents, according
to Dr. Alan Zametkin, an NIMH senior staff physician and Molly's
dad. In addition, the disorder often results in accidental injury.
Workplace issues frequently emerge as coworkers with ADHD may tend
not to finish projects they start. Problems in marriages and other
personal relationships are also reported more by couples in which
a partner has the attention disorder. About one-third of people
with ADHD may also struggle with another learning disability, such
Diagnosis Is Judgment Call
One challenge to understanding ADHD is the way it is diagnosed,
noted Zametkin. So far, there's no blood test or brain scan to
clue in doctors, he said. In fact, there is no biological test
of any kind to confirm the disorder. Instead, to determine if someone
has ADHD, doctors use several criteria:
- Symptoms must be present for 6 months;
- Some symptoms should be noticed in children before they are
7 years old;
- There needs to be significant impairment or performance problems,
and the problems should be seen in more than one setting (for
example, at home and at school or the office); and
- Other mental disorders — anxiety, obsessive-compulsive
and substance abuse, for instance — should be ruled out
"The key is the word impairment," Zametkin explained. "We need
impairment to make a diagnosis. Some kids have it and are not diagnosed
with it because their environments have been so modulated that
the ADHD is not an impairment. If it's mild, we'd never treat it.
It requires a fair amount of judgment."
'Fidgety Phil.Won't Sit Still'
Doctors rely heavily on information contained in a person's medical
and family history, and school report cards from kindergarten through
grade 5, to decide who has ADHD. The signs of hyperactivity are
easy to spot: a person squirms excessively, can't stay seated,
runs/climbs too much, can't play or work quietly, talks all the
time, interrupts conversations and can't wait turns. Symptoms of
inattention may be more subtle: An individual is careless, doesn't
listen, can't organize, loses important items, is easily distractible,
doesn't follow tasks through to completion and is forgetful in
|Castellanos details state of
In adults, the most telling observations often come from spouses
and other family members sharing daily life. Not surprisingly,
perhaps, children and teens are not likely to see attention problems
in themselves, although they may notice the results — poor
performance on school assignments, for example.
These days, those involved in living with and treating ADHD often
have a foe in addition to the disorder: public opinion. Some people
think ADHD is an overdiagnosed ailment brought on mainly by a 1980s/90s
society that overexposes its youngsters to home videos and computer
games. Critics charge that U.S. pop culture overdiagnoses the ADHD
and then compounds the problem by overmedicating kids believed
to have it. After all, skeptics point out, ADHD only became "trendy" in
the last few years or so, right?
Wrong, Zametkin countered. "I would argue that kids who have this
problem have been around probably for centuries," he said. "Clearly
this is not a new disorder or a product of high technology or pharmaceutical
companies." He cited the first known description of ADHD dating
back to an 1844 poem, The Story of Fidgety Phil, by German
psychiatrist Heinrich Hoffmann. By 1903, U.S. pediatrician George
Still was describing overactive children with discipline problems
who seemed to have little control over their impulses. He attributed
the disorder to a lack of morals, said Zametkin. In 1937, Dr. Charles
Bradley reported remarkable improvement in the school performance
of children with behavior problems who were given the stimulant
Benzedrine. His work set the standard for treating ADHD with stimulants.
Nowadays the disorder — and its treatment — are talked
about so commonly that myths and controversies often cloud understanding.
One particularly persistent myth is that some foods — for
instance, chocolate or sugar — cause ADHD. Zametkin said
researchers have not been able to link any dietary products to
the disorder. Another unproven belief is that more boys than girls
have ADHD. Not necessarily true, said Zametkin. It may just be
that more boys than girls are referred for treatment due to bias.
Truth in Treatment
There is also skepticism in some circles about putting kids on
prescription drugs to combat their ADHD symptoms, but the fact
is ADHD medication works, acknowledged Dr. Maureen Donnelly, a
former NIMH fellow and private-practice psychiatrist who specializes
in treating ADHD. Research on ADHD drugs has taught us a lot in
the past 30 years, she noted. Just 5 years ago, there were only
four medications to treat ADHD; now there are 14. A patch that
delivers therapy through the skin is also on the way, she reported.
"Medication treatment is one of our most powerful tools," she
stressed, sharing results of two NIMH-funded, multi-site clinical
ADHD drug trials that together studied 700 children with the disorder.
Treatment has to be multifaceted, however. In addition to a drug
regimen, if warranted, there should also be educational and vocational
interventions for both the person with ADHD and the family. Psychosocial
treatments and behavior modification, as well as vigilant monitoring
of symptoms and function at home and school or workplace are also
important components of effective therapy.
"We need to carry out what we know better," she said. "And we
have to deliver the medication in the best possible way."
Castellanos agreed, noting "we don't have the best study that
would show what treatment does over the long term — we may
never get that — but we do have lots of evidence that lack
of treatment is not a good thing."
Where Are We in ADHD Science?
While research on ADHD treatment has progressed a long way since
the days of Benzedrine, there are a lot of things we still don't
know about the disorder itself, according to Castellanos, who headed
a unit on ADHD in Dr. Judith Rapoport's Child Psychiatry Branch,
"We still don't know where in the brain the dysfunction happens," he
said. However, researchers do know that on average, people with
ADHD have brains that are 4 percent to 5 percent smaller than non-ADHD
brains. Also, MRI studies strongly point to the cerebellum, which
integrates sensory perception with motor output.
We also know from studies of twins and of families with adopted
children that ADHD is strongly inherited, Castellanos explained. "About
80 percent of causal factors are genetic and about 20 percent are
environmental," he said. As in most ailments, environmental and
genetic factors interact to cause the disorder. For example, he
said, smoking during pregnancy increases the likelihood of having
an ADHD child. However, a woman who smokes while she's pregnant
is probably also carrying genes that increase the risk of being
a smoker and of having ADHD. "The environmental interactions cannot
be disentangled" from the genetic factors, he stressed. Purely
environmental factors — brain injuries sustained in a car
wreck, for example — can cause ADHD as well.
Although researchers know genes play a critical role in ADHD development,
the precise genes involved are not yet known. Castellanos said
scientists suspect genes related to function of dopamine or norepinephrine,
two naturally produced substances that affect brain function. In
addition, researchers are looking at vulnerable brain relay points
between feeling and thinking, and thinking and acting. Scientists
think these points could be ADHD targets.
"We don't have the whole picture yet," he concluded, "but we have
more and more of a sense that we really are working out this gigantic
multidimensional puzzle that is ADHD."
NIH'ers can see the entire forum online at www.videocast.nih.gov.