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 as dyslexia.

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 first.

"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 daily activities.

Castellanos details state of ADHD science.

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, NIMH.

"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.

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