The study challenges a widely persistent perception of a time-limited condition occurring mostly in childhood. Indeed, one of the earliest names for attention deficit/hyperactivity disorder was “a hyperkinetic disease of infancy,” while its most common poster child has long been a young, White, disruptive male.
Previous research has suggested the condition essentially vanishes in about half of those who receive diagnoses. But in recent years, increasing numbers of women, people of color and especially adults have been seeking help in managing the hallmark symptoms of distraction, forgetfulness and impulsivity.
By the most recent estimates, 9.6 percent of children ages 3 to 17 have been diagnosed with ADHD. Yet researchers report that only 4.4 percent of young adults ages 18 to 44 have the disorder, suggesting that if the new estimates are valid, there may be some catching up to do.
Sibley’s paper paints a picture of an on-again, off-again condition, with symptoms fluctuating depending on life circumstances.
“The obvious implication for doctors is that they should be monitoring patients who seem like they’ve gotten better, and keep having them come back,” Sibley says. “It’s also good for people with ADHD to be prepared when they make major transitions. Your environment can make a big difference. Maybe you’ve done well in high school, but now you’re in college. Or you were doing well in one job and now you’ve been promoted, and there are new demands. It’s important to understand that it’s normal to have some times in your life when things feel more manageable, but there may be others when they feel more out of control, and that’s the time to seek professional help.”
The paper, published in the American Journal of Psychiatry, provides the latest findings from the Multimodal Treatment of Attention Deficit Hyperactivity Study (MTA), a federally funded project that began in 1998 and followed nearly 600 children ages 7 to 9. The effort, one of the largest and longest of its kind, has engaged leading ADHD researchers at eight different sites throughout the nation, studying the same group of children until they were about 25.
Its conclusions aren’t entirely new. Russell Barkley, a prominent author and authority on ADHD and clinical professor of psychiatry at Virginia Commonwealth University School of Medicine, found slightly smaller rates of persistence in his own research, the Milwaukee Longitudinal Study of Hyperactive (ADHD) Children, which began in 1977.
Barkley followed a smaller group — 158 children who had been diagnosed with ADHD and 81 who weren’t — for 20 years, until they were 27 — and found that only 14 percent could be considered to have recovered by that age. He published the results in his book, “ADHD in Adults: What the Science Says,” in 2007. His findings weren’t broadly publicized, however, and apparently didn’t significantly change the consensus.
“It isn’t yet how ADHD is consistently discussed, leading often to misunderstanding and undertreatment,” says developmental pediatrician Mark Bertin, assistant professor of pediatrics at New York Medical College.
Sibley, who called Barkley’s work “foundational” for her own, says other researchers monitored subjects only once in childhood and once as adults, whereas her team checked in every two years.
“That’s how we caught the fluctuations,” she says. “Half of children with ADHD might appear to be symptom-free if you look at everyone at age 18 for example. However, for most of these symptom-remitted cases, ADHD will come back within four years.”
Experts have long recognized that stress and poor sleep can worsen ADHD symptoms, Sibley says. In future work, she says she hopes to use the MTA data, which include lengthy interviews with the subjects, to provide a more nuanced view of potential triggers — and possible supports. What sorts of schools and jobs are most helpful? What kinds of relationships are aggravating — or nurturing?
Barkley says a closer look at adults with ADHD, who have been studied much less than kids, may help refine the diagnostic criteria, which are focused on childhood behavior.
In children, the disorder is often more easily spotted, especially in hyperactive boys who may be running around the room and even climbing on desks. While most adults may have learned to restrain themselves from that telltale behavior, they may have trouble with conduct, such as blurting out things they didn’t mean to say and taking too long to make decisions.
The new findings don’t mean that everyone diagnosed as a child needs to rush to see their doctor, Sibley says.
“It’s all about whether the symptoms are causing a problem in your life,” she says. “That’s when you need to ask for help.”