On their terms

FOR Devin Barclay, life with attention-deficit disorder has been a winding road. And seven years after he quit taking medication for the condition, “it’s still winding,” he says with a laugh.

But as the 23-year-old navigates his way into adulthood, he’s managed to pay the roadside distractions a little less attention. And he’s learned a thing or two about getting himself from one destination to the next without taking major detours.

In 1990, when Barclay was 7, he was diagnosed with ADD and began taking Ritalin -- a stimulant medication that he and his parents referred to as “the thinking pill” -- to help him sit still and pay attention in class. Over the next decade, almost 2 million American boys and girls were similarly diagnosed, an unprecedented growth of a medical condition that, before 1990, had been so rarely recognized that the national Centers for Disease Control and Prevention did not even track it.

Today, the children on the leading edge of a wave dubbed by some “the ADD generation” have reached the cusp of adulthood. And as they take on jobs or college, care for themselves away from home, enter into adult relationships and become parents, these newly minted grown-ups are carrying out a massive natural experiment.

It seems like only yesterday they were fidgeting in their seats, sprinting around their classrooms and daydreaming their way through addition and subtraction. Most, just like Barclay, struggled through elementary and middle school on Ritalin as the practice of medicating attention problems in children took off steeply in the United States: Between 1990 and 2005, production of the two stimulant compounds most used to treat ADD -- methylphenidate and amphetamine -- increased seventeenfold and thirtyfold, respectively.

Now many are choosing to do without the drugs that profoundly affected their experience of childhood and school and, in many cases, made it possible for them to learn alongside other kids in mainstream classrooms.

It is one of the first decisions of their adult lives. Mostly, it was parents who dictated whether and when they would start medications to sharpen their focus. But the decision to stay on or go off these drugs is one that these teens and young adults have made for themselves -- with little research to guide them.

Whether the results will be momentous or slight will be more than a personal test for each of them; it is uncharted terrain, also, to researchers in the field of attention problems who are watching intently for answers -- and hoping for better guidance for future generations of ADD sufferers.

American society remains deeply ambivalent about the diagnosis of ADD, a catch-all term used more commonly in the past that includes today’s more well-known attention-deficit hyperactivity disorder. (Children diagnosed with ADD typically have difficulty focusing and paying attention. Those with ADHD are physically frenetic as well.)

Almost three decades after the psychiatric profession first detailed the condition in its diagnostic manual, nagging questions remain: Does medicating a child with ADD help that child’s well-being in the long term? Are there any negative consequences? And must it be a life-long prescription?

Although most mental health professionals believe that about 2 in 3 children with ADD will continue to contend with the condition as adults, the truth is that “we have very few firm numbers,” says Dr. Xavier Castellanos, a leading ADD researcher at New York University.

In short, “There are more questions that are unanswered than are answered,” says Lisa L. Weyandt, a psychologist at Central Washington University who studies college-bound kids with ADD. Nobody, she says, knows how these fledglings will fare away from home and neighborhood schools, and whether the medications that appeared to help them in grade school will continue to be of use to them as adults. “They are,” Weyandt says, “in uncharted territory.”

Schooling in adulthood

One reason that the terrain is unfamiliar is that this is the first generation of ADD kids for whom effective medication and accommodations for those with learning disabilities have made college a widespread possibility. “They’re here and they’re here in increasing numbers,” Weyandt says. Barclay, now a freshman at Ohio State University, is typical of such youths in many respects.

When he was little, he says, his energy was so prodigious that his father had to sit at his bedside at night and hold his eyelids shut to help him fall asleep. “I was always going at 100 miles per hour

Looking back, he acknowledges that Ritalin did help him academically. But he also felt that it blunted his natural sociability, made it “hard to feel passionate about anything.” And the same intensity of focus that helped him in class, he believes, impaired his instincts on the soccer field -- a troublesome side effect for a rising soccer star.

He quit Ritalin as a freshman in high school. Off the drug, he says: “I felt more like a happier person. I just felt more like myself,” voicing an observation heard again and again among young adults who abandoned their ADD medication.

He has no interest in going back. And he doesn’t believe that he needs to. The symptoms that first prompted his parents to put him on Ritalin when he was 7 -- the nonstop physical drive, the impulsiveness, the inability to focus in school -- have abated with age, he says. A stubborn restlessness of mind remains, but the ADD has changed, and so has he. Adult life has a wider range of choices than grade school offered. He hopes that if he makes the right ones, he can make it all work.

Barclay has got plenty of company, according to Mariellen Fischer, a professor of neurology at the Medical College of Wisconsin. Among the roughly 150 children she has tracked well into their 20s, “discontinuation of the medication [has been] by far the vast norm,” she says. Of those diagnosed and medicated for ADD as children, she estimates, about 9 in 10 are off those medications by the time they reach 21.

By high school, she adds, the most glaring of ADD symptoms -- the inability to sit still -- has typically eased. And, just like their peers without ADD, these young patients are driven to question the judgment of the people that have been in charge of their lives.

Those challenges are naturally focused on the parents, teachers, physicians and therapists who played roles in labeling them different and putting them on medication that is a daily reminder of that judgment.

They want, overwhelmingly, to feel normal, Fischer says -- to be like other kids who can make it through a school day without being chided for daydreaming or sent to the nurse for a midday pill. Many, she says, are keen to try life without the medications to prove something: “to feel that your success, your accomplishments, your failures are truly your own and not the product of medication.”

For parents, this moment of awakening can be a frightening challenge. But experts warn that it’s better to brace for change and have a plan than to dig in or -- worse -- be taken by surprise.

“You can tell a 7- or 8- or 9-year-old to take his medication and he will. By 12 it starts to get tricky, by 14 it’s difficult, and by 16, it’s impossible,” Castellanos says. “You get into issues of autonomy and [charges like] ‘You’re just trying to drug me.’ ”

Castellanos says that a child often first questions his or her medication during the middle school years. When that happens, the child’s parents and a counselor or physician should propose a “controlled break” of several weeks from medication, he recommends. During the break, the parents and counselor can nudge an adolescent to answer questions to determine whether there were benefits from the medication: Are classes less interesting than they were on medication? Does homework get done as readily? Is the child more forgetful about school assignments or appointments, and do friends and family notice a difference in personal interactions?

“When they’re on treatment for a period of time, they may forget what it’s like being off treatment,” says Sharon Wigal, a psychologist with UC Irvine School of Medicine whose research and clinical work focuses on adolescents and adults with ADD. Unless they’re asked to cue in on the symptoms, she says, many adolescents are quick to believe that age has cured them of the disorder that has set them apart from peers and made life difficult.

Yet there is reason to believe that adulthood is no cure for ADD, Wigal adds. In recent years, ADD diagnoses among adults have grown sharply, while the proportion of children diagnosed has held steady between 6% to 7% of the population. Though the numbers are uncertain, many ADD experts estimate that as many as 3.5% of adults could have the disorder.

A lingering issue

What few studies there are suggest that ADD often still causes problems after kids grow up. For 13 years, Fischer and her colleague Dr. Russell A. Barkley tracked 147 children who had been diagnosed with ADD by age 7. They compared them with a set of kids from the same neighborhoods without ADD.

In 2005, they reported that the young adults with a childhood ADD diagnosis were more likely to have dropped out of high school and to have been fired from jobs. They were more likely to have had sex earlier and became parents at a younger age than their non-ADD peers. They had higher credit card debt and fewer savings, and were far less likely to attend college.

Young adults with ADD also appear to have more motor vehicle collisions and traffic citations and are more likely to experiment with illegal drugs. But the data suggest that ADD sufferers who took prescribed medication were less likely than those who did not to use illegal drugs.

Beyond that, the story is fuzzy because children that Fischer and Barkley tracked did not sort themselves into neat research categories. Some of the children diagnosed with ADD did not take medication. Others took medication steadily. Most took them for a while and then, at various ages, quit.

And that leaves researchers in the dark. They don’t know whether taking medication for some stretch of time, or during some critical period, will offer protection against these later, adult ills -- even if, as adults, people decide not to medicate themselves any longer.

In that sense, Devin Barclay’s peers are writing the textbook on ADD as they go along.

“We are the first generation of Ritalin kids,” says 31-year-old David Cole who, as an undergraduate with ADD at Brown University, co-wrote “Learning Outside the Lines,” a book about navigating college with a learning disability. (He’s now an up-and-coming artist based in Rhode Island.) Certainly, such medication has made success in life a possibility for kids like himself, he adds -- but once school is out, “it’s whatever works for you,” he shrugs.

At 23, Devin Barclay has begun to learn how to harness his attention on tasks that he needs to accomplish. He wouldn’t dream of bringing his laptop to a busy coffee shop to do homework, or to have the television on while reading. He plans to do his school work in short spurts of no more than an hour, and is careful to sequence his obligations -- term papers, bill paying, soccer coaching duties -- so they don’t scramble his attention.

And he recognizes the signs of a mind gone astray during a task. That’s when he ties on his sneakers and takes a long run “to re-center” himself, as he puts it.

In a nod to his ADD, Barclay says he accomplishes many of his grown-up tasks in pinball fashion, bouncing haphazardly from paying a bill to tending the home he owns to walking his dog.

“I get things accomplished. It’s probably not as efficiently or as quickly as other people, but it happens in my own way,” he says.

There have been detours. In 2000, one year after he quit taking Ritalin, Devin left high school after his sophomore year, intent on playing soccer professionally. At 18, he signed on with Major League Soccer and spent the next four years playing forward for teams in Tampa Bay, Fla.; San Jose; Washington, D.C.; and Columbus, Ohio. By 2005, he had earned his high school equivalency degree and also reached the end of his soccer career.

Now he’s a freshman at Ohio State University and older than most of his classmates -- but much wiser, he says, for the winding road that has led him there.

Dr. Lawrence Diller, a San Francisco psychiatrist and author of the 1998 book “Running on Ritalin,” says that for children with ADD, the path into adulthood is seldom a straight line. In 25 years in practice, Diller has prescribed ADD medication to hundreds of kids. But in a new book, “The Last Normal Child,” he raises concerns about the effect on society and children when parents, schools and the medical establishment reach too easily for such medication.

Diller calls it “unduly pessimistic” to believe that two-thirds of kids with ADD will continue to suffer symptoms negative enough to require medication as adults. By a young adult’s mid-20s or so, he believes that many who were diagnosed with ADD as children have developed strategies, as Devin Barclay has, to work around their weaknesses. And they are better equipped to answer the question -- to medicate or not? -- with a clear sense of their adult selves.

Diller feels that those diagnosed with ADD -- as well as their parents and counselors -- should revisit “the bargain” that many made with Ritalin and other such drugs as children as they meander through their early adult years. In return for the often-reported side effects of the medication -- sleep difficulties, appetite suppression, a “not quite me” feeling -- children and their parents expected ADD medication to help them succeed in school at a time when sitting still and compliance with rules was highly valued.

But in the adult world, young people with ADD have far wider choices, and they should make them with an awareness of their strengths and their weaknesses, Diller says -- not what others expect of them.

Using medication “to take octagonal kids and fit them into square holes” may be acceptable in grade school, he says. But “they will be patients for the rest of their lives,” he adds, if they pursue fields that require enormous attention to detail or intense concentration on matters that do not fire their interest.

It is a lesson that Barclay understands well by now. He is gravitating toward hospitality management or maybe psychology -- both social fields that play to his outgoing nature.

“The whole idea of doing what you love and finding what you enjoy doing is really important,” he says. “But sometimes, there’s pressure coming from your parents or thinking you need to make a lot of money.”

Those expectations, he says, can tempt someone with ADD to pursue a career or course of study that highlights weaknesses rather than playing to strengths that often come with the condition -- such as creativity, gregariousness and quick response time.

It can be a formula for disaster, he says.

“If you have ADD, eventually that’s going to really take hold. If you’re doing something you don’t enjoy, you’re screwed.”

melissa.healy@latimes.com

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Find out more

For more information on attention-deficit disorder and its treatment, consult these resources:

* The National Institute of Mental Health. www.nimh.nih.gov/publicat/adhd.cfm and www.nimh.nih.gpv/healthinformation/adhdmenu.cfm.

* “Taking Charge of ADHD: The Complete Authoritative Guide for Parents,” by Russell A. Barkley (1995, Guilford Press).

* “Driven to Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood,” by Edward M. Hallowell with John J. Ratey (1995, Touchstone Press). Also by Hallowell: “Delivered From Distraction: Getting the Most Out of Life with Attention Deficit Disorder” (with Ratey, 2005, Ballantine Books) and “Positively ADD: Real Success Stories to Inspire Your Dreams” (with Catherine A. Corman, 2006, Walker & Co.).

* Children & Adults with Attention Deficit/Hyperactivity Disorder (CHADD) is the leading nonprofit patient group, providing support groups through local chapters, advocacy and research dissemination, conferences and a magazine. www.chadd.org.

-- Melissa Healy