Driven To Distraction
Adults are as scatterbrained as kids. And the disorder may be rooted in basic biology
When Nancy Quinlan was in her early 20s, her 6- year-old son was bouncing off walls. His high intelligence simply couldn't compensate for his utter lack of self-control, and no form of discipline seemed to help. When she finally, in desperation, took him to a doctor, she was told that her son had something called minimal brain dysfunction with hyperactivity. The doctor warned her, however, that nobody--not family, not teachers, not even pediatricians--would take the little-known diagnosis seriously. He nonetheless gave Quinlan a prescription for Ritalin to help calm her son's fevered mind.
That was 40 years ago, and that physician was way ahead of his time. Quinlan was, too, in a way: As she filled her son's prescription, she began wondering if this pediatric drug might possibly help her as well. An intelligent woman, she had gone through her school days in utter agony, always struggling to pay attention or to organize herself and her thoughts. She suffered from low self-esteem, and her only pleasure came from thrill-seeking activities like drag racing. Was it possible that she shared her son's affliction? She took a dose of the Ritalin and was stunned. She remembers thinking: "This one pill is what I have been looking for all my life. I can actually concentrate."
Despite that epiphany, she and her son suffered for years after. Well-intentioned friends and family berated Quinlan about dangerous drugs and addiction and crack-pot diagnoses. She never gave her son another dose nor took one herself until more than 20 years later, when another one of her seven children was having trouble in school. This time the neurologist gave her a book on attention deficit disorder (ADD), and she recognized herself immediately. "I was 49 years old before I found out," says Quinlan. "And my greatest regret is that it took so long."
Nancy Quinlan is one of the nearly 9 million adults who experts estimate have either attention deficit disorder or attention deficit hyperactivity disorder (ADHD). Both disorders involve inattention and impulsiveness, but hyperactivity is present only some of the time. While people's stories vary widely, Quinlan shares many experiences and traits with other adults who have the condition: a long history, often extending back into childhood, of inattention, lack of focus, underachievement, and low self-esteem. Quinlan's epiphany is also typical: Many adults with ADD first learn about the disorder when a child is diagnosed. And medication can often lead to a dramatic reordering of a once chaotic life, one that had been punctuated by traffic accidents, unstable job performance, troubled marriages, substance abuse, and often confounding disorders like anxiety or depression. The diagnosis can come at any age or stage of life. Indeed, a grandmother was diagnosed at 82 and happily reported to her doctor that she was no longer painfully restless while reading stories to her grandchildren.
Old and young. ADHD is the most common psychiatric diagnosis for children, affecting nearly 7 percent of school-age kids in the country. While it was once thought that children outgrew the disorder--thus leading to the erroneous impression that adults couldn't be afflicted--it's now known that nearly half of kids with ADHD never outgrow it. Still, while 4 percent of American adults suffer from the disorder, less than 1 in 4 of them knows that he or she has it.
This is changing. Recently, doctors are reporting skyrocketing numbers of adults who believe that they may have the disorder. This may be a result, in part, of better information on the disorder. For example, descriptions of the malady now appear in ads from pharmaceutical giant Eli Lilly, which makes the new drug Strattera. The advertisement asks, "Are you disorganized? Do you procrastinate, fidget, lose things?" Strattera is the first nonstimulant drug for ADD and the only drug that is approved by the Food and Drug Administration for adults with the disorder. Sales of the drug topped $370 million last year. Still, as Thomas Spencer, assistant director of the Pediatric Psychopharmacology Clinic at Massachusetts General Hospital, says, "When I give a talk about it and describe the disorder, I say, `Now you all think that you have it.' The biggest controversy is that so many features of ADHD seem so common a variant of normal. But in fact, people who have the full-fledged disorder have many of the symptoms all the time."
While ADD has moved from the classroom and the pediatrician's office to boardrooms and master bedrooms, a number of questions remain. What do we actually know about the biology underlying attention disorders? Is this the newest strategy, as critics contend, for pharmaceutical companies to expand their market by transforming normal variants of behavior and temperament into a pathology requiring medication? Or is it a real and disabling brain disorder that requires treatment? Even though the legitimacy of the ADD diagnosis in children has been well established, how is an ADD adult different from the inattentive or hyperactive child? Given the complexity of adult lives and relationships, and the coping mechanisms developed over years of managing the disorder without medication, how is it possible to determine if someone has ADD or one of the many accompanying disorders with similar symptoms?
Because ADD has only recently been recognized in adults, the typical internist has little experience diagnosing and treating it. In a 2003 Harris Poll on physician perceptions of adult ADD, prepared for the New York University School of Medicine, 77 percent of physicians said adult ADD was not very well understood by the medical community. Seventy-two percent said it was more difficult to diagnose adults with ADD than it was to diagnose children. Three out of four physicians said they would take a more active role in diagnosing and treating adult ADD if there were effective prescription medications that were not stimulants or controlled substances (box, right). When an adult patient comes in complaining of memory problems, inattention, and difficulty in staying focused and completing tasks, physicians are far more likely to consider depression or anxiety as the cause rather than ADD. And for good reason. "The problem is that inattention is to psychiatry what fever is to medicine," says Paul Wender, a psychiatrist who began to explore adult ADD as far back as the 1970s.
Threesome. In fact, inattention is only one in a triad of symptoms that are in themselves subject to interpretation: an inability to sustain attention, impulsive behavior, and, sometimes, hyperactivity. According to the DSM-IV, the diagnostic bible of the American Psychiatric Association, symptoms can range from frequently losing things to persistent difficulty in completing tasks. Moreover, contrary to nearly every other medical or psychiatric disorder, in which adult pathology has been used as a window into childhood problems, ADD reverses the model. Children with ADD have been far more thoroughly studied than adults and even in the DSM--which is used to diagnose adults as well as children--a number of the symptoms involve points of reference straight from elementary school. For example, a symptom of inattention is "often loses things for tasks or activities (e.g., toys, school assignments, pencils, books, or tools)." Hyperactivity is displayed when the patient "often leaves seat in classroom or in other situations in which remaining seated is expected" or "often runs about or climbs excessively in situations in which it is inappropriate." The description includes a parenthetical nod to adults: "(in adolescents or adults, may be limited to subjective feelings of restlessness)." With this peculiar age bias, many adults with the disorder can find themselves falling through diagnostic cracks.
No one knows for sure what causes ADD, but it is generally thought to be a complex alchemy of genetics, environment, and biochemistry. "Some people can have a stronger genetic load to their condition, some a stronger environmental load, and for others, obstetric complications at birth could contribute to the disorder," says Stephen Faraone, a clinical professor of psychiatry at Harvard Medical School. Those obstetric complications include the consequences of mothers' smoking: Studies of pregnant rats and mice, for example, have shown a direct association between chronic exposure to nicotine and hyperactive baby mice and rats.
Pam Rossi never smoked, but she will always wonder if the high forceps delivery 31 years ago of Eric Johnson, the oldest of her three sons, could have been responsible for his subsequent ADD. The birth was difficult, and he was starved for oxygen and bruised around the neck. Rossi, a slender and chic interior designer, pulls out a worn baby book from 1972 when Eric was born. He was 9 pounds, 8 ounces at birth. At the 6- month milestone, Pam Rossi wrote: "Eric never sleeps." In retrospect, that observation was diagnostic of early ADD. While Eric was clearly a brilliant child, reading early and voraciously, with enormous artistic talent, he foundered in school. Rossi took him to various specialists, all of whom had different notions of the problem. Because Eric was inattentive, rather than hyperactive, and because understanding of the disorder was just beginning, the specialists who saw Eric did not diagnose him properly. All the difficulties began to take their toll, and when Eric was in ninth grade, his jaunty intellectual self-confidence began to be replaced by creeping self-doubt. He knew he was intelligent, but he still couldn't perform. His ninth-grade teacher suggested to Rossi that he switch to vocational education classes. "You can't do this to him," Rossi said to the teacher. "This is a child who reads, who loves academics." She took Eric for another evaluation and finally received the diagnosis and a prescription for 10 milligrams of the stimulant medication Dexedrine. His performance at school was transformed, and his art became somehow more disciplined.
Russell Barkley, a professor at the Medical University of South Carolina and author of numerous works on ADHD, describes the disorder as "a developmental failure in brain circuitry that underlies inhibition and self-control. This loss of self-control in turn impairs other important brain functions crucial for maintaining attention." Many studies suggest that there is reduced frontal lobe activity in ADD, which may in turn be triggered by decreased activity in the basal ganglia, a deeper part of the forebrain that generates two important neurotransmitters called dopamine and norepinephrine. "Most people don't have any clue about how complicated this disorder is," says Thomas Brown, the associate director of the Yale Clinic for Attention and Related Disorders. As the story of Eric Johnson illustrates, the disorder often has nothing to do with hyperactivity or with intelligence; it can afflict both a genius and a person who is functioning at a 3-year-old level. "Everyone with this disorder has a few domains where they function perfectly well. So it looks like a problem of willpower, but in fact it is not willpower; it is fundamentally a chemical problem," Brown says. Increasingly, brain imaging studies are also pointing to the cerebellum, which has an important role in cognitive processing, coordination, and movement.
What's "normal"? Like most mental disorders, attention disorder is a "spectrum diagnosis" with widely varying symptoms. This makes it a diagnostic challenge even for the most skilled clinicians. Is this attention problem really disabling or merely within the parameters of "normal"? "Where does the disorder begin?" asks Barkley. "It begins where impairment begins. You may have a high degree of ADD symptoms, but it just means you have a sparkling personality because there is no impairment."
Impairment for children can be poor school performance, poor relationships with peers, and difficulty in sports or clubs. Adults have far more varied and complicated arenas for both achievement and failure. "I treat an executive who is superficially extremely successful," says Lenard Adler, professor of clinical psychiatry at the New York University School of Medicine. "And yet he moves from crisis to crisis at work. His family finds him totally unavailable at home. And he has no social life outside of work. At first blush, one could look at his material success and say, `How can he have impairment?' At the same time, managing his life this way has taken a toll on everything."
Most important, however, is that the impairment is not episodic, not restricted to a single bad work experience or one year of not being able to file taxes on time. The crucial and telling component in diagnosis is a lifetime of difficulties. "The impairment of life activities is pervasive and tied to universal life activities," Barkley explains. "Activities like family functioning, developing peer relationships, occupational functioning, financial management, and having and raising children. That is what distinguishes this disorder from mere problems of living or extreme personalities."
Depending on the level of impairment, however, some of those afflicted can be very skilled at managing their problems. Perhaps the structure of grade school ensured some success, while the greater independence in middle school brought problems to the surface. One provocative study reveals that the higher the intelligence, the later the ADD diagnosis is likely to occur. Intelligent people manage to come up with a huge number of coping strategies.
Further complicating diagnosis is that 3 out of 4 adults with ADD have something else wrong with them. So the clinician must discern the disorder from other problems occurring at the same time. Mood disorders like bipolar disorder, depression, and anxiety are present in from 19 to 37 percent of the cases of adult ADD. Nancy Quinlan, for example, struggled with terrible depression before realizing she had ADD. Alcohol abuse affects 32 to 53 percent of people who have ADD, possibly because the disorder was not diagnosed in childhood and the adult has turned to self-medication. Research has shown that the more concurrent problems that appear in childhood--like dyslexia or learning disabilities--the more likely that ADD will continue into adulthood.
For clinicians, the trick is to tease out the various strands of the disorders and treat each one. Depression and anxiety are disorders that often wax and wane in their severity. ADD symptoms never abate. "A person cannot remember never being like this," says David Goodman, director of the Adult Attention Deficit Disorder Center of Maryland. "A person may be depressed for months, but they still remember what it was like not to be depressed. This makes the diagnosis the critical first step to treatment." But if someone has a host of problems--substance abuse, depression, and possible ADD--what is a clinician to do? Each disorder must be treated singly; beginning with substance abuse, then the mood disorder, then if symptoms persist, ADD.
And yet, even with the increasing interest in this subject, and the burgeoning research on adults, living with distraction proves to be a tremendous challenge for everyone. Nowhere are the challenges more apparent than in that most adult of all relationships: a marriage.
Last month, six couples sat in a relaxed circle, the waiting room of the Hallowell Center in Sudbury, Mass. They were gathered for a group therapy session for couples in which one or both partners have ADD. Ranging in age from their early 20s to late 50s, the group members were generally educated and upper-middle-class. They also revealed the variations in these relationships: one hyperorganized spouse and one ADD spouse, one comfortably disorganized spouse and one ADD spouse, and one diagnosed and one apparently undiagnosed ADD spouse. Specialists in associative mating would have found this group fascinating.
Edward Hallowell, a psychiatrist who was the coauthor of a 1994 bestseller on ADD and who has the disorder, began the group with a relaxed question about the past week. The challenge for couples in which one spouse has ADD, he says, is that the dynamic becomes one of a parent and child, rather than of married partners. The ADD person feels nagged and attacked, while the spouse feels resentful, angry, and burdened. "This is all a function of a moral lens rather than a medical lens being used to look at what is going on," he says. "ADD is not an excuse but a powerful explanation. The ADD person is not being deliberately narcissistic, controlling, passive-aggressive. These are all symptoms of a medical disorder." Once that is recognized, he says, the couple can begin to come up with strategies together for coping with daily life.
Struggles. Those gathered at this meeting, however, were not there yet. The stresses and strains of a marriage to someone with ADD emerged during the 90-minute discussion, as spouses complained about the difficulty of living with someone who needs little sleep, or constantly interrupts, or who impulsively spends money or says whatever comes to mind. One husband confessed that he felt as if he were "constantly screwing up and getting criticized." The lost credit cards and cellphones seemed unimportant for the ADD partner but were infuriating for the spouse. Money management, always a volatile issue, becomes especially so when both impulsiveness and a reluctance to pay attention to details are involved. Then there are the complicated power dynamics that occur when one partner of a couple has been officially "diagnosed" and the other partner is officially "normal."
Stephen and Annette Spector have been married for nearly 40 years, and while they did not attend the group in Sudbury, they have extensive experience with the issue. Stephen, a lawyer, has the disorder, and Annette runs support groups for the spouses of those with the disorder. "We have all kinds of names we give ourselves," Annette says of the non-ADD spouse. "The whip-cracker, the nagger, the mother, the baby sitter, the harper. And because of that we have a great deal of resentment. We don't like being in that role. But you have to get over it. Love and commitment are more important parts of the relationship."
Which is the point, says Hallowell, of the group format for couples with ADD. "Medication is only the beginning for adults with ADD, and many of them decide not to take it," he says. "What people with ADD need are concrete coping strategies for organization, time management, and procrastination. And we hope that people come away with some understanding of what life is like for the other. And some ability to laugh at the stuff that is hard."
Today, one need only look at Eric Johnson for proof of this. Tall and powerfully built, with a long dark ponytail and a level gaze, he is one of the 50 percent of children who did not outgrow ADD. College graduation and the official transition from childhood to adulthood came as a shock to his system. All the organizing constraints were removed, and he became totally disorganized, a poster child for the unique demands and complexities of having the disorder as an adult. "I basically had to figure out where I would fit in the adult world, and I hadn't thought about it," he says. His inability to organize himself, to somehow avoid the impulsive first remark, to simply pay attention, had messed up more than a few job interviews before he finally landed a job at a printing company six years ago. He continues to draw, freelances, and plans to go to graduate school to study illustration, a uniquely appropriate job for a mind able to make associative leaps most people can't.
Then there is his personal life, happy now as he lives with his girlfriend, Laura Kleinman, in a tiny apartment on Boston's Beacon Hill. All this despite a disastrous first meeting with Laura's parents in which he spent most of the time with his back turned to her father while checking out the books in the bookcase. "It was," Kleinman says, laughing and shaking her head, "a ludicrously painful experience."
It is this humor, this resiliency, this ability to turn the symptoms of ADD into something other than an indictment that is the key to managing ADD as an adult. Kleinman knows that Johnson's ADD tendencies camouflage his blazing intelligence, great artistic talent, and wild sense of humor.
For all the life problems and grim statistics surrounding ADD, the disorder has many positive elements. "I tell patients that if you are going to have anything, this is the disorder to have," says Brian Cohen, a therapist at the Hallowell Center who also has ADD. "It is like training a dragon on a leash. It may drag you around for years, but once you get it under control, you own all the magic and energy, and it's yours forever."
This story appears in the April 26, 2004 print edition of U.S. News & World Report.