July 18, 2004
by Lisa Belkin
When Vivienne Sales finally broke her silence, she did so loudly, losing her temper in the hushed library where she worked. It was August 2003, and she had been hanging on to her job as a reference librarian by the most fragile of threads. For more than a year her supervisors at the Embry-Riddle Aeronautical University in Prescott, Ariz., had been warning her that she was sometimes sloppy and inaccurate. She was late for work too often, they said. She didn't dress neatly and appropriately. Her desk was always a mess.
Sales knew all this. She also knew why. Three years earlier, when she was 36, she was told she had attention-deficit and hyperactivity disorder. (That's the full name of the condition, and while its initials are technically a.d.h.d., not all who have it exhibit the hyperactivity symptoms, so it is often referred to conversationally as simply A.D.D.) The news was a relief because it seemed to explain everything -- why she rarely seemed to fit into a workplace, why she left nine different jobs in 1999 alone, why, despite two master's degrees and years of dogged hard work, she never seemed to get anywhere.
Although the diagnosis was illuminating, Sales was determined to keep her condition to herself. ''Work isn't like school, where they have to give you more time on the tests'' if you have A.D.D., she explained. ''In the real world, if you tell during the interview, they won't hire you. And if you tell after you're hired, they can fire you.''
That's not a precise reading of the law, but it is an accurate reading of the stigma, and of the dilemma that will probably become more common in the coming years. First there was A.D.D. in children, and the debate over whether too many are being medicated for what is arguably normal behavior. Now that conversation has widened to include adults. Psychiatrists used to assure parents that A.D.D. was something their children would outgrow, but more recent research shows that the disorder is longer-lasting than originally thought. A.D.D. does not develop in adulthood, but neither does it always disappear after childhood.
Instead, up to 60 percent of children with A.D.D. grow up to be adults who still have A.D.D., and experts estimate that more than eight million grown-ups in the United States have the disorder. These numbers, presented by researchers from Harvard and the World Health Organization at the annual meeting of the American Psychiatric Association this spring, mean that attention-deficit disorder affects 4.4 percent of the adult population, making it the second-most-common psychological problem in adults after depression.
A mere 15 percent of those eight million actually know they have A.D.D., however, and they have learned that fact recently -- within the last decade, give or take -- because psychiatric textbooks didn't even recognize adult A.D.D. as an official diagnosis until 1987. Now that A.D.D. is an accepted part of the psychiatric repertory, however, doctors are seeing a surge in adults looking for a label for their lifelong restlessness. And just as the rise in the number of children given a diagnosis of A.D.D. brought measurable change to the world of education, the wave of adults with the same constellation of quirks and needs is affecting the world of work.
''A.D.D. makes work more complicated,'' said Harold Meyer, whose organization, the A.D.D. Resource Center, in Manhattan, advises both employers and employees on how to manage the condition in the workplace. Already employers are expected to be exquisitely sensitive -- granting maternity, paternity and adoption leave; subsidizing programs for weight loss and smoking cessation; providing domestic-partner benefits; adapting physical space for every category of handicap; allowing for flextime, telecommuting and job sharing. Adding yet another responsibility -- and particularly for a syndrome whose symptoms look suspiciously like bad work habits -- creates some skepticism. Meyer is regularly invited to address large companies, and whenever there are ''15 or 20 managers in a room, they all think they have employees with A.D.D., and they don't know what to do about it,'' he said. ''They want to help. But they also ask: 'Is it real? Or an excuse?'''
Cheryl Moreno, a manager of human resources at Embry-Riddle, who has spent months working with Vivienne Sales, trying to save her job, said she feels the same tug -- a desire to do the right thing mixed with frustration. ''We're feeling our way here,'' she said. ''Years ago this wasn't on the radar. Now we're seeing more of it. There's a climate here for helping people with impairments,'' she continued, ''but sometimes the impairments are too great.''
It was Moreno, in fact, who inadvertently led Sales to reveal her diagnosis last summer. Sales's job description included being backup for the specialist in charge of interlibrary loans, but she said she felt shaky in that role and had been told during her training for it that she had an ''accuracy problem.'' As it happened, Moreno needed to borrow a book from another library, and she came in on a day when the interlibrary-loan specialist was out. Sales said she is certain that she entered that request into the computer and also printed out a copy for the specialist's records. But when Moreno returned to pick up her book a few weeks later, it wasn't there. Neither was the paperwork, nor any record in the computer.
What resulted was a heated argument between Sales and the specialist who ran interlibrary loans. It ended with Sales sending a memo to her supervisor saying that she had a ''documented disability'' and was requesting an ''accommodation plan.''
''My decision to come out of the closet was one of desperation,'' Sales told me. When she speaks, her head darts in a nervous, birdlike way, her eyes magnified behind glasses that constantly slide down her nose. ''The library director was ready to let me go,'' she said. ''I was playing the a.d.h.d. card.''
On the third floor of the New York Helmsley Hotel, in the red-carpeted Knickerbocker Suite, a steady stream of adults sat at long, cloth-draped tables and filled out a short six-question form. ''How often do you have trouble wrapping up the final details of a project, once the challenging parts have been done?'' the questionnaire asked. ''How often do you have difficulty getting things in order when you have to do a task that requires organization?''
''How often do you have problems remembering appointments or obligations?'' it continued. Then: ''When you have a task that requires a lot of thought, how often do you avoid or delay getting started?'' And: ''How often do you fidget or squirm with your hands or feet when you have to sit down for a long time?'' Finally: ''How often do you feel overly active and compelled to do things, like you were driven by a motor?''
The participants answered in gradations, from ''Never'' to ''Very Often.'' When they finished, they met one on one with staff members from the Adult a.d.h.d. Program at New York University, who were there to tell them whether they were, as one counselor put it, very good candidates for a.d.h.d. Between 8:30 a.m. and 3:45 p.m. on this weekday in May, about 450 people registered for the screening. Of those who took the test, 85 percent were found to be at high risk for the disorder.
''That's far higher than in the population at large,'' said Dr. Lenard Adler, the associate professor of psychiatry and neurology at the N.Y.U. School of Medicine. ''This is a self-selecting group, and they came here in the first place because they were highly suspicious that they have this.''
What Adler was saying is this: Yes, the numbers from this screening are high, but final determinations, the real diagnoses, are not made willy-nilly; everyone who loses his keys once in a while or drives off with the coffee cup on the roof of the car does not have a syndrome. The reason Adler makes his point so carefully is that he understands that many people, whether they say so outright or not, have a sneaking suspicion that A.D.D. is little more than spaciness redefined as disease.
''You can't see it, you can't touch it, there's no litmus test for it,'' said Dr. John Ratey, co-author (with Dr. Edward Hallowell) of Driven to Distraction, which, when it was published in 1994, brought adult A.D.D. to a mainstream audience for the first time. ''It's a spectrum diagnosis. There's no real test for depression either, but we accept that people are depressed. There are no real tests for a lot of things.''
What is different about A.D.D., though, is that its symptoms are a cluster of behaviors that nearly every human has at some point: forgetfulness, disorganization and restlessness, along with the seemingly incongruous ability to focus intensely on one task to the exclusion of everything else. It is that very familiarity that breeds a level of contempt. So researchers like Adler and Ratey spend a lot of time explaining the difference between A.D.D. and run-of-the-mill messiness.
For starters, there are the physical differences. ''Brain scans show a difference in prefrontal cortex glucose metabolism in people with a.d.h.d. compared to control groups,'' said Dr. David W. Goodman, assistant professor in the psychiatry and behavioral sciences department at the Johns Hopkins University School of Medicine. ''And dopamine receptor density is greater in a.d.h.d. brains. Also, volumetric changes. In general, a.d.h.d. brains are smaller. If you have a patient do a color/word sorting test, a.d.h.d. lights up in a different area of the brain than non-a.d.h.d. The hard-wiring of the a.d.h.d. brain is different.''
Then there is the genetic evidence. ''If your child has it,'' Adler said, ''there's a 40 percent chance that a parent has it. If a parent has it, there's a 50 percent chance that a child will.''
These tendencies are not diagnoses, however. Brain imaging and genetics aside, A.D.D. really exists only if it affects your life. ''What makes this real is the impairments,'' said Dr. Margaret Weiss, director of the a.d.h.d. clinic at the Children's and Women's Health Center in Vancouver, British Columbia. ''There is a tremendous difference between having some of the qualities and having the disorder. What we are talking about here is chronic, it's prevalent, it causes severe impairment.''
In other words, doctors know it when they see it. And what they see is a cohort of people who ping-pong from career to career and job to job; who are dynamite salesmen but who never fill out expense accounts; who look like workaholics because they are at their desks until midnight, but only because they don't really start to concentrate until panic sets in at 11 p.m.; who are creative geniuses but forget to bring the data to meetings.
I've seen it, too, in recent months, while doing the research for this article. The interviews have been qualitatively different from those I have done with any other group in 20 years of reporting. The conversations could not be kept on track; the people I spoke to jumped from one subject to the next. And they were longer than most interviews I usually do, because the subjects were unusually animated, articulate and chatty.
They arrived late. They fidgeted while we talked. They started to ask questions but forgot where they were headed. They kept saying, ''One more thing,'' until I learned to be blunt to the point of rude in my goodbyes. One woman sent me long, bursting e-mail messages, sometimes several of them a day, one of which literally ended, ''running off to my next projecttttttttttttttttttttttttttttttttttt zoommmmmmmmmmmmmmmmmmm!'' One man called me on my cellphone at 8 on a Saturday night because he thought of a question he had to ask. He would not be deterred, even when I told him I couldn't really talk because I was visiting my father in the hospital. Robert Tudisco, a lawyer whose A.D.D. was not diagnosed until he was an adult and who now represents clients with the disorder, tried to explain how it feels to live inside an A.D.D. brain. ''As I sit here and talk to you in a relatively calm conversation,'' he said, ''there's an amusement park going on in my head.''
But even once you come to accept the reality of A.D.D., the question lingers, Why now? If A.D.D. is a function of biology as old as humankind, then why this growing clamor for diagnosis at this particular moment? One answer is that medical diagnoses ebb and flow with the times. Looked at through that lens, Western society seems ripe for this disorder. Now is a time when diagnosis can lead to action -- not only are there more medications to treat A.D.D., but Americans are arguably more willing to take pills to change their temperament. Also, other eras provided more jobs for people who needed to move and do rather than sit and think -- more jobs in factories, on farms, in door-to-door sales. Go even further back, and there were adventurers and pioneers. Today we sit at desks, in cubicles, staring at screens.
Read more of this long but well-done article here.