In the strange new world of attention deficit disorder, science and medicine have mingled so thoroughly with capitalism and 12-step revivalism that it’s hard to tell where the boundaries are anymore
The Washington Post Co. | 30 March 1997
At the second annual Attention Deficit Disorder Association conference, the bookstore is the place to see and be seen, to network and get autographs, to spot the celebrities of the ADD universe. It’s a bit out of the way- — up on the 17th floor of Pittsburgh’s William Penn Hotel, where the three-day meeting is being held. But the conference organizers have posted sentries wearing big, bright yellow “ASK ME” buttons by the elevator in the main lobby, and frequent announcements before panels remind attendees to “visit the bookstore.”
The place is packed. Long, low tables hold stacks and stacks of books, mostly on ADD in children, though there are quite a few on adults. There are piles of the new volume- — hot off the presses- — from Ned Hallowell, ADD’s crossover star, whose books are put out by mainstream publishing companies rather than the specialty houses that produce most of the books seen here. There are self-published books that nevertheless boast shiny covers and zippy graphics, and there are homemade-looking affairs held together with staples. There are books on ADD and women, ADD and the law, succeeding in business with ADD, college students with ADD, how ADDers- — as they like to refer to themselves- — are better than others. Book
signings are scheduled periodically throughout each day, and a video monitor is constantly playing one or another of the tapes that are for sale. Hyper-friendly ADDA volunteers circulate through the room, offering order sheets so that the conferees won’t be overwhelmed by all the choices. And it is a bit overwhelming.
An entire subculture has grown up around ADD, populated by adults with the disorder, parents of kids who have it, people who aren’t sure but think that at last they might have an explanation for what has gone wrong — scattered minds, unfinished projects, hair-trigger outbursts — for so many years with them or their progeny. Theirs is a world where well-meaning professionals and a healthy sprinkling of charlatans and profiteers see an eager market and are jumping to exploit it, where serious brain researchers and dubious hawkers of herbal remedies compete for the, ahem, attention of the approximately 2 million kids and perhaps 5 million adults who have one of the late 20th century’s most prevalent complaints.
It’s a world of Internet discussion groups and shrewd pharmaceutical marketing, of children who can’t stay still and psychiatrists concerned about “pseudo-ADD.” A world where science and medicine have mingled so thoroughly with capitalism and 12-step revivalism that it’s hard to tell where the boundaries are anymore.
Small wonder that many of the conference attendees look lost. During the three days that I wander the halls of the William Penn, I hear lots of bad jokes about ADDers’ inability to find their way around.
Every day, the drums beat a little louder in the nature-nurture debate. Now there’s a gene for worry, there’s a gene for obesity, and another for novelty seeking. Yes, there’s the breast cancer gene, and the Alzheimer’s gene, but what really gets us excited or worried — depending on who we are — is the news about behavior.
No one has yet identified a gene for attention or impulsiveness, but it is clear that the human ability to focus on a task, to concentrate on a book or what someone is saying, is governed by a neurotransmitter called dopamine and, to a lesser extent, another called norepinephrine. These are fancy names for brain chemicals that act as messengers between one cell and another. If you don’t have enough dopamine flowing in a certain part of your brain — most likely the frontal lobes — or if you have an irregular flow of the stuff, you’re going to have a hard time screening out background noise or keeping yourself from doing impulsive, socially inappropriate things like interrupting. And if you have a hard time, you might have this much-maligned, hotly debated, little-understood thing whose full name is attention deficit/hyperactivity disorder.
ADHD has become a cultural watchword, the subject of “Life in Hell” cartoons and Letterman Top Ten lists, but it’s been around for a long time — a cartoon from the 19th century depicts a character called Fidgety Philip. As the 20th century wore on, medicine began to take greater notice of those kids whose motor ran a bit — or a lot — faster than everyone else’s. They talked too fast, they were restless, they interrupted, they didn’t sit still, or in one place, for very long. In the 1960s, child psychiatrists attempted to pin down this condition; no one except pediatric specialists was interested because the disorder was thought to disappear with age.
It’s been called everything from “minimal brain damage” to “minimal brain dysfunction” to “hyperexcitability syndrome” to “hyperactive child syndrome.” Eventually, when the second edition of the psychiatrists’ bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM-II), came out in 1968, it carried an entry for something called “hyperkinetic reaction of childhood” — with no mention of adults. When DSM-III was published in 1980, “attention deficit disorder” took a bow; the manual explainedthat “though excess motor activity frequently diminishes in adolescence, in children who have the disorder difficulties in attention often persist.” Two subtypes were noted — with and without hyperactivity. Then in 1987 in DSM-IIIR, the name was amended to “attention- deficit hyperactivity disorder,” and the manual allowed that about a third of affected kids continued to show signs in adulthood. Finally, in 1994, DSM-IV added a bit of punctuation, and the disorder became “attention- deficit/hyperactivity disorder” (note the crucial slash).
It’s now commonly thought that most kids don’t outgrow the disorder. Many compensate by finding the right jumpy, fast-paced career and lifestyle, while others may fade away into jobs beneath their capacities or get into trouble (their brash, impulsive behavior sometimes leading to drug or alcohol abuse). Now there’s talk of yet another name change — some researchers have suggested that “behavioral disinhibition disorder” would more accurately reflect the lessening of inhibition that they say is at the heart of the problem. But for now, it’s ADHD.
Most people drop the “H” and just call it ADD, attention deficit disorder — maybe because it’s easier to say. And the letters do roll off the tongue easily, perhaps a tad too easily. Wordplay is easy, derisive jokes are easy; dismissing ADD without really understanding it is easy. People think it has something to do with memory, and they laugh: “What were you saying?”
Conversely, they may see a TV show or quickly glance at a list of criteria and decide immediately — without seeing a doctor — that they, or their kids, have ADD. Yet many who come to believe — fervently — in the existence of the disorder are slow and careful and judicious. They think long and hard about the disorganization or impulsiveness or troubles with concentration that have plagued them or their kids, and then they go out and find a psychiatrist to talk to about their hunches and suspicions.
A very particular stew of phenomena has gone into the creation of the ADD universe. America Online, CompuServe and Prodigy all have ADD chat groups, and cyberspace makes possible the lightning-speed dissemination of information — or misinformation. The patient activists who fought the AIDS and breast cancer battles gave people the idea that they could — and often should — take their medical care into their own hands. Still another, very important part of the mix is America’s confessional culture, withits emphasis on personal experience. Almost everyone offering ADD treatments or products lays claim to personal involvement with the disorder: parent of an ADD child, married to an ADD spouse, suffers from ADD him- or herself. Frequently, book jackets and bios reveal the expert’s exact age on receiving an ADD diagnosis.
Because there is comfort in numbers, lots of ADDers join CHADD (Children and Adults with Attention Deficit Disorder), the malady’s 35,000-member national advocacy group, or some other, smaller org such as ADDA (which has about 3,000 members and is geared primarily to adults). They may attend support group meetings — some of which are volunteer-run and cost nothing, some of which are organized by mental health professionals and cost in the neighborhood of $60 a session. They may hire a “coach” to help them organize their lives or buy an electronic organizer or install special software on their computers. Very likely, they’ll put their kids on medication, most often the controversial Ritalin, which acts to release the desired dopamine in the brain. They may look for educational advocates to help guide them and their kids through the maze of the public education system. They go to testers, evaluators and assessors, who can charge $1,000 or more. (As yet, there’s no clear-cut test for ADD, althoughthere are indicators and measurements that can help a professional get a sense of where the problems lie.) And they flock to tribal gatherings like the one in Pittsburgh.
AT THE FAIR
Down the corridor from the bookstore is the exhibit hall, which is like some bizarre county fairground. Vendors of every imaginable kind, from the mainstream to the fringe, have brought their equivalent of prize pigs and are poised inside their booths, eager to show off their entries, explain them, point out their beauties. To be sure, the guy from SmithKline Beecham, ready with a big smile and a card, has less of a personal stake in his pig — Dexedrine, a stimulant often prescribed for ADD — than doesDaniel Amen, the earnest California psychiatrist who’s just bursting to introduce passersby to the intricacies of his SPECT brain-imaging system, which promises to show differences between the attention-deficient brain and the normal model. All through the hall, people are talking about the alleged virtues of Pycnogenol, a mysterious remedy supposedly made from the bark of French pine trees.
The crowd wandering through the booths, gazing at the wares, seems to exist in two registers: those who appear wide-eyed, a bit terrified, meandering blankly from exhibit to exhibit, clutching stacks of pamphlets and brochures and ADDA tote bags that read, “Meeting the Challenge, Living the ADDventure,” and those with the beatific expression of someone who has just had a great epiphany. The former seem always on the brink of tears; the latter just bursting to hug some newly spotted buddy from last year’sconference. The exhibitors do a lot of glad-handing — those big smiles seem permanently pasted on.
There are camps for “special” children, and drug delivery systems, and software, lots of software — programs to get you or your child organized, programs to explain your newfound diagnosis to you, programs to help the mental health professional track the ADD patient’s reactions to various medications. And more books, on top of all those in the bookstore: one on applying the 12-step approach to ADD, another called Honey, Are You Listening? How Attention Deficit Disorder Could Be Affecting Your Marriage.The 12-step booth offers a bowl of mini Snickers bars and peanut M&Ms, in case the need for sugar hits. I hear more bad jokes as people help themselves to the candy, since one much-disputed theory about ADD is that it’s caused by too much sugar.
Brunner/Mazel and Guilford Publications, both small fry in the larger publishing world, are giants here. One of Brunner/Mazel’s editors, stationed at the company’s booth, along with the marketing director, explains that the firm started out strictly as a psychology trade house but has savvily followed the ADD explosion. Recently, Brunner started an offshoot called Magination Press, targeted to an audience of nonprofessionals.
An outfit called the National Reminder Service has a booth offering fliers that read: “Oh no! I forgot!! . . . What would happen if you remembered?” The ADDA booth sells sleek black coffee mugs, and everywhere there are brochures and fliers and cards for coaches. Coaching is the wave of the ADD future, a burgeoning new profession wherein the attention deficient pay someone to help them organize their lives, attack large projects, focus on near- and long-term goals.
Coaching sounds silly at first, but the more I talk to ADDers, the more sense it seems to make. For people whose main problem is distractibility and difficulty in concentrating, the task is coping with daily life — meeting deadlines, organizing schedules, minimizing distractions. And for that, a $30-to-$60-an-hour coach fits the bill a lot better, and a lot more cost-effectively, than a $100-to-$150-an-hour therapist.
But the prize pig that stops me cold, the entry that would win the blue ribbon if I were the judge, is Michael Gordon’s Home Beeper. I can’t seem to leave the booth where it’s on display. I read the pamphlet describing it once, then again, then again. It appears to promise an end to household shouting, but I can’t figure out why it would be good for people with ADD. Next to it are the Gordon Diagnostic System — all somber dials and buttons, meant to aid mental health professionals in diagnosing ADD — and several books, all written by Michael Gordon, PhD, professor, department of psychiatry, and director, Attention Deficit Hyperactivity Disorders Program, SUNY Health Science Center at Syracuse (everyone at this conference has very grand credentials, and they come in long elaborate strings). Among the books are Jumpin’ Johnny Get Back to Work!, a children’s picture book with a bright yellow cover, and Juanito Saltarin! A Tu Trabajo De Nuevo!, Johnny’s Spanish translation, which comes inside a bright pinkcover.
Like many of the exhibitors here, Gordon seems to be a one-man mini-industry. The books look to be clear and engaging and are probably helpful to kids with ADD, and professionals may find Gordon’s Diagnostic System a real aid — but the sheer amount of stuff Gordon is hawking, combined with the muchness all around me in the exhibit hall, gives me pause. Later, I talk to Gordon on the phone, and he sounds lucid and intelligent as he discusses the possibility that ADD is overdiagnosed, with none of the defensiveness that marks so many ADD experts when the question of overdiagnosis is raised. He doesn’t seem like the kind of guy to be peddling a whirligig like the Home Beeper, and sure enough, he tells me that he brought it to the conference at the last minute, that it was originally intended for another use.
But for now, the beeper has me in its thrall. It is a simple black box that turns out to be nothing more than a glorified intercom. The eager booth-tender swoops down to regale me with tales of the device’s wonders, and I’m thinking that it must be one of the scams of the century, when I become aware that a heavyset woman in a yellow- and-white striped outfit has also approached the display. Mostly to herself, she says, “That’s just what I need.”
I turn to her and she promptly launches into an explanation: “In my house, my son and I, we get going — he’s upstairs, I’m downstairs, we’re shouting. We could use something like this.” The woman has come to the conference from Silver Spring. Her son has ADHD, she volunteers — she very specifically includes the H, which means he’s likely to be impulsive and disruptive — and she has plain old ADD, which means she’s likely to be scattered and disorganized.
Her husband, however, doesn’t believe the disorder exists. “He told me not to come here — that it would be all professionals. I saved my own money to come here; he didn’t have to pay a penny.” She tells me that although she and her son don’t get along terribly well, they do better when they’re one-on-one, without the further distractions of other people. She looks longingly at the beeper, muses on its $29.95 price tag, and moves on.
THE PROFIT MOTIVE
Nowhere in the exhibit hall are the glad-handers gladder, the smiles whiter and more toothy, than at the pharmaceutical companies’ booths. The company reps look impossibly fresh and scrubbed as they stand at tables stacked with information sheets and glossy brochures, offering pens and pads emblazoned with corporate logos. Much of the controversy about ADD has centered on these companies, notably Ciba-Geigy, the maker of Ritalin.
Drugs are a hot topic at the conference, the subject of several seminars (“Medicine: the Cornerstone of ADD Therapy,” “Management Without Medication,” “Recent Medication Studies: Adderall, Tenex and Zoloft”) and lots of animated discussion in the hallways, at the bookstore and among the sofas and overstuffed chairs of the hotel’s grand lobby. Drugs — or medications, as they’re known in an effort to differentiate them from what kids should say no to — are huge in the ADD world. In these days of managedcare, mental health treatment leans very definitely toward the pharmacological rather than Freud’s old talking cure, and this is as true for ADD as it is for, say, depression. HMOs and insurers would much rather reimburse for a few prescriptions than for open-ended therapy. “Managed care has forced many of us to thinking of medication faster,” says Larry Silver, a professor of psychiatry at Georgetown University Medical Center and a former deputy director of the National Institute of Mental Health. “Certainly it has put pressure on quicker diagnosis, a medical model.”
The most popular ADD medications are stimulants, and methylphenidate is by far the hottest seller, with about three-quarters of the $400-$500 million market. Ciba’s Ritalin and MD Pharmaceuticals’ generic version of methylphenidate each had sales of about $150 million in 1995. SmithKline Beecham’s Dexedrine and Abbott Laboratories’ Cylert have a much smaller share of the market. (Cylert’s star is probably fading — the Food and Drug Administration recently warned that the drug should no longer be a first-choice ADD medication, because of the risk of liver damage.) In addition, a host of nonstimulant drugs with alphabet-soup names are sometimes used for attention deficit disorder — either in combination with stimulants or alone: SSRIs (selective serotonin reuptake inhibitors), TCAs (tricyclic antidepressants) and, less frequently, MAOIs (monoamine oxidase inhibitors).
Methylphenidate consumption has jumped greatly in recent years, and in the process, Ritalin has become even more of a household word than the disorder it addresses. When the New Yorker ran its back-to-school cover last fall, the blackboard in the illustration read, “Readin’, Writin’, and Ritalin.” Drug Enforcement Administration figures showing a more than five-fold increase in methylphenidate production from 1990 to 1995 have recently been challenged by a study reporting a rise in use of merely 21/2 times during those years. Either way, that’s a lot of pills.
Altogether, products that are used to treat ADD went from 4.4 million prescriptions in 1991 to 14.8 million in 1996, according to Scott-Levin, a pharmaceutical consulting firm. But the fact that prescriptions for Ritalin and other ADD medications have skyrocketed isn’t necessarily a cause for alarm. For one thing, as the idea that adults can have ADD gains acceptance, more of them are being treated with drugs. And, as many who work with ADD have noted, once you conceptualize a disorder, you can diagnoseit, where previously the ailment would simply have gone unnoticed or been dismissed as bad behavior. Russell Barkley, who heads an ADD clinic at the University of Massachusetts Medical Center, says: “If you presuppose we’ve been doing a great job diagnosing ADHD all along, then you might say we’re overdiagnosing now. But we haven’t been doing it all along. Just to say medication use is increasing is not evidence of a scandal.”
Many in the ADD community look askance at drug company profits, often making offhand references to how “they” must be “raking it in.” And there have been conflict-of-interest problems. In 1995, a PBS program called “The Merrow Report” drew attention to Ciba-Geigy’s donations to CHADD, the ADD advocacy organization. CHADD and Ciba-Geigy had petitioned the DEA to change the classification of Ritalin from a Schedule II to a Schedule III drug, thus making it easier to obtain. Because the petition could haveended up benefiting Ciba, the link between CHADD and the company looked improper. The petition to change Ritalin’s classification has since been dropped, and CHADD is now much more painstaking about disclosing its funding sources. At the group’s annual meeting, held last November in Chicago, the entrance to the floor where lectures were being held was adorned with large “Thank you to our sponsors” signs: Platinum — Ciba Pharmaceuticals, Abbott Laboratories. Gold — Richwood Pharmaceuticals. Silver — Pfizer Inc. Bronze — SmithKline Beecham.
Richwood is the new kid on the ADD block, and the enterprising Florence, Ky., company seems to be staking its future on the rise of attention deficit disorder. Its vehicle is the cutely named Adderall — a product with a somewhat unusual history.
Adderall began life in 1960 — way before the term ADD was popularized — as an appetite suppressant called Obetrol. In the process of “building a product portfolio,” says Richwood president Roger Griggs, “we found physicians using Obetrol equally as Ritalin in treating ADD. Ritalin was a market leader; this piqued my interest.” In 1994, Richwood bought Rexar Pharmacal Corp., Obetrol’s maker, and rechristened the drug. But when the new owners began to introduce their acquisition to the marketplace, the FDA informed them that Obetrol had never received the proper approval as an appetite suppressant, let alone as an ADD treatment. (In 1973, the FDA had decided to allow all amphetamines to be prescribed for obesity, narcolepsy and minimal brain dysfunction, as ADD was then known. But the primary use for which Rexar had originally sought approval was appetite suppression.) Richwood and the FDA proceeded to the negotiating table, and the company agreed to make some changes to ensure production quality.
Richwood finally got its approval from the FDA in February 1996 and has racked up roughly $10 million in sales since then. This figure would be peanuts to a Ciba or an Abbott, but for a fledgling company that’s still privately held, it’s enough to make financial analysts sit up and take notice.
It’s 9 a.m. on the first day of the Pittsburgh conference, and Steven Ledingham is conducting an all-day Support Group Leaders Training workshop. Ledingham wears his hair in a gray ponytail, but it is combed back so neatly and coiffed in such a strait-laced way in the front that, looking at him head on, you’d never know he had long hair at all. He uses lots of made-up words — when he talks about “journalizing” everything, I can only guess that he’s talking about keeping a journal, and when he exclaims that it can be “incredibly impactive” to start visualizing where you’re going, I can only cringe. He’s a salesman, and what he’s selling is his ASK (Adults Seeking Knowledge about ADD) system.
He’s got a bouncy, bounding kind of charm, and the audience at the workshop is appreciative. They laugh at his lame ADD jokes (people with ADD can do more than one thing at a time, have you heard that?); they raise their hands cooperatively when he asks what kinds of ADD groups there are and what kinds they’re interested in starting (support groups, informational groups, parent groups, spouse groups, beginner groups and groups for “lower functioning” adults, who, Ledingham explains, are those with no job, no money, bad relationships).
He explains his system with squeaky-clean fervor: “I’m super-excited to be here — this is really, really a neat idea.” Then, sounding like nothing so much as one of those late-night infomercials for weird kitchen devices that you didn’t know you needed or makeup lines hawked by faded Hollywood starlets: “I’ve written this book — this book is really terrific. Let me tell you why.” There are also moments when he sounds like a kindergarten teacher: “The brain does not learn big things, it learns little things,” he pronounces.
The ASK system is basically a step-by-step primer on setting up a support group for adults with ADD. When Ledingham explains what is expected of those who come to such groups, it all seems eminently sensible, given that these are people who are prone to impulsively interrupt and deviate from the subject at hand. “We expect them to show respect,” he says. “We expect them to not interrupt. We expect them to stay on topic.” He suggests timing discussions — using a kitchen timer — so that people won’t hogthe floor.
After about an hour of upbeat exhortation, he asks us to divide up into small groups, and leads us through a getting- to-know-you exercise. He passes out to each group a set of colored cards, the About-U-Game. One card reads, “If I could change one thing about ADD it would be . . .”; in the card’s lower left corner, in small print, is the instruction: “Be honest with the group.” Other cards are more to the point: “Goal Setting” (“How are you doing?”); “Recreation” (“What do you do?”); “Excitement!” (“Whatgets you excited?”).
Although the whole thing strikes me as hokey at first, the game actually works. Complete strangers start speaking to each other. Some launch in eagerly, but others, more movingly, begin talking only slowly, stiffly. A few people in the room are professionals (social workers, psychologists, educators of one sort or another), but most just have ADD. They listen carefully to one another, straining to absorb some jot of someone else’s wisdom that will help them concentrate, help them organize their chaotic minds.
`WHAT’S GETTING IN YOUR WAY?’
Ned Hallowell calls himself a radical moderate. It’s catchy, like most of what he says, and it’s true. He’s radical, in that although he’s a Harvard-trained psychiatrist, he’s more than willing to go on talk shows and lecture at conferences like this one. He’s a moderate, in that he doesn’t shy away from discussions of what he calls “pseudo- ADD” — behavior caused by our rapid-fire, overscheduled, sound-bite culture that may mimic ADD. “That’s modern life,” he says with a laugh. He admits that the absence of a test for ADD is a “stumbling block,” but adds that “that doesn’t mean you can’t diagnose it. It’s like depression — there’s no test for that either, but you can diagnose depression.”
Hallowell’s appeal cuts a wide swath. All ADDers have a favorite guru, the swami whose ideas they find most compelling. Some are devotees of Sari Solden, an Ann Arbor, Mich., therapist who looks specifically at the problems of women with ADD. Others swear by Thom Hartmann, who presides over the CompuServe ADD forum and came up with the “hunter in a farmer’s world” theory, which holds that people with ADD have all the instincts that were necessary in the “fight or flight” world of the cave-dweller — theyjust have the wrong skills for our more settled, farmer-like era. But Hallowell is cited and respected by almost everyone. He can talk science with the scientists, psychiatry with the psychiatrists. In this world that places such a premium on personal experience, he is unafraid to offer stories of how he, as a child with undiagnosed ADD, got along in the world — tales of how his mother told him at night, “The dark is our friend,” and how Mrs. Eldridge, his tremendously “round” first-grade teacher, put a comforting arm around him as he tried, haltingly, to read (he had undiagnosed dyslexia, too).
In the hallways of the William Penn, people crowd around him, reaching out to touch him. As he himself says, half wearily, half in exasperation: “These people come up to me, and they want me to do a whole diagnosis and treatment on the spot.” Even his colleagues hand out accolades, perhaps tinged with a touch of jealousy. During one of the conference’s opening addresses, Atlanta psychiatrist Steven Copps, an imposing white-haired figure given to wearing natty blue blazers with gold buttons, mentions Hallowell’s new book: “This guy can’t miss. He’s clever — he’s really clever.”
One mark of his cleverness is his ability to see two sides of the same coin. On the issue of medication, he says, “We should be able to look at it without voodoo on either side — the Devil’s own work or manna from God.” He points to the moment of diagnosis as the most important in treatment for ADD: “The diagnosis alone can be life-transforming — [learning that] what you have is not a bad case of badness.” Your attention span “is not under voluntary control,” he says. “It’s not will.” Yet after diagnosis, after the moment of realization, “hard work will always help. I always reassure the moralists: I’m not against hard work. It’s just not the whole story.”
When confronted with people who reject the very idea of ADD, who don’t believe it’s a real thing, Hallowell is willing to simply address what he calls the “target symptoms.” At a seminar he gave at the ADDA conference, a blond woman from Pennsylvania talked about how she and her then-boyfriend had read Driven to Distraction — a book he coauthored with John Ratey — and together decided that they both had ADD. Later, the boyfriend changed his mind — vehemently insisting that the whole notion of the disorder was utter garbage. The woman, clearly upset, was seeking Hallowell’s sage advice, perhaps thinking she could reconvert her ex to the ADD cause.
The advice she got was sage, though perhaps not in the way she expected. Hallowell explained that when people come to him for help, yet insist that there’s no such thing as attention deficit disorder, he just asks them, “What’s getting in your way?”
“Well, I’m scattered,” they answer. “I can’t get organized.”
Then he replies, moderately, without insisting on the name they dislike: “Okay, well, let’s talk about that.”
`A NORMAL LITTLE GIRL’
Ned Hallowell is so intelligent, so even-handed and deft, that he acts as a sort of anti-skepticism drug. But by the end of the ADDA conference, after three days of rubbing psyches with the ADD entrepreneurs and the ADD true believers, I can’t help having doubts. For at least some of these people, ADD may be just a story they tell themselves, a comforting label for behavior they have been unable to explain or control.
When we feel that something undefinable, unnameable is wrong with us, there is great relief, great validation, in simply naming our condition. And there is even greater relief in the discovery that others share it. Herein lies the power of Alcoholics Anonymous and other 12-step programs, where over and over again, people tell their stories to other members of their tribe. I find myself thinking of the “moment of joy” that comes — as Vivian Gornick describes it in her recent memoir, Approaching Eye Level– “when a sufficiently large number of people are galvanized by a social explanation of how their lives have taken shape and are gathered together in the same place at the same time, speaking the same language, making the same analysis, meeting again and again . . . for the pleasure of elaborating the insight and repeating the analysis.”
Then I think about Katy Richardson, and my skepticism subsides.
Katy, who has ADD, lives in a Burke, Va., town house far removed from the carny atmosphere of the ADDA exhibit hall. Her family would seem prime targets for all the goods and services being offered at the Pittsburgh conference, except that they’ve never heard of ADDA; they’re not joiners. Barry and Susan Richardson, Katy’s father and stepmother, go to work, put dinner on the table, take care of Susan’s sister’s cat while she’s away — all the stuff of daily life. But in between the shopping and the driving and the reheating and the laundry, they’ve also been trying to figure out what makes their 8-year-old daughter tick, and tick so fast.
Katy is a sweet kid, friendly, open to new people, curious about new things. Her father says she used to have these qualities — only about 500-fold. She’d wrap herself around you, he explains: “Clingy, grabbing, holding, pulling. The attention’s great, but after a while, you just want to say, `Calm down.’ Katy’s ADD was diagnosed a year and a half ago, when she was in first grade. She’d always been a whirlwind, getting in trouble in kindergarten, and even before that, in day care.
“I had no idea what it was,” Barry says now. He and Katy’s mother were separating, and a psychologist consulted by the family traced Katy’s problems — reasonably enough, some might say — to the breakup. This is a common occurence with ADD: Its symptoms are seen as being psychological or emotional in origin, and there’s a temptation to rely on what Ned Hallowell calls the “moralistic diagnosis” — judging a family for splitting up or a kid or adult for being “sloppy” or “unmotivated” rather than recognizing that a set of behaviors might be rooted in biology.
The flip side of Katy’s inattention and impulsiveness were boundless energy and overflowing affection. “At the end of Kindercare, Katy won an award for `most energetic,’ ” Barry recalls with a fond smile. “She just jumped out of her seat. She was just jumping around, and the kids were laughing.”
But things came to a head when her peers were learning to read, and she couldn’t. “They did Hooked on Phonics for Katy,” Susan says, “and she just couldn’t sit still for it.”
Katy’s first-grade teacher raised the possibility of ADHD, and Susan, who had studied psychology, had been thinking along the same lines. “It wasn’t that she was unable to learn this stuff,” Susan notes, “it was that she was unable to sit still to absorb it.”
Getting an accurate diagnosis is a real challenge for any ADD parent or adult. Because there is no single, definitive test, a mental health professional (preferably a psychiatrist) must take a careful patient history. Many other conditions can cause poor concentration and other ADD-like symptoms, says Xavier Castellanos, a noted ADD researcher at NIMH. The psychiatrist’s first duty is to rule out any possible mimics, which can include anxiety disorders, depression, mania, post-traumatic stress disorder,severe learning disabilities, psychosis and seizure disorder. “As you move away from severity toward the boundaries,” says Castellanos, “you ask, is it ADHD or does the child just need attention, a structured environment?”
Many mental health practitioners seem all too willing to diagnose ADD — it’s quick, it’s easy, it’s popular. And of course, a medication-based treatment is also quick, easy and popular. But the Richardsons were circumspect. Katy was evaluated by a social worker at a nearby medical facility. “They gave us tons of questionnaires and papers to fill out,” Susan remembers. There was a separate set of questionnaires for Katy’s teacher, since it’s important to see what someone is like in different settings. Ifthe behavior is “context-dependent,” as the shrinks say, then it probably isn’t ADD. It’s got to be there, in some form or other, in all situations, although it’s true that a classroom demands a different sort of behavior than the family dinner table. After the evaluation was complete, says Susan, “it was clear. For some children it’s not so clear — there may be learning disabilities thrown in.”
Once the diagnosis was established, the question became what to do. “We were very certain that we didn’t want to just go to somebody and say, yes, it’s this and here’s medication,” says Susan. “We were open to medication, though.” Katy ended up taking Ritalin — and for her, it’s been a miracle drug. Susan is emphatic: “She could not have learned to read without Ritalin.” Barry seconds the emotion: “She’s really like a normal little girl when she’s on the medication. But when she’s not, she sucks the airright out of the room.”
Katy herself explains it best: “It’s like a hundred TVs are on. Each one has a different movie, and I’m trying to read a book. Some of them get turned off with the medicine.” They must, because she’s gone from falling behind in writing and reading to being able to read whole books, and she’s working at her grade level now.
Behavior management techniques (including anger control) and talk therapy are also part of Katy’s treatment. “Medication alone is not the only answer,” Barry says. “I don’t really want my child to be on medication, but I believe my child needs it, and it helps. There are a lot of techniques, coping techniques you can teach them.”
Right now, those techniques include a structured routine on school-day mornings and evenings. To help Katy keep track of her time, a big poster-size schedule is tacked to the kitchen door. The Richardsons learned many of these coping mechanisms at a “school” for kids with ADD that Castellanos runs at NIMH. It’s really just a 12-week program, part of an ongoing study that right now is focusing on girls. The school day is tightly structured, and the staff includes a recreational therapist, a nurse, two teachers and a social worker. Katy tells me what she’s learned there about dealing with her lightning temper. “My anger strategies are: Count to 10. Think it over. Talk to someone,” she says in solemn tones. “We had a choice of a lot of ’em, and I chose Count to 10, Think and Talk.”
She explains how much math homework she gets, and then leads me upstairs to her room to show me her special homework folder. Another coping technique: The idea is that having a special place to put homework may keep Katy, when she’s distracted, from putting it someplace and forgetting where that place is. She seems so bubbly and happy when she describes the school that I find myself wishing she could stay there forever.
But the most important thing Katy has — even at the age of 8 — is an understanding of what makes her tick and what to do about it. “If people understood why I couldn’t sit still,” she told Susan, “they wouldn’t get so angry at me.”
Anne Glusker is a senior editor at the Magazine.