What Is ADD/ADHD?

Psychology Today, May-June, 1997

WHAT I'VE LEARNED FROM ADD

When one clinician learned he had ADD, it was one of his greatest moments of understanding.

by Edward M. Hallowell, MD

When I discovered, in 1981, that I had attention deficit disorder (ADD), it was one of the great "Aha!" experiences of my life. Suddenly so many seemingly disparate parts of my personality made sense -- the impatience, distractibility, restlessness, amazing ability to procrastinate, and extraordinarily brief attention span (here-one-moment-gone-the-next), not to mention high bursts of energy and creativity and an indefinable, zany sense of life.

It was a pivotal moment for me, but the repercussions have been more powerful and wide-ranging than I could have imagined 16 years ago. Coming to understand ADD has been like stepping through a porthole into a wider world, expanding my view of my patients, friends, and family. I now know that many personality traits and psychological problems have a genuine basis in biology -- not just ADD, but also depression, learning disorders, anxiety, panic attacks, and even shyness.

That insight has been tremendously freeing, for myself and my patients, and it has also led the mental health field to novel, effective treatments for brain disorders. I use the word "brain" intentionally, to emphasize that in many ways our personality is hardwired. Yet just as important is the fact that biology is only part of the story. We're all born with a set of genes, but how those genes get expressed depends largely on life experience and the way our environment interacts with our biology. If we understand this, we can "manage" our brains more deftly, using methods that range from medicine to lifestyle changes. Diagnosing and treating ADD -- in my own life and those of hundreds of patients -- has shown me just how remarkable these interventions can be. I have seen more than a few teetering marriages right themselves when the couple understood it was ADD, not bad character, causing their troubles. I have also seen many careers that had been languishing in the bin labeled "underachiever" suddenly take off after diagnosis and treatment of ADD. Scores of students have been able to rescue their academic careers after diagnosis and treatment. It is a powerful diagnosis: powerfully destructive when missed and powerfully constructive when correctly picked up.

ADD has taught me to look at people differently. These days, when I meet someone I often ask myself the question, "What kind of brain does he have?" as a way of trying to understand the person. I've learned that brains differ tremendously from person to person, and that some of the most interesting and productive people around have "funny" (i.e., highly idiosyncratic) brains. There is no normal, standard brain, any more than there is a normal, standard automobile, dress, or human face. Our old distinctions of "smart" and "stupid" don't even begin to describe the variety of differences in human brains; indeed, these distinctions trample over those differences.

Today we know more than ever about the brain -- but in learning more we have realized how little we actually know. With sophisticated brain scans that map the activity of networks of neurons we can peer inside the once impenetrable armor of our skulls and learn just how brains act when they are seeing, thinking, remembering, and even malfunctioning. And yet the vast territory of the brain still stretches out before us uncharted, like the sixteenth-century maps of the New World we used to see in our fifth-grade history books. Although we are coining new terms all the time (like emotional intelligence or post-traumatic stress disorder or even attention deficit disorder), although we are discovering new neurotransmitters and brain peptides that reveal new connections and networks within the brain, and although we are revising or throwing out old theories as new ones leap onto our screens, any honest discussion of mental life must begin with the confession, "There's so much we still don't know."

DISORDER AND METAPHOR?

What do these philosophical flights of fancy have to do with ADD and me? A few years ago ADD burst upon the American scene the way psychiatric disorders sometimes do, emerging as a riveting new metaphor for our cultural milieu. In the 1930s we embraced neurasthenia; in the '50s W. H. Auden coined the term "the age of anxiety"; in the '70s Christopher Lasch dubbed us the "culture of narcissism." Now, in the '90s, ADD has emerged as a symbol of American life. This may explain why Driven to Distraction and Answers to Distraction, two books I wrote a few years ago with Harvard psychiatrist John Ratey, MD, found a surprisingly wide and vocal audience.

At the same time, there has been some misunderstanding because of the sudden popularity of ADD. Scientists rightly get upset when they see extravagant claims being made that studies cannot justify -- claims, for instance, that up to 25 percent of our population suffers from ADD. (The true number is probably around 5 percent.) And ordinary people are annoyed because they feel this diagnosis has become a catchall excuse -- clothed in neurological, scientific language -- for any inappropriate behavior. ADD can seem to undercut our country's deep belief in the work ethic. "Why didn't you do your homework?" "Because I have ADD." "Why are you late?" "Because I have ADD." "Why haven't you paid your income tax in five years?" "Because I have ADD." "Why are you so obnoxious?" "Because I have ADD." But, in fact, once ADD is properly diagnosed and treated, the opposite happens: The sufferer is able to take responsibility more effectively and becomes more productive and patient. The student who always forgot his homework and was constantly penalized for doing so is able to remember his homework -- after his ADD is treated. The same is true for the adult in the workplace, who, once his ADD is treated, is finally able to finish the project he has so "irresponsibly" neglected, or the academician who is at last able to complete her PhD dissertation.

So what is this condition, and where has it been all these centuries? Is it just another fad, or is there some scientific basis to ADD?

ADD is not a new disorder, although it has not been clearly understood until recent years, and its definition will become even more refined as we learn more about it. Right now, we are like blind men describing an elephant. The elephant is there -- this vast collection of people with varying attentional strengths and vulnerabilities. However, generating a definitive description, diagnostic workup, and treatment plan with replicable research findings still poses a challenge. As long ago as the 1940s, the term "minimal brain damage syndrome" was used to describe symptoms similar to what we now call ADD. Today, the standard manual of the mental health field, the DSM-IV, defines ADD as a syndrome of involuntary distractibility -- a restless, constant wandering of the crucial beam of energy we call attention. That trait is the hallmark of this disorder. More specifically, the syndrome must include six or more symptoms of either inattention or hyperactivity and impulsivity -- the latter variant is known as attention deficit disorder with hyperactivity, or ADHD.

To define a disorder solely in terms of attention is a true leap forward, since for centuries nobody paid any attention to attention. Attention was viewed as a choice, and if your mind wandered, you were simply allowing it to do so. Symptoms of ADD -- not unlike those of depression, mania, or anxiety disorders -- were considered deep and moral flaws.

When people ask me where ADD has been all these years, I respond that it has been in classrooms and offices and homes all over the world, right under our noses all along, only it has been called by different names: laziness, stupidity, rottenness, and worthlessness. For decades children with ADD have been shamed, beaten, punished, and humiliated. They have been told they suffered from a deficit not of attention but of motivation and effort. That approach fails as miserably as trying to beat nearsightedness out of a child -- and the damage carries over into adulthood.

IT'S ALL IN YOUR HEAD

The evidence that ADD has a biological basis has mounted over the last 20 years. First, and most moving, there is the clinical evidence from the records of millions of patients who have met the diagnostic criteria and who have benefited spectacularly from standard treatment. These are human stories of salvaged lives. The fact that certain medications predictably relieve target symptoms of ADD means that these symptoms have roots in the physical world.

I recall watching an eighth grader named Noah receive a reward for "Most Improved" at graduation. This boy's mother had been told by an expert that Noah was so severely "disturbed" that she should look into residential placement. He was often in trouble at school. From my first meeting with Noah I was struck by his kindness and tenacity; no expert had understood that he suffered from ADD, as well as mild cerebral palsy. Like many ADDers he was intuitive, warm, and empathic. After coaching, teacher involvement, extra structure, and the medication Ritalin, Noah improved steadily, from the moment of diagnosis in sixth grade until graduation from eighth. As I watched him walk up to receive his award, awkward but proud, shake the hand of the principal, then turn and flash us all a grin, I felt inside a gigantic, "YES!" Yes for the triumph of this boy, yes for the triumph of knowledge and determination over misunderstanding, yes for all the children who in the future will not have to suffer. Standing in the back of the gym, leaning against the wall, I cried some of the happiest tears I've ever shed.

There is also intriguing biological evidence for the existence of ADD. One seems to inherit a susceptibility to this disorder, which appears to cluster in families just as manic-depression and other mental illnesses do. Though no scientist has been able to isolate a single causative gene in any mental disorder -- and, in fact, we are coming to understand that a complex interaction of genes, neurotransmitters, hormones, and the environment comes into play in mental illness -- there is solid evidence that vulnerability can be passed down through generations. One particularly careful, recent review in The Journal of The American Academy of Child and Adolescent Psychiatry supported the heritability of ADD based upon family and twin-adoption studies and analysis of gene inheritance.

Evidence of ADD may even show up in specific areas of the brain. In 1990, Alan Zametkin, MD, a psychiatrist at the National Institute of Mental Health (NIMH), reported startling findings about the ADD brain in the New England Journal of Medicine. Zametkin measured sugar metabolism -- a major indicator of brain activity -- in the brains of 30 adults who had a childhood history of ADD, along with 30 normal individuals. PET scans (positron emission tomography) allowed Zametkin to determine just how much sugar each participant's brain was absorbing, and in what regions. Sufferers of ADD absorbed less sugar in the areas of the brain that regulate impulse control, attention, and mood. Another study, by NIMH researcher David Hauser, MD, linked ADD to a rare thyroid condition called generalized resistance to thyroid hormone (GRTH) Seventy percent of individuals with GRTH suffer from ADD -- an extraordinarily high correlation. Finally, recent brain scan studies have revealed both anatomical and functional differences in the brains of individuals with ADD -- slight but real differences in the size of the corpus callosum (which serves as the switchboard that connects the two hemispheres of the brain), as well as differences in the size of the caudate nucleus, another switching station deep within the brain. These breakthrough studies lay the foundation for promising research, but much more work needs to be done before we may be able to use these findings to actually help us diagnose ADD. They simply point us in the direction of biology -- and that pointer is powerful.

THE PIVOTAL MOMENT

Nothing matters more in ADD than proper diagnosis. Even today this condition is so misunderstood that it is both missed and overdiagnosed. As the public's awareness of the disorder grows, more and more people represent themselves as experts in ADD. As one of my patients said to me, "ADD has become a growth industry" Not every self-proclaimed expert knows ADD from ABC. For instance, depression can cause someone to be distracted and inattentive (and in many cases depression and ADD even occur together). However, a constant pattern of ADD symptoms usually extends back to early childhood, while depression is usually episodic. Thyroid disease can also look very much like ADD, and only testing by a physician can rule this out. High IQ can also mask or delay the diagnosis of ADD.

If the proper care is taken, a diagnosis of ADD can be made with confidence and accuracy, even though there is no single proof-positive test. Like most disorders, ADD occurs on a wide spectrum. In severe cases an individual can barely function due to rampant disorganization or uncontrollable impulsivity, not to mention secondary symptoms such as low self-esteem or depression. Yet very mild cases of ADD can be barely noticeable, especially in a bright individual who has adapted well.

To me, the life history is the one, absolutely convincing "test," which is then supported by the criteria of the DSM-IV and by psychological testing. When someone tells me they've been called "space-shot," "daydreamer," and "out in left field" all their lives, I suspect they might have ADD. At our clinic in Concord, Massachusetts, we use an abbreviated neuropsychological battery that helps us confirm a diagnosis. The battery includes standard written tests that measure memory and logic, impulsivity, and ability to organize complex tasks. Score alone does not tell the whole story; the tester needs to watch the client to determine whether he or she becomes easily frustrated and distracted. We even include a simple motor test that measures how quickly a person can tap their finger. (Patients with ADD are very good at this; depressed patients are not.) Though these tests are helpful, they are by no means definitive. A very smart person without ADD may find these tests boring, and become distracted. On the other hand, one of the great ironies of this kind of testing is that three of the best non-medication treatments available for ADD -- structure, motivation, and novelty -- are actually built into the testing situation, and can temporarily camouflage ADD.

A diagnosis by itself can change a life. My own father suffered from manic-depression, and I used to wonder if I had inherited the same disorder. When I learned I had ADD, that fact alone made a huge difference to my life. Instead of thinking of myself as having a character flaw, a family legacy, or some potentially ominous "difference" between me and other people, I could see myself in terms of having a unique brain biology. This understanding freed me emotionally. In fact, I would much rather have ADD than not have it, since I love the positive qualities that go along with it -- creativity, energy, and unpredictability. I have found tremendous support and and goodwill in response to my acknowledging my own ADD and dyslexia. The only time talking about this diagnosis will get you in trouble is when you offer it as an excuse.

After a diagnosis of ADD, an individual and his or her family can understand and change behavior patterns that may have been a problem for many years. Treatment must be multifaceted, and includes:

-- Educating the individual and his or her family, friends, and colleagues or schoolteachers about the disorder. Two of the largest national organizations providing this information are CHADD (Children and Adults with Attention Deficit Disorder; call 800-233-4050) and ADDA (Attention Deficit Disorder Association; call 484-945-2101).

-- Making lifestyle changes, such as incorporating structure, exercise, mediation, and prayer into one's daily life. Structural approaches include using practical tools like lists, reminders, simple filing systems, appointment books, and strategically placed bulletin boards. These can help manage the inner chaos of the ADD life, but the structure should be simple. One patient of mine got so excited about the concept of structure he impulsively went out to Staples and spent several thousand dollars on complex organizing materials that he never used. An example of simple structure: I put my car keys in a basket next to my front door so that I do not have to start each day with a frantic search for them.

-- Exercise can help drain off anxiety and excess aggression. Regular meditation or prayer can help focus and relax the mind.

-- Coaching, therapy, and social training. Often ADD sufferers complain that structure is boring. "If I could be structured, I wouldn't have ADD!" moaned one patient. A coach can be invaluable in helping people with ADD organize their life, and encouraging them to stay on track. If a psychotherapist is the coach, he or she needs to be actively involved in advising specific behavioral changes.

-- Therapy itself can help resolve old patterns of self-sabotage or low self-esteem, and may help couples address long-standing problems. For example, setting up a simple division of labor between partners can prevent numerous arguments. Social training can help those with ADD learn how to avoid social gaffes. And merely under standing the condition can promote more successful interactions.

-- Medication. The medications used to treat ADD constitute one of the miracles of modern medicine. Drugs are beneficial in about 80 percent of ADDers, working like a pair of eyeglasses for the brain, enhancing and sharpening mental focus. Medications prescribed include stimulants like Ritalin or Dexedrine, tricyclic antidepressants like Tofranil and Elavil, and even some high-blood pressure medicines like Catapres.

All of these medications work by influencing levels of key neurotransmitters, particularly dopamine, epinephrine, and norepinephrine. It seems that the resulting change in neurotransmitter availability helps the brain inhibit extraneous stimuli -- both internal and external. That allows the mind to focus more effectively. There is no standard dose; dosages can vary widely from person to person, independent of body size.

Ritalin, by far the most popular drug for the treatment of ADD, is safe and effective. Of course, Ritalin and other stimulants can be dangerous if used improperly. But Ritalin is not addictive. Nor is it a euphoric substance -- people use drugs to get high, not to focus their minds. For example, you would not cite, "I took Ritalin last night and read three books" as an example of getting high. Using stimulants to cram before exams, however, is as inadvisable as overdosing on coffee. Students do it, but they should be warned against it. Ritalin should only be taken under medical supervision and of course should not be sold, given away, or otherwise misused.

The diagnosis and treatment of ADD represent a triumph of science over human suffering --just one example of the many syndromes of the brain we are at last learning to address without scorn or hidden moral judgment. As we begin to bring mental suffering out of the stigmatized darkness it has inhabited for centuries and into the light of scientific understanding and effective treatment, we all have reason to rejoice.

ANATOMY OF ADD

The official definition of ADD is found in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association in 1994. Keep in mind that ultimately the DSM is a fair attempt to systematize -- through extensive empirical fieldwork and data -- a field that is almost impossible to systematize. It's also important to remember that ADD is not a condition that you either have or don't have, like pregnancy. It is condition that, like depression, occurs in varying degrees of intensity. That said, for a patient to be formally diagnosed with ADD the following should be true:

1. Six or more of the following symptoms of inattention have persisted for at least six months to a degree that is maladpative and inconsistent with development level:

-- the patient often neglects to give close attention to details or makes careless mistakes in schoolwork, work, or other activities

-- often does not seem to listen when spoken to directly

-- often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace

-- often has difficulty organizing tasks and activities

-- often avoids, dislikes or is reluctant to engage in tasks that require sustained mental effort

-- often loses things necessary for tasks or activities

-- is often easily distracted by extraneous stimuli

-- is often forgetful in daily activities

Alternatively, the patient should have six or more of the following symptoms of hyperactivity and impulsivity, which have persisted for at least six months to a degree that is maladpative and inconsistent with development level:

-- the patient often fidgets with hands or feet or squirms in seat

-- often leaves seat in classroom or in other situations in which remaining seated is expected

-- often runs about or climbs excessively in situations in which it is inappropriate

-- often has difficulty playing or engaging in leisure activities

-- is often "on the go" or often acts as if "driven by a motor"

-- often talks excessively

-- often blurts out answers before questions have been completed

-- often has difficulty awaiting turn

-- often interrupts or intrudes on others

2. Some hyperactive-impulse symptoms that caused impairment were present before the age of 7;

3. Some impairment from the symptoms is present in two or more settings (such as school, work, home);

4. There is clear evidence of clinically significant impairment is social, or occupational functioning.

A CULTURE DRIVEN TO DISTRACTION

America today suffers from culturally induced attention deficit disorders, or what I call "pseudo-ADD." That's one reason ADD has captured the imagination of so many people, and why the diagnosis has become so seductive that it sometimes seems more like a designer label on a piece of clothing than a real, potentially disabling disorder.

Pseudo-ADD has many of the same core symptoms as true ADD -- a high level of impulsivity, an ongoing search for high stimulation, a tendency to restless behavior and impatience, and a very active, fleeting attention span.

It's easy to see how our culture can induce as ADD-like state. When I was a little boy, growing up in the 1950s, television had only recently come into every American's living room, and dial telephones had not yet appeared in my small town. Now we all have access to everyone else, any time, anywhere, always. A colleague of mine recently received 40,000 pieces of e-mail in a week. Computers, cell and car phones, satellite technology, fax, copy and answering machines, VCRs, cable TV, the Internet, video conferences -- all these are now commonplace. We are, as the cliche has it, wired -- stimulated and speeded up day and night, constantly sending and receiving messages.

And yet, as we've become hyperconnected electronically, we've become disconnected interpersonally. We no longer sit down and talk, face-to-face, the way we once did. Each connection is briefer, more fleeting, and followed by another as ephemeral. Without a feeling of deep and stable connectedness, people feel at sea; distracted, restless, and hungry for something ever nameless -- the very same symptoms we associate with ADD.

Because ADD so resembles the side effects of living in the late-twentieth century, the diagnostician must sometimes ask, "Does this person suffer from attention deficit disorder or just a severe case of modern life?" The answer is usually clear-cut. The symptoms of pseudo-ADD melt away when the individual is taken out of the ADD-ogenic environment. In true ADD the symptoms remain. The treatment for pseudo-ADD is to slow down and connect with what matters to you. Turn off the TV and turn down the answering machines; have dinner together with your family or companions; get to know your neighbors; re-establish contact with your extended family; and learn to say no to some of the endless requests for your time.

This is easier said than done, as multitudes of seemingly irresistible demands press upon the gateways to our minds all the time. How can we live wired but still plugged in, face-to-face? One answer is to shift our society, to reinvent from the ground up the structures that used to work for us but don't work well today, such as family, church, social clubs, the small town and the neighborhood. The more practical answer is to take responsibility as individuals and vigorously insist upon a calmer, more connected lifestyle. You'll fighting the tide of an entire culture, but the reward is a richer, fuller, more meaningful life.

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