ADD: Does It Really Exist?
Several years ago I worked for an organization that assisted teachers in using the arts in their classrooms. We were located in a large warehouse in Cambridge, Massachusetts, and several children from the surrounding lower-working-class neighborhood volunteered to help with routine jobs. I recall one child, Eddie, a 9-year-old African American youngster possessed of great vitality and energy, who was particularly valuable in helping out with many tasks. These jobs included going around the city with an adult supervisor, finding recycled materials that could be used by teachers in developing arts programs, and then organizing them and even field-testing them back at the headquarters. In the context of this arts organization, Eddie was a definite asset.
A few months after this experience, I became involved in a special program through Lesley College in Cambridge, where I was getting my master's degree in special education. This project involved studying special education programs designed to help students who were having problems learning or behaving in regular classrooms in several Boston-area school districts. During one visit to a Cambridge resource room, I unexpectedly ran into Eddie. Eddie was a real problem in this classroom. He couldn't stay in his seat, wandered around the room, talked out of turn, and basically made the teacher's life miserable. Eddie seemed like a fish out of water. In the context of this school's special education program, Eddie was anything but an asset. In retrospect, he appeared to fit the definition of a child with attention deficit disorder (ADD).
Over the past 15 years, ADD has grown from a malady known only to a few cognitive researchers and special educators into a national phenomenon. Books on the subject have flooded the marketplace, as have special assessments, learning programs, residential schools, parent advocacy groups, clinical services, and medications to treat the "disorder." (The production of Ritalin or methylphenidate hydrochloride -- the most common medication used to treat ADD -- has increased 450% in the past four years, according to the Drug Enforcement Agency.) The disorder has solid support as a discrete medical problem from the Department of Education, the American Psychiatric Association, and many other agencies.
I'm troubled by the speed with which both the public and the professional community have embraced ADD. Thinking back to my experience with Eddie and the disparity that existed between Eddie in the arts organization and Eddie in the special education classroom, I wonder whether this "disorder" really exists in the child at all, or whether, more properly, it exists in the relationships that are present between the child and his or her environment. Unlike other medical disorders, such as diabetes or pneumonia, this is a disorder that pops up in one setting only to disappear in another. A physician mother of a child labeled ADD wrote to me not long ago about her frustration with this protean diagnosis: "I began pointing out to people that my child is capable of long periods of concentration when he is watching his favorite sci-fi video or examining the inner workings of a pin-tumbler lock. I notice that the next year's definition states that some kids with ADD are capable of normal attention in certain specific circumstances. Poof. A few thousand more kids instantly fall into the definition."
There is in fact substantial evidence to suggest that children labeled ADD do not show symptoms of this disorder in several different real-life contexts. First, up to 80% of them don't appear to be ADD when in the physician's office. They also seem to behave normally in other unfamiliar settings where there is a one-to-one interaction with an adult (and this is especially true when the adult happens to be their father). Second, they appear to be indistinguishable from so-called normals when they are in classrooms or other learning environments where children can choose their own learning activities and pace themselves through those experiences. Third, they seem to perform quite normally when they are paid to do specific activities designed to assess attention. Fourth, and perhaps most significant, children labeled ADD behave and attend quite normally when they are involved in activities that interest them, that are novel in some way, or that involve high levels of stimulation. Finally, as many as 70% of these children reach adulthood only to discover that the ADD has apparently just gone away.
It's understandable, then, that prevalence figures for ADD vary widely -- far more widely than the 3% to 5% figure that popular books and articles use as a standard. As Russell Barkley points out in his classic work on attention deficits, Attention Deficit Hyperactivity Disorder: A Handbook for Diagnosis and Treatment, the 3% to 5% figure "hinges on how one chooses to define ADHD, the population studied, the geographic locale of the survey, and even the degree of agreement required among parents, teachers and professionals.... Estimates vary between 10% and 20%." In fact, estimates fluctuate even more than Barkley suggests. In one epidemiological survey conducted in England, only two children out of 2,199 were diagnosed as hyperactive (.09%)." Conversely, in Israel, 28% of children were rated by teachers as hyperactive." And in an earlier study conducted in the U.S., teachers rated 49.7% of boys as restless, 43.5% of boys as having a "short attention span," and 43.5 % of boys as "inattentive to what others say."
The Rating Game
These wildly divergent statistics call into question the assessments used to decide who is diagnosed as having ADD and who is not. Among the most frequently used tools for this purpose are behavior rating scales. These are typically checklists consisting of items that relate to the child's attention and behavior at home or at school. In one widely used assessment, teachers are asked to rate the child on a scale from I (almost never) to 5 (almost always) with regard to behavioral statements such as: "Fidgety (hands always busy)," "Restless (squirms in seat)," and "Follows a sequence of instructions." The problem with these scales is that they depend on subjective judgments by teachers and parents who may have a deep, and often subconscious, emotional investment in the outcome. After all, a diagnosis of ADD may lead to medication to keep a child compliant at home or may result in special education placement in the school to relieve a regular classroom teacher of having to teach a troublesome child.
Moreover, since these behavior rating scales depend on opinion rather than fact, there are no objective criteria through which to decide how much a child is demonstrating symptoms of ADD. What is the difference in terms of hard data, for example, between a child who scores a 5 on being fidgety and a child who scores a 4? Do the scores mean that the first child is one point more fidgety than the second? Of course not. The idea of assigning a number to a behavior trait raises the additional problem, addressed above, of context. The child may be a 5 on "fidgetiness" in some contexts (during worksheet time, for example) and a 1 at other times (during recess, during motivating activities, and at other highly stimulating times of the day). Who is to decide what the final number should be based on? If a teacher places more importance on workbook learning than on hands-on activities, such as building with blocks, the rating may be biased toward academic tasks, yet such an assessment would hardly paint an accurate picture of the child's total experience in school, let alone in life.
It's not surprising, then, to discover that there is often disagreement among parents, teachers, and professionals using these behavior rating scales as to who exactly is hyperactive or ADD. In one study, parent, teacher, and physician groups were asked to identify hyperactive children in a sample of 5,000 elementary school children. Approximately 5% were considered hyperactive by at least one of the groups, while only 1% were considered hyperactive by all three groups." In another study using a well-known behavior rating scale, mothers and fathers agreed that their children were hyperactive only about 32% of the time, and the correspondence between parent and teacher ratings was even worse: they agreed only about 13% of the time."
These behavior rating scales implicitly ask parents and teachers to compare a potential ADD child's attention and behavior to those of a "normal" child. But this raises the question, What is normal behavior? Do normal children fidget? Of course they do. Do normal children have trouble paying attention? Yes, under certain circumstances. Then exactly when does normal fidgeting turn into ADD fidgeting, and when does normal difficulty paying attention become ADD difficulty?
These questions have not been adequately addressed by professionals in the field, yet they remain pressing issues that seriously undermine the legitimacy of these behavior rating scales. Curiously, with all the focus being placed on children who score at the high end of the hyperactivity and distractibility continuum, virtually no one in the field talks about children who must statistically exist at the opposite end of the spectrum: children who are too focused, too compliant, too still, or too hypoactive. Why don't we have special classes, medications, and treatments for these children as well?
A Brave New World of Soulless Tests
Another ADD diagnostic tool is a test that assigns children special "continuous performance tasks" (CPTs). These tasks usually involve repetitious actions that require the examinee to remain alert and attentive throughout the test. The earliest versions of these tasks were developed to select candidates for radar operations during World War II. Their use with children in today's world is highly questionable. One of the most popular of the current CPT instruments is the Gordon Diagnostic System (GDS). This Orwellian device consists of a plastic box with a large button on the front and an electronic display above it that flashes a series of random digits. The child is told to press the button every time a "1" is followed by a "9." The box then records the number of "hits" and "misses" made by the child. More complex versions involving multiple digits are used with older children and adults.
Quite apart from the fact that this task bears no resemblance to anything else that children will ever do in their lives, the GDS creates an "objective" score that is taken as an important measure of a child's ability to attend. In reality, it tells us only how a child will perform when attending to a repetitive series of meaningless numbers on a soulless task. Yet ADD expert Russell Barkley writes, "[the GDS] is the only CPT that has enough available evidence ... to be adopted for clinical practice." As a result, the GDS is used not only to diagnose ADD but also to determine and adjust medication doses in children with the label.
There is a broader difficulty with the use of any standardized assessment to identify children as having ADD. Most of the tests used (including behavior rating scales and continuous performance tasks) have attempted to be validated as indicators of ADD through a process that involves testing groups of children who have previously been labeled ADD and comparing their test results with those of groups of children who have been judged to be "normal." If the assessment shows that it can discriminate between these two groups to a significant degree, it is then touted as a valid indicator of ADD. However, one must ask how the initial group of ADD children originally came to be identified as ADD. The answer would have to be through an earlier test. And how do we know that the earlier test was a valid indicator of ADD? Because it was validated using two groups: ADD and normal. How do we know that this group of ADD children was in fact ADD? Through an even earlier test ... and so on, ad infinitum. There is no Prime Mover in this chain of tests; no First Test for ADD that has been declared self-referential and infallible. Consequently, the validity of these tests must always remain in doubt.
In Search of a Deficit
Even if we admit that such tests could tell the difference between children labeled ADD and "normal" children, recent evidence suggests that there really aren't any significant differences between these two groups. Researchers at the Hospital for Sick Children in Toronto, for example, discovered that the performance of children who had been labeled ADD did not deteriorate over time on a continuous performance task any more than did that of a group of so-called normal children. They concluded that these "ADD children" did not appear to have a unique sustained attention deficit."
In another study, conducted at the University of Groningen in the Netherlands, children were presented with irrelevant information on a task to see if they would become distracted from their central focus, which involved identifying groups of dots (focusing on groups of four dots and ignoring groups of three or five dots) on a piece of paper. So-called hyperactive children did not become distracted any more than so-called normal children, leading the researchers to conclude that there did not seem to be a focused attention deficit in these children." Other studies have suggested that "ADD children" don't appear to have problems with short-term memory or with other factors that are important in paying attention." Where, then, is the attention deficit?
A Model of Machines and Disease
The ADD myth is essentially a paradigm or world view that has certain assumptions about human beings at its core. Unfortunately, the beliefs about human capacity addressed in the ADD paradigm are not terribly positive ones. It appears as if the ADD myth tacitly endorses the view that human beings function very much like machines. From this perspective, ADD represents something very much like a mechanical breakdown. This underlying belief shows up most clearly in the kinds of explanations that parents, teachers, and professionals give to children labeled ADD about their problems. In one book for children titled Otto Learns About His Medicine, a red car named Otto goes to a mechanic after experiencing difficulties in car school. The mechanic says to Otto, "Your motor does go too fast," and he recommends a special car medicine .
While attending a national conference on ADD, I heard experts share similar ways of explaining ADD to children, including comparisons to planes ("Your mind is like a big jet plane ... you're having trouble in the cockpit), a car radio ("You have trouble filtering out noise"), and television ("You're experiencing difficulty with the channel selector"). These simplistic metaphors seem to imply that human beings really aren't very complex organisms and that one simply needs to find the right wrench, use the proper gas, or tinker with the appropriate circuit box -- and all will be well. They are also just a short hop away from more insulting mechanical metaphors ("Your elevator doesn't go all the way to the top floor").
The other feature that strikes me as being at the heart of the ADD myth is the focus on disease and disability. I was particularly struck by this mindset while attending a workshop with a leading authority on ADD who started out his lecture by saying that he would treat ADD as a medical disorder with its own etiology (causes), pathogenesis (development), clinical features (symptoms), and epidemiology (prevalence). Proponents of this view talk about the fact that there is "no cure" for ADD and that parents need to go through a "grieving process" once they receive a "diagnosis". ADD guru Russell Barkley commented in a recent address: "Although these children do not look physically disabled, they are neurologically handicapped nonetheless.... Remember, this is a disabled child." Absent from this perspective is any mention of a child's potential or other manifestations of health -- traits that are crucial in helping a child achieve success in life. In fact, the literature on the strengths, talents, and abilities of children labeled ADD is almost nonexistent
In Search of the ADD Brain
Naturally, in order to make the claim that ADD is a disease, there must be a medical or biological cause for it. Yet, as with everything else about ADD, no one is exactly sure what causes it. Possible biological causes that have been proposed include genetic factors, biochemical abnormalities (imbalances of such brain chemicals as serotonin, dopamine, and norepinephrine), neurological damage, lead poisoning, thyroid problems, prenatal exposure to various chemical agents, and delayed myelinization of the "nerve pathways in the brain."
In its search for a physical cause, the ADD movement reached a milestone with the 1990 publication in the New England Journal of Medicine of a study by Alan Zametkin and his colleagues at the National Institute of Mental Health. This study appeared to link hyperactivity in adults with reduced metabolism of glucose (a prime energy source) in the premotor cortex and the superior prefrontal cortex -- areas of the brain that are involved in the control of attention, planning, and motor activity. In other words, these areas of the brain were not working as hard as they should have been, according to Zametkin.
The media picked up on Zarmetkin's research and reported it nationally. ADD proponents latched on to this study as "proof" of the medical basis for ADD. Pictures depicting the spread of glucose through a "normal" brain compared to a "hyperactive" brain began showing up in CH.A.D.D. (Children and Adults with Attention Deficit Disorder) literature and at the organization's conventions and meetings. One ADD advocate seemed to speak for many in the ADD movement when she wrote: "In November 1990, parents of children with ADD heaved a collective sigh of relief when Dr. Alan Zametkin released a report that hyperactivity (which is closely linked to ADD) results from an insufficient rate of glucose metabolism in the brain. Finally, commented a supporter, we have an answer to skeptics who pass this off as bratty behavior caused by poor parenting."
What was not reported by the media or cheered by the ADD community was the study by Zametkin and others that came out three years later in the Archives of General Psychiatry. In an attempt to repeat the 1990 study with adolescents, the researchers found no significant differences between the brains of so-called hyperactive subjects and those of so-called normal subjects. And in retrospect, the results of the first study didn't look so good either. When the original 1990 study was controlled for sex (there were more men in the hyperactive group than in the control group), there was no significant difference between groups.
A recent critique of Zametkin's research by faculty members at the University of Nebraska also pointed out that the study did not make clear whether the lower glucose rates found in "hyperactive brains" were a cause or a result of attention problems. The critics pointed out that, if subjects were startled and then had their levels of adrenalin monitored, adrenalin levels would probably be quite high. We would not say, however, that these individuals had an adrenalin disorder. Rather, we'd look at the underlying conditions that led to abnormal adrenalin levels. Similarly, even if biochemical differences did exist in the so-called hyperactive brain, we ought to be looking at the nonbiological factors that could account for some of these differences, including stress, learning style, and temperament.
The Stigma of ADD
Unfortunately, there seems to be little desire in the professional community to engage in dialogue about the reality of attention deficit disorder; its presence on the American educational scene seems to be a fait accompli. This is regrettable, since ADD is a psychiatric disorder, and millions of children and adults run the risk of stigmatization from the application of this label.
In 1991, when such major educational organizations as the National Education Association (NEA), the National Association of School Psychologists (NASP), and the National Association for the Advancement of Colored People (NAACP) successfully opposed the authorization by Congress of ADD as a legally handicapping condition, NEA spokesperson Debra DeLee wrote, "Establishing a new category [ADD] based on behavioral characteristics alone, such as overactivity, impulsiveness, and inattentiveness, increases the likelihood of inappropriate labeling for racial, ethnic, and linguistic minority students." And Peg Dawson, former NASP president, pointed out,
"We don't think that a proliferation of labels is the best way to address the ADD issue. It's in the best interest of all children that we stop creating categories of exclusion and start responding to the needs of individual children."
ADD nevertheless continues to gain ground as
the label du jour in American education. It's time to stop and
take stock of this "disorder" and decide whether it
really exists or is instead more a manifestation of society's need
to have such a disorder.
For more information, read The Myth of the A.D.D. Child: 50 Ways to Improve Your Child's Behavior and Attention Span without Drugs, Labels, or Coercion (New York: Dutton, 1995) and visit Thomas Armstrong's website.
This article first appeared in Phi Delta Kappan, 1996. Reprinted with permission of the author. © Dr. Thomas Armstrong