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the protean diagnosis: problems with today's version of add


Excerpted from Running on Ritalin: A Physician Reflects on Children Society, and Performance in a Pill (Bantam, 1998). (pp.253-6) Copyright Lawrence Diller. Reprinted with permission.
In drawing attention to problems with the ADD diagnosis, I must emphasize that neither I nor any mainstream physician who treats children would deny the existence of a core group of patients who have significant problems that can be associated with inherent overactivity, attention deficit, or impulsivity. A diagnosis of ADD can help both the children and their families understand that these problems are not just willful bad behavior. If nothing else, we've learned that in dealing with "problem personalities," the line between "he won't behave" and "he can't behave" is very hard to draw. Though it happens less today than in the past, I've met parents who were convinced their difficult child's angry, deceitful, and irresponsible behavior was the irrevocable outgrowth of a bad character. When such children are shown to meet criteria for ADD, it allows the parents to reenvision the situation as something that can be remedied and to see their child in a more humane way.

That said, I'll briefly outline what I see as the most troublesome aspects of how ADD is currently framed in official psychiatry:

The process of establishing "objective" diagnostic standards for ADD has itself been quite subjective. The people in medicine's academic circles who define disorders are inevitably influenced by the biases and sociopolitical interests of their time. For example, the DSM classified homosexuality as a sexual disorder until 1974, when pressure from gay advocates within and outside the profession lead to removal of the "disease" label. Similarly, a new category, post-traumatic stress disorder, was developed in response to work with veterans of the war in Vietnam.

The professionals who create or revise DSM categories are recruited by the American Psychiatric Association, and political considerations, as well as professional relationships and rivalries, inevitably enter into the selection process. In essence, various experts, primarily from academia and research, choose one another. Clashing factions on a disorder may sit on the same committee, and decisions are sometimes made for reasons other than strict science.

A case in point involves the evolution of ADD criteria. When the diagnostic standards were being revised for DSM-IV, the committee instituted a series of field trials in an attempt to correlate the number of symptoms to the degree of a patient's impairment. A study group of some nine hundred children was chosen, and information was collected from parents, teachers, and children through interviews and other means. In each case, an experienced clinician ultimately determined the diagnosis after reviewing this information. These diagnoses in turn were used to determine which symptoms, and how many, were key to the diagnosis.

Yet even after all this earnest effort, politics prevailed. The main study group had determined that only five of nine symptoms would be required to qualify for a diagnosis of "ADHD: hyperactive/inattentive subtype" (that is, a "combined" version of the disorder). But then the supervisory DSM-IV task force astonishingly overruled this decision and increased the number of symptoms required to six! Presumably, they were concerned that five criteria were too few and might result in too many children being diagnosed with this type of ADD, but the arbitrariness of their action has little to do with science.

Such episodes have raised doubts even within the inner circle of the profession. Herman van Praag, who once headed the psychiatry department at the Albert Einstein College of Medicine (and was instrumental in helping rewrite DSM-III), comments: "Today's classification of the major psychiatric disorders is as confusing as it used to be some thirty years ago. All things considered, the present situation is worse. Then, psychiatrists were at least aware that diagnostic chaos reigned and many of them had no high opinion of diagnosis anyhow. Now, the chaos is codified, and thus much more hidden."

Official guidelines for evaluating ADD symptoms are vague and open to interpretation--yet they lead to an all-or-nothing diagnosis. In all the behaviors listed by the DSM under ADD, the word "often" is used to describe behavior that has become a problem. How useful is this? In thinking about [a child referred to me for evaluation] Steven Gordon, for example, I wonder how the term applies to his playing with pencils. Does it mean, perhaps, three times in an hour? Or just often enough to be noticed? And is it the frequency that makes it a problem, or something else? What precisely does he do with the pencil--is he tapping it, gnawing on it, rolling it in his fingers? (One of these might suggest over activity, another might indicate anxiety, yet another just boredom.)

A certain kind of absurdity begins to enter this process. Careers are now based on measuring and quantifying children's levels of activity, and there exists a commercial device called the Actometer that purports to monitor the activity rate of the child wearing it. No doubt we've all been stumped at one time or another when asked to answer questions about whether we do something "always," "sometimes," "seldom," or "never." It has been shown that when parents are first presented with such measures--rather than asked simply to describe the behaviors in detail--they often choose one that sounds more serious, perhaps to reinforce their own feeling that a problem indeed exists. This would be natural enough.

Another fact becomes apparent on close scrutiny of the DSM symptom lists: Certain behaviors reiterate others. For example, "often loses things necessary for tasks and activities" sounds an awful lot like "is often forgetful in daily activities." If counting symptoms is the point, this produces two "yes" answers to fundamentally the same question.

Despite the vague, general, and repetitive nature of the DSM's symptoms, however, and the difficulty of judging their frequency, the evaluator finally is required to make an all-or-nothing decision. Patients either meet the criteria for the diagnosis or they don't. If their symptoms meet the criteria, then they "have" a psychiatric disorder. This has important consequences for the people diagnosed, for suddenly they're not just experiencing significant coping problems; rather, they have a disease. (l'll explore the implications of this further as we proceed.)

In contrast, many clinicians (and parents) recognize that a spectrum of problem behavior exists, from relatively "normal" activity and distractibility at one end to major acting out at the other. But what if a child demonstrates only five of the nine qualifying behaviors instead of the six required for a diagnosis? Does he have "mild" ADD or "near" ADD? How serious is his problem? A categorical approach to diagnosis surely is useful in research, but in a clinical setting a dimensional model" (reflecting the spectrum of impairment) or a needs-based model (emphasizing what the child needs in treatment) would be more useful. The present ADD diagnosis falls short in this regard, and thus offers only limited help to a doctor's real-life decision making.

The ADD diagnosis has no definitive medical or psychological marker, and so it is often made exclusively on the basis of a patient's history. In seeking a diagnosis for any medical condition, we look for some kind of marker, a reasonably sure sign that we're heading in the right direction. In physical medicine, we're often looking for a bacterium that can be cultured and identified, and if we find it, we prescribe a medication known to combat that bacterium. In psychology, certain kinds of learning disabilities have fairly specific markers: If someone performs normally on most sections of a standard test but poorly on its block design or coding portions, this strongly suggests the presence of a visual processing problem. As yet, however, no such marker exists for ADD. Researchers naturally are looking under every rock, and some claim to be able to use brain scanning techniques to identify specific abnormalities associated with ADD. But there is nothing conclusive.

In the absence of this--whether we call it a marker or a cause--we are left with a disorder whose diagnosis is based solely on symptoms. In the past, those symptoms would have to have been demonstrated by the patient in the presence of a doctor (or other qualified evaluator). The DSM, however, now states that "symptoms are typically variable and may not be observed directly by the clinician." Instead, the clinician is encouraged to lean heavily on history--usually reports from parents and/or teachers--to make the diagnosis.

Once again, subjectivity enters the picture. The circumstances and biases of those reporting a child's behavior are seldom taken into account. If Sheila Gordon, for example, were depressed, as moms of troubled kids often are, she would be likely to overreport Steven's problems; If Steven's teacher in a regular classroom is feeling overwhelmed by too many kids and unable to cope with a few who are disruptive, he or she might well say that he wandered to the window "often" rather than "sometimes." (It's been shown that general-education teachers tend to overreport compared with special-ed teachers.) And if Steven's dad felt helpless to control his son's problem behavior, he too would show a bias toward overstating it. In all probability, none of them do this deliberately, but it happens--and that being so, the current trend toward diagnosing without ever seeing the child is all the more troublesome.

Sir Michael Rutter, one of the most influential figures in child psychiatry in recent decades, observes that any diagnosis, in order to be useful, should be distinctive from other disorders in its causation, natural progression, or treatment. Rutter feels that ADD as currently defined does not meet these standards. First, there is no identified cause specific to ADD. Second, its progress and likely outcome are very hard to differentiate from certain other childhood disorders. (We don't know, for instance, whether Steven's behavior is traceable to ADD or if his anger and acting out are primarily a response to inconsistent feedback from his parents. In any case, whether or not his behavior is labeled ADD may not matter in how things turn out for him.) And finally, the effects of the usual treatment for ADD-- Ritalin--are not specific to the disorder. The drug potentially improves the performance of anyone--child or adult, ADD-diagnosed or not. Whatever the source of Steven's problems, if they are the kind that improve on Ritalin, that treatment will probably work.

In short, with ADD, the symptoms are the disease. We are left with the possibility that ADD may be a catch-all condition encompassing a variety of children's behavioral problems with various causes, both biologically predetermined and psychosocial. And the fact that Ritalin helps with so many problems may be encouraging the ADD diagnosis to expand its boundaries.

The ADD diagnosis is overly focused on the individual and doesn't take sufficient account of family systems and other environmental factors. The DSM in general does not directly take note of "systemic" issues such as family dynamics. For my work with children and families, I would prefer a more holistic diagnostic system--one that gives more emphasis to relationships. Examples might include the feedback links between inconsistent parenting and children with difficult personalities, or between a failing marriage and depression. In the DSM's handling of ADD in particular, the demands and responses of environment are not perceived as critical to the diagnosis, except perhaps in extreme circumstances (for example, abuse or neglect, which might prompt an alternative diagnosis for a child). This failure to allow for the role of environment seems especially important when the patient is a child; by virtue of their size and level of development, children are especially vulnerable to environmental influences. I came across a telling comment on this situation in the letters column of a 1995 issue of the journal Pediatrics. New York pediatrician Daniel L. Zeidner writes:

It has become increasingly apparent to me, and perhaps to other pediatricians, that a new syndrome exists among adults who teach our schoolaged children: Teacher Deficit Disorder, or TDD. I have observed that this diagnosis should be made on the teacher when the following classic signs and symptoms exist among one or more of his/her students: students who fidget in class constantly moving their fingers or legs, who do not pay attention, who frequently daydream, who do not complete their homework or classwork, and who frequently get out of their seats. When students exhibit these manifestations, the teacher should be diagnosed with TDD and, of course, should be medicated immediately with amphetamine or other drugs that should speed him/her up, thus making him/her...more dynamic and interesting to his/her students.

This of course is satire, but Zeidner's observations and logic are as impeccable as those in any real DSM diagnosis.

In its current phase as a "disorder for all seasons, " ADD has become too inclusive. It has lost relevance to the age-related, developmental nature of some core problems. The effect of all the diagnostic and interpretative changes around ADD in the last two decades has been to greatly increase the number of children and adults receiving the diagnosis. In the mid 1970s, a child pretty much had to demonstrate some signs of hyperactivity or impulsivity in the doctor's office. Today, children can behave and perform quite normally in the doctor's office yet meet the criteria for ADD by reports of difficulties at home or school.

Normal performance in many situations is not a disqualifier as long as underperformance occurs in critical areas. A child may concentrate well on any number of subjects or activities--for example, building with Legos or doing artwork--but if he is struggling to complete schoolwork and home chores, he could still qualify for ADD with "selective inattention." He might even overconcentrate on, say, television or the Internet and not respond to requests to shift his focus. This behavior, too, gets interpreted within the ADD framework as "attentional inconstancy."

The ADD subtypes are related to age and developmental issues, yet the DSM does not acknowledge this. Younger children generally aren't presented with situations in which long-term focus is an issue, so they are not likely to be diagnosed with inattention problems; however, hyperactivity can cause problems for their families and preschool teachers. Attention deficits and impulsivity, if they exist, become highlighted when the demands of school and peer relationships grow in importance. And they are the issues around which adults diagnosed with ADD have problems. Prior to 1980 adults were not considered candidates for the disorder, because few still show signs of hyperactivity.

One consequence of the greater number of adults seeking evaluation for ADD today is a further weakening of the diagnostic criteria. Recall that DSM requires that the patient have a history of symptoms beginning before the age of seven. Many adults, not surprisingly, don't have access to such history of their early life, or can't remember back that far. So for quite a while this criterion has been quietly overlooked in making diagnoses for adults; as of late 1997 the leading experts have called for its elimination altogether.

ADD as officially described can look a lot like certain other childhood psychiatric disorders. And many children meet criteria for some, but not all, of the symptoms of several different conditions. ...

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