- BIOETHICS FORUM ESSAY
Redefining ADHD: Disagreement over Values
Attention deficit hyperactivity disorder (ADHD) has been controversial for decades, especially as diagnosis rates rose tenfold during the 1990s and 2000s. The newly proposed options for changing ADHD’s diagnostic criteria keep the door open to continued growth in ADHD’s prevalence. If adopted, any of the proposed options will satisfy those who commend expansion and concern those who do not.
The multiple ongoing controversies mean that people can have very different reasons for supporting or objecting to the current (DSM-IV-TR) or proposed (for DSM-V) criteria. Some controversies are scientific: data aren’t yet clear on basics such as ADHD’s etiology, course, long-term treatment efficacy, or subdivision into types. Largely, though, the disagreements have been over values.
Some debates center on values that link diagnostic criteria to socially proscribed behaviors (fidgeting and squirming, interrupting others) and to socially approved achievements (finishing schoolwork). Others concern broader social values and conditions that have tended to promote ADHD: inflexible school expectations, parents’ needs, intensifying workplace requirements, individual desires to fit in with peers, and drug companies’ push for profits. Even the medical value of compassion for those who are, to use the DSM’s word, “impaired,” provokes differing responses.
The disagreement is whether ADHD, with its broad range of severity and expression, should so often be “managed” in the medical diagnose-and-treat model, directing care to the individual, or whether more emphasis should be placed on changing attitudes or social structures, with a goal of increased tolerance of difference.
In making recommendations for DSM-V, the ADHD and Disruptive Behavior Disorder Work Group attempted to address valid criticisms while balancing nosological trade-offs and meeting medical and practical needs. The broadest options for change involve the overall structure of the diagnosis.
The general structure could (option 1) stay the same, leaving ADHD with three subtypes: hyperactive-impulsive, inattentive, and combined; (option 2) have no coded subtypes, but four clinically recognized patterns – three corresponding to the present subtypes, plus a new “restrictive predominantly inattentive” pattern that would fill the gap between the inattentive and the combined patterns; or (option 3) make ADHD criteria resemble the combined subtype, but with a variant called attention deficit disorder (ADD) closely corresponding to the inattentive subtype. Under any of these options, either the hyperactive-impulsive dimension could stay the same or four new impulsivity criteria could be added.
Narrower but still significant changes are also proposed. One suggestion is to raise the age-of-onset criterion from age 7 to age 12. This option addresses concerns that symptoms of inattention can easily go unnoticed until late childhood. Another proposal is to decrease the diagnostic threshold for adults from six criteria (as required in children) to three. A third proposal requires a third party, such as a teacher or spouse, to verify impairment.
Finally – and this is the sole recommendation for which no “no change” option is listed – the diagnostic criteria would be elaborated to include more examples of specific behaviors. For example, the current inattentive symptom, “Often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities” would continue with this language: “Work has to be checked for accuracy, details are often missed or skipped, materials are not reviewed systematically.”
All of these proposed changes, except for the requirement for third-party verification, would tend to increase the number of diagnosable people. The general structural changes would expand the category either by allowing more symptom patterns to be diagnosable (option 2) or by highlighting and partitioning inattention (option 3) – a move that would tend to make the ADD diagnosis more acceptable. (Inattentive type ADHD/ADD is more common than the hyperactive type in girls/women, so any increase in diagnoses would particularly affect this group.)
Adding new impulsive symptoms would tend to increase diagnoses because the new criteria allow a subset of individuals not captured by the current criteria to come under observation. The Work Group explicitly states that raising the age-of-onset criterion to 12 is likely to increase diagnostic rates. It is similarly clear that reducing the symptom requirements for adults would expand the number of diagnosable people.
The case is not quite as clear with the elaborated criteria descriptions. But the committee highlights the “Risk that a single example will be taken as the sole reference for the broader criterion.” The diagnosis of ADHD is supposed to be based on a pattern of behavior, not on isolated difficulties. If, in practice, single examples are instead taken as the reference, people with a narrower set of problematic behaviors could be diagnosable.
In general, too, the elaborations add symptoms as much as they clarify them. For example, to the hyperactivity-impulsivity criterion, “Often fidgets with hands or feet or squirms in seat,” would be added, “often moves in chair, taps legs or fingers, is uncomfortable during sedentary activities.” Like feeling “uncomfortable,” several other proposed additions are subjective, such as having “irrelevant thoughts,” “feeling hemmed in,” and “losing focus.” The increased emphasis on subjective symptoms again potentially raises prevalence.
Recent statistics show that 7.8 percent of children and adolescents and 4.4 percent of adults have received a diagnosis. But does that mean that continued expansion is a problem?
Let’s ask a slightly different question: for whom is an ADHD diagnosis an advantage? It is clearly an advantage to those marketing products and services to diagnosable individuals. Other third parties also stand to benefit – parents, teachers, and employers from gaining short-term control; clinicians from having a straightforward solution to patient problems; and researchers from investigating a prominent object of study. And, of course, millions of patients would argue that it benefits them.
But there is limited evidence that current diagnostic and treatment practices are effective in the long term for outcomes that matter to the treated individuals. For example, no specific intervention – educational, behavioral, or pharmacological – has yet been shown to improve academic achievement over the long term. And intolerance of those who have ADHD continues: empirical studies suggest that individuals with ADHD are perceived negatively.
Arguably, negative perceptions would persist in the absence of diagnosis. But my own theoretical work suggests that the values packed into the diagnostic criteria heighten the negative views – that is, it is not just that people find those with ADHD annoying, but also that stigmatizing views are reinforced by current diagnostic (and scientific) practices.
The new options for ADHD diagnostic criteria continue to reinforce the negative value placed on those behaviors, and the “guilt by association” that comes with the diagnostic label. To the extent that ADHD is not tolerated, or is stigmatized, an increase in prevalence directs such negative attitudes toward more people.
The ambiguity of the advantage to diagnosable individuals, coupled with the continued influence from various institutional interests, suggests caution about revisions that are likely to increase the number of people diagnosed. That the options so far presented for ADHD continue the decades-long push for expansion tells a familiar tale.
Susan Hawthorne is a visiting assistant professor in the department of philosophy at Mount Holyoke College.
Published on: April 16, 2010
Published in: Health and Health Care