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Psychiatric Diagnosis by the People's Choice

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The American Psychiatric Association (APA) plans to release the newest edition of America's psychiatric bible, the Diagnostic and Statistical Manual of Mental Disorders, Edition V (DSM-V) in 2013. The last version, DSM-IV-TR, was published in 2000. The effort to determine what constitutes normal and abnormal behavior in America is apparently an ongoing process. For this iteration, the APA super committee managing the next DSM decided that all the subcommittee wrangling entailed in determining what constitutes a specific disorder (e.g., depression, attention deficit disorder, etc.) should be kept secret. That hasn't kept the larger public from making its feelings known about the information that's been intentionally leaked for reaction.

In the space of four days last week, three separate op-eds appeared in New York Times that relate to the new DSM. Clearly, at least the editors of the Times feel these issues are important and of public interest. The three reveal subtle changes in societal attitudes and perceptions to previous DSMs, which in the end should strongly influence organized psychiatry's diagnostic endeavors.

Last Sunday's opinion section front page featured an essay by longtime ADD researcher L. Alan Sroufe, entitled "Ritalin Gone Wrong." He points out that while stimulant drugs like Ritalin and Adderall can help children in the short term, there's no evidence that they make a difference long-term. He makes the case that early childhood trauma, neglect and misparenting lead to ADD. Brain scans, he says, which shows differences between ADD and normal children, can only link an association with biological changes in the brain, rather than -- as mainstream psychiatry insists -- that genetic brain and metabolic differences are the cause of ADD.

Next came Gary Greenberg's op-ed on Monday, "Not Diseases, but Categories of Suffering." Greenberg is writing a book on the making of the next DSM, and he sympathizes some for the hits the APA is taking as it releases bits and pieces of the manual. He correctly notes that for each change, somebody may win or lose a service, an accommodation or a reimbursement, because much of health and education policy is based on who has a specific constituted disorder. So when the APA committee on depression leaked the fact that it might remove the "bereavement exclusion" for depression after the loss of a spouse, many doctors, sociologists, etc. howled about how organized psychiatry continues to medicalize or pathologize normal (albeit difficult) coping.

On the other hand, parents of children with Asperger Syndrome, a form of mild autism, were upset and angry when news came that a committee on children's disorders was thinking of eliminating the diagnosis from the next DSM. In this case, the committee felt the criteria were simply too broad and vague and include too many children who are mildly socially awkward or shy. However, parents -- whose children have obtained special services in the schools such as preferred classroom seating, group counseling or bully protection -- are worried that without the diagnosis, their clearly disabled children would not have the entitlements for what to them is a biologically-derived condition.

Finally, on Wednesday, 27-year-old Benjamin Nugent wrote in the op-ed section a confessional of sorts, "I Had Asperger Syndrome. Briefly." In it, he recalls how his mother, a psychotherapist, engaged him at age 19 to be a poster child for Asperger Syndrome in an educational documentary she produced on the disorder. He had greatly struggled socially as a teenager, but by his early 20s discovered his social milieu of writers and film buffs and was much happier. He now looks back at the diagnosis (which, ostensibly, was lifelong) and noted how it held him back. He's forgiven his mother, who agrees the diagnosis was a mistake. He sides with the committee to eliminate the diagnosis.

I would add to Nugent's criticism that context is missing from all psychiatric diagnosis. Nugent had problems in high school, where social conforming is paramount. If you can locate your clique, you are fortunate. Young adults often find their social group after high school. Just deciding to go to college, and having a choice as to where he or she attends, make it easier for the unique individual to "fit in."

In its efforts to reform itself from the vagueness of the Freudian era that dominated American psychiatry and threatened its existence within organized medicine, the APA eliminated context as a factor in psychiatric disorders in 1980 with the DSM-III. Instead of including information on context, it simply listed behavioral criteria for each disorder (e.g. a child must exhibit six of nine excessive behaviors to meet criteria for ADD) and eschewed context or cause. However, since then, inherent genetic and biological factors have become the reigning implied dogma for the disorders listed in the DSM-III and beyond. No one less eminent than the founding author of DSM-III, Robert Spitzer, has said that eliminating context was a major error and context should be restored. My reading of the visible tea leaves of DSM-V so far suggests that it won't.

But what should we make of the continuing brou-ha-ha's associated with the development of DSM-V? The DSM is much more than a psychiatric guide determining categories and treatment. It is a social/economic/political manifesto, as well. As mentioned, the DSM determines medical insurance reimbursement and educational services. We operate within a diagnosis/disability culture, which is an insidious incentive for people to want to be determined as sicker. Doctors recognize this and regularly upgrade an illness to a slightly more serious condition. This is harder to do with a broken bone, but relatively easy to do with psychiatric diagnoses's vague and broad criteria (and in the absence of any biological markers).

Furthermore, whole industries -- especially the drug companies and doctors -- benefit economically when variations of normal coping are determined to be disease. To be clear, any criticism of the medicalization of behavior should not be equated with the anti-psychiatry movement. Genetic and biological factors play a role in all behavior, and in some cases are the primary cause of aberrant or dysfunctional coping. Nor should criticism of medicalization deny the short-term value of psychiatric drugs for coping. However, most psychiatric drugs work on everyone and are not specific to those with the "disorder." Fortunately, most of us (at this point though barely a majority) can cope without them.

I agree with Greenberg that the DSM disorders are agreed-upon social constructs that should have the goal of assisting people in coping with life -- to that extent that they are fluid in their concept and in their making. The three New York Times pieces suggest that an increasingly sophisticated public is challenging, more and more, the belief that the DSM disorders are hard, fast, unchanging biological disorders. It's been over 30 years since the publication of the then revolutionary DSM-III. The "success" of the new DSM ultimately comes down to the public's acceptance. Old power/economic interests (the psychiatrists, drug and insurance companies, even the patient self-groups identified with a particular disorder) will resist change, but the APA should be closely listening to the "People's Choice DSM." Otherwise, as an instrument of societal value, it will fail.

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