How We Get Labeled
By JOHN CLOUD Sunday, Jan. 12, 2003
Pardon the personal question, but have you ever had a sexual fantasy involving the use of
a nonliving object — Anna Kournikova's tennis outfit, say, or Tom Cruise's Risky
Business skivvies? Actually, don't answer that — we really don't want to know — and
you should probably think twice before telling your therapist. She might diagnose you
with fetishism, which is listed along with schizophrenia and bipolar disorder in a curious
but extremely influential book called the Diagnostic and Statistical Manual of Mental
Disorders, or DSM for short.
The DSM lists the criteria used by mental-health professionals to make their various
diagnoses, from "mild mental retardation" (the first listing) to "personality disorder not
otherwise specified" (the last); there are more than 350 in all. Hence this 943-page
doorstop is one of the most important books you've never heard of. And the inscrutable
process of writing it is starting up again. The American Psychiatric Association (A.P.A.),
the manual's publisher, recently began planning a giant review of the book. The new
edition, the fifth — called DSM V — will appear around 2010. Evidently, it takes a long
time to figure out all the ways America is nuts.
The first official attempt to measure the prevalence of mental illness in the U.S. came in
1840, when the Census included a question on "idiocy/insanity." From that single
category flowered many more disorders, but each asylum classified them differently. The
DSM was first published in 1952 so that "stress reaction" would mean the same in an
Arkansas hospital as it does in a Vermont one.
The DSM works like this: imagine you are Tony Soprano in the first season of The
Sopranos. You have, in DSM-ese, "recurrent, unexpected panic attacks." You also have
"persistent concern about having additional attacks," and you fear you're "losing control,
having a heart attack, 'going crazy.'" You aren't on drugs (other than all those bottles of
Vesuvio's wine), so — presto — Dr. Melfi gives you a diagnosis of panic disorder, DSM
No. 300.01. By the way, if you truly think you are Tony Soprano, see No. 295,
schizophrenia.
Of course, in the real world, psychiatric diagnosis doesn't — or at least shouldn't — work
like a checklist at a sushi counter. Many of the items that appear as diagnostic criteria in
the DSM are sometimes symptoms of a disorder and sometimes signs of perfectly normal
behavior. An adolescent who "often argues with adults" may have an unusual condition
called "oppositional defiant disorder" or a more common condition called "being 14 years
old." The DSM includes a cautionary statement saying it takes clinical training to tell the
difference. But many nonspecialists use the book too: insurers open the DSM when
disputes arise over the proper course of treatment for particular conditions. (If your
treatment doesn't jibe with the DSM, you may not get reimbursed.) DSM diagnoses can
be used by courts to lock you in a mental hospital or by schools to place your child in
special-education classes. A DSM label can become a stigma.
All of which raises a pressing question: What actually goes into defining a disorder?
A.P.A. officials take this question seriously, and they understand the high stakes of a
DSM diagnosis. That's one reason they so often revise the book to keep it current with the
latest research. (Three editions have been published since 1986.) According to Dr. Darrel
Regier, chief of A.P.A. research, roughly 1,000 mental-health professionals will help
produce DSM V. The A.P.A. will host at least a dozen conferences, review unending
piles of literature and conduct new studies to see whether proposed changes would work
in clinical settings.
But like the conditions it helps diagnose, the DSM is more than the sum of its symptoms.
As the American storehouse of insanity — the dictionary of everything we consider
mentally unbalanced — it's a window into the national psyche. And so it bears close
reading, and close questioning, by those outside the psychiatric establishment. Why is
caffeine intoxication included as a disorder when sex addiction isn't? Why is pathological
gambling apparently crazy when compulsive shopping isn't?
More important, can even a thousand Ph.D.s gathered at a dozen conferences ever really
know the significance of such vague symptoms as "fatigue," "low self-esteem" and
"feelings of hopelessness"? (You need only two of those, along with a couple of friends
telling the doctor you seem depressed, to be a good candidate for something called
dysthymic disorder.) Though it's fashionable these days to think of psychiatry as just
another arm of medicine, there is no biological test for any of these disorders. While
imaging techniques have shown abnormalities in the brain of some people with
schizophrenia, no scan can diagnose even that severe condition, let alone something
opaque like "histrionic personality disorder." (For which the DSM lists the following as a
sign: "consistently uses physical appearance to draw attention to self." So I'm sick if I
exchange my Aunt Thelma's drab sweaters for flashier ones every Christmas?)
If the DSM is all we've got, why is it inherently flawed? Because many forces besides
science shape it, including politics, fashion and tradition. The A.P.A. actually once held a
vote among its members to see whether an alleged disorder — homosexuality — existed.
(In 1974, being gay was deemed sane by a vote of 5,854 to 3,810.) Women's groups
helped excise "self-defeating personality disorder" from the book. The revised third
edition, in 1987, said the typical sufferer "chooses people and situations that lead to
disappointment, failure, or mistreatment even when better options are clearly available."
But feminists successfully argued that battered women could unfairly fit this category.
Other questionable diagnoses stay in the book because no one fights hard enough to
remove them. Thus heterosexual men can be diagnosed with a supposed disorder called
"transvestic fetishism" if they meet only two criteria: they have sexual fantasies about
cross-dressing, and those fantasies cause "impairment in social, occupational, or other
important areas." In other words, someone is sick not if he has the fantasies but if he gets
caught having them — for instance, if his boss reads a kinky e-mail he sent at work,
which then leads to a pink slip ("occupational impairment").
"For some of these, there is an issue of grandfathering," admits Dr. Michael First, editor
of DSM IV. "The onus is on the person who wants to change it to prove that we should
do so." First also acknowledges that the A.P.A. does not subject every criterion to
rigorous scientific testing, "for practical reasons of continuity." Which may be another
way of saying some old-timers still bill sessions for "transvestic fetishists," and they don't
want to lose the DSM stamp of approval needed for insurance reimbursement.
To be sure, a few disorders are dropped from each edition. First notes that a supposed
childhood condition called identity disorder was excluded from DSM IV even though
many child psychologists wanted to keep it. Kids could qualify for that disorder if they
were "uncertain" about long-term goals, career choice and friendship patterns. "We said,
'Wait a minute. This looks like normal adolescence,'" says First, "and so we eliminated
it."
The DSM's critics say this sit-around-the-table-and-jawbone method isn't really science.
Jerome Wakefield, a Rutgers professor of social work, says that while the DSM's authors
do try to eliminate errors so that normal emotional reactions aren't diagnosed as
disorders, "there's no systematic process here. Changes are made on a very ad hoc basis,
where people say, 'Oh, my god, we forgot X.'" Others have even harsher criticism. Dr.
Paul McHugh, who chairs the department of psychiatry and behavioral sciences at Johns
Hopkins University School of Medicine, says the DSM has lost its usefulness partly
because it has "permitted groups of 'experts' with a bias to propose the existence of
conditions without anything more than a definition and a checklist of symptoms. This is
just how witches used to be identified." He cites multiple-personality disorder as an
example of an "imagined diagnosis"; while much of the evidence supporting its existence
has been debunked, multiple-personality disorder is still listed in the DSM, though today
it's called "dissociative identity disorder."
New controversies have already erupted over what to put in DSM V. For instance, the
A.P.A. is considering adding "relational disorders"--severe problems between spouses or
siblings — to the fifth edition. Relational-disorder sufferers are completely sane except
when they are around, say, their spouse. Skeptics contend that marital spats shouldn't be
considered mental illnesses. A group of Stanford researchers wants to put "compulsive
shopping disorder" into DSM V, but First doesn't seem to like the idea. While a number
of studies have shown that pathological gambling exists and can be measured, he says,
compulsive shopping "has received virtually no research attention to date." (The same
goes for sex addiction, according to other psychiatrists: it's just Clinton-era pop
psychology thus far, not a documentable illness.)
How could the DSM be improved? Critics say the A.P.A. should start by holding every
diagnosis to tough scientific standards. Antiquated notions about deviant sexuality should
be brought up to date or scrapped altogether. McHugh of Johns Hopkins suggests that the
DSM become more than a laundry list of symptoms — some of which are always going
to be ambiguous — by organizing psychiatric conditions around what he calls their
"fundamental natures." Accordingly, he would use four categories of disorders: those
arising from brain disease, those arising from problems controlling one's drive, those
arising from problematic personal dispositions and those arising from life circumstances.
While such groupings are imperfect — is alcoholism caused by a brain disease or a
problem in controlling one's drive, or a little of both?--they at least get clinicians focused
not only on the symptoms of an illness but on its possible causes as well.
In the end, though, the DSM can't achieve certainty because psychiatry can't. Unless
brain researchers discover exactly how neurological mechanisms become abnormal, the
DSM will always include more hypotheses than answers. Which means all those guys
fantasizing about tennis outfits are probably just weird, not certifiable.