Over the course of my life, I have been given no fewer than five
different diagnoses for mental illnesses, under the diagnostic system
laid out in psychiatry’s “bible,” the DSM. But it was a sixth
diagnosis— one that ironically will no longer appear in the edition
being rolled out this week, DSM-5—
that probably most accurately describes what is genuinely different
about me. I’m sharing this because my experience is a case study for
explaining why the latest revision to the manual is raising such ire.
My journey from diagnosis to diagnosis illustrates both the pitfalls
and the promise of psychiatry and why we can expect to improve some ways
in which we identify mental illness, and why there are other aspects of
diagnosing these conditions that will remain unsatisfactory without
further scientific advances.
Dr. Allen Frances, who chaired the publishing process for the
previous revision, the DSM-IV, and is critical of the DSM-5 in his new
book, Saving Normal, published an editorial in the Annals of Internal Medicine highlighting some of his issues with the latest revision. Citing
the “crisis in confidence” in psychiatry over diagnosis, he calls on
physicians to “use the DSM cautiously, if at all.” DSM 5, he argues, is
overrun with “diagnostic inflation”— for example, labeling grief as
depression and placing the 40% of college students who binge drink at
risk of diagnosis equivalent to alcoholism.
Frances isn’t the only one who has concerns about DSM-5. Last week,
the the director of the National Institute of Mental Health, Dr. Thomas
Insel, posted a blog
in which he announced that even for research purposes, the DSM had
outlived its usefulness. “NIMH will be re-orienting its research away
from DSM categories,” he wrote. The problem, he said, is that the DSM is
based on subjective descriptions of collections of symptoms that tend
to occur together — but not on the physiological or psychological
mechanisms that cause them.
As Insel put it, “Unlike our definitions of heart disease, lymphoma
or AIDS, the DSM diagnoses are based on a consensus about clusters of
clinical symptoms, not any objective laboratory measures. In the rest
of medicine, this would be equivalent to creating diagnostic systems
based on the nature of chest pain.” In other words, such a system could
mistake heartburn for a heart attack and classify both as the same type
of problem. Unfortunately, as he also admits, there isn’t a better
system: NIMH is seeking to develop one based on brain research, but
this does nothing for patients who need help now.
I can attest to that. My multiple diagnoses are the rule, not the
exception, and one criticism of the DSM structure is that if you
qualify for one diagnosis, you typically also qualify for others. Which
one should be treated? Or do they all require interventions? And what if
the therapies conflict with each other? You see the problem.
My symptoms started in early childhood and were linked to a
collection of both positive and negative attributes. I was both
obsessively interested in ideas and completely overwhelmed by my senses.
Loud sounds, itchy clothes, new tastes, being held and any type of
novelty that wasn’t intellectual disturbed me. I started reading at age
three and withdrew into a whirl of academic achievement and social
awkwardness. I had obsessive, repetitive behavior such as ritually
counting certain actions like swinging on the swings — although I mostly
managed to hide it, except for in being unable to shut up about my
weird interests.
Given those symptoms, today I would almost certainly be diagnosed
with Asperger’s Syndrome, the one diagnosis DSM-5 seems to have
tightened, merging it into the spectrum of conditions that constitute
autism (Asperger’s doesn’t even appear in the index as a separate
condition).
At the time, however, the diagnosis didn’t exist. So instead of being
seen as having some type of disorder, I was labeled as “selfish” and
“gifted.” I folded both of these characteristics into my identity,
convincing myself they made me a “bad person,” who might only redeem the
fact that she preferred ideas to people by achieving overwhelming
intellectual success.
While some argue that medicalizing labels like those in the DSM only
do harm, my case was probably one in which they might have helped. Had I
known I had Asperger’s for example, I wouldn’t have felt so bad about
my bossiness and apparent disregard for other people — I would have
realized that they were part of a brain difference that came with both
advantages and disadvantages, not a matter of moral deficits. I would
have also been explicitly taught how to do better in ways I could
understand.
By the time I got to junior high school, I desperately wanted friends
but had no idea how to make them, and my frustration made me unhappy.
My social cluelessness also made me a target for bullies and by high
school, I was quite depressed. That, however, was not something people
expected in teens at the time.
Enter drugs, of the nonpsychiatric variety. In high school, I
discovered that getting high not only gave me comfort and a sense of
belonging, but an obsession that wouldn’t bore others when I pursued it
endlessly. Instead of isolating me, this obsession allowed me to
connect. By my second semester of college, I was addicted to cocaine
and by the end of sophomore year, I was injecting heroin and had to
leave Columbia University.
At this point, I finally started getting diagnosed — properly— when
prison was a real possibility. When I chose to enter rehab at 23, I was
correctly diagnosed with cocaine and heroin dependence — not exactly a
difficult categorization to make of an 80 pound woman covered with track
marks who tested positive for both drugs. Those were my first two
official diagnoses and they were accurate. Score one for DSM.
But about halfway through my 28-day inpatient stay, I had what cannot
have been more than a five minute visit with the program’s
psychiatrist. Although I doubt he could have picked me out of a line up
later that day, within two minutes of questioning me, I was diagnosed
as bipolar and prescribed lithium. It is certainly true that I have a
habit of talking quickly and while detoxing from cocaine and heroin, I
absolutely had severe mood swings. However, I have never had anything
close to a real manic episode and didn’t suggest otherwise in the
conversation.
Bipolar is a classic example of the DSM’s diagnostic inflation. It
is now possible to be diagnosed with types of the disorder that do not
include what was once its defining characteristic — becoming so elated
or agitated that you lose touch with reality. It is quite likely that I
met the criteria for a type called bipolar II — a disorder where you
have periods of depression that alternate with periods of upbeat mood
that do not cross the line into mania. But the diagnosis didn’t
accurately characterize what was actually happening to me at the time,
which was basically that my already odd brain was recovering from
several years of severe addiction.
Later, I would pick up several other diagnoses: in early recovery, a
therapist noted my obsessive tendencies and added the
obsessive-compulsive disorder (OCD) label and when I suffered a new bout
of depression, that, too, got added to the list.
So, what did the DSM do for me? I collected diagnoses, but none of
them— aside from the one I never officially received — fully described
my real problems. The addictions were real— but they didn’t simply
arise because I took drugs. I took drugs because I didn’t know how to
deal with the depression and social isolation of what I now suspect is
Asperger’s. The addiction treatment system failed to correctly identify
my underlying issues and gave me a label with little consideration.
Indeed, if I’d held on to the bipolar diagnosis, I could have been
severely harmed by inappropriate medications. The OCD diagnosis at
least accurately characterized my obsessive nature — but virtually
everyone with Asperger’s could also be diagnosed OCD; it doesn’t provide
the whole story. Like the addictions, the depression was certainly real
but it, too, was probably secondary to the social isolation caused by
the Asperger’s. However, my treatment for depression with
antidepressants was probably the most useful therapy I received: it
actually reduced the sensory and emotional overload I’d tried to address
by self-medicating with the illegal drugs.
The problem of multiple diagnoses like mine is one reason NIMH wants
to abandon DSM and replace it with a system that looks at the brain
systems that are going awry rather than focusing solely on symptoms.
That, some experts like Insel believe, can lead to better understanding
of how best to treat specific issues in these circuits. So maybe, if
someone had recognized and treated my sensory and emotional overload
early on, rather than labeling them as signs of selfishness or simply
being “gifted” or “different,” it might have prevented both the
depression and the addiction.
The NIMH’s “research domain criteria (RDoC)” classification system
however, isn’t ideal either. For one, it assumes a pretty robust
understanding of the circuitry in the brain that dictates normal
function, as well as how these networks go awry in mental illness— and
that’s a level of knowledge we still haven’t achieved. The search for
genetic and chemical markers of specific problems has also been hampered
by the failure of these problems to line up with DSM diagnoses. There
might, for example, be a gene that predisposes someone to “get stuck” on
negative thoughts — but it might not show up in studies of people with
depression because there are many roads to depression that may not
involve that gene. Focusing simply on single symptoms and their genetics
in this way may help clarify the situation — as NIMH plans to do — but
we are far from having these answers.
And if researchers do eventually trace specific symptoms to their
chemical and neural-circuit roots, how will they sort out the variety of
unique symptoms and diagnose them properly? The more symptoms that
psychiatrists may uncover, the more the combinations of symptoms will
multiply and the more difficult it will be for both clinicians and
patients to properly interpret the information.
And such genetic and biochemical markers will only take us so far.
My problems developed not just because of my genetic predispositions, of
which I’m sure there are many, but because of my environment and my
psychological reactions to them. Those responses are sometimes amenable
to medication and may indeed require it — but typically, cognitive and
social changes are needed as well. A diagnostic system that tries to
reduce the brain to biology would be like a computer technician who
knows only how to fix hardware but not the software: not very effective
if the software is what’s acting up.
Frances argues — and I agree — that such biology-based criteria for
defining mental illness are still far off, and that for now, the DSM
criteria are the best way that doctors can help patients today, in the
clinic. But he argues that we need to tighten up the DSM criteria and
recognize that college binge drinking, for example, shouldn’t lead to a
lifelong diagnosis of having had a “substance use disorder” that doesn’t
categorically distinguish between alcoholism and milder drinking
problems.
Such measures could also reduce the over-treatment of conditions that
don’t require psychiatric care, such as ordinary grief. Yes, the
current DSM-based system is no doubt perpetuated by a drug industry that
markets both disorders and their treatments, and, as my own case
showed, it can lead to incorrect labeling and risky medication
treatments. The symptom-based definition of mental illness also
encourages labeling of conditions and disorders in a way that implies
far more knowledge of mental disorders than is actually the case;
government programs, school systems and insurers all rely on being able
to tag symptoms with a name to determine eligibility for services. We do
need diagnoses: but both psychiatrists and patients alike should
recognize that these labels are neither immutable nor perfect.
Sources :
http://healthland.time.com/2013/05/17/viewpoint-my-case-shows-whats-right-and-wrong-with-psychiatric-diagnoses/
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