Who's Left Out of the DSM-5 Debate? Consumers and, it Appears, Science Writers
It is not an overstatement to say that the current battle over revisions to the DSM-5, the handbook for psychiatric diagnoses, is blowing apart the mental health profession. So I suspected that my writing on some key points of contention as an "outsider" (not a psychiatrist or psychologist) with an opinion piece (not an objectively reported article) on PsychologyToday.com was not necessarily going to be well-received. As an independent science writer and an advocate for mental health care consumers, I was always in a small minority on the magazine's web roster. As it turns out, my opinion was not welcome and resulted in my being asked to leave after I criticized the editors for not including a consumer or pro-DSM-5 revisions perspective in their latest special section on the topic. In my reading of what happened, the inherent tension of my previous arrangement there is indicative of what health journalists face when they wander into the professional camp they're covering. My posts for the time being be found on PsychCentral.com and on my personal site MentalHealthMomBlog.com.
Mental health care in the U.S. is at a crossroads; with the current debate within psychiatry over proposed changes to the profession's handbook for making diagnoses, the DSM-5, now at a fever pitch. And while even well-informed readers may be unaware of its details or implications, the outcome of this debate will determine the average American's mental health care choices for decades to come.
But let us not allow the psychiatric profession to avoid a perhaps inconvenient reality. With DSM-5 approval, a set of symptoms receives a diagnosis that allows for insurance reimbursement. Without it, the average patient or family is largely on its own, medically and financially, and yet, consumer voices are largely absent from this debate, sadly, even from today's special Psychology Today focus "Is it a Disorder?"
For this reason and many others, it's time for members of this very insular profession--of whom a recent N.Y.T. article suggested only some 15% actually treat patients beyond medication management-- to open its ears and listen to those who are most impacted by their decisions.
I write as the mother of a son who in 1998 at age 17 experienced a psychotic break and treaded dangerously close to the precipice of full-blown schizophrenia. Because at the time we had above-average insurance and lived within reach of a top research hospital (UCLA Neuropsychiatric Institute) my son received what is now called an early intervention with antipsychotic medication and psychotherapy-and as a result fully recovered.
Today, as a science writer and mental health care advocate, I am gravely concerned that the rights of other patients and parents to receive access to this type of early intervention will be disallowed if the "anti" forces in this DSM-5 debate succeed.
They include respected psychologists and psychiatrists, along with former patients who have been wronged by mistaken psychiatric diagnoses and overtreatment. In petitions and calls for congressional hearings, they warn that proposed broader categories for conditions such as depression, bipolar disorder and psychosis, including preliminary states of these full blown disorders, will amount to a "medicalizing" of normality; with echoes of a Soviet style regime of forced treatment and blanket stigmatizing among the results.
The "pro" side points to the existence and unmet need for evidence-based, staged models where minimally invasive treatments are used until and unless symptoms worsen-treatment models they point out that are accepted medicine in the U.K., Europe and elsewhere. A reality that does not sufficiently inform this debate is the fact that the majority of young patients who exhibit the full complement of symptoms of a mental disorder, up to 60 percent according to the NIMH, have inadequate or no mental health care coverage with which to address these problems. Most are seen by general practitioners or in hospital E.Rs.
As my friend and fellow author (with whom I share lived experience with severe depression) Andrew Solomon put it in a recent private communication in which we shared our concerns over the tenor of the current DSM-5 debate, put it, "The diagnoses are stigmatizing, and the interventions can be hellish. But if we can get it right, and catch people before the onset of major symptoms, the amount of suffering we can avoid is incalculable."
In the words of psychiatrist Demian Rose who currently treats young people, most ages 16 to 25, for early onset psychosis at the University of California San Francisco-affiliated PREP Clinic, "The problem with the current diagnostic standard is that it ‘waits' until it's absolutely sure that dysfunction has been present for 6 months before confirming schizophrenia; so the message to parents and patients is all too often: ‘Let's wait this out. You're either going off a cliff. Or you'll be okay. We're not sure which.' The real question should be how can clinicians reduce the risk of conversion while minimizing the risk and burden of any treatments."
To my ears, the current DSM-5 debate comes down to the question of who has the right to decide when an individual and a family have suffered enough. By continuing this now very public, war of words over the difficult choice of whether to give a child or teenager a psychiatric medication, I think we've lost sight of what's really at stake here. As those who treat them make clear, these young people are already very ill when they come seeking help. My sense of urgency comes from having watched my son's two painful years of decline until he became a shadow of his former self. No young person should have to stay in that state any longer than necessary.