Who Is Left Out of the DSM-5 Debate? Of Course, Consumers

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Guest Column:
The Children's Mental Health Network invites guest opinions on current topics under debate in the children's mental health arena. This week, Victoria Costello, an Emmy Award winning science writer and a board member of the Mental Health Association of San Francisco, contributes an article about the proposed DSM-5 changes from a parent perspective.

Who Is Left Out of the DSM-5 Debate? Of Course, Consumers
from the article in Psychology Today, February 3, 2012...

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 anymore 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 over-treatment. 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 save 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."

I've also written previously about this sometimes hard to locate breaking point in the broader continuom between mental illness and normalcy to which Dr. Rose refers, in a PT post titled What if Mental Illness is a Universal Experience?

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.

Victoria Costello is an Emmy Award winning science writer and a board member of the Mental Health Association of San Francisco. Her book, A Lethal Inheritance, A Mother Uncovers the Science Behind Three Generations of Mental Illness, in which she details the pro and con side of early intervention for a number of family mental health disorders, is out now from Prometheus.

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