Leaving Parents Out of a Redefinition of Mental Health Care is Bad for Kids

I write as the mother of a son who is 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 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.