CCPR: You say that Disruptive Mood Dysregulation Disorder (DMDD) is really just a proxy for temper tantrums. Other experts say that this is a diagnosis for those kids who are very disabled but don’t fit the category of childhood bipolar disorder.
Dr. Frances: I think that there needs to be a tremendous re-education in the field about the fallacy of bipolar disorder and the carelessness with which antipsychotic and mood stabilizing medicines have been given to kids with sometimes outrageous consequences. To counteract the drug company conferences, there should have been conferences sponsored by the American Psychiatric Association, child psychiatry groups, pediatricians, and family care practitioners teaching their members that this diagnosis is not official, has gotten out of hand, and led to harmful treatments. The solution of handing down a new diagnosis meant to counteract the problems of the old diagnosis just sets up the new target. The research on temper dysregulation disorder or disruptive mood dysregulation disorder, however it is labeled, is markedly thin.
CCPR: So what do you do with those kids that are clearly in distress, whose families are also distress, but who don’t fall into any of the diagnostic criteria of the DSM?
Dr. Frances: I think the crucial point here is to recognize the value of not-otherwise-specified (NOS) diagnoses. We can’t ever have a system that is going to cover all the great turmoil and great difficulty of human life. But when you make a diagnosis official, it takes on a life of its own and leads to unintended consequences that can be particularly dangerous. I am not against treating with medication a kid who is having all sorts of problems that we don’t have a diagnosis for. But in these situations, I trust the individual clinical judgment of the practitioner to make the NOS diagnosis, rather than having an official diagnosis that makes it sound like we know what we are doing, that we studied it carefully, and that we understand the risks and benefits. Once something gets a separate diagnostic label and a code it takes on a life of its own. For some kids, we should admit our uncertainly. In lots of situations in life we just don’t know what is best, and for those kids it doesn’t make sense to make up a diagnosis if we don’t understand.
CCPR: Is your primary criticism of the DSM-5 process that the consequences of new diagnostic categories were not fully considered?
Dr. Frances: Yes, I think that DSM-IV was meant to be conservative, and even with DSM-IV we had lots of unintended consequences. DSM-5 was ambitiously innovative in an attempt to be prematurely paradigm shifting. It started out with the dream of having a more biological method of diagnosis. When this failed, it reduced the thresholds for defining mental disorders in the hope of stimulating preventive psychiatry. But for none of the new conditions introduced by DSM-5, and for none of the reduction of thresholds for old diagnoses, is there any evidence at all that we can meet the three standards that are important before you can safely make a change. Those are:
1) Accurately identify the patients that are being described or we have a lot of false positives.
2) Have treatments that will help the people you do identify.
3) Ensure that treatment is safe.
For none of the DSM-5 changes are these criteria met. In each instance there will be tons of false positives. There has been no study showing treatment is effective, and in each instance there are risks that treatments that will be used in real life may be harmful.
Because insurance requires a diagnosis on the first visit, kids get a label that may last for life, and may be irrelevant to their long-term needs.
~ Allen Frances, MD
CCPR: What do you propose as a solution?
Dr. Frances: I think that the American Psychiatric Association should no longer be controlling a document that has gained such enormous societal implications—at this point, not just for clinical work but for determining insurance, disability, school services, who goes to prison, who gets to have custody over a child, who gets to fly a plane or buy a gun, and so on. All sorts of things are determined by psychiatric diagnosis beyond the clinical. For safety’s sake, we need a more FDA-type of approach to vetting the diagnostic system. New diagnoses in psychiatry now are much more dangerous than new drugs because they can lead to millions of people being misdiagnosed and getting drugs that they don’t need. Drug companies marketing to consumers, which occurs really just in the United States, needs to end. We need to stop the idea that drug companies can market diseases the way they market beer or cars. I think the insurance industry needs to have a different perspective. They created a requirement for a diagnosis on first visits thinking that this would be a screen that would reduce costs. In actual fact, over the long run it greatly increases costs. It would be much better to have a moratorium period early in evaluations where you didn’t have to have a diagnosis—where it is just an evaluation visit. Parents and consumers need to be better educated about the risks as well as the benefits of psychiatric diagnosis. I think the really tragic thing is the misallocation of resources. We are spending billions of dollars on unnecessary medication for people who would do better without it. At the same time, we have a million psychiatric patients in prison for nuisance crimes that would have been avoided had they had adequate community treatment and housing. We have closed a million psychiatric beds in the last 50 years, and not so coincidentally, we have opened a million prisons beds for psychiatric patients (US Department of Justice, Bureau of Justice Statistics Special Report 2006; http://1.usa.gov/17nLjdm). The NIMH shouldn’t just be a brain institute advocating for brain research that may help people in the future. Past experience shows that the translation from basic neuroscience to helping patients in a practical way is painfully slow.
CCPR: Thank you, Dr. Frances.
Dr. Frances is the author of The Essentials of Psychiatric Diagnosis (Guilford 2013) and Saving Normal (HarperCollins 2013).