Too many psychiatric diagnoses for children: an epidemic of labels

Allen Frances, professor of child psychiatry at Duke University and chair of the DSM IV(Diagnostic and Statistical Manual of Mental Disorders) task force hit the nail on the head in a recent commentary "Why So Many Epidemics of Childhood Mental Disorders?" in the Journal of Developmental and Behavioral Pediatrics. Because he makes his argument so clearly and persuasively (and the full article is only available to those who subscribe to the journal) I will quote it at length.

Since the publication of DSM-IV in 1994, the rates of 3 mental disorders have skyrocketed: attention deficit disorder (ADD) tripled, autism increased by 20-fold, and childhood bipolar disorder by 40-fold. It is no accident that diagnostic inflation has focused on the mental disorders of children and teenagers. These are inherently difficult to diagnose accurately because youngsters have a short track record; are in developmental flux that makes presentations transient and unstable; are sensitive to family, peer, and school stresses; and may be using drugs. If ever diagnosis should be conservative, it should be in kids. Instead, we have experienced an unprecedented diagnostic exuberance encouraged in part by DSM-IV, but mostly stimulated by the powerful external forces of drug company marketing and the close coupling of school services to a diagnosis of mental disorder.

He gives the example of ADHD, describing how the revisions to DSM IV had anticipated a jump in diagnoses in girls with the additon of an "inattentive" subtype. But in fact there was an unexpected tripling of ADHD rates and parallel increase in use of psychiatric medication. He writes:

Three years after DSM-IV was published, drug companies introduced new and expensive on-patent drugs that provided the incentive and resources for an aggressive marketing campaign to psychiatrists, pediatricians, and family doctors. Simultaneously, successful drug company lobbying gave them unrestricted freedom to advertise directly to consumers. Parents and teachers were inundated with the message that ADD was terribly underdiagnosed and easily treated with a pill. Sales of ADD drugs ballooned to an astounding $7 billion.

He then moves on to bipolar disorder:

Childhood bipolar disorder is an even more chilling case. DSM-IV had wisely rejected a proposal that there be a separate and much looser definition of bipolar disorder in children. The argument for inclusion rested on the unreplicated findings of just 1 (albeit very influential) research group suggesting that kids present a developmentally different prodromal form of bipolar disorder characterized by ambient irritability, impulsivity, and temper outbursts, rather than the typical cyclical mood swings of adults. Rejection by DSM-IV did not stop charismatic thought leaders (who were heavily financed by drug companies) from spreading the gospel of childhood bipolar disorder. The 40-fold increase in rates was accompanied by an increase in antipsychotic spending up to $18.2 billion in 2011. These drugs frequently cause massive weight gain in children. The overuse of antipsychotics in kids was not deterred by the fact that childhood obesity is an important risk factor for diabetes and heart disease. Drug companies have received billion dollar fines for off-label marketing to kids, but these pale in comparison to the enormous revenues. Of note, the inappropriate use of antipsychotics is most pronounced among children who are economically disadvantaged.

He then accurately depicts the link between the rise in diagnoses of autism with the fact that a diagnosis is needed for a child to receive appropriate services:

The introduction of Asperger's by DSM-IV was expected to result in a 3- to 4-fold increase rates of autism. Severe classic autism had an unmistakable presentation with rates lower than 1 per 2000. Asperger's blends imperceptibly into normal eccentricity, and the rates of autism are now reported at 1 per 88 in the United States and 1 in 38 in Korea. Theories connecting the increase in prevalence to vaccination have been discredited. Instead, the rates have grown so rapidly because a diagnosis of autism is required to allow a child access to greatly enhanced school services. About half the youngsters who now receive the diagnosis do not really meet the DSM-IV criteria when these are carefully applied. And follow-up studies finding that half the kids no longer meet criteria also confirm that diagnostic inflation is rampant. Eligibility for school services should be decoupled from an unreliable clinical diagnosis and instead be based on educational need. 

The challenge, and Frances does acknowledge this fact, is to avoid over-diagnosis while at the same time not undertreating those who need help. Most of the children who receive these labels, and their families, are struggling in significant ways. They do need help,  and sometimes lots of it. The issue is inextricably linked with the need to "name" the problem, a need comes in part from both clinicians and parents, who may feel more of a sense of control if what they are struggling with has a name, and also insurance companies who require a diagnosis for reimbursement of services.

Psychiatric diagnoses in children, by definition, place the problem squarely in the child, when in fact it is almost always more complex than this. Genetic vulnerability and environment both have an important role to play. A recent article in the Archives of Diseases of Childhood; Poverty, Maltreatment and Attention Deficit Hyperactivity Disorder offers insight in to this complexity:

This paper hypothesises that the population of children receiving a clinical diagnosis of ADHD is aetiologically heterogeneous: that within this population, there is a group for whom the development of ADHD is largely genetically driven, and another who have a 'phenocopy' of ADHD as a result of very adverse early childhood experiences, with the prevalence of this phenocopy being heavily skewed towards populations living with poverty and violence. A third group will have a high genetic risk and have been exposed to violence.

The key phrase here is "aetiologically heterogeneous." Psychiatric labels, be it "ADHD" "bipolar disorder" or "autism," are artificial constructs that provide a false sense of simplicity.  When I see a child and family in consultation, the aim of the work is to take the time to listen to the story and understand where, and it may be in several places, the "problem" actually lies. In order to help these children and families in a meaningful way, we need to be able to, in the words of one of my mentors Ed Tronick, "embrace complexity."