By KRISTIN JAVARAS 
Published: October 15, 2013

A recent publication by Leslie Sim, Jocelyn Lebow, and Marcie Billings at the Mayo Clinic describes the emergence of restricting eating disorders in two teens who were formerly obese. Although the teens were clearly exhibiting behavioral and cognitive symptoms of eating disorders, numerous healthcare professionals who treated the teens for the medical sequelae of eating disorders failed to detect the eating disorder or refer them for treatment.

In the previous diagnostic system (DSM-IV), individuals did not qualify for a formal diagnosis of anorexia nervosa unless they met the following criterion involving an absolute weight cutoff: “Refusal to maintain body weight at or above a minimally normal weight for age and height (e.g., weight loss leading to maintenance of body weight less than 85% of that expected; or failure to make expected weight gain during period of growth, leading to body weight less than 85% of that expected).” Thus, no matter how dramatic their weight loss, how extreme the restriction of eating, or how serious the medical consequences, individuals who started at a higher weight before developing a restrictive eating disorder and thus had not reached the 85% cutoff were instead diagnosed with eating disorder not otherwise specified (EDNOS), a catch-all category that includes individuals who do not meet strict diagnostic criteria for anorexia nervosa or bulimia nervosa. EDNOS is often (erroneously) viewed as less serious than disorders such as anorexia nervosa; as a result, individuals diagnosed with EDNOS may not be referred for specialist eating disorder treatment or may be denied treatment by their insurance. However, research suggests that individuals who are diagnosed with EDNOS, but have lost greater than 25% of their premorbid weight, are in some ways more medically compromised than individual diagnosed with anorexia nervosa.

The new diagnostic system (DSM-5) attempts to remedy the previous system’s shortcomings, identified during the almost two decades it was in use. In particular, the group who developed DSM-5 made an effort to relax criteria from the previous system that were not clinically meaningful (i.e., not prognostic of severity or course of the disorder) and thus arbitrarily excluded individuals from being diagnosed with a disorder, leading them to be diagnosed with EDNOS instead. One example is the aforementioned criterion for anorexia nervosa, which has been replaced with the following criterion: “Restriction of energy intake relative to requirements, leading to a significantly low body weight in the context of age, sex, developmental trajectory and physical health. Significantly low weight is defined as a weight that is less than minimally normal or, for children and adolescents, less than minimally expected.” The inclusion of “developmental trajectory” and “physical health” means that individuals who started at a higher weight, have lost significant amounts of weight, and are experiencing serious medical complications as a result could now be diagnosed with anorexia nervosa, provided they meet the other criteria. The new diagnostic criteria are intended to make it easier for individuals with eating disorders to receive care and to do so in a timely fashion, before their eating disorder becomes more entrenched and more difficult to treat.

However, the diagnostic system is only one factor in whether someone receives care for an eating disorder. Another major factor is the perception of what qualifies as an eating disorder among the public and medical professionals on the frontlines of healthcare. In practice, there is still a perception that an extremely low weight is a requirement for being diagnosed with an eating disorder. As a result, individuals who started at a higher weight before developing a restrictive eating disorder, or individuals engaging in bingeing and purging, may not be identified as having an eating disorder or referred for treatment despite serious medical and psychological complications. As a therapist who treats eating disorders, I have encountered numerous frustrated parents who recount how their child’s (likely well-meaning) pediatrician assured them that their child, who was clearly suffering psychologically and medically, didn’t have an eating disorder because “their weight wasn’t that low.” In their publication, Sim and colleagues note that eating disorders should not be diagnosed based on weight alone—a point that may seem obvious to eating disorder professionals but is not always well known outside the eating disorder field. Although changes in weight can of course provide an indication that eating has gone awry, eating disorders are fundamentally and definitionally disorders of eating, not of weight. Clearly, we need to continue efforts to educate healthcare professionals and the public that eating disorders can occur at any weight or size.