Plenty of children refuse to eat their vegetables, but for some the problem extends far beyond picky eating. In severe cases, abnormal eating patterns can lead to dangerously low body weight or nutrient deficiencies. Such children meet the criteria for a diagnosis made official by the American Psychiatric Association in 2013: avoidant/restrictive food intake disorder (ARFID). Since its addition to the psychiatric manual, the diagnosis has remained largely unused because of a general lack of awareness and understanding on the part of clinicians. Last July, in an effort to bring attention to the oversight, two pediatricians published a review in the Journal of Adolescent Health discussing the meager strides made in the two years since the creation of the diagnosis.

In the years leading up to 2013, clinicians were seeing a group of preteen and adolescent patients who shared a number of food-related symptoms, such as extreme pickiness or very low caloric intake, but who were too old to be diagnosed with a feeding disorder of infancy or early childhood. “Clinicians were clearly seeing patients with restrictive eating disorders without body-image or weight concerns,” which are a hallmark of other eating disorders, explains Rollyn Ornstein, an adolescent medicine physician at Penn State Hershey Medical Center, who was not involved in the new paper. Eating-disorder experts created the diagnosis of ARFID to improve treatment of these patients and facilitate research into their condition.

The group of people who have ARFID differs significantly from those with other eating disorders. More boys are diagnosed, and patients are more likely to suffer from anxiety disorders. They also tend to be diagnosed at younger ages—average age of diagnosis is 11 or 12, compared with 14 or 15 for other eating disorders—although some are adults who have struggled for decades. Symptoms often seem to be related to difficulties in early childhood, such as an incident of choking or vomiting, a poor caretaker-child relationship, or psychosocial problems such as depression or anxiety. This deep history can make ARFID tricky to treat, although one intervention has shown promise: exposure-response prevention, in which patients slowly reintegrate certain foods while learning to avoid their unhealthy reactions.

Despite the clear need for the diagnosis and the two years that have passed since its creation, surveys show that 63 percent of pediatricians have never heard of ARFID, and patients suffer on average 33 months before diagnosis. These statistics are alarming, the authors of the new paper point out, considering that the prevalence of ARFID has been estimated at 3.2 percent in the general population and from 14 to 22.5 percent among children in pediatric treatment programs for any kind of eating disorder.

Ongoing studies are aimed at increasing awareness and use of the diagnosis, which will allow for research into a larger sample of patients. “Once we identify and characterize these cases, we can begin to study different types of treatments, long-term outcomes and root causes of the illness,” says Debra Katzman, a pediatrician at the Hospital for Sick Children in Toronto and an author of the recent paper. Getting a correct diagnosis is important for individuals, too—standard interventions for failure to thrive (when a child stops growing) could make ARFID worse, and treatment becomes more difficult the longer ARFID lingers. Experts hope knowledge about the diagnosis will start spreading more quickly—for kids with the disorder, the clock is ticking.