People used to just call it picky eating.
But that didn’t quite describe what is now a condition officially recognized by the American Psychiatric Association in its standard reference for diagnoses, the Diagnostic and Statistical Manual of Mental Disorders (DSM).
Now, it’s called Avoidant/Restrictive Food Intake Disorder, or ARFID. Since it has been named and recognized, diagnoses are increasing. And the research community is responding with studies that could one day shed more light on this perplexing, potentially debilitating condition.
To learn more about it, we spoke recently with Tracey Stassi, a registered dietitian at the Roxborough residential facility run by the Renfrew Center, which has centers across the country that treat eating disorders in adolescent girls and adult women.
ARFID is one of the newest eating disorder diagnoses. It was introduced into the DSM-5 in 2013. At the time, as many as 60% of individuals with eating disorders were falling under the umbrella of unspecified eating disorders. They didn’t meet the criteria for any other diagnosis. There wasn’t a specific treatment protocol. These patients were just looked at as being picky eaters. And we didn’t understand the consequences of ARFID because we weren’t researching it.
ARFID is an apparent lack of interest in food, or an avoidance of food, often based on the sensory characteristics of the food — how it smells, how it looks, how it tastes, how it feels in the mouth. Some patients can experience a feeling of fullness when they’re not actually full. Patients also may have a fear of swallowing or even choking or vomiting. Or they may have gotten sick from a certain food in the past and now they won’t eat it.
Overall, people with ARFID have an apparent lack of interest in food, such as not wanting to eat, not enjoying mealtimes, and not getting excited about any food. The condition affects both males and females. However, among males, more are being diagnosed with ARFID than with other eating disorders. It also affects adults as well as adolescents.
One of the major problems is that because people with ARFID aren’t eating enough food, or the right kinds of food, they can have significant weight loss, nutritional deficiencies, or a dependence on dietary supplements. It can affect the growth and development of a child or adolescent. That’s why early diagnosis and treatment are so important.
People with ARFID also may have difficulty participating in food-related social situations. For instance, they might feel nervous about going to dinner at someone else’s house. For an adult who seeks treatment, it may be prompted by a realization that their limited intake, because of fears they have related to food, is affecting their relationships and their social life. ARFID can be stressful for everyone involved. It can cause a lot of tension and frustration at mealtimes.
Unlike anorexia, where patients may have an intense fear of weight gain because of a body image issue, individuals with ARFID have different reasons for not eating food. For them, it’s not about the number on the scale.
ARFID is also much more than just picky eating. A picky eater may have limited diet, but he or she typically will still be able to find something to eat from each food group. Someone with ARFID, on the other hand, may restrict an entire food group. It varies from patient to patient, but we typically see patients avoiding fruits and vegetables because these tend to have the most difficult textures. Unlike a picky eating phase, which many children go through, ARFID is not something that a person just grows out of.
It is definitely more prevalent now than it was several years ago, but there’s no indication that the rise in ARFID cases is related to anything other than an increased awareness, now that it has a name.
We lack statistics in many areas. It’s still a new diagnosis. But more and more people are talking about it and more health-care providers are becoming familiar with and gaining knowledge about how to treat it.
Parents should look for signs of abnormal eating patterns, or limited intake, and any signs of distress or discomfort at meals. For example, the child could have an extreme unwillingness to try new foods, and the range of acceptable foods could narrow over time.
Many times, there is weight loss. But sometimes, people with ARFID actually gain weight. That might come from an unbalanced diet overall and maybe a reliance on more calorically dense foods, such as bread, pasta, or desserts. But typically, it’s that they are cutting out foods and not supplementing them with anything else.
Other signs of malnutrition could include changes in growth and development patterns. Or, because of weakened immune systems, people with ARFID might get sick more often than their peers. Females might stop menstruating.
Now, with the official recognition of the condition, there are treatment protocols, although this is still being researched.
Here at the Renfrew Center, we use a team approach when treating patients. That team includes a dietitian, occupational therapist, a primary therapist, a psychiatrist, and nursing staff. One of our primary tools is exposure therapy with the foods that are causing them distress. Our occupational therapist works very closely with the patients and meets with them several times a week for individual and group “exposure” sessions.
With exposure, we encourage the patients to look at the food, smell the food, touch the food, play with the food, utilize their five senses with the food. And then, once they feel ready, they might start with one bite. They’re asked to describe their experience — how the food looks, smells, tastes — and they rank on a number scale how distressing the experience was.
With each exposure, the challenge may increase. When patients are admitted, we give them a food list — it contains many foods from each food group — and we ask them to rank each food on a scale of zero to five, according to how fearful they may be of trying this food. In the exposure sessions, we may start with a food that would be a two or a three. But we would gradually work up the scale.
Patients are challenged to face their fear of foods many times through their treatment stay. The goal is to have repeat exposures with some of these foods and hopefully reintroduce these foods into their diet at some point.
We don’t do exposures at mealtime because we don’t want to set the precedent that they have to complete these challenging foods at meals. We want to make sure that they’re eating at meals, and then having these potentially distressing exposures at a separate time in the day.
For many, it is difficult. But with help, they can do things that they may not have thought were possible. We can help them expand upon the foods that are part of their diet.