Ask Me Anything About ARFID

Avoidant/restrictive food intake disorder (ARFID), often referred to as the “silent eating disorder,” is a lesser-known but significant condition officially recognized in the 2013 edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Since its inclusion, awareness and diagnosis have steadily increased, with estimates suggesting that up to 20% of patients presenting at primary care or specialty clinics with feeding concerns meet the criteria for ARFID.

In this Q&A, Megen Vo, MD, an adolescent medicine specialist at Stanford Medicine Children’s Health who treats eating disorders in children, teens, and young adults, delves into the nuances of ARFID. She explains the key differences between ARFID and typical picky eating behaviors, highlights the landscape for treatment, and shares insights on supporting children and families living with this complex disorder.

This conversation is part of our ongoing “Ask Me Anything” series on Instagram and has been edited for clarity and length.

Is ARFID a new diagnosis?

While it might be new in the specific terminology under the new Diagnostic and Statistical Manual, we’ve known that ARFID has existed for as long as there have been people. I like to think of ARFID as extreme picky eating, but it can present in many different ways. We as pediatricians have known that folks have had issues with different aspects of food, but now we have a shared language to talk about them.

Is ARFID just picky eating?

I like to think of it as extremes. We all have preferences, and it’s OK to have preferences. ARFID is when it rises above the level of normal pickiness, like “I don’t like mayo” or “I don’t like ketchup.” It’s really getting in the way of somebody’s ability to function, live their life, to enjoy the social aspects that are related to food, to travel—that’s where it’s really different from normal pickiness.

How is ARFID different from eating disorders like anorexia or bulimia?

People who are affected by anorexia nervosa or bulimia nervosa have what we call a disturbance in body image. They have differences in the way they perceive their body versus reality, and it plays a big role in their self-evaluation. A lot of the behaviors are around wanting to change the way their body looks and the way they experience their body. People affected by ARFID, however, really don’t have that. It really is something about the food or the experience of eating that is the biggest driver of the problem.

What does ARFID have in common with other eating disorders?

The big overlapping thing is that people with ARFID aren’t meeting their nutritional needs. So, they’re not growing, not gaining weight, or they’re losing weight.

Are there different types of ARFID?

Right now under the Diagnostic and Statistical Manual, it’s all just one big lump of ARFID. For those of us that do this work, we recognize that there are probably three types that are different:

1. Sensory avoidant: Really interfering with someone’s ability to get through their day, to do social things, to travel. People who avoid food based on its sensory characteristics, such as the texture, the smell, its color, for example. Those people are sensory avoidant.

2. Low interest: These are people who are not able to act on their hunger cues the same way an average person would. It’s not to say that they don’t feel hungry, but there’s something about it that’s a little bit less motivating than for someone who’s not affected. These are the kinds of folks without structure or without external motivation—they can go the whole day without eating and not really notice. This can be a problem in a child who’s supposed to be growing.

3. Fear of aversive consequences: There’s something associated with eating that is scary to the person for some reason, whether they’re afraid of choking, or they’re afraid of having pain with swallowing, or pain with chewing. Sometimes they’re afraid of having abdominal pain after eating. Oftentimes these people have experienced this before, and it really is scary and it gets in the way of their ability to eat. Usually in those cases, they’ve been growing just fine, they’ve been eating just fine, and then something happens, and they’re not able to meet their needs, and they end up losing a lot of weight.

At what age is ARFID most common?

We’re still learning about that, because we have this new shared terminology to be able to describe those affected by ARFID. Generally, we tend to see folks affected with ARFID at younger ages than those affected by anorexia nervosa or bulimia nervosa, which tends to be in early or mid-adolescence. In contrast, people with ARFID often come to care or are recognized around school age.

Does ARFID run in families?

I think we’re still learning about this. We definitely see that eating disorders in general can have a genetic component to them. If we hear about someone in the family having an eating disorder, other people in the family may be more likely to have it. But we’re not sure yet.

What does the landscape for treatment look like for ARFID? There’s a lot of interest in research, and it’s ongoing. Our best evidence is for a multidisciplinary approach with a medical professional—a therapist who has experience with eating disorders, ideally ARFID. There’s great evidence for family-based treatment for ARFID. There’s evidence for other approaches as well, such as individual cognitive behavioral therapy. We know that with young people with ARFID they’re not eating in a vacuum, so involving the family to help support them does seem to help. Involving someone who can help with the exposure work, like a feeding therapist or occupational therapist, is ideal.

Founded in 1978, the Comprehensive Eating Disorders Program at Stanford, part of the Lucile Packard Children’s Hospital Stanford Center for Adolescent Health, has over 40 years’ experience providing interdisciplinary inpatient and outpatient medical and psychological care for adolescents with eating disorders.