ARFID: The Eating Disorder You’ve Never Heard Of

CNN
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When Hannah was 7, she told her parents she didn’t want to be afraid of food anymore.

She no longer wanted to go to scouts, birthday parties, restaurants, family gatherings or even dinner. Food was everywhere and it caused her a lot of anxiety, said her mother, Michelle, who kept their last name secret for Hannah’s safety.

Michelle first noticed this when she tried to transition Hannah from formula to milk and solid foods, but Hannah refused. She would often close her lips or spit out the food she was given.

Growing up, Hannah had a list of about five foods she ate, and they were specific. Like green cream and onion Pringles, but only in small packets, not big ones, Michelle said.

Hannah, now 8, is being treated for avoidant-restrictive eating disorder, or ARFID. Unlike eating disorders like anorexia or bulimia, this diagnosis isn’t about body shape or size, said Kate Dansie, clinical director of the Eating Disorders Center in Rockville, Maryland.

In contrast, people with ARFID are very limited in the foods they feel safe and comfortable eating, Dansie said. Unlike simply being “picky,” the disorder can be debilitating and lead to long-term health problems.

The diagnosis is new and was only added to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5, in 2013. (The DSM is the manual that health care professionals use as an authoritative guide for diagnosing mental disorders.)

While approximately 9% of the American population will suffer from an eating disorder at some point, studies suggest that between 0.5% and 5% of the population suffers from ARFID, according to the National Eating Disorders Association.

“I would call it the silent eating disorder because it is so prevalent, but it is the least studied, the least talked about and the least funded at the federal research level,” said Dr. Stuart Murray, associate professor of psychiatry and behavioral sciences at the University of Southern California and director of the Eating Disorders Translational Research Laboratory.

Here’s what experts want you to know about ARFID.

Rather than restricting their caloric or nutritional intake, people with ARFID often limit their diet based on sensory or textural preferences, Murray said.

“This is where a person will typically restrict the variety and volume of food because they have incredibly debilitating beliefs about what food is,” he added. “This could be, for example, not eating foods that have a certain texture, a certain smell, a certain flavor, or even a certain brand of food.”

In some cases, people with ARFID have had a traumatic experience with food, such as choking, which leads to increased vigilance when eating, Murray said. In other cases, people with the condition appear to have a low desire to eat and high anxiety around food, he said.

A rigid or fearful personality type about change can also contribute to ARFID symptoms, Murray said.

Many children are picky eaters and try to avoid eating certain vegetables or other foods, but that’s not the same as ARFID, Dansie said.

One way to spot the difference, Murray says, is the level of impairment and anxiety that accompanies encountering a new food.

“A picky eater might be able to “People with ARFID may eat a certain food on their plate or eat a little bit of it,” he said. “A person with ARFID may not be able to eat anything on their plate if there is a food on their plate that is deemed unacceptable.”

And it’s not just a handful of foods that people with ARFID refuse to eat, Dansie said. Often, people with the condition have a list of five or 10 foods they feel comfortable eating, she added.

Increased vigilance around tasting may also be associated with ARFID, and many people with the condition may notice small differences, such as whether the brand of pasta sauce has been changed, Murray added.

“That in itself can be quite debilitating and crippling for parents,” he said.

The disease often begins in childhood, but it can affect people of all ages, Murray said. And people with the condition can suffer lifelong consequences.

“Children can really lose their growth “The disease curve moves quite rapidly,” he said. “They can become metabolically and nutritionally imbalanced very quickly, so the medical effects are quite profound.”

Hannah had this experience before she started working with an ARFID specialist. She had managed to maintain the expected rate of growth and weight gain for her age. But because she didn’t have enough food in her system, her growth stopped, Michelle said.

In some cases, dietary restriction can lead to weight loss or hospitalization, Murray said.

“Whatever the psychological or psychiatric problem, it is always indicative of its impact on the child and the family,” Dansie said. “When the impact is significant, that’s when we become concerned.”

There may also be social repercussions.

“It can create a sense of isolation for people,” Murray said. “Kids get very anxious about going to parties or any kind of social event where they feel like they don’t know what’s going to be eaten.”

Often, issues related to food and eating impact many areas of a person’s life, Dansie said.

“I discovered that if you can observe a person’s relationship with food, you can observe their relationship with everything else,” she said. “Having a good relationship with food is fundamental to well-being.”

ARFID is not something that children simply grow out of, so it is important to approach it with as much sympathy and compassion as possible, he added.

Although researchers still have much to learn about ARFID, resources are available, Murray said.

“The first thing we need to know is that early intervention is best because the list of foods to avoid can grow exponentially,” he said.

There isn’t much data on how well medications work, but therapy — including cognitive behavioral therapy, or CBT — has helped many people.

Therapy for ARFID “typically involves guided exposure to foods so that one can relearn associations with those foods and ultimately not avoid them,” Murray said.

At home, families can take steps to better support a child with ARFID, such as prioritizing ensuring the child is getting enough calories before focusing on increasing variety, said Dr. Nicole Stettler, clinical executive director of eating disorders recovery services at Rogers Behavioral Health.

You can also give your child tools like timers or visual reminders to eat, and try “food chaining,” a strategy that combines new foods with ones he already knows he likes, she said.

As family and caregivers of someone with ARFID, it’s important to remember that they’re not trying to be difficult — even though it can be frustrating to feel like the stars have to align for a meal to go well, Murray added.

“It’s really frustrating because most of the time the stars don’t align and I don’t know the formula to get him to eat,” he said. However, “it’s really damaging for any child with a mental health disorder to feel punished for it, so it’s really important not to punish and to have a supportive parenting attitude.”

Five months into her treatment, Hannah is making a point of trying new things often and taking three bites to give it a chance, Michelle said.

Her confidence grew, she became more curious and her list of “safe foods” increased by 11, she said.

“Our goal is to get her to a good place…so that as she grows up, she has the tools she needs,” Michelle said.