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When Hannah was 7 years old, she told her parents that she no longer wanted to be afraid of food.

She stopped wanting to go to Girl Scouts, birthday parties, restaurants, family celebrations, and even the dinner table. Food was everywhere, and it gave her a lot of anxiety, said her mother, Michelle, who would not give her last name for Hannah’s safety.

Michelle first saw baby Hannah when she tried to change it from milk to milk and solids – but Hannah refused. She often gags or spits out food that is given to her.

As she got older, Hannah had a list of five foods she would eat; And they were certain. Like the green sour cream and onion Pringles, but only small packages, not a big container, Michelle said.

Now 8 years old, Hannah is in therapy. Avoidant/Restrictive Eating Disorder, or ARFID. Unlike eating disorders such as anorexia or bulimia nervosa, this diagnosis is not related to body shape or size, says Kate Dance, MD, clinical director of the Eating Disorders Center in Rockville, Maryland.

Instead, people with ARFID are very limited in foods that are safe and convenient for them to eat, Danse said. Not only is this a “selective” disorder, it can also be debilitating and cause long-term health problems.

The diagnosis is new and was added to the fifth edition of the DSM-5 Diagnostic and Statistical Manual in 2013.

Approximately 9% of the U.S. population experiences an eating disorder at some point, studies indicate that 0.5% to 5% of the population has ARFID; National Eating Disorders Association.

“I call this the silent eating disorder because it’s so prevalent, but it’s so little studied, and so little talked about, and so little funded at the federal research level,” said Dr. Stuart Murray, associate professor of psychiatry and psychiatry. Director of the Eating Disorders Laboratory for Behavioral Sciences and Translational Research at the University of Southern California.

Here’s what experts need to know about ARFID.

Courtesy Michelle

Michelle and Hannah are working hard to treat Hannah’s ARFID diagnosis.

Rather than restricting calories or nutrient content, people with ARFID tend to restrict their food based on emotional or textual preferences, Murray said.

“This is where a person has incredibly poor beliefs about the composition of their diet, which often limits the variety and quantity of their diet,” he added. “Examples could be not eating foods that are a certain texture, a certain smell, a certain taste, a certain brand.”

In some cases, people with ARFID have had a traumatic experience with food, such as choking, which makes them more cautious about eating, Murray said. Other times, people with this disorder seem to have low drive to eat and high anxiety around food, he said.

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

Many kids are picky and try to get out of eating certain vegetables or other foods, but that’s not the same as ARFID, Dance said.

One way to tell the difference is the level of trauma and anxiety that comes with facing a new food, Murray said.

“A picky eater might. Eat around some food on their plate, or they might drink a little bit of it,” he said. A person with ARFID may not be able to eat anything that is considered unacceptable if it is on the plate.

And it’s not just a handful of foods that people with ARFID don’t eat, Danse said. People with this disorder often have a list of five or 10 foods they feel comfortable eating, she added.

A greater sensitivity to taste can also come with ARFID, and many affected people can tell slight differences, such as if the brand of pasta sauce is changed, Murray added.

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

The disease usually begins in childhood, but ARFID can affect people of all ages, Murray said. And people can experience consequences throughout their lives.

“Children can actually be stunted Curve quickly,” he said. They can quickly become metabolically, nutritionally imbalanced, so the effect of treatment is very profound.

Hannah experienced this before she started working with an ARFID specialist. She was progressing with the expected growth and weight gain for her age. But her growth stalled because she didn’t have enough food in her system, Michelle said.

In some cases, restrictions around eating can lead to weight loss or hospitalization, Murray said.

“With any psychological or psychiatric problem,[the indicator of the problem]is always when it affects the child and the family,” says Danse. “When the impact is significant, that’s when we worry.”

There may also be social influences.

“This can be very isolating. b People,” Murray said. “Kids are very nervous about going to parties or any kind of social event where they don’t know what the food is going to be.”

Oftentimes, issues surrounding food and nutrition affect many areas of a person’s life, Danse says.

“What I’ve found is that if you can look at a person’s relationship with food, you can look at their relationship with everything,” she said. A healthy relationship with food is fundamental to well-being.

ARFID children don’t just grow up, so it’s important to approach them with as much compassion and empathy as possible, he added.

Although more researchers need to learn about ARFID, there are resources available, Murray said.

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

There is not much information if medicine is helpful, but treatment – incl Cognitive behavioral therapy or CBT – He helped many people.

ARFID therapy “usually involves exposure to foods so that a person learns the association with those foods and eventually avoids them,” Murray said.

At home, there are things families can do to better support a child with ARD, such as making sure the child gets enough calories before focusing on increasing variety, says Dr. Nicole Stetler, clinical director of eating disorder recovery services at Rogers Behavioral Health. .

You can also give your child devices such as timers or visual reminders to eat, and try “food chaining,” which is a strategy of pairing new foods with favorites, she said.

As a family and caregiver of someone with ARFID, it’s important to remember that you’re not trying to be difficult—although it can be frustrating to feel like the stars have to align for mealtimes to go smoothly, Murray adds.

“It’s really frustrating, because a lot of times the stars don’t align and I don’t know the formula to get him or her to eat,” he said. However, “it is very harmful for children with any mental illness to be punished for it, so non-punishment and a supportive attitude between parents is very important.”

Five months into her treatment, Hannah often pushed herself to try new things and take three bites to give herself a full chance, Michelle said.

Her confidence has grown, she’s more curious, and her list of “safe foods” has increased by 11, she said.

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