CNN
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When Hannah was seven years old, she told her parents that she no longer wanted to be afraid of food.
Hannah stopped wanting to go to Girl Scouts, birthday parties, restaurants, family celebrations or even the dinner table. Food was everywhere, and it caused her great anxiety, said her mother, Michelle, who is not revealing her last name for Hannah’s safety.
Michelle first noticed the condition when she tried to feed her baby Hannah formula, milk and solid foods, but she refused — she would often purse her lips together or spit out the food she was given.
As Hannah grew older, she would make lists of about five foods she wanted to eat, and they became more specific — like green sour cream and onion Pringles, but only in small packets, not the big containers, Michelle said.
Hannah, now 8 years old, Avoidant/Restrictive Food Intake Disorder (ARFID)Unlike eating disorders such as anorexia nervosa and bulimia nervosa, the diagnosis has nothing to do with body shape or size, said Kate Dungey, clinical director of the Eating Disorder Center in Rockville, Maryland.
Instead, Dungey says, people with ARFID have very few foods they can comfortably eat. And unlike simply being a “picky eater,” the disorder can be debilitating and lead to long-term health problems.
The diagnosis is new, having only been added to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5, in 2013. (The DSM is the handbook medical professionals use as an authoritative guide to diagnosing mental disorders.)
It is estimated that 9% of the US population suffers from an eating disorder, but research suggests that between 0.5% and 5% of the population suffers from ARFID. National Eating Disorder Association.
“I call it the ‘silent eating disorder’ because it’s so prevalent, yet it’s 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 and director of the Institute for Translational Research in Eating Disorders at the University of Southern California.
Here’s what experts want you to know about ARFID.
Murray said people with ARFID often restrict food based on sensory and texture preferences, rather than restricting calories or nutritional value.
“This is usually when a person has very self-defeating beliefs about the ingredients in food that lead them to restrict the types and amounts of food they eat,” he adds. “There are instances when people will never eat certain textures, certain smells, certain tastes, or even certain brands of food.”
Murray said some people with ARFID have had traumatic experiences with food, such as choking, that make them more wary of food, and that people with the condition don’t necessarily have a decreased appetite, just more anxiety about food.
Murray said stubbornness and a fear of change may also contribute to ARFID symptoms.
Many children are picky eaters and will avoid vegetables or other foods, but that’s not the same as ARFID, Dansey said.
One way to tell the difference is the level of inhibitions and anxiety they experience when faced with new foods, Murray says.
“Children who are picky eaters “You may be able to eat a little or less of certain foods on your plate,” he said. “Someone with ARFID may not be able to eat anything on their plate if there are foods on their plate that are considered unacceptable.”
Dansey said it’s not just a handful of foods that people with ARFID won’t eat — people with the condition often only have a list of around five or 10 foods that they can eat, he added.
ARFID can also make people more wary of tastes, and many with the condition are able to notice small differences, like a new brand of pasta sauce, Murray added.
“That in itself can be very debilitating and disadvantageous for parents,” he said.
Although the condition often begins in childhood, Murray said, ARFID can affect people of any age, and people may experience its effects throughout their lives.
“Children can really have delayed development. “It causes rapid weight gain,” he says, “and the medical implications are very serious, as metabolic and nutritional imbalances can occur very quickly.”
Hannah experienced the condition before seeking help from an ARFID specialist. She continued to grow and gain weight normally for her age, but Michelle says she stopped growing because she wasn’t getting enough food.
Murray said in some cases the dietary restrictions could lead to weight loss and hospitalization.
“With any kind of psychological or psychiatric problem, the sign of a problem is always when it’s affecting children and their families,” Dungey said. “When the impact is significant, that’s when we start to worry.”
There may also be social implications.
“This can be very isolating for people,” Murray said. “Kids can feel very anxious about going to parties or any kind of social event where they might not know what food will be there.”
Issues around food and eating often impact many areas of a person’s life, Dangy said.
“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. “Having a good relationship with food is so fundamental to well-being.”
ARFID is not something a child will grow out of, so it’s important to treat it with as much compassion and care as possible, he added.
Murray said there is still a lot researchers need to learn about ARFID, but there are resources available.
“The first thing to know is that early intervention is better because the list of foods to avoid can grow exponentially,” he said.
There isn’t much data on whether medications are effective, but therapies such as cognitive behavioral therapy (CBT) have helped many people.
Treating ARFID “usually involves induced exposure to the food so that the person can relearn the association with that food and ultimately not avoid the food,” Murray said.
At home, there are things families can do to better support their child with ARFID, such as prioritizing making sure their child is getting enough calories before focusing on increasing variety in their diet, said Dr. Nicole Stettler, clinical executive director of eating disorder recovery services at Rogers Behavioral Health.
You can also give your child tools like timers or visual meal reminders and try “food chaining,” a strategy in which you pair new foods with foods that your child already knows they like, she said.
As family members or caregivers of people with ARFID, it’s important to remember that they’re not trying to bother you, even though it can be frustrating to feel like everything has to be just right for mealtimes to go smoothly, Murray adds.
“Most of the time it doesn’t work, and it’s really frustrating. You don’t know how to get your child to eat,” he says. But “it can be really damaging for a child with a mental illness to feel punished for it, so it’s really important for parents to be supportive and not punitive.”
Five months into treatment, Hannah frequently tries new things and pushes herself to eat three bites of food every time she takes a chance, Michelle said.
She said she has become more confident and curious, and her list of “safe foods” has grown to 11 items.
“Our goal is to get her into a good place so that as she grows she has the tools she needs,” Michelle said.
