What Parents Need to Know about ARFID
Published: March 1, 2021
By: Malia Jacobson
Parents raising a picky eater are in good company. According to research, about 25 percent of children and teens experience problems with feeding or eating, making pickiness one of the more prevalent parental complaints.
Happily, pickiness is a passing childhood phase for most kids. It can even be a healthy sign that children are eating intuitively, according to their own internal cues of hunger or fullness, says Devan Weir, a registered dietitian on staff at THIRA Health, a mental health treatment center for women and girls in Bellevue, Washington.
In some children, though, picky eating is an early sign of Avoidant Restrictive Food Intake Disorder (ARFID), a little-known eating disorder that can cause severe nutritional deficiencies, developmental delays and family chaos. The term is unfamiliar to most parents and healthcare providers, even though ARFID affects between 5 and 14 percent of children and nearly a quarter of those in treatment for eating disorders, according to the Journal of Eating Disorders.
“Most people with eating disorders are not meeting their energy needs (nutrition intake, energy expenditure) due to their behaviors, says Stephenie B. Wallace, MD, MSPH FAA, Associate Professor, UAB Pediatrics Division of Adolescent Medicine. “For patients with Anorexia nervosa and bulimia, their behaviors regarding their energy needs are influenced by their poor body image. Patients with ARFID are not driven by their body image in the changes that occurred in their nutritional habits.”
What is ARFID?
Sometimes characterized as extreme pickiness, ARFID is an eating disorder involving an aversion to food and eating. “This isn’t just picky eating,” says Weir. “ARFID is really extreme to the point where it’s causing malnutrition and medical consequences.”
“Patients with ARFID have disrupted food intake based on other concerns, such as texture/color, fear of vomiting, or choking but also there are physical consequences of their reduce intake,” Wallace says. “They have poor growth parameters such as significant weight loss or have nutritional deficiencies. Overcoming this nutritional intake deficit can be a challenge and required frequent evaluations with dietitians and therapists.
“The difference between ARFID and picky eating is that the health of children with ARFID is gravely affected by the changes in their nutrition intake” Wallace explains. “Picky eaters continue to grow and develop as expected for their age. A key part of the diagnosis for ARFID is that a nutritional deficiency, significant weight loss, or reduced height growth are signs that their health is impacted by their behaviors. Children with ARFID can be affected socially as well as eating in social situations can affect the relationship with family and friends.”
Formerly called “selective eating disorder,” ARFID is a relatively new diagnosis defined in the 2013 edition of the DSM, the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association.
Although experts believe that ARFID is on the rise, plenty of healthcare providers haven’t heard of the condition, notes Weir. “Up to 63 percent of pediatricians and sub-specialists are unfamiliar with it, so parents often need to search around to find support and help.” Blood tests don’t detect ARFID, making the disorder even harder to identify and treat, according to the National Eating Disorder Association (NEDA).
The condition occurs in adults but is more common in children, particularly in those on the autism spectrum. Children with ARFID may have an anxiety disorder or sensory processing disorder. Researchers report that youth with ARFID are more likely to be male and have other psychiatric or mental health conditions.
The most visible symptoms of ARFID are similar to other eating disorders and include dramatic weight loss, lethargy, cold intolerance, and digestive problems like constipation, cramps, or “upset stomach.” But unlike anorexia nervosa, ARFID isn’t characterized by a distorted body image or fear of weight gain, says Mehri Moore, MD, THIRA Health’s medical director and founder.
Because children with AFRID often report gastrointestinal discomfort after eating, they may begin to fear foods that might bring on symptoms and be afraid of choking or vomiting. They may have little motivation to eat and claim to be full or suffering from a stomachache when mealtimes roll around. As the disorder progresses, children may whittle down their list of acceptable foods to a single type or texture, protesting if anything else touches their plate.
Without treatment, ARFID can persist into adulthood. One study found that more than 17 percent of adult women seeking treatment for gastrointestinal problems met at least some of the diagnostic criteria. ARFID can cause neurological and growth problems in children as the body slows its metabolic process to conserve energy. In extreme cases, nutritional deficiencies can cause fatal electrolyte imbalances or cardiac arrest.
Stalled growth and “falling off the weight chart” can be red flags for ARFID, especially when accompanied by low energy, difficulty concentrating, fears about food, and disinterest in eating. But caregivers won’t always notice dramatic weight loss when their child has ARFID or another eating disorder, notes Moore.
In fact, changes in eating-related behavior without any change in weight should pique parental interest, Moore says. “When children and teens show either an increase or decrease in their interest in food, or do things like hide food in their bedroom, and parents don’t notice any change in weight, that’s a time to become curious.”
If picky eating doesn’t resolve by grade school, becomes more extreme as children get older, and seems to be affecting a child’s physical or mental health, an evaluation may be in order, says Weir. “Parents can start with their pediatrician and find additional resources and support from the Ellyn Satter Institute, the National Eating Disorder Association, and THIRA Health, where we specialize in eating disorder recovery.”
“If parents are worried, their child should be evaluated by their doctor, Wallace says. “During that assessment, the doctor can take a nutrition history to determine if there are concerns for nutritional deficiencies along with their vital signs. Reviewing the impact of current nutritional intake on their current growth percentiles is key. With prior records, the physicians can determine if their height growth have changed from prior assessments. Children with AFRID can also have other conditions such as autism, OCD, and anxiety that are contributing to the behaviors causing their reduced intake.”
“Once it has been determined there is an impact on their child’s health, an evaluation from a dietitian and therapist is necessary for recovery, Wallace adds. “The dietician can provide an assessment on what foods need to be added to address growth and development concerns. For patients to increase their oral intake, frequent behavioral therapy sessions will be required. If oral intake is not sufficient and medical parameters are worsening, tube feeding can be used to provide nutrition. There are no specific medications that treat ARFID but medications can be used to better manage their co-occurring conditions.”
Parents need support, too. Eating disorders like ARFID are not only developmentally dangerous for children, but extremely challenging for caregivers, says Moore. “Often, we’ll see that parents are doing a balancing act, making different meals for different family members while trying to manage extreme food preferences for one child. Because of the strain that an eating disorder places on everyone in the household, it’s important to seek out whole family healing.”
Malia Jacobson is a nationally published health and family journalist. Carol Muse Evans, Birmingham Parent publisher, also contributed to this story.