The first randomized, controlled trial for a common childhood eating disorder has shown how therapists and parents can help those struggling with the condition, known as avoidant restrictive food intake disorder, or ARFID.
The study of 98 children, all 6 to 12 years of age, was conducted by Stanford Medicine scientists and published online recently in the Journal of the American Academy of Child & Adolescent Psychiatry.
Unlike individuals with other eating disorders, people with ARFID do not struggle with poor body image. Rather, they eat too little for other reasons, such as low interest in food or fear of eating. The condition can start at any time of life, including early in childhood. It affects 2% to 6% of children and adolescents and can interfere with growth.
"This is the first study, worldwide, to take a systematic, randomized, adequately powered approach to testing treatments for this disorder," said lead study author James Lock , MD, PhD, the Eric Rothenberg, MD, Professor; a professor of psychiatry and behavioral sciences; and a member of the care team at the Comprehensive Eating Disorders Program at Stanford Medicine Children's Health. "We now have an evidence base for how to help children with ARFID, at the age when they often present for treatment."
Julia Ceresnak joined the ARFID study in 2020, when she was 10. Julia's parents, Karen and Scott Ceresnak, took part in parent education sessions while Julia worked with study coauthor Brittany Matheson , PhD, to develop strategies that would motivate her to try new foods, which was the aspect of having ARFID that she found most challenging.
She kept lists of "always," "sometimes" and "not yet" foods, and she felt a sense of accomplishment at seeing foods move from the "not yet" to "sometimes," or "sometimes" to "always."
They also came up with a plan in which Julia kept a notebook that she filled with stickers to track the level of variety in her meals and the new foods she tried. Once she had tried 50 new foods, she received a prize, a painting kit to make mosaic-style artwork.
"That was very motivational for me, as a little kid," said Julia, who is now 15.
Testing two approaches to treatment
The study compared two treatments, both based on methods that work for other eating disorders. All children participating in the study met diagnostic criteria for ARFID and were underweight.
The researchers randomly assigned each participating family to one of the treatments, both of which included 14 one-hour therapy sessions over four months. All sessions took place online, enabling the study to include families from across the United States.
The family-based therapy treatment empowers parents to manage their child's food and nutrition. In the first phase of therapy, parents receive guidance on how to take charge of changing the child's ARFID behaviors, such as eating very few foods, eating too little, and avoiding eating because of fears of choking or vomiting. As they grow older, children take age-appropriate responsibility for these changes. Children, parents, siblings and therapists participated together in all the treatment sessions.
"The therapist guides and consults them, but parents are the experts on their child, their family's food culture and their family systems," said Matheson, a clinical associate professor of psychiatry and behavioral sciences.
The therapist also emphasizes to all family members that the children did not choose to have ARFID. To explain this idea to 6- to 12-year-old kids, the therapist might say, "It's like an alien is coming to your brain," Matheson said. For parents, the therapist stresses that the child is separate from the disorder.
"We say, 'We're going to be really firm about not accommodating the eating disorder but be really loving, kind and compassionate to our kid who is struggling with it,'" Matheson said.
The other treatment, called psychoeducational motivational therapy, is an individualized, play-based method that puts the child in charge. In this treatment, children attended nine sessions with the therapist, while parents had five sessions. Kids learned what ARFID is and why their parents may be worried about it.
"A 6-year-old doesn't always have that insight," Matheson said. "They're just like, 'This is how I am. I only like chicken, it has to be made this way, and I don't know why.'"
With the child, the therapist engages in play that helps them figure out what could motivate them to eat differently. For instance, they might plan an imaginary restaurant menu or pick a place in the world that the child wants to travel and investigate foods from that location.
Parents learn about ARFID; how to decrease family conflict about food, particularly at mealtimes; and how to support food-related changes that the children decide they are motivated to make.
The researchers tracked participants' weight and ARFID symptom severity. At the end of the study, children in the family-based therapy had gained a statistically significant amount of weight, a good sign of recovery. Those in the individual treatment had not. Children who had higher ARFID severity also did better with family-based than individual treatment.
However, both treatments significantly improved children's ARFID symptoms, and the two approaches were equally beneficial in that regard.
"We now have two treatments that work for children aged 6 to 12 with ARFID," Matheson said. "Family-based treatment seems to help kids gain weight more quickly, but both family and individual treatment can be helpful. We are so excited to have two treatments that work, when we had zero before."
Many ARFID patients can be successfully treated on an outpatient basis, but some require hospitalization. Stanford Medicine Children's Health also offers inpatient services with medically supervised refeeding, as well as nutritional, occupational and mental health therapies for more severely ill children and adolescents with ARFID.
Not just picky eating
The ARFID diagnosis was added to the Diagnostic and Statistical Manual of Mental Disorders in 2013. Unlike patients with anorexia or bulimia, people with ARFID are not trying to change their body shape.
"Some ARFID patients are young people who don't like to eat very much — they have a low appetite, or they are highly selective because they worry about feeling disgusted by foods," Lock said. "Another group of patients have had a traumatic experience like a choking incident or allergic reaction and became afraid to eat."
Although ARFID can start very early in life, there can be a delay in diagnosis. When parents of young kids ask their pediatricians about eating struggles, they often hear that picky eating is normal in toddlers and preschoolers and that the child will outgrow the problem.
But in children with ARFID, extremely selective eating doesn't resolve on its own. It can cause other problems: Patients may develop very low vitamin A levels, which can endanger vision, or vitamin C deficiency, known as scurvy. ARFID patients who stop eating because of a traumatic incident can lose dangerous amounts of weight. In the long term, children with ARFID may face poor growth, short stature and impaired fertility.
ARFID also creates challenges for kids' and families' everyday lives.
"Sometimes families are so affected by the restricted diets that they can't go on vacation, or the kid isn't eating during the school day, so they're not doing well at school, and they're really tired and cranky," Matheson said. Children struggle with social events that involve food, she said, adding, "Lots of kids come to see us for treatment because they want to go to summer camp, a sleepover or a birthday party."
ARFID can also overlap with other conditions. It's more common in children with attention deficit/hyperactivity disorder, anxiety disorders and autism than in the general child population.
Even though ARFID is challenging to address, Lock said, "In one way, this disorder is easier to treat than other eating disorders, because the kids don't really want it."
Enabling new adventures
Julia, who was randomized to the individual therapy arm, still sees Matheson for ARFID treatment at Stanford Medicine Children's Health , but her motivation to expand what she eats is now based on improving her health and having new adventures, rather than earning prizes. Matheson helps Julia figure out how to manage the emotions that come with ARFID, encouraging her to advocate for herself and put her worries about food into perspective.
With Matheson's help, Julia has planned food strategies for going away to camp and participating in school trips to Disneyland and Costa Rica.
And she's still trying new things, many of which have become favorites.
Talking about how her lists of "sometimes" and "always" foods have expanded, Karen Ceresnak said to her daughter, "Remember? You wouldn't eat eggs, avocado, so many good things."
"I was like, 'I just want her to eat eggs!'" Karen Ceresnak added.
Together, they listed a few of the previously verboten foods that Julia now enjoys: avocado, her favorite of all the additions; pomegranates; chia seeds; yogurt with strawberries, blueberries and raspberries; edamame; and even eggs.
"I like eggs a lot," Julia said.
The study was funded by the National Institute of Mental Health (grant R01MH121292).
