Posted: June 20, 2025 on MyEdmondsNews

by Kellie Schmitt 

This is the third in our 2025 “Health Matters” series focused on health topics in South Snohomish County and sponsored by the Verdant Health Commission. Read past articles in this series here.

When Lisa Bradley’s toddler started declining more and more of his favorite foods, her pediatrician dismissed it as a picky eating phase. But as she watched him vehemently refuse more and more fruits, vegetables and meats, she started to wonder if something more was going on.

“I knew it was typical at this age to pull back on foods but, even then, I knew this was different than normal,” said Bradley, a local mom. “He would cry when we put food in front of him.”

She baked fruit-packed muffins, breaded meats, and hoped the phase would pass. Instead, her son would cry for an hour before he’d reluctantly come to the table. He didn’t seem to experience hunger cues. Even so, the high-calorie bread and dairy he consumed kept him solidly on his growth curve, and medical providers assured her all was fine.

By fifth grade, though, the restrictive eating started to affect his social and school life. Kids would tease him for only eating bread. He would skip entire meals if he slept over a friend’s house or during a school overnight camp. He started to experience lower energy, which impacted school performance and after-school activities.

“I spent so many years accommodating, just sending bread and yogurt in his lunch,” Bradley said. “Now, it’s affecting so many areas of his life.”

Ultimately, a switch to a new medical provider gave Bradley clarity – and validation. Her child wasn’t simply a picky eater; he had Avoidant Restrictive Food Intake Disorder, or ARFID. The relatively new diagnosis – it was included in the main guide for mental health providers in 2013 — connected all the dots. Bradley and her son joined a support group at Seattle Children’s Hospital, and started slowly adding more foods to his diet.

Bradley’s journey isn’t uncommon. As more people become aware of the disorder, parents of children with ARFID in the Puget Sound and beyond say they finally feel seen. Along with finding a diagnosis that matches their lived experience, people with ARFID can now seek treatment to help them slowly expand their restrictive diets.

“All of our patients have had that experience where they feel clinicians had no idea about the diagnosis—they’re a picky eater and they’ll grow out of it – when parents knew otherwise,” said psychologist Ana Ramirez, an assistant clinical professor and director of the pediatric program at the UC San Diego Eating Disorders Center for Treatment and Research.

What is the difference between picky eating and ARFID?

A key difference between picky eating and ARFID involves the impact on one’s life, Ramirez explained. For kids with ARFID, eating interferes with their functioning, whether it’s consuming enough calories to stay on their growth trajectory or negatively impacting social interactions. This isn’t a kid who picks pizza over fruit at a birthday party; these kids avoid the party altogether because eating feels so awful. Parents often have reached exhaustion following their efforts to accommodate.

“These are parents who bring suitcases with preferred food on vacation,” Ramirez said.

Before ARFID became an official classification, young patients who fit the criteria had been lumped in with infants who had feeding issues, or in a catch-all category for people with eating struggles who didn’t fit the criteria for more commonly-known disorders like anorexia. ARFID is not driven by body image concerns.

Instead, something else prevents an individual from approaching or consuming food. Some children were normal eaters until a food-related trauma, such as choking, vomiting or experiencing a severe allergic reaction. Afterward, they might only consume liquids, or triple check food packaging for their allergen. These new behaviors lead to food avoidance and ultimately a significant weight loss.

“Most of us have had a really bad flu where we don’t want to eat anything,” Ramirez said. “But with these kids, after a traumatic event, they avoid food altogether. There’s a lot of panic-like symptoms around food.”

Other kids never experienced a single incident, but have an overall sensitivity to food texture or smell. As they approach an unfamiliar food, their face might scrunch up in disgust, or they’ll gag in response to the smell. There are also children who simply lack interest in food. They don’t seem to experience the same hunger cues and prefer small portions or skipping meals altogether. Others might experience gastrointestinal issues. Eating feels like a chore, devoid of any joy or pleasure. As a result, they’re typically low on the growth curve, and parents struggle to get them to eat enough.

“These kids will take three bites and say ‘I’m so full,’” Ramirez said. “This is the most difficult to treat because there’s a lack of reward and enjoyment from eating.”

What causes ARFID?

There is some overlap between children with ARFID and those with other disorders such as autism spectrum disorder and attention deficit hyperactivity disorder, providers say. But not everyone with ARFID has another diagnosis.

Researchers are still trying to understand the biological workings of ARFID, but emerging evidence indicates a different brain response to food among people with ARFID.  For example, a study published in JAMA Network Open this year found that the brains of people with ARFID reacted differently than those without ARFID when they viewed pictures of food. Other research is exploring genetic components such as an elevated risk if a family member has any eating disorder. With such as new diagnosis, though, researchers are just starting to scratch the surface, Ramirez said.

What’s clear, though, is that the response to people with ARFID isn’t as simple as “they’ll eat when they’re hungry.” Kids with ARFID would rather starve since there is something neurobiological preventing them from eating. That’s why the current parenting approaches on developing healthy eating habits simply don’t work with these kids.

“So many of our parents and family members feel frustrated,” Ramirez said. “There’s a lot of self-blame. How come they’re not eating? Are they being stubborn?”

Taking a different approach to eating

Understanding that people with ARFID experience eating differently helps educate treatment. The specific strategy depends on the individual and their reasons for not eating. If they don’t experience typical hunger cues, they might need an external reward to eat, such as a sticker chart. People with sensory concerns might ease into new foods over time with a sniff, a lick and, eventually, a nibble.

Cognitive Behavior Therapy is a key component of treatment for older kids and adults. For younger kids with ARFID, a creative approach invites them to be Feeling and Body Investigators, or FBI. They explore what’s happening with their body when they eat, and learn the language to explain their sensations using characters like Gassy Gus, Betty the Butterfly, or Harold the Hunger Pain.

While the recovery trajectory can take months or even years, there’s hope — especially when kids start early, providers say. While these kids will likely never become foodies, the goal is to introduce enough variety that they grow and can interact socially when food is a component.

Understanding why someone avoids foods and creatively addressing those concerns has been helpful to registered dietician Stefanie Ginsburg, an ARFID specialist who can work with patients in Washington state and nationwide via telehealth. Sometimes people endlessly consume the same familiar food to the point of burning out and never eating it again. Reintroducing that food very slowly can help diversify someone’s food list. Sometimes, it’s helpful to eat in a different environment or while listening to a favorite playlist. Ginsburg and her colleagues encourage people with ARFID to embrace their inner detective as they figure out what works best for them.

“We involve the individual 100% in the steps,” she said.

A slow progression that gradually introduces new flavors and textures can be helpful. For example, someone might start with a fruit-flavored popsicle then move on to fruit juice, then fruit leather, followed by dehydrated fruit, and, ultimately, a small, fresh piece of fruit.

Seeking change, bite by bite

Local mom Shelley Herzog has witnessed the benefits of identifying and treating ARFID, which affects her high school daughter Julia. It’s been a long journey that began when her daughter was a small child and would decline dinner altogether if she didn’t like the meal. At the time, Herzog would simply make a bigger breakfast the next day.

The pickiness persisted, though, and the family would bring their own food to restaurants or birthday parties. For years, Herzog would cook separate meals for dinner. The family sought occupational therapy to prepare for special circumstances like a third-grade overnight camp.

“I think she ate a lot of bread and cereal to keep herself alive,” Herzog said.

As her daughter got older, the picky eating got more extreme as  Julia backed off safe staples like cheese. Turkey bacon and chicken nuggets became her only protein sources. During a homestay in Japan, she subsisted on rice alone. Even as she ate enough to sustain her weight, social interactions surrounding food became increasingly burdensome. In high school, she would hide her eating so that friends didn’t notice she ate the same few items every day. She’d say she wasn’t hungry at social gatherings.

“She came to me in tears one night and said: How am I ever going to date?” Herzog recalled. “How am I going to have a social life in college when so much of life is around food?”

Herzog hunted for answers online and came across ARFID. She messaged her daughter: “Does this resonate with you at all?” Once they had a term, a new world of local treatment options opened up for the family. They found a Seattle therapist who specialized in ARFID and began treatment.

The journey has been long with nine months of cognitive behavior therapy followed by months of slow food exposures. They’ve tried to reincorporate foods that have gone by the wayside, then link those foods to new ones. For example, after adding humus, the next step was to sample roasted garbanzo beans. They’re now working on chicken tenders, which could morph into chicken breasts or, ultimately, deli meat sandwiches.

The process is complicated as meals require a formula of sorts. Herzog has learned about creating the right balance between wet foods and dry foods, and using the correct ratios of comfort foods, newly-incorporated foods, and a new exposure.

“I can’t just hand her a plate of food and she’ll eat it,” she said. “We have to think about it.”

But after one-and-a-half years of work, the list of foods has doubled, and is lengthy enough that her daughter feels comfortable heading to college next year. Despite the progress, Herzog wishes she had known about the diagnosis sooner and started work on the issue earlier. While the family had worked with occupational and other therapists around eating issues, having an ARFID-specific diagnosis has made a world of difference.

“By the time we knew it was a problem, she had to decide if it was worth her effort to change it,” she said. “The sooner you deal with it, the easier it is.”

Left untreated, ARFID can persist into adulthood

That’s a feeling that resonates with Mason Schwartz. Now in his 30s, he finally has a name for something that’s plagued him since he was a child. As he grew into adulthood, he ate simply to stay alive – and to avoid the migraines that came from not eating.

“Food doesn’t interest me at all,” he said. “Eating is a chore. It’s something that doesn’t come naturally for me.”

Instead of thinking about what appeals to him, he considers what meal would create the least amount of hassle. Over the years, eating anything other than his safe foods – which were mostly beige in color –stirred a sort of instant panic, he said. Along with missing hunger cues, he also struggled with texture and temperature.

“I was a slow eater,” he explained. “If I was eating a hamburger or chicken, by the time I was halfway through, it was room temperature or cold. Then, it was no longer enjoyable.”

But not eating enough has taken a toll, in terms of lower energy and increased fatigue. When his therapist sent him information about ARFID several years ago, it was a game changer.

“The more and more I read, the more I felt seen for the first time,” he said. “I was almost brought to tears: From A to Z, this all lines up, this makes perfect sense.”

Now, working with a nutritionist and therapist has helped Schwartz retrain his brain: He can try new things without as much anxiety. He’s steadily increased his weight and feels more comfortable in social situations involving food. For example, he would sometimes meet friends after dinner instead of joining them. He was also concerned about dating and the social stigma of being “a picky eater” as an adult. After all, it’s much more socially acceptable to be an eight-year-old ordering spaghetti and butter noodles at a restaurant, he pointed out.

After several years of work, he’s now more comfortable trying new foods. He recently sampled a protein bar that he didn’t hate, which feels like a huge win.

Despite the strides, Schwartz still feels misunderstood by family members who don’t understand why eating requires so much effort. It’s hard to deal with negative attention as you’re struggling with something that’s already difficult, he said. He wishes more people would understand that the physical revulsion he experiences when eating certain things is beyond his control.

“Once I read about ARFID, so much of my life started to light up,” he said. “You know you’re not alone. There is someone who has beaten this.”

Local treatment options focus on caregivers, too

Overall, there is still a lack of awareness about ARFID, said Seattle Children’s psychologist Jasmine Zhou. Even as she notices a growing understanding among local providers, many parents still experience invalidation and a lack of understanding. Too often, pediatricians will look at a child’s growth chart as the sole marker of whether a child’s eating is worrisome.

“I usually like to empower parents to trust their caregiver instincts,” she said.

Parents often have a gut feeling that their child is experiencing more than picky eating – and that their accommodations might be too extreme. It’s one thing to serve preferred foods while offering new ones, and another to avoid social gatherings altogether because of food-related concerns.

“We all have different preferences and different parenting style, but [there’s] one important thing to look at: Is what I’m doing sustainable?” Zhou said.

In addition to helping children who are patients, Seattle Children’s focuses on the caregivers as they go through the ARFID journey. Parents might experience grief and loss when their children reject meals – and they are unable to show love and caring through cooking. They might also experience judgment from others, shame or guilt.

“I like to recognize their love and care for their kids: that’s their hope for recovery,” she said.

Adding more ARFID resources in the local community will help raise awareness and reduce barriers to early diagnosis, said Mountlake Terrace resident Joy Laramy. A personal struggle with misdiagnosis in her own family led Laramy to pursue an advanced nursing degree in psychiatric mental health. She hopes to open her own local practice later this year specializing in conditions like ARFID. Key to her practice will be supporting families of children experiencing eating disorders.

“We often don’t support the families around the sufferer as much as people deserve and need,” she said.

Finding support has been beneficial for Bradley, the local mom whose son has an ARFID diagnosis. Participating in a Seattle Children’s group gave her a sense of validation: Typical parenting strategies surrounding eating simply don’t work for children with ARFID.

Instead, Bradley now offers rewards such as screen time if her son tries a small piece of a new food.  Another success has come from the chaining strategy, which links safe foods to similar ones, like moving from ground beef to a burger. Slowly, he’s expanding his diet. He’s now added bacon to his breakfast, and on a recent night, he tried a sliver of baby potato.

“As a parent, I’m motivated to accommodate,” she said. “But now, I’m putting aside my own anxiety and focusing on the long-term solution of having well-rounded nutrition. This is survival.”

Kellie Schmitt is an award-winning health reporter based in Edmonds. She covers health policy, public health and children’s health for a variety of publications including the Johns Hopkins University Public Health Magazine, ParentMap, and USC’s Center for Health Journalism. She has a master’s in science writing from Johns Hopkins University.

This series is supported by funding from the Verdant Health Commission. The My Neighborhood News Network maintains full editorial control over content produced as part of this series.