Stephanie Elliot’s daughter, McKaelen, was always finicky about food. As a toddler, she subsisted on a diet of dinosaur-shaped chicken nuggets, French fries, peanut butter sandwiches, peeled apples, cake and pizza (with the cheese and sauce scraped off). McKaelen’s two brothers, one older and one younger, would eat anything, so Elliot just figured her daughter would eventually accept new foods into the mix—like most toddlers and preschoolers eventually do—after the worst of the fussy phase was over.
Instead of outgrowing it as her palate matured, however, McKaelen’s aversion to food got worse, with a strict list of only 10 acceptable items in her rotation.
“It was starting to become a real problem—she was physically repulsed by new foods,” says Elliot. Her daughter would gag at the sight of meat and vegetables, and wouldn’t eat what the rest of the family was having.
“If we ever wanted to go out to dinner, we could only pick a place that had French fries or pizza,” adds Elliot.
She remembers trying to sneak bananas into her daughter’s pancakes, but McKaelen could tell they weren’t quite “right” and refused to eat them. Another time McKaelen was curious about eggs, but she took one bite and spat it out.
“I sometimes worried that she didn’t have enough protein or vitamins, so I would try to push protein whenever I could—by offering her peanut butter or even milk,” says Elliot. “But I was pretty good about not forcing her to eat things, because I knew how stressful it was for her.”
Elliot sought help for her daughter for years, visiting their family doctor, psychologists and nutritionists repeatedly.
“They would always say, ‘She’s just a picky eater,’” says Elliot. But she suspected it was more than that. “I worried about the physical aspects of her food avoidance to a small degree, but not as much as I worried about the mental, social and emotional ways it affected her.”
By grade six, McKaelen was beginning to isolate herself from friends and avoid situations like sleepovers, where she might be expected to eat foods that weren’t on her safe list.
When McKaelen was 15, they finally took her to Healthy Futures, an eating disorders clinic in their hometown of Scottsdale, Arizona. McKaelen, it turned out, had been struggling her whole life with an eating disorder called ARFID.
ARFID stands for avoidant/restrictive food intake disorder. It was first classified as an eating disorder in the American Psychiatric Association Diagnostic and Statistical Manual (DSM-5) in 2013. Essentially, it’s picky eating to the point where a child will fail to meet growth milestones; start losing weight; develop a nutritional deficiency such as anemia; require supplements or enteral feeding (tube feeding) to maintain health; or whose food avoidance interferes with other aspects of everyday life, says Mark Norris, an adolescent health physician and a member of the eating disorders team at the Children’s Hospital of Eastern Ontario in Ottawa. (For an ARFID diagnosis, a child would need to exhibit at least one of these symptoms, not necessarily all of them.)
Unlike the eating disorder anorexia nervosa, ARFID has nothing to do with body image or fear of gaining weight. ARFID kids avoid food due to sensory issues or an “averse experience,” such as choking.
No two cases of ARFID are exactly the same, but there are enough similarities when it comes to the typical ARFID diet that should act as red flags for parents or caregivers, says Gillian Harris, the U.K.-based co-author of Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions.
“With the ARFID child, the real key point is what we call the ‘beige brown carbohydrate diet.’ Everything has that dry, easy texture,” she says.
Kids with ARFID prefer white or beige foods that are soft or crumbly and easy to chew—bread, rice, plain pasta, cake, cookies, cereal or processed meats such as chicken nuggets or fish sticks. This list also describes what parents of kids with autism spectrum disorder (ASD) call the “autism diet.” Coincidentally, it’s also a pretty comprehensive tally of what many toddlers will willingly eat, which can be quite alarming for new parents.
Many children go through a picky-eating stage at age two or three when they gain language and begin to categorize foods into “likes” and “dislikes,” or “safe” and “not safe,” says Harris, who is also a consultant clinical psychologist at the Birmingham Food Refusal Service in the U.K. For example, a toddler might eyeball a cookie and think, “Yum!” But she will look at an asparagus spear and think, “That’s not food.” Most kids get past this when asparagus keeps making an appearance at dinnertime, or when they’re introduced to new foods at daycare or preschool and see peers gobbling up their veggies.
Kids with ARFID, however, don’t outgrow the picky eating, and over time it may begin to impact their growth or health. They may fail to meet height and weight milestones, or begin to lose weight. They may also develop nutritional deficiencies, such as anemia or a lack of vitamin A, B, C or D. However, since several foods that typically appeal to ARFID kids (and picky eaters) are fortified—such as bread, cereal and milk—even children with limited diets grow on track and are surprisingly healthy.
ARFID almost always negatively interferes with other aspects of life, like mealtime, friendships (avoiding playdates for fear of having to eat something new) or the ability to travel because of the rigid diet. Parents will also want to watch for signs of co-occurring conditions, such as anxiety and autism. (More on that later.)
It seems to go against human nature to dislike eating, or to limit your range of foods to only a few boring carbs. Parents of good eaters, and even doctors, will say reassuringly to the mom or dad of an extremely picky eater, “Don’t worry, kids will eat when they’re hungry.” But that’s not necessarily true for a child with ARFID.
They actually might not feel hunger in the same way, or they might have other motivations for skipping mealtime. In fact, experts have pinpointed three primary reasons for food avoidance in children with ARFID, says Norris.
One reason a child might start refusing or restricting food is because something bad happened that involved food (the “averse experience”). Perhaps she choked on a hot dog, or saw her sibling vomit all night long and has developed a revulsion to food out of fear she will choke again or vomit like her brother did.
Another reason a child might avoid eating or restrict what food he eats has to do with sensory hypersensitivity.
“These are your children [who] have extremely picky eating behaviours—they’ll often be quite rigid and set in terms of foods they will accept or won’t accept, and those choices may be based on factors such as texture, colour, taste,” says Norris.
For example, a child might eat chicken nuggets but refuse harder-to-chew chicken breast because of the texture, or he might prefer a certain brand of fish sticks or potato chips and renounce any alternatives based on taste, or solely on the packaging. ARFID kids who also have autism typically fall into this category.
The final reason a child won’t eat has to do with appetite signalling or food indifference. These are kids who say they just aren’t hungry, ever—they don't recognize that they’re hungry or feel their stomachs grumbling, or they've gotten used to smaller meals. They might pick at their plate or get away with just grazing during mealtimes, but they start falling off the growth charts when puberty hits. This is when their food intake will be a lot lower than their energy requirement, says Norris.
If you’re worried about your child’s eating, raise those concerns with a doctor. Because picky eating has been normalized as a rite of childhood, sometimes parents’ concerns might be brushed off, especially if the child looks healthy and is gaining weight, says Harris. But be persistent. Norris says there’s been a big push around ARFID awareness in Canada, and your family physician should know what resources are available in the community.
It took Elliot nearly 15 years to get a diagnosis for her daughter, in part because ARFID didn’t yet exist as an eating disorder when McKaelen was little, and also because she was still growing normally. But Elliot persevered.
“When anxiety and depression are present, and kids are avoiding situations where there’s food—then it’s something to worry about,” says Elliot, who later wrote a young-adult novel called Sad Perfect, based on her family’s experience with disordered eating. “It got so bad we had to figure something out.”
Because ARFID has only recently been classified as an eating disorder, experts aren’t sure yet how many kids in Canada have it. A community-based surveillance study on ARFID was recently completed; doctors hope it will soon give a better sense of ARFID rates in Canada, as well as highlight the similarities and differences across a range of cases. A community-based study in Switzerland found that 3.2 per cent of Swiss children aged eight to 13 met criteria for having ARFID. In the U.K., says Harris, it's about one in 600 kids. She estimates that there will be at least one child with ARFID in every primary school.
Experts stress that picky eating does not equal ARFID, which is actually quite rare among neurotypical children, Harris says. It is much more common in children on the autism spectrum, however. In her experience, 50 to 60 percent of kids with ASD also have ARFID. Children who had reflux as babies are also at greater risk of developing ARFID, she says, because the vomiting and regurgitation causes “hyper-responsiveness in the throat and mouth.” This means that children will find any stimuli in the mouth—including food—unpleasant.
Finally, there’s a connection between ARFID and mental health disorders, such as anxiety, which is commonly noticed in kids diagnosed with the eating disorder, says Norris.
Because ARFID is a relatively new diagnosis and it presents differently from one child to the next, there isn’t one standard way to treat the eating disorder. Doctors look at why the child is avoiding food, and consider their stage of emotional development.
Harris says treatment often focuses on reducing anxiety around food, and on desensitizing, if it’s a sensory issue. For young children, this might involve getting comfortable around food without any pressure to try something: talking about it, going to the grocery store to look at it or venturing into a garden to touch different vegetables. Desensitizing can include massaging a child’s face, counting their teeth or—for younger kids—providing chew toys, all in an effort to get them used to different textures inside their mouth.
Treatment can be more successful after age eight, when a child is able to generalize about food, says Harris. For example, kids this age can understand that bread is bread, no matter the brand or packaging, or rationalize that an apple might be OK to eat, since they already like carrots, which are also crunchy. Children this age and older are more motivated to change and may have luck with cognitive behaviour therapy or relaxation therapy followed by tiny tastes of new foods, says Harris.
McKaelen underwent somatic experience therapy (also called touch therapy) during her treatment for ARFID. Over a number of sessions, a trained therapist touched where her adrenal and pituitary glands are located. This helped her relax, lowered the “fight or flight” response from the adrenal glands and gradually helped her overcome her revulsion to new and non-preferred foods. The therapy was part of a 20-week outpatient program that also included consultations with nutritionists, peer group discussions, twice-weekly peer dinners with other kids with eating disorders and group therapy for the parents.
The most important thing for kids with an ARFID diagnosis, say parents and experts, is to keep the child eating.
“Always give the child the food he or she wants, because growth is more important than anything else,” says Harris. And refrain from bribing them or begging them to eat—change will happen gradually, on the child's own terms.
Now 19, McKaelen is living in a university apartment and cooking for herself. After two or three years of touch therapy, she gradually reduced her sessions. She now goes out to eat at restaurants and will order a hamburger, or even chicken parmesan. She’s still not what you’d call an adventurous eater, says Elliot, but it’s a long way from ARFID.