On the blog Mealtime Hostage (subtitled: learning to love food) a commenter named Brian writes, "I am 56 years old. Yesterday I ate a Clementine Orange. It is the first citrus fruit I've ever eaten. I had another one today! I think you know what a huge deal this is! Thank you."
For people with avoidant/restrictive food intake disorder (ARFID), tasting or even being around foods that they would rather avoid is, indeed, a huge deal. First defined in the 2013 update of the DSM-5, the recently classified eating disorder is marked by at least one of the following symptoms: "significant weight loss, significant nutritional deficiency, dependence on enteral feeding or oral nutritional supplements, or marked interference with psychosocial functioning."
Though the condition goes far beyond your typical picky toddler, ARFID typically starts in early childhood and manifests most frequently in young boys, according to a study published in the Journal of Eating Disorders. Young people diagnosed with ARFID refuse to eat or eat very little. But what makes it different from other eating disorders is that ARFID is not rooted in body image issues.
"Prior to the DSM-5 update, we were seeing a lot of kids who you would now say 'fit the diagnosis,' but they had to be lumped into the category of 'eating disorder not otherwise specified' or 'feeding disorders of early childhood' or they were just not diagnosed," says Dr. Debra K. Katzman, a leading researcher on the disorder and senior associate scientist at the SickKids hospital at the University of Toronto. "Classically we think of eating disorders as either anorexia nervosa or bulimia nervosa. In those eating disorders, young people have distortions about their body weight, shape, or size. In this particular eating disorder, they don't have those distortions, which is very interesting."
Those with the condition often display a literal fear or suspicion of certain foods, sometimes following a traumatic event. However, there is no known cause. In the Paediatrics and Child Health, Dr. Katzman writes about a 10-year-old boy who had to go to the emergency room because he refused to eat solid foods for eight weeks; he feared choking after a previous incident involving steak, and his weight was rapidly declining. "He became progressively more restricted in the type of foods that he considered to be 'safe,'" Dr. Katzman writes. "Despite his parents' best attempt to feed him soft and pureed food, he failed to gain any weight."
Like any eating disorder, ARFID can be dangerous, leading to malnutrition and fatal weight loss. And if not deadly, extreme picky eating habits can carry on into adulthood. (Some might think of 30-year-old Kelly, a subject on the TLC show Freaky Eaters who went viral for her diet consisting of only cheesy potatoes. On the show, she cried from anxiety when confronted with vegetables.) In Scientific American, Dr. Katzman underscores that early awareness—and awareness of the disorder in general—is key. "Once we identify and characterize these cases, we can begin to study different types of treatments, long-term outcomes and root causes of the illness," she tells the publication. There's still a lot of research to be done.
"A big part of the community-based study I'm working on with [my colleague] Dr. Mark Norris is to educate pediatricians so that they can make a diagnosis as soon as possible," Dr. Katzman tells me over the phone.
Because it's a fairly new concept, parents whose children have ARFID often come up with creative solutions to figure out what will help their children eat. In 2012, Skye started the Mealtime Hostage blog about her son T.J.'s eating habits when she didn't know what else to do. Her toddler had sworn off vegetables, meat, and any fruit that wasn't red, among most other things. Having accidentally choked on food, he was scared of it, and at the first indication of mealtime he would run and hide. Over the phone Skye tells me that, at his pickiest, T.J. ate a grand total of 11 different types of food. To him, she writes in an early post, "potatoes, broccoli, chicken, or beef" might as well be "a large locust or a wriggling fur-covered caterpillar." Through her blog, she was determined to learn, experiment, and gradually expand his diet.
"Since T.J. was two, we'd go to the doctor and say that our son is really picky and he's not eating anything, and we'd usually get a response like, 'Oh, all kids are picky eaters. Don't worry about it.' Then we'd go back for his third-year checkup and get the same thing," she says. "By the time he turned five he was getting really skinny, and nothing was improving. At that point I realized that our doctor didn't know how to help us, and I knew I had to figure it out. There was very little information out there at the time, so I thought I'd start the blog to keep all my research in one place."
Read More: When You're Both Overweight and Anorexic
Skye started to find more people dealing with the same problem she was. Finding the Facebook group Adult Picky Eaters was the first sign of relief: "I thought, At least there are grownups who have gone through life not eating vegetables and have survived." From there, she learned and tested out methods to entice her son to eat more than just a specific type of cracker, like cutting up fruit in the shape of french fries. "It was very much about supporting his eating ability, acknowledging his anxiety, and working with it," she says.
Another tactic was getting her son to simply interact with food. When T.J. played with pasta for the first time without crying—joyfully flinging noodles at his sister (but not eating them, of course)—Skye logged that as a victory. At the end of the "meal" he asked, "Can we have noodles for dinner tomorrow night?"
"Now," his mom says, "T.J. eats quite well, and he would no longer be considered a 'selective' eater."