Feeding Connection: Embracing the Needs of My Child with ARFID

About the Author

Catherine Bell, Ph.D. is a mother of twins and a pediatric neuropsychologist in private practice.

I made a rookie mistake this week. My son’s favorite English muffins, the only ones he’ll eat, are out of stock at all of the local stores. This happens sometimes, but it’s always stressful because it’s hard for him to eat something different. I thought I’d buy another brand, just to see if maybe he would accept them. He last rejected this exact brand when he was about 5. He’s now 11.

I told him I would be giving him a different brand of English muffins, but that he didn’t have to eat them. “No pressure,” I said. I toasted two of them, buttered them, and sprinkled them with a nutritional supplement. I handed them to him. He took one or two bites. “I don’t really like them,” he declared.

“OK,” I said. “We have some toast here. Want some toast?” He did. He is usually willing to eat sourdough, but not all types of sourdough, so it was a gamble. It was sandwich bread, which he usually rejects. I toasted two slices, buttered them, sprinkled the supplement, and delivered them. He inspected them, then bit the edges, tentatively. “I don’t like this either. I think I’ll just go upstairs.” He didn’t eat breakfast that morning.

In case you haven’t guessed, my son is diagnosed with ARFID, or Avoidant/Restrictive Food Intake Disorder. ARFID was first codified as an “official” eating disorder in 2013, in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). There is some overlap between ARFID and Autism, though they are not the same: in a 2023 review of the topic, researchers estimated that somewhere under half of children diagnosed with ARFID are also Autistic. Children with ARFID usually have a short list of accepted foods, and are not able to try new foods without a great deal of fear or disgust. They sometimes gag, choke, or throw up foods that they find aversive. Treatment for ARFID is difficult to find, and progress can be quite slow; some in the ARFID community feel that treatment may be too coercive and not neurodiversity-affirming. Individuals with ARFID are often subjected to judgment by others who think that they are being childish by not eating whatever is offered. 

My son has about 4 or 5 accepted foods, and he takes vitamins to make up for the rest. When he was younger, this morning’s exchange would have triggered a familiar emotional storm for me: fear, shame, anger, desperation. And the thoughts: “He’s not eating breakfast. What do I need to do to get him to eat breakfast? What will happen to him if he doesn’t get the right nutrition?” When your child is in danger, you can’t think about anything else. So when he stopped eating most foods around his first birthday, all I could think about was how to fix it.

I’ve since learned that this is a common experience for families of children with ARFID. Children have a narrow range of foods that they can tolerate, and parents get frightened that their children are going to experience malnutrition. They try everything possible to expand their children’s repertoire of accepted foods, but the pressure, urgency, and anxiety tend to cause the plan to backfire, resulting in the child fearing mealtimes altogether. (Sometimes children fear mealtimes anyway because of the smells and sights of certain foods.) 

Because it’s so rare, and so poorly understood, people can’t believe ARFID is real. They assume parents haven’t heard of all the ways to get their children to eat. Pediatricians, teachers, friends, and family members make suggestions: “Have you tried smoothies?” “What about melting cheese on vegetables?” We’ve also heard, “That would not fly in my house,” implying that this would all be solved by stricter parenting.

We used feeding therapy for several years, which resulted in my son being willing to lick an apple once in a while. And we were the lucky ones because my son was growing, against all odds. Plenty of ARFID families have to cope with growth delays, lack of weight gain, or other medical vulnerabilities. Some children with ARFID do not eat at all, necessitating more invasive medical interventions. Others do not feel hunger and forget to eat unless they are prompted. Parents can disagree about how best to address ARFID; typically, there are arguments about whether the child is being coddled and how much money to spend on therapies that offer little progress. 

Kids with ARFID have even more difficulty eating outside the home. Birthday parties sometimes come with weird-smelling, unfamiliar foods, along with Technicolor frosting on cake. If kids bring their own foods, it can seem impolite or ungrateful to hosts. Holidays present plenty of challenges: if it’s hard to sit at a quiet table with a plate of spaghetti, it is almost impossible to sit at a crowded, noisy table being pressured to eat. Some kids can have a difficult time sitting at lunch in the school cafeteria because the smell of the food is so overwhelming. When we went on a vacation overseas one year, my son developed a heart arrhythmia because he could not eat any of the foods offered to him. We finally found him a can of potato chips at the hotel gift shop, which he ate with gratitude. His color returned, and his heart rate calmed down. Mine took a bit longer. That week, he ate exactly two foods, over and over: potato chips, and bread. As his mother, I spent the week worrying about his safety, learning all that I could about the food options in the area, and fending off questions from concerned family members. 

We stopped working with dietitians and occupational therapists in my son’s 10th year, shortly after he received his autism diagnosis. He was missing too much school for feeding therapy, and he was not eating a wider range of foods, even after years of support. Also, I was starting to see that there was not much to be gained by sitting and talking with a dietitian each week. Rehashing the fact that my kid was not eating many foods was, well, depressing. His medical team at Children’s Hospital Boston tested his blood and said that he was largely OK, and that he had resumed growing after a terrifying six-month stall. (They also recommended a half-dozen supplements and possible food combinations, all of which he rejected.) 

ARFID forces parents to examine our priorities: do we want to keep trying to change our child, or do we want to cultivate something different? We all have preconceived notions about what family life will be like. We pressure ourselves, and our children, to make these fantasies come true. Mine certainly included a vision of putting dinner on the table and having my child eat it with joy, or, at least, resignation. When our child does not conform to the vision, the only option is to turn towards reality. In reality, I have a kid with a beautiful heart and a wicked sense of humor, who may never eat meat or fruit or vegetables. I’m glad he never abandoned himself for my priorities. I spent 10 years turning mealtimes into “learning opportunities,” with carefully curated foods designed to expand his palate. While he occasionally tries a new food, he has never, ever done so because of my efforts. He eats the same thing most days, and on most days I feed him what he will eat. There is relief in letting go of the struggle, and I am hopeful that the growing awareness of ARFID will help other families do the same.