More than a Picky Eater: Loving a Child With ARFID

We are delighted to repost an article from the Huffington Post that highlights the incredible work of Meredith Biggart, MS, RDN from the CNC team.
PD (to protect her privacy I edited out the name)

When you think of eating disorders, you might imagine social pressure related to body image. But a recently recognized eating disorder, ARFID (Avoidant Restrictive Food Intake Disorder) is not fear of what food can do to one’s body, but fear of food itself. And for many with ARFID, it’s a disorder they have had all their life.

When we brought our dark haired and tiny daughter home from the hospital 14 years ago, I was filled with a combination of giddy euphoria and white-hot terror. I had no idea how to care for an infant, and both my husband and I were without mothers to guide us.

“Don’t worry,” a nurse told me. “Newborns mostly eat and sleep. It’s what they’re hard-wired to do.”

In the case of my daughter, the nurse was wrong. Eating never felt natural or enjoyable.

When I nursed, my daughter screamed, resisted, or spit up. I was counseled to switch to a diet free of sugar, dairy, gluten and soy; I pumped breast milk and bounced on an exercise ball to coax her to swallow. When that only slightly worked, we tried several prescription formulas special ordered from the pharmacy. Months later, homemade organic purees were never eaten.

I worried that I was too tentative, too unsure as a mother to teach my child to eat. I thought my daughter was becoming a picky eater and it was my fault.

When she was 10 months old and small, we sat in a friend’s kitchen. My friend’s baby, the same age, effortlessly swallowed giant spoonfuls of green pureed something as I looked on in awe. My friend eyed my daughter. “Can I try to feed her?”

“Sure, I said.” In a swift move, a giant spoonful of green mush entered my daughter’s mouth. She swallowed. I couldn’t believe it.

“It’s me,” I thought to myself. I was hugely relieved, albeit embarrassed. If I were the problem, I could fix it. Before that thought was complete, however, my daughter was complete, however, my daughter vomited every bit of that spoonful and more, crying hard.

“It’s not you,” my friend said with a sad smile.

Even though my husband and I knew there was a problem, we didn’t know what the problem was. For many years, my daughter survived on “safe foods”: plain pasta, white rice, string cheese, fruit. If a piece of pizza or cake was put before her at a birthday party, she dissolved into tears of anxiety. When asked what her greatest fear was, she always answered, “New foods.”

Now at age 14, my daughter is a first-degree black belt in karate who can break boards and spars with boys larger than her. She sings and acts in school theatrical productions. But put a smoothie or an unfamiliar brand of mac n cheese in front of her, and she trembles with fear. Any meat, fish, or dish that mixes foods can make her gag on sight. When safe food choices aren’t available, she opts to eat nothing. When busy or distracted, she doesn’t eat.

Everyone has offered advice with absolute certainty: She’s picky because she’s an only child and too coddled. Serve one family meal and if she doesn’t eat it, she doesn’t eat. Ignore the problem, be patient, and she’ll outgrow it, like someone’s brother’s kid who ate nothing but cereal for 12 years and is now 6 foot 5. Food therapy recommended touching, licking, and tasting unfamiliar foods, which left my daughter fearful of meals. Her doctor said that as long as she was growing, we should be patient and do our best to introduce new foods. In other words, patience would help, or not. It was likely our fault, but she would outgrow it, whatever it was, unless she didn’t.

I shared my frustrations with a therapist who asked, “Have you had her tested for ARFID?” We had never heard the acronym, which stands for Avoidant Restrictive Food Intake Disorder. He recommended a food clinic nearby, and we joined a two-year waitlist. In that pandemic-fueled time, my daughter’s eating world contracted further. Foods could not touch and had to be eaten one at a time; some safe foods dropped out of favor: avocado, yogurt, cucumber.

A few months ago, we reached the top of the waitlist, and our daughter met a licensed dietician and food therapist who treated her with respect and validated her fears. She took care not to overwhelm her, even with the ARFID test, which they spread out over several meetings.

I now know that ARFID is a serious eating disorder, unrelated to body image, rooted in extreme fear or avoidance. Testing for ARFID screens in three domains related to food: fear, disinterest, or texture avoidance. A high enough score in any one category qualifies for an ARFID diagnosis. Our child qualified for ARFID across all three domains.

arfid is a fear of food itself

Many who suffer from ARFID had an early traumatic experience connected to eating or swallowing, like our daughter’s acid reflux as an infant, which made vomiting a daily occurrence. I read that some ARFID patients suffered a choking incident as a young child or were born with the umbilical cord wrapped around their neck.

An ARFID diagnosis isn’t a solution, but naming the problem helps. My daughter now has accommodations at her high school to carry snacks with her and eat somewhere other than the crowded, aroma-filled cafeteria.  In weekly sessions with her dietician, my daughter is learning that she’s not spoiled, not a picky eater, nor is she alone. Studies show that roughly 3% of 8 to 13-year-olds have ARFID.

If you’ve never heard of ARFID, you’re not alone. It’s only been officially recognized as an eating disorder in the past decade and many health-care providers are unfamiliar with the disorder.

Her work with her dietitian is supportive and meaningful. They set weekly goals to explore (and if all works out) try a new food. They make detailed plans for managing upcoming social situations related to food, which, face it, are most social situations (think: sleepovers, camps, long days at school).

Moving toward less disordered eating is a slow process, and I still have worries. Will our child become comfortable enough to manage her own nutritional needs in community with others? When college comes around, how will she navigate dining halls? Will she feel able to travel to new places on her own? When might food bring her less stress? Might it even someday bring her some joy?

While I don’t have all the answers, I realize how fortunate we are to have access to informed caring help that our insurance covers. I no longer beat myself as causing the problem. My job now is to help my daughter plan ahead as she learns to advocate for herself. She’s recently met two other kids in her high school who have ARFID.

In other words, we’ve stopped waiting for our daughter’s relationship with food to change; we’re working on it.

When I asked my daughter if she was comfortable with me writing about this issue for a public audience, she said, “ARFID is part of me, but it’s not who I am. I hope sharing my story can help some other people.”

February 27 to March 5 is National Eating Disorder Week.While ARFID is a serious eating disorder and eating disorders have the highest mortality rate of any mental illness, diagnosis and treatment help. If your child or you need help, contact your doctor or the National Eating Disorder Helpline.