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Brian Lehrer: It's The Brian Lehrer Show on WNYC. Good morning again, everyone. Later in the hour, we're going to talk to two of the principals involved in the reopening of the Delacorte Theater, the return of Shakespeare in the Park this week to Central Park. First, a new article in The Cut from New York Magazine is headlined The Monster at the Dinner Table. It explores this condition with the case study of a girl named Amelia.

Amelia saw a character choking on TV and became convinced and terrified that it would happen to her, too. Her case is so bad that not only did she refuse to eat foods as hard to choke on as yogurt, and sorry if this is a little gross, but this is how intense it can get. She would actually spit out her own saliva as she produced it. The Monster at the Dinner Table in the headline is a condition called ARFID.

Joining us to explain more is Caitlin Moscatello, contributing writer at New York Magazine, who wrote that article in The Cut. Also with us is Dr. William Sharp, director of the Multidisciplinary Feeding Program at Children's Healthcare of Atlanta. He's also an associate professor in the Division of Autism and Related Disorders and the Division of Pediatric Gastroenterology, Hepatology, and Nutrition in the pediatrics department at Emory University School of Medicine. The very credentialed Dr. Sharp and Caitlin Moscatello from New York Magazine, welcome to WNYC. Thank you for coming on for this.

Caitlin Moscatello: Thank you for having us.

Dr. William Sharp: Yes, thanks for the invitation.

Brian Lehrer: Dr. Sharp, can you break down for us in clinical terms, what is ARFID? What do those initials stand for? Tell us more about the condition.

Dr. Sharp: Sure, so ARFID stands for avoidant/restrictive food intake disorder. ARFID is a psychiatric condition that involves a strong negative association with food that develops as a result of repeatedly pairing food and eating with pain, discomfort, and/or significant distress. This negative association changes how food is perceived. Rather than something that is viewed as enjoyable and positive, food becomes something to avoid and be feared.

Avoiding food and restricting intake can have significant impact on a child's health and daily functioning. We most often recognize this as weight loss or malnutrition, but it doesn't always show up as weight loss. Sometimes individuals with ARFID eat enough calories, but just not the right balance of foods, and they go on to develop serious medical conditions like scurvy and rickets.

Brian Lehrer: Caitlin, you write in your article that ARFID is a fairly new addition to the modern parenting lexicon. Is your understanding, and we'll ask Dr. Sharp, too, that this is a relatively new condition or an expanding and prevalence condition, or is it something that maybe has been there at whatever levels, but it finally got identified?

Caitlin Moscatello: Yes, ARFID was entered into the diagnostic manual in 2013, but as Dr. Sharp will tell you, it certainly existed before that. What's happening is there's a diagnosis for it now. There's a label. Over the past decade, and certainly in the past several years, there's been this increase in diagnoses. Part of that is increased awareness, and then part of that is also even the way that we parent. Parents are more aware of their child's development. There's this increased focus on catching early red flags. We're seeing an increase in parents sending their kids to OT and other sort of therapies as well.

There's a piece of it. ARFID has always been there, but the awareness is causing parents to bring their kids in. There is this increase in diagnoses. Then as Dr. Sharp can probably add to this, there's also medical advancements. There's three different buckets of ARFID. There's kids who are disinterested in food. Not often, but sometimes those kids are kids who were, as infants, put into the NICU. They had some sort of severe medical condition, right? They're put on a feeding tube. It saves their lives, but it bypasses that sensory and tactile experience of eating.

Brian Lehrer: Right, the relationship with--

Caitlin Moscatello: Right, and so as there's medical advances, obviously, a great thing. You get this secondary problem that can happen, though, in that these kids then aren't developing hunger cues. They just have difficulty eating, and that continues on into their childhood.

Brian Lehrer: You write, "Only in the past few years has the acronym begun circulating on playgrounds and in school nurses' offices, and it's not uncommon for parents to first stumble on it on their own on Reddit threads or Facebook Groups or on Instagram or TikTok." Listeners, we're going to open up the phones right away. If you or someone you know have experienced ARFID, 212-433-WNYC, tell your story.

Especially with Dr. Sharp here, feel free to ask a question. 212-433-WNYC. Are you a parent whose child has struggled with what is sometimes described as extremely picky eating or fear around food, or maybe you're an adult who dealt with this growing up and didn't even know what it was when you were a kid, and your parents didn't either? 212-433-WNYC, 212-433-9692. Dr. Sharp, how common is this, and what do you do about it?

Dr. Sharp: Yes, so we now know it's fairly common. Depending on which population you're talking about, it can be as high as 5% to 10% of children. As Caitlin emphasized in the article, we are seeing that some pediatric subgroups, such as children born with prematurity or developmental conditions with autism, are at really high risk. Some estimates saying 90% of children with autism are at risk for developing ARFID.

I think another thing that resonated in the article that I think Caitlin did a great job of that the stress and confusion this presents for parents and families when their children are avoiding or rejecting food. I think some of that confusion stems from the fact that we all have a relationship with food. For most of us, it's a positive relationship. Most children and adults enjoy eating. When a child's not enjoying food and dropping or rejecting foods, it can be extremely traumatizing for caregivers. I want to highlight that part as well. A major job of a parent, after all, is to feed their child and make sure they're well-nourished.

Brian Lehrer: Right.

Dr. Sharp: Until recently, there was not an adequate diagnosis to capture this type of food rejection, leading to a further sense of helplessness.

Brian Lehrer: Let me ask you a quick follow-up question on that before you go on to how you treat it. Because ARFID is sometimes, as I referred to, described as a form of extremely picky eating, but what makes it different from more well-known eating disorders like anorexia or bulimia, where people also may avoid food to certain degrees?

Dr. Sharp: Yes, that's a great question. ARFID is distinct from other eating disorders, such as anorexia and bulimia, in a few key ways. First, with conditions such as anorexia and bulimia, food often retains its pleasurable value. Patients with anorexia and bulimia are often obsessed with food, but they are restricting due to weight or shape concerns. ARFID, on the other hand, involves that negative relationship with food without the weight or shape concerns.

Second, while both ARFID and other eating disorders involve some fear around eating, the focus of the fear is very different. With anorexia and bulimia, the fear is on the outcome of eating, the potential for weight gain. With ARFID, the fear is on the process of eating. The potential for an unpleasant event happening while eating. Finally, ARFID is both a feeding and an eating disorder that can emerge at any point throughout the lifespan, while other eating disorders tend to emerge during late childhood or adolescence. This is one reason that ARFID is being studied at both pediatric and eating disorders facilities.

Brian Lehrer: Let's get some phone calls in here. You know what? This is common enough that all 10 of our lines lit up immediately when I gave out the phone number. We're only going to have time for a few people's stories. Hopefully, they'll be representative and helpful to others. Andrea in Newberg, you're on WNYC. Hi, Andrea.

Andrea: Hi, how are you?

Brian Lehrer: Good. Thank you for calling.

Andrea: All right, so both of my daughters have ARFID. One is autistic, and she eats very limited. Maybe six or seven things. My other daughter was diagnosed with ARFID. She was in and out of eating disorder residential. They did nothing, except make her gain weight, which was a horrible thing for her. Because she didn't want to eat anything, so they would give her ensure effort, ensure effort, ensure.

All the women in my family do have eating disorders. Growing up, everybody was like, "Oh, just put the food in front of them. They'll eat." That never happened, and I felt bad. I couldn't let them go hungry. My daughter said that with the ARFID, there's something neurological that was underdeveloped. That's what can cause the issues with sensory and all that stuff. Is that true?

Brian Lehrer: Neurological, underdeveloped. She's asking, Dr. Sharp, is that true what she was told?

Dr. Sharp: Sensory sensitivity to foods, the smell, the taste, the type, the texture, is one of the major three presentations that Caitlin does a great job of highlighting in the article. I'm sorry to hear about her experience. I'm always a big proponent of making sure the right patient gets to the right treatment place at the right time. For younger children, I'd highly recommend looking at a pediatric approach. I think from an eating disorders perspective, a lot of the eating disorders programs are still trying to adapt or change their treatment to better serve ARFID, but there is a long history of pediatric programs, such as mine, having experience with ARFID, especially in younger patients.

Brian Lehrer: I hope that's helpful, Andrea. What about residential? She mentioned residential care for ARFID, it sounded like. Is that a thing you know?

Dr. Sharp: Yes, so we offer here in Atlanta, an intensive day program. You come Monday through Friday, four meals a day, five days a week for up to 10 weeks, so multiple months. Families really come and live with us as we help them re-establish a more positive environment related to meals and really help the child become comfortable and develop a positive relationship with food. That's the overall goal of an ARFID treatment is to help individuals experience food in a hedonically different way, to actually enjoy eating versus fear and avoid it.

Brian Lehrer: CJ in Manhattan, you're on WNYC. Hi, CJ.

CJ: Hi, Brian. Thanks so much for having me. I wanted to bring up a point that I think was touched on in the reporting of the original article in the magazine, but I thought was also wonderful to bring up, is that for adults that suffer with ARFID like myself, I was diagnosed at 18, and it's been four years later. It's quite difficult now that childhood is over to navigate ARFID symptoms as an adult.

How do adults navigate that sort of thing? To the medical professionals, how do you think adults should navigate new diagnoses for ARFID that might not have had the vocabulary when they were younger, and maybe the same parental resources who might be dealing with even more social anxiety and societal struggles, pressures, and dating, and things like that when it comes to their newer ARFID diagnosis?

Brian Lehrer: Great question. CJ, can I ask you a quick follow-up before we get Dr. Sharp's response? Do you think that you had it as a younger child, but nobody recognized it, or did you develop it close to when you were 18 and diagnosed?

CJ: That's a great question. I always suspected that I had it since childhood. I was one of the children that rejected food since infancy, like at the point that I developed free will, maybe around three or four. I didn't know that there was any sort of thing that defined it outside picky eating, probably until I was 16 years old. Then it took another two years to really summon the courage to go to a doctor's office and discuss it further.

Brian Lehrer: Thank you for explaining that. That in and of itself is very instructive for people who aren't aware of what's going on with themselves or their children. Dr. Sharp, can you help CJ or answer her question as she tries to adjust to this at, I guess, age 22?

Dr. Sharp: I think this is a great question. I agree, and I appreciate her calling in. In the article, Jenny Thomas is a colleague of mine who works with adults at Harvard. She's written a book that is highlighted in the article as well. I think Jenny has a great network of people. I would highly recommend looking into her work because she does specialize more in the older adult population.

Caitlin Moscatello: I will say too, since the piece came out, I've been contacted by a number of adults who have ARFID and who suspect that they have had this for most of their lives, and just said, "God, I wish this existed. I wish there was this awareness. I wish this label had been created when I was a kid because my whole childhood might have been different."

There are online forums filled with adults who have since gotten an ARFID diagnosis, but who have horror stories of being forced to sit at the dinner table overnight because their parents, they had no framework for what was happening, and it was viewed as defiance. Because they didn't have this understanding of the brain and how ARFID is an actual condition, that this isn't misbehavior. Some people who are adults now, in the '80s and '90s, dinner time was stressful for them and their parents, but they were screamed at.

Brian Lehrer: Yes, an extended help.

Caitlin Moscatello: It could be really horrific, yes.

Brian Lehrer: Anita in Manhattan, you're on WNYC. Hi, Anita.

Anita: Hi, how are you? I just wanted to share that I have an almost 13-year-old, and he's never been formally diagnosed with ARFID. He was treated as a problematic eater. He was getting treatment through NYU outpatient program, et cetera, under the sensory processing disorder. Honestly, he still has this issue. In fact, two days ago, he said, "I hate eating." He clearly has a negative relationship.

It does have to do with smell, textures of foods. That's the big issue. Also, the combination of textures of like think of a stew, for example. Forget it. He's going to completely avoid that. What I wanted to bring up really mainly is the treatment, the axis of treatment. This gentleman who's on your show right now is based in Atlanta. Well, I can tell you that my son had to wait five years to finally come up with a wait list to attain the treatment.

He started just this spring. Then when it did happen, it's inaccessible in the sense that he said, "Okay, if he's going to get this intensive treatment, he's got to be pulled out of the school, or you can come back onto the wait list." The accessibility is very difficult right now, and it's not favorable. When the treatment is in place, it is very wonderful. At the hospital, it involves a behavioral therapist, a speech therapist, an occupational therapist, a dietitian, a nutritionist.

When the treatment is there, it's rather integrated. I can tell you, it's not very accessible, and it's very expensive, whether it be through private pay or insurance or what have you. Also, I went through such a process to get it pre-authorized by the insurance. A lot of paperwork by my son's psychiatrist because he has ADHD, et cetera, et cetera. I can carry on, but I'll just stop for now. [chuckles] Thank you.

Brian Lehrer: Anita, that was really helpful, I think, to people who may be in this position in one way or another relationship to it themselves. We're close to the end of this segment. Dr. Sharp, can you address at least two things there? One is, how accessible is care? She talked about her 13-year-old finally getting treatment after five years on a wait list, so there's a shortage, and also dealing with insurance to get it covered.

Dr. Sharp: Yes, so the caller is spot-on that there is a huge unmet need in this country. Our estimates are that more than a million kids need treatment, and the capacity at these specialized centers is more like a thousand. You can do the math there. There's a huge unmet need. Insurance oftentimes is a barrier because I think there's some confusion. Is it behavioral? Is it medical? Who pays for this?

I will say, the caller did a nice job of also emphasizing that we do have treatments that work. They're behavioral or cognitive behavioral that focus on building that flexibility and reducing the anxiety around eating. There is treatments. Part of my work is hopefully scaling and making programs more available. That's a big career goal of mine. I've been partnering with organizations such as Feeding Matters, which is a nonprofit, to help bring awareness and hopefully increase the system of care for patients.

Brian Lehrer: With that, we thank Caitlin Moscatello, contributing writer at New York Magazine, who has obviously touched a chord with people, just judging from the response to this segment with her article, The Monster at the Dinner Table, and Dr. William Sharp, director of the Multidisciplinary Feeding Program at Children's Healthcare of Atlanta. He's also at Emory University School of Medicine, as they've been talking about the condition known as ARFID. I think this was really helpful to a lot of listeners. Thank you very much for coming on.

Caitlin Moscatello: Thank you.

Dr. Sharp: Thank you.

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