ARFID<\/a>, or avoidant\/restrictive food intake disorder, a psychiatric diagnosis, often emerging in childhood, that can range from eating a very limited number of foods to refusing food altogether. Like many other parents, Mark and Laura hadn\u2019t heard of ARFID. It seemed the numerous doctors who had seen Amelia over the past month hadn\u2019t either.<\/p>\nARFID is a fairly new addition to the modern parenting lexicon: A behavior far more severe than pickiness, it\u2019s an eating disorder provoked not by the desire to change one\u2019s body but by the fear of food itself. Only in the past few years has the acronym begun circulating on playgrounds and in school nurses\u2019 offices, and it\u2019s not uncommon for parents to first stumble upon it on their own \u2014 on Reddit threads, in Facebook groups, on Instagram or TikTok. (This month, Real Housewives of Orange County star Emily Simpson shared that her 10-year-old son has the disorder.) One mother told me she\u2019d learned about ARFID after searching online, \u201cWhy is my 5-year-old eating absolutely nothing?\u201d \u201cBulimia came up. He doesn\u2019t have bulimia,\u201d she said. \u201cThen I saw anorexia, and I was like, He doesn\u2019t have anorexia. And then I scrolled more and it said, \u2018Does your child have ARFID?\u2019 And he had every symptom.\u201d<\/p>\n
Doctors who specialize in eating disorders say they have seen an increase in diagnoses over the past several years, and a recent study found that, among children, the number of inpatient hospital discharges in which ARFID was the chief diagnosis doubled from 2017 to 2022. \u201cThere was this explosion almost six years ago, when we had a bunch of cases coming into the hospital,\u201d said Heather Kertesz-Briest, a clinical psychologist who used to work at Children\u2019s Hospital Los Angeles. Equip, a telehealth company specializing in eating disorders, treated more than 1,000 ARFID patients in 2024 \u2014 a 144 percent bump from the previous year. And Beat, a U.K.-based charity that runs eating-disorder hotlines, reports that there were nearly seven times as many calls about ARFID in 2023 than in 2018. There is limited data available, but one review estimates that up to 5 percent of the population has it, and a 2023 screen of 50,000 adults suggests it may be as common as anorexia.<\/p>\n
While classified as an eating disorder, ARFID may be more easily understood in many children as an anxiety disorder that centers on food. Its rise coincides with a pediatric diagnostic boom in mental-health conditions as more and more children are treated for generalized anxiety disorder, autism spectrum disorder, and ADHD \u2014 raising the question of whether they are a generation maladapted to the world around them or the first generation to be thoroughly understood. ARFID often orbits these diagnoses, a disorder that can become the most physical manifestation of what\u2019s happening in a child\u2019s mind. \u201cThat primal instinct to feed your kid, that is millions of years of evolution,\u201d Mark said. \u201cIt\u2019s scary for your kid to not eat and not drink and to not understand, What\u2019s going on here?\u200a\u201d<\/p>\n
ARFID existed long before doctors gave it a name. For decades, health professionals working in hospitals and eating-disorder clinics encountered patients who were severely underweight from not eating but who didn\u2019t qualify for an anorexia diagnosis because they weren\u2019t trying to lose weight or grappling with body dysmorphia \u2014 instead, they were disinterested in food, felt disgusted by it, or feared it. Twenty years ago, \u201cthe way we thought about some cases was that maybe the patient has anorexia secretly but they have a lack of insight into it,\u201d said Jennifer Thomas, a psychologist and co-director of the Eating Disorders Clinical and Research Program at Massachusetts General Hospital.<\/p>\n
Until 2013, the year ARFID entered the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the closest label was \u201cfeeding disorder of infancy or early childhood,\u201d a code for children under 6. But the age cap made the label inapplicable to many patients, and it wasn\u2019t widely used or researched. Unable to find meaningful literature on the condition, authors of the DSM-5 spoke with psychologists and doctors who worked with eating-disorder patients and identified a specific patient profile: a person with sufficient access to food who wasn\u2019t concerned with altering their body shape, and who restricted or avoided eating to a point where they lost significant weight, didn\u2019t get enough nutrients, and\/or experienced mental and social distress. These patients were, on average, younger and more likely to be male than those with anorexia. They lived not just in North America and Europe but also in Oceania, Southeast Asia, and Japan. When Thomas and her colleague eventually published a treatment manual for ARFID, they quickly got requests for editions in other languages, including Turkish, Italian, and Spanish.<\/p>\n
The DSM-5 authors identified three presentations of ARFID, which themselves can feel like different diagnoses, though some patients fall into more than one category. One subgroup is made up of those who are simply uninterested in food, often from birth. Many were, as newborns, admitted into neonatal-intensive-care units, where they were put on feeding tubes. The tubes are lifesaving, but they bypass the tactile experience of eating, which can lead to an oral aversion. Some tube-fed babies struggle to develop hunger cues or learn the mechanics of swallowing. Years later, they may still lack the two major motivators to eat: They don\u2019t feel hunger, and they don\u2019t enjoy food.<\/p>\n
A second category is made up of people who have a sensory aversion: They tolerate certain tastes, smells, temperatures, and textures and feel disgusted by most everything else. Many of these patients are neurodiverse, and while it\u2019s common for people with autism to have sensory sensitivity to food, \u201cwhere ARFID rears its head is when the sensory experience is so discordant, so displeasurable, that it creates a full-body anxiety response,\u201d said Matt Zakreski, a clinical psychologist who specializes in neuropsychological developmental disorders. \u201cIt\u2019s analogous to the difference between having seasonal allergies and having anaphylactic shock.\u201d<\/p>\n
The most sudden ARFID cases fall into a third group: children like Amelia who develop a fear around eating, often after experiencing a traumatic event. Kellee Lanza-Bolen, a mother in Virginia, said her 8-year-old daughter stopped eating after choking on gummy candy she got in her Christmas stocking. The next month, her daughter was admitted to the hospital, where she was eventually diagnosed with ARFID and put on a feeding tube. Lanza-Bolen was confused; she had seen videos of Hannah Lea, a 9-year-old girl who chronicles her life with ARFID on Instagram and TikTok. But Hannah has sensory-processing issues. \u201cWhen I heard ARFID, I said, \u2018Well, no, because my kid doesn\u2019t have sensory issues,\u2019\u201d Lanza-Bolen said. Her understanding of the disorder shifted once she learned it can be a response to a harrowing experience, similar to a person who becomes terrified of driving after a car accident. She now compares her daughter\u2019s anxiety around swallowing to \u201cthe same fear that keeps you from getting too close to the edge of a balcony or the top of a building.\u201d<\/p>\n
As the disorder gained recognition, diagnoses naturally increased. The way Zakreski sees it, the embrace of the label stems from clinicians developing a more holistic understanding of the brain. \u201cFor a long time, we treated mental health through the medical model: You have a broken ankle, that\u2019s it. You have pneumonia, that\u2019s it,\u201d he said. \u201cNow, we know that any change to the brain predicts a lot of other changes, that one neurodivergence predicts other neurodivergences at a significantly higher rate.\u201d One study, for example, suggests more than half of ARFID patients have autism, a disorder with a strong hereditary link and rising diagnostic rates. In Kertesz-Briest\u2019s practice, nearly every single child with ARFID she sees also has an anxiety disorder, the most common mental-health diagnosis in adolescents. Meanwhile, food allergies, which can make eating feel like a fearsome game of roulette, are increasingly common among children, and William Sharp, the director of the Multidisciplinary Feeding Program at Children\u2019s Healthcare of Atlanta, said it\u2019s no coincidence that more than 30 percent of his patients with a food allergy likely also have ARFID. Premature birth is also a known risk factor for feeding problems that can develop into ARFID, and as of 2023, nearly 10 percent of newborns are admitted into a neonatal-intensive-care unit.<\/p>\n
ARFID, in other words, is poised at the juncture between the physical and the psychological, the genetic and the environmental \u2014 both something that\u2019s existed under parents\u2019 noses all along as well as a consequence of our contemporary age. And at a time when parenting culture is more attentive and anxiety-ridden than ever, the mystery ARFID presents mirrors the larger questions at the top of every parent\u2019s mind today: How much control do we have over our children, or how much control should we exert? When does our vigilance contribute to our children\u2019s anxieties, and when is it the only thing keeping them alive?<\/p>\n
After Amelia was put on a feeding tube and stabilized, she was transferred to another hospital, which had an eating-disorder clinic. The clinic was disorienting. Amelia was the only 7-year-old there, and in the waiting room, her family found themselves sitting between toddlers with feeding issues and tween and teen girls. Mark gazed at the other parents, all of whom looked \u201clike a bomb had gone off,\u201d he said.<\/p>\n
For the next few weeks, he and Laura split their time between the clinic and their home, three hours away with traffic. Their marriage, bruised by the past few months, began to buckle. \u201cWe had a ton of angst about, How did we mess up our daughter?\u200a\u201d said Mark. \u201cWhen your kid gets cancer, you can\u2019t blame your spouse. When your kid has something more psychological, you start asking, Did I cause this? Was this something I did or said? Was it something my spouse did or said?\u200a\u201d Laura worried that Mark\u2019s frustration with Amelia \u2014 he had gone from being the calm, steady parent to raising his voice \u2014 had unnerved her. Mark worried that it was Laura\u2019s anxiety that had rubbed off. \u201cWhy did you tell her she\u2019s going to die from choking?\u201d he asked. Meanwhile, at the hospital, Amelia was in constant agitation. She tried to rip out her feeding tube. She screamed and spit, asking why the doctors weren\u2019t helping her. Her mind was still making her body believe she couldn\u2019t swallow.<\/p>\n
ARFID, like the diagnoses it often accompanies, exists along a wide spectrum, with cases like Amelia\u2019s at the most severe end. Many children with the disorder will eat but only from a very short list of foods. Those with a sensory aversion in particular tend to have rigid preferences, almost always gravitating toward carbohydrates. Jennifer Thomas, the psychologist who published the ARFID treatment manual, said this is true across cultures: In Boston, where she is based, the food of choice is Annie\u2019s macaroni and cheese, while colleagues in Mexico see a preference for tortillas, and in Asia and the Middle East, rice. Processed and packaged foods \u2014 consistent in shape, size, and taste \u2014 are also deemed \u201csafe\u201d by children with ARFID, and doctors in the U.S. see a strong proclivity for McDonald\u2019s chicken nuggets and frozen dinosaur-shaped nuggets. The difference between \u201csafe\u201d and \u201cunsafe\u201d can be minute \u2014 at Children\u2019s Healthcare of Atlanta, kids getting treated for ARFID stopped eating the pur\u00e9ed chicken nuggets they had been consuming for weeks when the brand the hospital used tweaked its recipe.<\/p>\n
In many ways, these cases can prove the most challenging to navigate. A child who won\u2019t eat at all presents a clear crisis, while a child who eats a few specific foods and isn\u2019t in imminent danger of starvation leaves more room to question what\u2019s pathological and what\u2019s not, what may just be a child asserting their independence and what warrants medical attention. Plenty of general practitioners still aren\u2019t aware of ARFID, and one study found it can take almost three years to get a diagnosis after the onset of symptoms, more than double the average time for someone with anorexia.<\/p>\n
Sarah, a mother in New York, was alarmed to learn from a teacher that her daughter, then in preschool, had been eating only apples for lunch and refusing everything else. The pediatrician assured her and her husband it would pass \u2014 in the doctor\u2019s office, \u201cthe philosophy was \u2018Well, she\u2019ll eventually get hungry and eat the food that\u2019s on the table,\u2019\u201d Sarah said. Maybe, they thought, their daughter was simply strong-willed. They agreed that accommodating her increasingly specific food requests would reinforce the behavior. Her diet moderately expanded. But when she was 8, she was being bullied at school, the family\u2019s nanny left, and suddenly she wanted only applesauce for two weeks, saying anything else \u201churts my body.\u201d One night, when getting her daughter dressed for bed, Sarah was startled to see how thin she had gotten. At an eating-disorder clinic, Sarah\u2019s daughter was diagnosed with ARFID. Later, after a full psychological evaluation, she was also diagnosed with ADHD and generalized anxiety disorder and flagged for possible autism. Now, Sarah stays alert to when her daughter wants more applesauce than usual, mindful that it could be a warning sign.<\/p>\n
This is a generation of parents who have made food a terrain of their success as caregivers, who see mealtime as a ritual for connection and are highly conscious of what exactly their children consume. When Tania of Perth, Australia, got pregnant at 38, she decided motherhood \u201cwould be my next career.\u201d She took courses on sleep training, read parenting books, learned how to blend her own pur\u00e9es. But after a traumatic birth that broke her son\u2019s collarbone, followed by a series of respiratory infections and a tonsillectomy, her son, now 5, didn\u2019t take to food, accepting only milk and bread. When she put blueberries on his plate, he would pretend to eat them before throwing them on the floor. Instead of bonding with her son at mealtimes as she had envisioned, Tania began to anticipate his resistance. Once, she said, \u201cI put the food on the table and burst into tears.\u201d<\/p>\n
Tania and her son\u2019s world grew smaller. Mommy-and-me classes were stressful; he tired out easily from not eating enough, and she felt embarrassed when other parents pulled out lunch boxes with fresh fruit while her child ate only puffed snacks. Finally, a dietitian recommended a book called Helping Your Child With Extreme Picky Eating, which described ARFID and included a chapter on parents blaming themselves for their child\u2019s difficulty with food. Upon reading it, Tania said, \u201cweights were lifted from my shoulders.\u201d<\/p>\n
![](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2025\/07\/b2d42bdae1e135c70ccc18ef859846dc67-arfid-kids-artwork.rvertical.w570.jpg\")
<\/p>\n
\n When he was 4, Tania\u2019s son drew this self-portrait with a dark scribble on his stomach at school. He was diagnosed with ARFID shortly after.<\/p>\n
Parents of children with more moderate cases of ARFID \u2014 those kids who eat a few foods \u2014 describe living in fear of others\u2019 perceptions. They worry that fellow parents think they\u2019re lazy and don\u2019t want to cook or that their whole family must subsist on Goldfish and chicken nuggets. (Some patients who eat a rigid diet of high-fat or high-carb foods may even be overweight. In a private ARFID Facebook group, a few parents post about their children being diagnosed with diabetes.) \u201cParents say to me, \u2018Well, you just need to make sure they eat variety,\u2019\u201d said Sarah. While her daughter has ARFID, her other child eats almost anything. \u201cI\u2019m like, We have all the fresh fruits and vegetables. My kids were raised exactly the same. In terms of nature versus nurture, their nature is completely different.\u201d One Christmas Eve after being pressured to eat, her daughter with ARFID began hyperventilating at the table in front of their extended family. A relative pulled Sarah aside and told her such a disturbance can never happen again. \u201cThey think it\u2019s misbehavior, that we aren\u2019t disciplining her,\u201d she said.<\/p>\n
Eventually, some parents told me, friends and family stopped coming over for dinner. \u201cYou could tell they didn\u2019t want to be around it,\u201d said Stacia Kareh, a parent in Nashville. As a newborn, her son had been put on a feeding tube; at 5, he suddenly stopped eating the short list of foods he had once tolerated. Mealtimes became \u201ca fight to get every calorie into him. It was begging, pleading,\u201d she said. Even after undergoing treatment, her son, now 7, still negotiates every bite. \u201cHe argues with us, like, \u2018Well, if I eat this, how long will that give me to live?\u2019\u201d<\/p>\n
To an outsider, these cases may look like choosiness or defiance, but \u201c\u2009\u2018picky eating\u2019 undermines how severe this is,\u201d said Sharp, the director at Children\u2019s Healthcare of Atlanta. \u201cWe\u2019re seeing kids with autism who only eat two foods. These kids develop rickets; they develop scurvy.\u201d In extremely rare instances, the malnutrition can become fatal. Lucy Morrison, a mother in the U.K., told me about her son, Alfie, who had nonspeaking autism and restricted his eating for his entire life, primarily consuming baby crackers and porridge. In 2021, Alfie fell off a small bench at school and began limping, then grew increasingly lethargic. A week later, he had stopped eating anything, but the pediatrician told her, \u201cHe\u2019s acting like that because of his autism.\u201d A few days later, Alfie, 7, went into cardiac arrest and died. Only two years later was it determined that the malnutrition brought about by ARFID had caused his heart to stop. Lucy said the first person to tell her the diagnosis was the coroner tasked with investigating his death.<\/p>\n
This past winter, I met a woman named Grace and her son for breakfast in Manhattan. Grace ordered soup and a coffee, but her son, then 10, had already eaten his standard morning meal of glazed doughnuts from the Dunkin\u2019 near their home; he says he can tell when a doughnut is made at other locations. The boy, who has been diagnosed with ARFID, ADHD, and generalized anxiety disorder, was polite and matter-of-fact. He described how he lives with an almost constant, vague stomach discomfort that makes it hard to tell when he\u2019s hungry. It\u2019s exacerbated by the appetite-suppressing effects of the Ritalin he takes for ADHD and the constipation from his diet of processed foods.<\/p>\n
Until he was 3, Grace told me, her son ate everything from mashed vegetables to pea soup to sausages. But when he started day care, he refused to eat the provided lunches, holding out even as the teachers encouraged him with increasing desperation. Grace, who was working full time, started giving him packaged snacks on the drive home. Her son developed a strong affinity for them and began rejecting most other food \u2014 a behavior that worsened over time. Now, while the rest of the family has dinner, he eats his own meal of McDonald\u2019s chicken nuggets and French fries with Sprite. At school, the smells in the lunchroom are sensory overload, so his safe foods are kept in the nurse\u2019s office: gummy bears and sour gummy worms, Cheez-Its, Oreos, and Pirate\u2019s Booty. He takes multivitamins to supplement nutrients. Grace has two degrees, one in psychology, and she knows how this sounds. Still, she said, what else can she do? Her son doesn\u2019t have hunger cues, and without his preferred foods, he simply won\u2019t eat.<\/p>\n
ARFID\u2019s emergence as a diagnosis coincided with a seismic shift in parenting culture. \u201cWe know so much more about the brain now than we did 30 to 40 years ago, and we\u2019re raising our kids with a better understanding of how their brain develops, including their emotional-regulation skills and sensory processing,\u201d said Kertesz-Briest, the clinical psychologist. Behaviors that past generations of parents might have viewed as \u201cbad\u201d and warranting punishment are today apprehended through a more compassionate lens. One woman I spoke with, who has a son with ARFID and generalized anxiety disorder, often thinks of the way her parents got her sister to eat when they were young. Her sister was picky, and their parents did \u201cthe same thing any parent in the \u201980s did, which was to say, \u2018Sit here and finish your food, and you can\u2019t leave the table until you do.\u2019\u201d It would be a disaster with her son, she said. Studies show that parents\u2019 forcing children to eat at mealtime can make them want to eat even less, and, for her son, \u201cit would turn into a panic attack,\u201d the mother said. \u201cHe would cry, he would vomit. It wouldn\u2019t be about food anymore. It would be about torturing someone who isn\u2019t trying to perpetrate a power struggle. He\u2019s just refusing the food because he\u2019s terrified of it.\u201d<\/p>\n
When a child won\u2019t eat, it\u2019s a natural reflex to find something \u2014 anything \u2014 that might give them sustenance. Many parents dealing with ARFID learn to anticipate their child\u2019s reactions before a meal, trying to solve for every outcome: What can I serve that my child won\u2019t refuse? What if she eats nothing? Will it turn into a fight? Parents of children with a sensory aversion to food describe going to great lengths to remove, say, a brown spot from a French fry or to mix pancake batter in just the right ratio and pour it into the only acceptable shape, all to provide the consistency that might make their child want to eat.<\/p>\n
But while applying pressure can be counterproductive, specialists say that accommodating a child\u2019s preferences entirely can lead to more rigidity, too. When ARFID appears with anxiety, the cycle, Kertesz-Briest said, goes like this: \u201cWe experience the fear stimulus, we avoid it, we feel better. We face it again, we avoid it, we feel better. The more we avoid, the scarier something becomes. In the case of ARFID, even avoiding one bite of one food one time can be what knocks it off the safe-food list.\u201d She continues, \u201cFor parents who have kids with anxiety disorders, sometimes unknowingly we collude with the anxiety or we collude with the ARFID. The parent thinks, I know my kid will eat this one food, so I\u2019m giving only this food to them, or I don\u2019t want my kid to feel scared or uncomfortable, so I remove the discomfort right away. It\u2019s a hard cycle to break out of.\u201d<\/p>\n
Parents don\u2019t cause ARFID, but in their hypervigilance, their pursuit to help or protect their children, they can sometimes entrench it. \u201cThis is a very anxious parenting generation,\u201d Zakreski, the clinical psychologist, told me. \u201cYou could make the argument that we are too attuned to our kids, that we are not really willing to challenge them in ways previous generations were.\u201d (He\u2019s not immune to this either, he admits \u2014 sometimes, he makes pasta three different ways for the same meal to appease his two children.) The modern food landscape doesn\u2019t help. Restaurants, no matter the cuisine, attract parents with kids\u2019 menus: a reliable list of mac \u2019n\u2019 cheese, pizza, hot dogs, and chicken fingers. At the grocery store, entire shelves are dedicated to packaged snacks created specifically for children. \u201cIf you were somebody who had a tough time with milk and you were growing up in the \u201980s, you were on your own,\u201d said Zakreski. \u201cNow, it\u2019s like, \u2018Do you want the oat milk? The almond milk?\u2019\u201d For some children, he said, more options increases the risk of ARFID.<\/p>\n
Meanwhile, doctors are increasingly aware of how other family dynamics \u2014 especially parents\u2019 stress about their child not eating \u2014 can reinforce the disorder. During mealtimes, \u201cthe kids feel the parent\u2019s anxiety, even if the parent is trying to contain it,\u201d said Wendy Nash Moyal, a psychiatrist who specializes in autism, OCD, ADHD, anxiety, and learning disorders. \u201cSo the child with ARFID experiences whole-body tension \u2014 the feeling that their throat is going to close up more. The child\u2019s anxiety and the parent\u2019s anxiety, both things are going to exacerbate the ARFID symptoms.\u201d<\/p>\n
Sharp of Children\u2019s Healthcare of Atlanta has also observed how a parent\u2019s trepidation around their child\u2019s eating can \u201cspill over\u201d onto that child. Two years ago, he saw a young patient with a severe food allergy. The boy had long restricted his diet, but after getting a stomach bug, he stopped eating his safe foods altogether. \u201cThe dad said, \u2018I think I created this,\u2019\u201d Sharp recalled. Long before the stomach bug, his son had gone into anaphylaxis, and the father, terrified, became extremely vigilant about the foods his son ate. Now, he worried his vigilance might have contributed to his son\u2019s anxiety. \u201cAnd I said, \u2018It\u2019s not your fault. You didn\u2019t know what to do, and this is scary.\u2019\u201d<\/p>\n
At the restaurant, Grace acknowledged that she and her husband \u201cdo accommodate. We bend more than I guess a regular parent would.\u201d Still, her pediatric endocrinologist is more concerned with her son\u2019s growth than with his nutrition; blood tests show the boy has started puberty and, already short for his age, has grown only an inch in the past year \u2014 half of the minimum expected. \u201cShe\u2019s panicking,\u201d Grace said. For the better part of seven years, she has been taking her son from specialist to specialist without much improvement. She suspects there are people who blame her, but she also knows that while her son may not be eating a healthy, balanced diet, he\u2019s not in a hospital, not on a feeding tube, and not relying on shakes for sustenance. \u201cSo if it\u2019s just me feeding him lots of junk food, I don\u2019t care.\u201d<\/p>\n
In March 2023, Amelia was ready to be discharged from the eating-disorder clinic. She still wouldn\u2019t swallow anything, including water, so nurses met with Mark and Laura and trained them in how to use the feeding-tube equipment. Amelia\u2019s psychiatrist prescribed an antipsychotic medication that balances dopamine and serotonin in the brain, along with an anti-anxiety medication. Drugs are not always used with ARFID patients, but in some cases, they can address a separate issue, like severe anxiety, that may be adding to the patient\u2019s restrictive eating. Laura is a former pharmacist who is \u201cvery anti-drug\u201d \u2014 the idea of putting their already small and weak daughter on psychiatric medication with potential side effects was scary, but ultimately she and Mark decided it was necessary.<\/p>\n
Amelia was 40 pounds when she walked into school for the first time in a month. She was allowed to keep a small trash can next to her desk to spit in, and Mark would come in at lunchtime to give her food, fluids, and medication. At home, she continued the treatments she had begun in the hospital. With Kertesz-Briest, who is her psychologist, Amelia underwent cognitive behavioral therapy, a common treatment for other eating disorders that is currently one of the most promising interventions for ARFID. In CBT, a patient identifies their fears around eating, is exposed to different foods and tested on their negative predictions, and learns coping skills for periods of distress. She also attended regular feeding-therapy sessions, which, depending on the patient, can focus on the mechanics of chewing and swallowing or the sensory experience of eating \u2014 the way different foods smell or feel. In one session, Amelia cut pictures of food from magazines and organized them from easiest to swallow to most difficult to swallow, then made them into a game board.<\/p>\n
Laura and Mark participated in the family- and feeding-therapy sessions too. They learned to serve small portions so as not to overwhelm her, to tell her she was safe when she struggled to eat rather than to pressure her, and to allow some distractions, including an iPad, which can be a helpful diversion for ARFID patients even if it goes against today\u2019s no-screens mantra. They learned to adjust their language around eating, like coming up with a code word for dinner to alleviate some of the negative associations.<\/p>\n
Separately, Laura and Mark worked on their own reactivity to avoid the familiar spiral of Amelia refusing to eat, her parents getting frustrated, and everyone becoming upset. Laura had been devastated to learn that, several months earlier, Amelia hadn\u2019t wanted to leave the hospital \u2014 she felt scared at home with all the yelling. Laura, for her part, had begun to feel as though she and Mark had lost their ability to communicate; she had been thinking about divorce. At Mark\u2019s suggestion, they started couples counseling. For the first time, Laura took medication for her own anxiety.<\/p>\n
Most families turn to some combination of CBT and feeding therapy to help a child with ARFID, but because the diagnosis is relatively new, researchers are still exploring ways to treat it. In a recent trial for ARFID patients ages 5 to 9, Nancy Zucker, a clinical psychologist and director of the Duke Center for Eating Disorders, focused on acknowledging and repairing the trauma experienced by both the child and the parent as a result of the child not eating in order to ease their anxiety around mealtimes. For one of the activities, she had them cook together but not with the aim of taking a bite. With each positive experience, the child was instructed to put a marble in a jar. \u201cIt\u2019s like the kid\u2019s giving the parent a sticker,\u201d Zucker said.<\/p>\n
Some weeks, Amelia showed improvement, taking the smallest sip of water. Then she would regress and refuse even that. In therapy, she was learning coping mechanisms, breathing exercises, and new vocabulary to articulate how she was feeling. But she wasn\u2019t putting them into practice in a way that resulted in the ultimate goal of eating or drinking. Mark and Laura, increasingly desperate and exhausted, started to make plans to readmit Amelia into an inpatient facility, and in August, a spot opened up at a highly regarded eating-disorder clinic. By then, Amelia\u2019s psychiatrist had recommended weaning her off her existing medications and putting her on an SSRI. After more weeks of no improvement, he gradually increased the dosage until it was double.<\/p>\n
Before they broke the news to Amelia that she would be going back to the hospital instead of to school, they decided to go on a hike with friends. It was hot, and the adults carried water bottles as they made their way up the trail. Amelia\u2019s hydration still came from her feeding tube, taped to the small patch of skin below her nose. As they walked, Mark heard a small voice: \u201cDad, I\u2019m thirsty.\u201d<\/p>\n
He looked around, checking that it hadn\u2019t been one of their friends\u2019 children. It was Amelia. \u201cOh, do you want some water?\u201d he responded, trying to sound nonchalant. He handed her the bottle and watched in disbelief as she took one sip, then another, then another. The next day, they went to a noodle shop. Laura gave her a half-bowl. As Amelia slurped down her food, Mark and Laura squeezed each other\u2019s hands beneath the table.<\/p>\n
Doctors warned them not to get too excited. ARFID can follow young people into adulthood, and regressions are common. Something as simple as a change in packaging can cause a child with ARFID to suddenly distrust a food they\u2019ve been eating. Parents worry about their kid catching a stomach bug or having strep throat, which may set them back. But it was hard for Mark and Laura not to give in to optimism. They called the hospital and canceled Amelia\u2019s upcoming stay and contacted the school to let them know she would be starting third grade. One week later, after Amelia kept asking when she could remove the feeding tube, Mark took it out. When they looked at her reflection in the bathroom mirror, they both cried.<\/p>\n
In his view, the SSRI calmed Amelia\u2019s anxiety to the point where she was finally able to use the skills she had been learning for months in therapy. Nearly two years later, she\u2019s still taking the medication, but her doctor has lowered the dosage. Mark is determined to get her off it altogether; one side effect of the higher SSRI dose was that Amelia started wetting her bed.<\/p>\n
Amelia eats more now \u2014 pasta, fruits, and even beef, pork, and fish \u2014 but she still has anxiety. They have stopped the feeding therapy, wanting to let her go back to just being a kid. The family is still uncovering the full extent of what they\u2019ve been through; last year, Amelia stiffened when the Kylie Minogue track \u201cPadam Padam\u201d came on \u2014 it was one of the songs on the radio during her months in treatment. The word choking is banned from their household. Amelia is happy at a new camp this summer. She loves anime and playing Roblox and dancing to K-pop. But Mark hasn\u2019t shaken the fear that this isn\u2019t the end. \u201cEven talking about this now,\u201d he said hesitantly, \u201cI don\u2019t want to jinx it.\u201d<\/p>\n
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