Parents Face Harrowing Wait for Diagnosis as Mysterious eating Disorder, ARFID, Remains Largely Unkown
London, UK – A growing number of children are suffering from a little-understood eating disorder called Avoidant/Restrictive Food Intake Disorder (ARFID), leaving families battling for diagnosis and treatment while their children’s health deteriorates. Despite potentially severe consequences, ARFID remains largely unknown amongst general practitioners, leading to frustrating delays in care, a MailOnline examination reveals.
ARFID differs from anorexia nervosa. It’s not driven by body image concerns, but by a lack of interest in eating, sensory issues with food, or a fear of negative consequences like choking or vomiting. This can lead to severe nutritional deficiencies and,in extreme cases,the need for feeding tubes.
Joanne Read experienced this firsthand with her daughter, ethel. She recounts a “worst week of her life” as nurses inadvertently exacerbated Ethel’s limited diet by presenting new foods alongside her “safe” options - a practice known to discourage acceptance of new foods. Despite her concerns,the paediatrician initially dismissed ARFID,only mentioning a specialist existed “almost in passing.” Ethel was eventually diagnosed after a single appointment with that specialist, who also suggested the possibility of Autism Spectrum Disorder (ASD), aligning with a 2023 Harvard study indicating ARFID may be present in over half of those with ASD.
Similarly, Michelle jacques’ son, Arlo, endured a lengthy struggle for recognition of his condition. After finally securing a private diagnosis at the Birmingham Food Refusal Service in May 2023, the local health trust withdrew support, deeming Arlo too young for Child and Adolescent Mental Health Services (CAMHS).
The lack of awareness and research into ARFID leaves treatment options limited. Cognitive behavioural Therapy (CBT) can be effective for older children, while play therapy and gentle food exposure are frequently enough used for younger ones. Some patients require anxiety medication.
Arlo’s condition worsened after a bout of appendicitis last summer, leading him to refuse solid foods entirely, subsisting only on milk and supplement shakes. After an eleven-month wait, michelle finally secured an appointment with the complex feeding team at the Evelina London Children’s Hospital in April 2024. Doctors recommended a feeding tube to ensure Arlo receives adequate nutrition.
Remarkably, upon learning of the potential need for a tube, Arlo told his parents, “I’ll try to eat.” He has as begun snacking on Skips and Pom Bear crisps, prompting the hospital to delay the tube fitting by six months.
“I do think if his Arfid had been picked up sooner, we may not be on the way to a feeding tube,” Michelle says. “I’m just hoping there’s a miracle and he can eat enough to potentially not have one.”
The stories highlight a critical gap in healthcare provision. Families are left navigating a complex system, frequently enough facing disbelief and delays, while their children’s health hangs in the balance.
For more information and support, visit beateatingdisorders.org.uk.
Michelle Jacques and Joanne Read co-host the podcast 3 Mums,1 Mission,available on Spotify.
