The Little Birds Blog

This blog is written and edited by Julie Johnson, founder of The Little Birds. The information here reflects Julie’s personal and professional thoughts and opinions on parenting and educating children with special needs. Any health-related questions should be directed to your child’s pediatrician.

Avoidant/Restrictive Food Intake Disorder (ARFID) is an eating disorder that experts know relatively little about. It is a real diagnosis in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) right alongside anorexia and bulimia. ARFID involves a food repertoire that is so limited that it causes growth/medical issues but does not have to do with body image (unlike anorexia). It’s theorized that there are several different root causes for ARFID, including sensory sensitivities that make trying new foods extremely aversive or a general lack of interest in food, which may be due to reduced activity in appetite-regulating areas of the brain. Some individuals have a more sudden onset of ARFID due to a specific trauma or medical issue such as a choking incident or other medical procedure. ARFID often co-occurs with other mental health conditions such as autism, obsessive-compulsive disorder, anxiety disorders and ADHD. 

For my son, it’s like he’s afraid to try new foods. In fact, he’s afraid to try almost all foods. He has always had a small number of “safe foods”- always from one brand only and usually only in certain environmental conditions. For example, for over a year, his only safe food (other than Pediasure, our saving grace) was the bottom part of a hamburger bun from McDonalds. Never the top, and only if it was at a perfect temperature right out of the bag. If I brought a hamburger bun home for him (and he wasn’t with me when I bought it) he would not eat it. He has never eaten fruits, vegetables and barely any meat. He does not eat treats, does not like chicken nuggets, mac and cheese, candy or ice cream. 

Only other people who truly understand ARFID and have experienced it themselves or with their children will understand how normal this all actually is in the ARFID community. I have had dozens of conversations about ARFID since my son was first diagnosed in 2023. Before that, I knew nothing about this condition, even in all my years working with children with special needs. I have been amazed with how many families I have met online that have children with profiles just like my son. This is way beyond picky eating- this is the type of eating disorder that very frequently causes children to have g-tubes for nutrition. These individuals simply will not eat when they get hungry enough- though this type of unsolicited advice will be offered to ARFID families again and again. 

We are extremely fortunate to have families and friends who are supportive and understanding of our son’s ARFID. Still, it’s hard not to feel like a failure as a parent when your child won’t eat. It is a biological drive for parents to feed their children and keep them safe. The inability to do that is devastating. I learned long ago not to try to compare my children to other children- every child grows and develops on their own timeline. But discussion about feeding and mealtimes has been difficult and triggering for me, especially with all the current rhetoric around artificial dyes and specific diets (such as gluten-free) that may benefit kids both physically and behaviorally. I don’t judge families for questioning the foods they give their kids and investigating ingredients. The truth is I’m jealous of parents for even having a choice about what they give their kids. If I could give my son healthier foods, I certainly would. 

There’s a lot to share about our journey with ARFID. If you’ve never heard of the diagnosis before and something about this is sounding familiar in terms of your own child, I encourage you to talk to your pediatrician. Unfortunately, the treatment for ARFID is very poorly researched and understood. If you talk to people in the ARFID community, including adults who have ARFID, they recommend taking the pressure off eating and food altogether. They say that putting contingencies on food (e.g., “If you finish your broccoli, you can have a cupcake) is ineffective and will, in many cases, only worsen the ARFID symptoms by creating more stress and anxiety around eating. They say to try to teach kids that there are no “good” or “bad” foods, only nourishment, and to allow kids to graze throughout the day on anything they will tolerate. 

We have tried to mostly use this approach in our household. If our son wants chocolate for breakfast, we are excited that he wants anything at all. If he eats 3 plain white bread hamburger buns in a row for dinner, we are ecstatic. As you can imagine, this strategy is not without downsides, especially when you have other children who do not have ARFID and would also love to eat chocolate for breakfast. We don’t have it all figured out- far from it- but we do try to take the pressure off food and eating and normalize that some people eat pasta, chicken and broccoli for dinner and some people eat plain hamburger buns for dinner, and both are okay. 

We have done feeding therapy on and off for years, primarily through occupational therapists. The therapy is typically based on the SOS (Sequential-Oral-Sensory) approach which is child-led, play-based therapy that uses gradually changing expectations to try new foods (e.g., first let a food sit on your plate, then touch it, then smell it, then kiss it….etc. ). Many parents report this type of therapy as being greatly effective in increasing their children’s food repertoires, and others report no improvement at all. 

There are some medications that can help with the treatment of ARFID. For some individuals, SSRI’s like Fluoxetine or Sertraline may improve eating, especially if the eating disorder is related to anxiety. There are also appetite stimulants such as Cyproheptadine and Mirtzapaine which may help improve symptoms (although they are not FDA-approved for treating ARFID). It is also regular practice for children with ARFID symptoms to undergo evaluation by various medical professionals to rule out any underlying medical factors, such as Eosinophilic Esophagitis (EOE)- a specific disorder of the esophagus. 

We recently tried a new program which takes a more therapeutic approach in terms of utilizing CBT (cognitive behavioral therapy) and exposure therapies to treat eating disorders. I do think that this type of program, which aims to reduce food anxiety through reframing thoughts about food, exposure to novel foods and gentle contingencies around food consumption (e.g., positive reinforcement for trying new foods) will eventually be a better approach for my son. However, this type of program assumes a certain level of cognitive understanding that my son, at 5, may not be fully ready for. This program was also entirely virtual, which ended up not being a good fit for a very young child.  

There is a lot of chatter in the ARFID community about hypnotherapy as a potential treatment. Will I try it as soon as my child is old enough? Absolutely. We will try anything to help him. 

For now, we will be buying Pediasure in bulk and driving through Dunkin Donuts every day  for a plain, uncut, untoasted bagel.

If any of the information on this website is incorrect or if there are additional resources you would like The Little Birds, LLC to be aware of, please contact Julie.