ARFID: expert advice to help parents support recovery

Avoidant restrictive food intake disorder (ARFID) is an eating disorder that features highly selective eating patterns. The major risk for kids with ARFID is not getting enough nutrients and becoming weight suppressed, which can interfere with growth and overall health. Getting expert advice when a child has ARFID can help parents understand what their child is going through and support recovery from this eating disorder.

ARFID is strongly associated with kids who are highly sensitive. This sensitivity often includes being sensitive to food flavor (taste and smell) or texture. But eating is a 5-senses experience, so a child may also be sensitive to the way food looks and even the way it sounds and the sounds of others eating. Beyond the 5 senses, kids who are highly sensitive may also be very tuned into the emotional experience of eating and how their parents and others around them feel when eating. 

ARFID is typically seen beginning at a young age. It is strongly associated with people who have ADHD and autism. Over time, ARFID can cascade into another eating disorder such as anorexia, bulimia, or binge eating disorder. It is typically characterized by high levels of anxiety about food and eating. Behaviorally, someone with ARFID will refuse to eat foods that make them feel anxious. Without intervention, the list of “safe foods” can dwindle to just a handful of options. 

Many parents feel overwhelmed when their child has ARFID, but there are very good treatments available, and there is a lot that parents can do to help. 

I interviewed two dietitians who specialize in treating ARFID, Rebecca H. Thomas RD, LDN, and Stefanie Ginsburg, RD, CEDS-S. They are members of the ARFID Collaborative, a group of clinicians dedicated to increasing ARFID awareness, education opportunities, training options, and treatment access. 

Here is their expert advice for parents who want to support their child’s recovery from ARFID: 

How do you explain ARFID to parents?

When we paint the picture for parents of what it is like to have ARFID, we ask them to think of some of their fears or things they dread doing. This may be flying, waiting at the DMV, a fear of heights, or maybe it’s creepy crawly things, like snakes or spiders. 

Then we ask them to imagine having to engage with that fear or disliked thing, at least 3 times a day! All the while, enduring pressure and shame from an authority figure (maybe a boss or professor) for not being able to manage this easily. 

Think about how doing this on a regular basis might affect your motivation to participate in daily activities that involve these fears. This can be what it is like for children who have ARFID.

What is the hardest part of treating ARFID from your perspective? 

There are so many obstacles within the treatment for ARFID. We would have to say the hardest part is helping parents and clients stay motivated to continue care. Progress with food acceptance and increasing dietary variety can take a long time and requires consistency and endurance. 

Oftentimes parents are overwhelmed with their child’s struggle and with the amount of work it takes them to carry over the treatments from sessions into daily life. It can feel disheartening when you’ve spent months working on one food, and they are still only taking one bite. We try our best to let them know that things DO get better and easier and part of our role is to cheerlead even the smallest of wins and successes.

What treatment do you recommend for ARFID? 

We recommend a hybrid-individualized approach that incorporates CBT-AR, Satter’s Division of Responsibility of Feeding, FBT-AR, food chaining, and food exposure therapy. 

We have seen the most success with children when families are re-feeding from home and are being consistent providing the food we are working on at home between sessions. Parental commitment is an essential part of treatment.

How can parents be helpful in treating ARFID? 

Presence and consistency. As we mentioned before, treatment is a 50/50 effort. Providers can give you guidance, coaching and resources, but ultimately, it is the caregivers showing up everyday to say: “I know this is hard for you, but we can do hard things. Let’s figure out how to get through this meal/food together” that is going to be the most helpful.  

It can also be helpful to remind them that we do not have to “like” a food in order to eat it. We think there is a fair amount of unnecessary pressure to like all the food you eat. A lot of our normalized eating consists of eating and drinking items that can be tolerated.

How do you measure recovery/What does recovery look like?

Recovery from ARFID involves the following key elements:

1. Ability to maintain nutrition status
2. Preventing unwarranted weight fluctuations
3. Being free of nutritional deficiencies
4. Having enough energy to do daily activities
5. Staying on a regular growth trajectory
6. Managing daily eating with minimal distress
7. Dietary variety

The term recovery when it comes to ARFID is typically a life journey. It involves both acclimating to and building resilience for food-related anxieties or indifferences. One degree of change helps pave the way for ongoing progress in recovery.

What resources/books do you recommend to parents who have kids with ARFID? 

• How to Nourish Your Child Through an Eating Disorder by Casey Crosbie RD, CSSD  Wendy Sterling MS, RD, CSSD.  
• Helping Your Child with Extremely Picky Eating by Katja Rowell, MD  Jenny McGlothlin MS, SLP  
• Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers by Rachel Bryant-Waugh  
• Raising Adventurous Eaters: Practical Ways to Overcome Picky Eating and Food Sensory Sensitivities by Lara Dato MS OTR/L, SC-FES  
• Food Refusal and Avoidant Eating in Children, Including Those with Autism Spectrum Conditions. A Practical Guide for Parents and Professionals Book by Elizabeth Shea and Gillian Harris.  
• The Picky Eater’s Recovery Book by Dr. Jennifer Thomas (For those that have teens or young adults with ARFID)

Regardless of the type of eating disorder your child has, including ARFID, expert advice can help you support your child’s recovery.

See Our Parent’s Guide To The Different Types Of Eating Disorders