What is ARFID?
An Overview of the Often-Missed Eating Disorder
It has been seven years since the 5th edition of the diagnostic and statistical manual of mental disorders (DSM) was published. Yet, the diagnosis of Avoidant Restrictive Food Intake Disorder (ARFID) remains widely unknown, and often remains undiagnosed. This then leads to delaying treatment. In fact, it was a child with ARFID that came to my office years ago who was the motivating factor for me to create a group practice that includes a pediatric Occupational Therapist. This child had met one challenge after another trying to receive the proper treatment.
Avoidant Restrictive Food Intake Disorder (ARFID) replaced the earlier diagnosis of “Selective Eating Disorder” in the DSM-IV. ARFID is sometimes referred to as “Extreme Picky Eating” and though, largely associated with children, and more common in boys, it can manifest or continue if untreated in adulthood in all genders. There are often associated conditions such as Sensory Processing Disorder, Autism Spectrum Disorder, and Anxiety Disorders including Obsessive Compulsive Disorder. The common assumption is that every eating disorder has a body image component, which is not the case. ARFID is one such example. I knew even before the diagnosis officially came into print, that certain clients with restrictive disorders presented differently. I think back on several clients we treated under “Anorexia Nervosa” that actually wanted to gain weight and were willing to drink soda and eat desserts in order to do so.
Diagnostic Criteria for ARFID (Avoidant Restrictive Food Intake Disorder) taken from the DSM-5
A. An eating or feeding disturbance (e.g., apparent lack of interest in eating of food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:
Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
Significant nutritional deficiency.
Dependence on enteral feeding or oral nutritional supplements.
Marked interference with psychosocial functioning.
B. The disturbance not better explained by lack of available food or by an associated culturally sanctioned practice.
C. The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.
D. The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention
There appear to be different presentations of ARFID. These may include Avoidant, Aversion, and Restrictive type.
Aversive
Aversive includes food refusal related to adverse or fear-based experiences. This can happen in childhood or in adulthood, for example, a choking incident creating fear of swallowing food. We also often see a history of illness that caused nausea and vomiting, which then can create a phobia of becoming sick again. In fact, the fear of vomiting is rather common in ARFID. If someone is more prone to anxiety and experienced illness, the fear of food triggering illness makes a lot of sense.
Avoidant
With Avoidant type of ARFID, individuals accept only a limited diet in relation to sensory features. These sensory aversions may show up in other areas as well and sensory processing disorder should be ruled out. Some of the folks are “super tasters” and may experience sweetness or bitterness to an exaggerated, uncomfortable degree. They tend to prefer bland, separated foods with easy-to-manage textures. There may be neophobia associated with this group as well, due to fear of how something is going to taste or feel in their mouth.
Restrictive
In Restrictive types, there is low interest in eating, low appetite and generally inadequate food consumption. This may include distractibility and forgetfulness when it comes to eating, and actually a “wishing they could eat more”. I have had several clients tell me they wish they could just be “plugged in the wall” like a battery to get the energy they needed rather than having to eat food because eating feels like such a chore.
It isn’t unusual to have a “mixed type” of diagnosis, where the features co-exist. For example, a child might present with restrictive tendencies as well as avoidant or aversive symptoms.
Finally, ARFID “Plus” can develop, in which individuals begin to present with features of Anorexia Nervosa that were not previously present such as concerns about body weight and size, fear of weight gain, negativity about fatness, and a preference for lower calorie foods.
When to be Concerned
How our children eat is often a reflection of how they approach other things in life. We all have different temperaments. The adventurous, impulsive child will also likely try a variety of foods, while the more sensitive, cautious child will likely express some neophobia and desire to stick to foods they know well. This is not in itself a problem. Too much pressure on the cautious child to eat like their adventurous sibling can create more resistance to eating. In fact, the pressure to eat a certain way, enough, and “healthy” may further increase resistance. A calm, fun food environment where the parent’s anxiety remains in check goes a lot further in helping picky kiddos eat. I should know, I have one! If your child is eating over 20 different foods, is on target with their own growth curve, consumes at least some fruits or vegetables, three servings of dairy products or other calcium rich food sources daily and are able to try new foods, they may be just fine. However, some signs that treatment may be necessary include your child’s intake consisting of less than 20 foods, items are very brand specific, your child exhibits high anxiety with introduction of new foods, will not consume food even when hungry, and changes on their own growth curve. It isn’t inherently “bad” to be in a higher or lower percentile on the growth chart. We are all built differently, thank goodness. However, when a child deviates drastically from their normal curve, that’s when more exploration is warranted. For example, if the child historically rested closer to the 25th percentile for weight but then suddenly dropped to the 5th, that may be a sign for concern.
Tips and Treatment
I want to reiterate how important it is to not create more stress for our sensitive, picky children. Let meals be enjoyable and pressure-free. Pressure fuels anxiety, and anxiety is fueled by avoidance. That means not only remaining aware of your own expectations and keeping them in check but also remaining mindful and attempt to meet your child where they are at in that moment. A step towards understanding your child’s cues and needs can be taken by slowing down to put yourself in your child’s shoes. Whether serving family style or pre-plating, offer at least a couple foods at each meal that your child prefers. For my son, that usually means some type of buttered bread with whole milk.
The goal for many families is often to have their loved one be able to join them for family meals and social events that are important to them. Eating Brussels sprouts may not be as important as being able to have pizza with their friends or join Thanksgiving dinner without panic. In nutrition sessions we first create a meal plan based on tolerated, preferred foods in amounts that cover their energy and macronutrient needs. Supplements may initially be needed, and that is okay. The first step is to ensure growth and development are supported, and malnutrition is resolved. This might look like a lot of quesadillas, grilled cheese sandwiches, chicken nuggets, crackers, and juices. Parents are often concerned about the lack of “balance” and “added sugars”. Just getting those calories in to support physical function is more important. Getting hung up on what is healthy versus what is not only prolongs malnutrition.
The next step is creating an exposure hierarchy. This may look like a list of “green”, “yellow”, and “red” foods. The green foods are comfortable to the client, the yellow foods bring up some fear, and the red foods feel impossible to consume. Foods that were previously accepted might be reintroduced first. We start slow and build on what works. This may include something called food chaining; building on what is already working by altering the tolerated foods ever so slightly. Whether introducing a new food for the first time, or taking a food chaining approach, small amount is key. Start with no more than 1 tablespoon of “red” or even “yellow” foods. This mindful approach is a helpful and respectful way to guide your child to build familiarity with a new food and learn comfort through what they perceive as an uncomfortable experience. Sometimes just having a food on the plate without touching it is progress. Following their cues, we move on to explore it with our hands. Once the child shows comfort and confidence with touch, we then take a step forward by bringing it to the lips without the pressure of putting in in the mouth or eating it. Feeling empowered and successful in taking small steps can feel reassuring and keep our clients feeling safe. This process can be painfully slow leading parents to throw in the towel. Another reason to involve outside support such as through occupational therapy. Exposure to new foods is important and as we all know, facing what is frightening, rather than avoiding it, leads to overcoming our fears. Persistent exposure and exploration over time is necessary to make lasting changes in managing ARFID. Patience is a vital ingredient.
Exposure however is not enough. It is key to address the body and brain functioning, cognition, emotions, and sensory processing. This includes cognitive behavioral therapy, and incorporation of sensory strategies which may include different fidget toys, weighted blankets, and breathing exercises. These are the tools helpful for developing coping skills that are necessary to deal with the predictable anxiety that will arise.
Your child’s journey to become familiar with, explore, and accept new foods begins with a thorough evaluation, so to rule out any physiological challenges that might make eating more difficult. An evaluation that includes an assessment of posture, motor skills (yep, gross motor and fine motor skills are important for eating too), oral motor skills, screen for tongue and lip tie, and a swallowing screen. Should swallow concerns be found, your child will be referred to a speech therapist or occupational therapist specializing in the diagnosis and treatment of swallowing disorders.
Many eating disorder programs now offer help for ARFID but there are few that are ARFID-specific in the country. In my group practice, we are happy to have our pediatric Occupational Therapist Amy Cresswell join us in response to the treatment need we have found exists in our community. For those struggling with ARFID, know you are not alone, and more help is on the way!
Resources:
National Eating Disorder Association (NEDA): https://www.nationaleatingdisorders.org/learn/by-eating-disorder/arfid
“Helping Your Child with Extreme Picky Eating” by Katja Rowell, MD and Jenny McGlothlin MS CCC-SLP
“Cognitive-Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder: Children, Adolescents, and Adults” by Jennifer J. Thomas and Kamryn T. Eddy
“Conquer Picky Eating for Teens and Adults”: Activities and Strategies for Selective Eaters by Jenny McGlothlin MS CCC-SLP
“Anxious Eaters Anxious Mealtimes: Practical and Compassionate Strategies for Mealtime Peace” by Marsha Dunn Klein OTR/L Med FAOTA