Eating disorders are complex mental and physical illnesses that are incredibly misunderstood. Sometimes we focus too much on the physical side - the weight changes, lab values, and wonky hormones - without giving enough attention to the mental side of things. Other times we get preoccupied with the anxiety, depression, and black and white thinking without giving enough support to a person’s physical risks. In the worst of situations, a person’s eating disorder might not be taken seriously at all if they don’t look a certain way or if a person’s behaviors are well masked within the current diet culture norms. As we navigate each eating disorder, I will explain the etiology, the signs and symptoms, the treatment, and the goals for recovery. If you have any questions or additional considerations, please feel free to leave a comment!
Etiology
There are three subtypes to Avoidant Restrictive Feeding & Intake Disorder or ARFID: sensory sensitivity, lack of interest in food/eating, and fear of aversive consequences. Each subtype describes a different experience that can lead to ARFID behaviors and symptoms. No matter the “cause” or lack of cause, ARFID is typically seen to limit food variety and intake leading to possible malnutrition and side effects related to that.
Sensory Sensitivity
People who have high sensory sensitivity find many experiences to be highly uncomfortable and even sometimes unbearable. They notice the way that things feel when many others might not - a scratchy sweater, a too tight sock, a clip pulling their hair the wrong way, or a slimy texture in their food. This can make eating incredibly complicated since anything from a crunchy piece in an otherwise soft food to a too-ripe strawberry can be an uncomfortable sensory experience. Comfortable foods for someone with a sensory sensitivity are typically cohesive in texture, are reliably the same no matter when you eat them, and don’t contain surprise, unwanted sensations. Taste preferences can be specific to each person oftentimes with intense flavors being disliked.
Fear of Aversive Consequences
Many people with this subtype of ARFID have an initiating event that starts the eating patterns we know as an eating disorder. An experience of choking or vomiting after eating food early in life (or sometimes later in life!) is often the precipitating event for seeking comfort and safety with limited food choices. Future experiences with food can feel scary and precautions are taken to prevent another adverse event, even if risk of re-experiencing the adverse event are low.
Lack of Interest in Food/Eating
Ideally, our bodies are giving us signs and signals to eat throughout the day with a variety of different stimuli - our mouths watering, stomachs growling, thoughts of food, or cravings. For a person who is pre-disposed to ARFID, they may not get many, if any, of these cues or may struggle to notice the experience of hunger in their body. Humans typically do things that feel good to them, so if food never sounds good and they don’t feel better when eating it can make it difficult to be motivated to eat. Autism and ADHD can both impact our interoceptive awareness - or our awareness of what is going on inside our body - which can make neurodivergent people more likely to experience ARFID.
Behaviors, signs, symptoms
Every once in a while, there are stigmatizing stories in the media with extreme cases of ARFID, but, as with most things in life, ARFID exists on a spectrum of severity. It is characterized by a limitation of foods severe enough to impede growth, weight maintenance, energy levels, or social experiences. It oftentimes can impact more than one of these things. Different people have different thresholds for what constitutes a concerning lack of variety in food intake and, of course, diet culture doesn’t make this any better. There are more and more parents expecting kids to be able to eat every type of food that gets served without question. This wasn’t a normal expectation in the past but has become a bit of a status symbol: having a kid who will eat anything. Unfortunately, this can create unrealistic expectations of all kids and potentially exacerbate the level of pressure kids with ARFID feel to eat foods.
Most cases of ARFID start in early childhood, with many cases starting around age 3. While this is true for many people, having an adverse experience with food at any age can spur the behaviors and symptoms associated with ARFID. Kids with ARFID grow into adults with ARFID - most people do not “grow out of” their disorder without getting treatment.
People with ARFID tend to have low food intake and a lack of food variety, but ARFID is not the same as being a “picky eater”. Whatever the initiating factor, there is almost always a limitation in the foods that are tolerated. This limited intake can result in stress during mealtimes, avoidance of specific food groups, avoidance of certain colors of food, avoidance of particular textures, brand specificity with foods, and discomfort when eating outside of the home.
Oftentimes a family member is the first to notice the signs of ARFID and seek support, but I’ve seen that ARFID can also be mistaken for a lack of willingness or a sign of defiance. When ARFID is treated as a choice, caretakers or peers can hinder the recovery process by forcing or punishing the one who is struggling. Imagine yourself sitting in front of your least favorite food (for me, anything with blue cheese) and having someone force you to finish it. You would likely push back, feel nauseous, and do what you could to get out of the situation. For a person with ARFID, any pressured meal situation can feel this intense and unnerving. Parents of those with ARFID or adults with ARFID will likely notice that pressure has an opposite effect on a person’s willingness to eat a particular food.
Treatment
Treatment can never be a one size fits all approach - each person has a different experience of developing ARFID and how they have been treated by caretakers or loved ones can drastically impact how these strategies will feel. There are a couple different modalities that providers can implement to work toward a client’s goals with food.
Responsive Feeding Protocols
One of the most helpful and supportive ways I have found to effectively treat ARFID is with responsive feeding approaches. Responsive feeding centers the person with ARFID over the “norms” of eating. The client is in the driver’s seat for any and all food exposures and the pace is dictated by the client rather than the parent or provider.
Responsive feeding promotes the client feeling competent, autonomous, and connected relationally in order to facilitate more comfortability with challenging new foods.
The provider should support the entire family unit or support system in developing a more responsive system for food to support the client in feeling comfortable trying new foods.
Exposure Work
Most people immediately think of exposure work when considering the best way to treat ARFID. I’ve learned over time that it is much more beneficial to let the client dictate when and how to engage with exposures as they can easily feel forced or coercive, contradicting the goals of responsive feeding.
If a person is ready to do an exposure to a particular food, it should be done with a member of the team with lots of support and coaching for utilizing coping skills, tolerating distress, and honoring their boundaries.
An exposure can start with just having a food in the room, on a plate, or in the client’s hand. From there a person could play with the food with their hands, lick the food, bite the food, chew the food and spit it out, or take a bite. An exposure can be done repeatedly over time until a person feels comfortable with eating a portion of the food without adverse reactions. This can be done with as many foods as needed until a person feels capable of handling an exposure on their own. Clients can also opt to do exposures on their own once they feel confident in handling the discomfort that arises.
Medical Nutrition Therapy
Chronic undernourishment can have a variety of health consequences which is why a dietitian is an important part of the team. The dietitian can work with the client and/or family to find tolerated foods that meet baseline nutrition needs (like shakes or nutrition supplements), recommend vitamins or minerals, and support any weight restoration needed for appropriate growth.
Caregiver Coaching
For kids with ARFID under the age of 10, I typically recommend the caregiver work directly with the dietitian and treatment team in order to shift the home eating environment, expectations with food, and supports to help the child with ARFID to feel more comfortable eating and trying new things. A responsive feeding approach is doable through parent coaching, in my experience. For older teens or adults, involving family in treatment might still feel beneficial to talk through expectations when eating together.
Therapeutic Modalities
CBT, DBT, and other therapeutic modalities can be woven into the treatment of ARFID especially for teens or adults who are wanting to explore their relationship with food beyond just expanding food choices.
Family Based Therapy
FBT is most effective for families with caregivers who can be in charge of every meal and snack for their child as well as participate in therapy on a weekly basis. FBT has been shown to be effective in kids with ARFID, but it is an incredibly intensive process for the entire family and caregivers should expect particularly high involvement in this treatment approach.
Team Approach: we have good evidence that a team approach to eating disorder treatment is the most effective way to see progress and long-term recovery. Here is a list of providers to consider having on your team when you are ready to start treatment.
Dietitian
Therapist
Occupational Therapist
Speech Language Pathologist
Primary Care Provider
Goals for Recovery
Since ARFID commonly intersects with neurodivergence, there isn’t a “once size fits all” look to recovery2. A provider who specializes in ARFID should be flexible and utilize their patient’s own goals and visions as the primary guide to what recovery should/could look like. With that being said, there are some classic outcomes that typically are supportive to a person feeling “recovered”.
Expansion of food choices to be able to eat in almost all situations.
A client should feel that they are able to find solutions for what to eat in most situations they may find themselves in. If they are ever on an airplane, traveling in another city or country, or going to a friend’s house, I would want them to be able to nourish themselves in some way. This may also mean being able to bring along food to any of these situations will ensure that a person can nourish themselves when needed.
Resolution of nutritional deficiencies.
If chronic undereating has resulted in poor nutritional status, the team should support a client in utilizing supplements, nutritional drinks, and food to replenish stores and ensure good nutrition. If a person’s recovery still is low in certain nutrients, the team should provide solutions for supplementation.
Increased confidence trying new foods.
Any expansion of food intake can be a positive step in feeling more nourished and flexible with food, but the shift to feeling okay with trying new things is a hallmark sign of recovery. The team doesn’t need to practice exposures to every food imaginable during the treatment process, but instead needs to help their client to understand how to support themselves through a food exposure. This opens up more possibilities for eating outside the home and adding variety.
The diet meets the dietary needs and food goals of the client.
Humans love to try and dictate what is “normal” or “right” for other humans. The reality is that each person gets to come up with their own guidelines for how to exist on this planet. If a person has found a way to eat that fits their lifestyle, their nutritional needs, and their goals; we’ve done our job. Not every person needs to eat kale salads or yogurt parfaits or seafood in order to have a nutritionally adequate intake. The use of nutritional supplements can be a huge support to someone who doesn’t have the desire to expand food choices right now… or ever.
If you have ARFID or are the caregiver to someone with ARFID, I hope this guide helps you in tailoring your treatment to your own needs and desires. I also hope it helps you in seeking out a professional to support you on your journey - ask questions and make sure the provider’s approaches are in line with your goals and needs. This is just an introduction to the basics of understanding and treating a complex mental and physical disorder. If you have more questions or want more information, please feel free to reach out via the comments or submit a question on the "contact me" page!
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