ARFID point of view: "I'm new here"

Avoidant restrictive food intake disorder (ARFID) can feel like an isolating diagnosis at times. On one hand, if you or a loved one has been diagnosed with ARFID, you may be relieved to finally have a name or explanation for what you’ve been experiencing. On the other hand, you may feel isolated by the labeling of this new diagnosis. It may seem like most people don’t understand what ARFID is, and you might struggle to find ARFID-specific resources.

Why does it feel like no one is talking about ARFID?

If you’ve felt this, you’re not all wrong. Knowing the history of ARFID may help validate why you feel this way. ARFID is a relatively new eating disorder diagnosis. From a historical viewpoint, the first version of the Diagnostic and Statistical Manual of Mental Disorders (DSM) was published in 1952. You may have heard people refer to the DSM and wondered what they are talking about. The DSM basically helps us give a name to all mental health conditions, and that helps our communities collaborate well so we can provide the best treatment. In May 2013, 61 years after the first DSM was published, ARFID was finally named and added to the DSM-5. With ARFID being so new, the mental health field is still trying to complete research, learn more, provide more information, and spread awareness.

Speaking from our experiences

According to Ovidio Bermudez, MD, CEDS, Senior Medical Advisor for Eating Recover Center (ERC), the first time ERC provided care to someone with an official diagnosis of ARFID was in 2016. Since that time, ERC has treated thousands of individuals experiencing ARFID. With Dr. Bermudez’s training and experience, I’ve learned a few to-the-point and important key notes about ARFID. For example, ARFID

• Is not just picky eating in kids
• Is not a “lesser”’ eating disorder 
• Is not a behavioral disorder
• Is not caused by parents

You can click here to see the DSM’s ARFID criteria. You’ll notice in the criteria that a desire to be thin, or to lose weight, is not part of the ARFID criteria. This can be very confusing for the general population who typically think of eating disorders as an issue of body dissatisfaction or concern about body shape/weight. Health professionals who are not trained in eating disorder treatment are not immune to this oversight and can sometimes miss making other important connections. As a result, there is a chance that ARFID might be misdiagnosed or diagnosed later than would be ideal. It also means that, from a cultural perspective, the symptoms people face when living with ARFID are not always recognized as a true concern. Symptoms can be dismissed or minimized, which can lead to greater feelings of isolation.

Decreasing feelings of isolation by increasing community awareness

With your own increased understanding, it is possible to increase awareness in your community about ARFID and how to recognize the warning signs. When educating yourself and others, it’s helpful to know that not all ARFID looks the same. Like other eating disorder conditions, there are several different types of ARFID as follows:

• Avoidant: avoiding eating due to fear of a bad reaction. This can look like:
  • Fear of choking, nausea, pain, inability to swallow, or anaphylaxis. 
  • The fear is so overwhelming that it regularly interferes with eating habits or routines.
• Aversive: sensory sensitivity to specific foods, leading to a limited diet. This can be:
  • Dislike of specific food colors, food temperatures, food textures.
  • Sensory overstimulation: bitter or sweet flavors may feel too overwhelming.
• Restrictive: lack of interest in eating, and not being able to eat enough. Often experienced as:
  • Extreme pickiness, or rigidness about what foods are acceptable.
  • Lack of focus on eating, or excessive focus on activities that prevent eating.
  • Wishing that eating more didn’t feel like such a chore.
• Mixed type: just about any combination of the three types listed above. 
  • A typical experience is starting with restrictive patterns and then developing avoidant patterns on top of those due to a negative experience.
• ARFID plus: Over time, we’ve also learned that ARFID can shift into anorexia. Some therapists and doctors called this transition “ARFID plus.” Warning signs for this include (1) concerns about body shape and size, (2) fear of weight gain, (3) negativity about fatness, (4) negative body image, and (5) preference for lower calorie foods.

Part of awareness is also understanding prevalence, or who is most often impacted. We know that ARFID is more common in children and young adolescents [1]. However, that does not mean we don’t see it in late adolescence and adulthood at all – we absolutely do! We also know that ARFID is often co-occurring, or seen hand in hand, with anxiety and obsessive-compulsive disorder (OCD) [1]. When we say co-occurring, we don’t mean that ARFID necessarily causes anxiety or the other way around. We do mean that individuals often experience ARFID and anxiety or OCD at the same time. There is also a fair amount of overlap between ARFID and autism spectrum disorder, particularly with the aversive (sensory sensitivity) type of ARFID [2].

Sharing what you’ve learned and where others can find more information is a great way to increase awareness.

Finding community support and connection

Seeking professional support gives people an opportunity to share and be met with understanding and compassion. Sometimes this might look like a support group, or an individual therapist, or a treatment center. Finding eating disorder experts who are familiar with the treatment of ARFID is key. Not only will they provide professional understanding and guidance, but they can also connect you to a peer support system.

With an ARFID diagnosis, it can sometimes feel like no one understands, even within the eating disorder recovery community. If you feel this way, know that your feelings are valid and that there are others out there who “get it.” If you’re interested in seeking treatment with experts at ERC, you can always give ERC a call at 877-825-8584 to discuss your story and options. We are here. 

ARFID-Specific Resources

Mental Note Podcast: Is It Picky Eating or Avoidant Restrictive Food Intake Disorder (ARFID)?
YouTube ARFID Playlist

Sources

1. Fisher, M. M., Rosen, D. S., Ornstein, R. M., Mammel, K. A., Katzman, D. K., Rome, E. S., Callahan, S. T., Malizio, J., Kearney, S., & Walsh, B. T. (2014). Characteristics of avoidant/restrictive food intake disorder in children and adolescents: A “new disorder” in DSM-5. Journal of Adolescent Health, 55(1), 49–52. https://doi.org/10.1016/j.jadohealth.2013.11.013
2. Bourne, L., Mandy, W., & Bryant‐Waugh, R. (2022). Avoidant/restrictive food intake disorder and severe food selectivity in children and young people with autism: A scoping review. Developmental Medicine & Child Neurology, 64(6), 691–700. https://doi.org/10.1111/dmcn.15139