What We Learned About Our 15-Year-Old Son’s Lesser-Known Eating Disorder

The DSM-5 (a manual that lists all psychiatric diagnoses, which medical professionals use) states that “avoidant/restrictive food intake disorder (ARFID) is an eating disorder involving an extreme avoidance or low intake of food that affects growth and level of nutrients a patient receives.” My 15-year-old son has struggled with this for many years, but we just recently realized it was getting bad enough that he needed formal treatment. He has many oral aversions, a severe gag reflex, and in addition, has over 20 food allergies. This makes it difficult for him to eat. He also has general fears of food and mealtimes. He was losing weight rapidly and his growth was stalling, so we made an appointment at our local Children’s Hospital eating disorder program. Based partly on an article from Julie K. Lesser, MD, on the National Eating Disorders Association (NEDA) blog, here’s a few things we learned.

We always thought our son was “just” super picky and had fear around food because of his food allergies. We learned that picky eating and ARFID are similar but ARFID, as noted by NEDA, carries with it much more physical and mental distress during feeding. His psychologist told us right off the bat that someone with ARFID may have difficulty with the ‘bite, chew and swallow’ mechanism most people’s brains don’t even think about. Many can even gag or choke in response to eating something that gives them high levels of anxiety.

In the DSM-5, ARFID used to be classified under feeding disorder of infancy or early childhood, or eating disorder not otherwise specified (EDNOS) but was recently recognized as its own illness.

We didn’t recognize the serious health issues that ARFID could cause. Our son was actually malnourished at his first intake appointment with his eating disorder doctor. We had no idea. We knew his growth had stalled but had no idea of the severity of this disease when it came to nourishment. One of the most common side effects of ARFID is the significant weight loss, or failure to gain weight and grow for those who should be in a growth spurt, which is what triggered us to have him seen but the reality that he was literally starving hadn’t crossed our minds. He required prescription-strength meal replacement supplements and vitamins and minerals just to get back to a healthy baseline.

Having struggled with an eating disorder myself for over 20 years, I was surprised that his had nothing to do with body image or perception. Even though he was losing weight, he wasn’t concerned with that. In the aforementioned article for NEDA, Julie K. Lesser, MD says, “The lack of a preoccupation with body image or a fear of gaining weight is one way that ARFID differentiates itself from other eating disorders, such as anorexia nervosa and bulimia nervosa.” Even though the preoccupation with weight and body image isn’t there, the medical consequences may be just as severe.

ARFID is most often diagnosed around the age of adolescence, but there is some occurrence in adults. Typically, adults have had issues for many years and just don’t seek treatment until they are older. NEDA also mentions how it may be more commonly diagnosed in males. It is often perceived that eating disorders are a “women’s disease”, but that is very much not the case.

ARFID has so many symptoms. It is so much more than picky eating and weight loss. According to NEDA, “with ARFID, foods may be avoided based on physical characteristics such as texture, smell, and appearance, or based on past negative experiences like choking or vomiting.” ARFID patients often limit food intake to particular textures; particularly starches and crunchy foods. These foods digest easier and cause less of an upset stomach. It’s nothing for our son to suddenly feel full around mealtimes (avoidance). Also, due to nutrient deficiencies, dizziness or fainting and even fatigue can be a real issue as their bodies have little fuel to run on. Things like feeling cold all of the time and sleep disturbances are also common, as they are with most eating disorders.

Even though ARFID is a newer diagnosis recognized by medical professionals, there are plenty of treatments already in place as it used to be categorized under EDNOS. When we go in for treatment, our team consists of seeing a medical doctor for things like labs, heart checks and weigh-ins, a nutritionist to help us come up with and stick to our meal plans, an occupational therapist to try and deal with the oral aversions and fear of choking/gagging, and also a psychologist to work through the behavioral treatment process in hopes of learning and using skills that align with dialectical behavior therapy (DBT) and other related techniques to hopefully achieve a full recovery.

Some people may grow well into adulthood eating only a handful of foods and use supplements in their diet to make up for nutritional deficiencies. Some patients will be able to fully use their skills to eat a more well-rounded and balanced diet. Our son eats only starches, foods that crunch and a couple of meat products fixed one specific way. He totals less than 10 foods that he will eat right now. We are hoping that through his treatment and therapy with a selected few eating disorder professionals that he will regain confidence in himself and his ability to eat food so that he can go on to lead a healthy, social and well-rounded diet in his life.