The other day, my daughter came home from work and said, “I don’t want you to say a word, but I’m going to make an egg.”
I was left speechless. My daughter has never eaten an egg‚—not scrambled, sunny-side up, fried, or any other way. And up until recently, she had never eaten other foods most teenagers like, such as meat, pasta, or cheese, because she suffered from Avoidant/Restrictive Food Intake Disorder (ARFID).
What Is ARFID?
ARFID is listed in the American Psychiatric Association DSM-V Diagnostic and Statistical Manual as a mental disorder and is defined as: an eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) manifested by one or more of the following:
- Significant weight loss (not always the case though)
- Nutritional deficiencies and the need for supplements (in young children, tube feeding may be necessary)
- Psychosocial issues (anxiety, depression, avoiding social situations)
Like anorexia, binge-eating and bulimia, ARFID is a serious eating disorder. But unlike other EDs, those with ARFID do not have self-esteem or body-image issues. They don’t restrict food because they think they will gain weight if they eat.
Simply put, kids with ARFID don’t eat certain foods because they are afraid of them.
They are fearful that they might choke or even die from eating the food. Most often, ARFID stems from a traumatic event experienced by the child. It can manifest after a choking or vomiting incident, a severe allergic reaction, or a very bad experience with a particular food. It can also begin after the trauma of a divorce or a significant change in the family unit. Sometimes the trauma can occur in utero or at birth.
A person with ARFID sticks to a menu of safe foods to avoid the fear. Their diets often consist of comfort white foods, like breads, bagels, French fries, and pasta. Their extremely bland diets usually consist of a very limited menu of around 10-15 foods that they’ll eat.
For years, our daughter subsisted mainly on Goldfish crackers, Carnation Instant Milk packets, plain bagels, and peanut butter (her only substantial source of protein). The occasional raw carrot or specifically-peeled apple were her only vegetable or fruit. The way her food was served and prepared was very specific as well. She ate waffles, but they could only have chocolate chips on them. Butter and syrup were an absolute no-go. She would eat pizza, but would scrape off the cheese and sauce. At barbecues, she would eat ketchup sandwiches. She ate all sorts of cakes, doughnuts, candies and ice cream. Sweets were never a problem.
For quite a few years we tried to get help for our daughter but, because there generally isn’t significant weight loss or external changes associated with ARFID, her pediatrician labeled her a picky eater. It wasn’t until we went to an eating disorder clinic that we got a diagnosis of ARFID. It was a relief to finally have a diagnosis for our daughter, who was 15 at the time.
For us, the main struggle with ARFID was managing our daughter’s mental and emotional health.
ARFID is usually accompanied by depression, anxiety, panic attacks, and extreme social discomfort because food is a part of most social events. In middle school, we noticed a change in her personality. She would decline sleepover or birthday invitations, and leave the dinner table claiming that she wasn’t hungry. Holidays were stressful because there were usually foods that she wasn’t comfortable eating.
After our daughter was diagnosed, she went through a 20-week intensive outpatient therapy program. The program involved somatic (touch) experience therapy that helped calm her adrenal system to make her more comfortable around food. There was food graphing, where she lined up a variety of foods (such as eggplant, mushroom, garlic, beef jerky, and crackers) in preference of look, smell, and how the item felt. In some cases, while she liked the look of a food, the smell of it was not appealing to her. This ‘graphing’ helped her to learn her likes and dislikes.
Therapy also involved peer group sessions where she was required to bring in a themed dinner once a week (such as barbecue or Mexican), and there was also a dinner out to a restaurant each week. These events pushed her out of her comfort zone and gave her a peer group to encourage and support her when she was having a tough time. There was also one-on-one therapy, family meetings, and visits with a nutritionist.
Through all of this work, my daughter learned how to like new foods and feel comfortable being in situations that involved food.
At first, she only was able to add a few new food items to her diet, such as grilled cheese, spinach and grapes. Eventually, she learned to eat and enjoy cheeseburgers, fettuccine Alfredo, and grilled chicken. Most recently, she is making and eating egg, cheese and bacon bagel sandwiches. She said to me the other day, “I never thought I would crave bacon!”
She will try anything now without making it a big deal. And even if she doesn’t like it, we are encouraged. Because she tried. Once, after therapy was over, she said something that resonated so very much to me. She couldn’t believe she had been scared of so many types of foods. After all, she said, “It’s just food.”
It is just food. But when you have a child that rejects most foods, and in turn, becomes depressed and anxious around food, you need to get help. I’m so glad our family did.