Adults with ARFID

Adults with ARFID
Dall.e

Avoidant Restrictive Food Intake Disorder (ARFID) was only recognized as a disorder affecting those older than age 6 as recently as 2013. Treatment and recognition of this disorder are in their infancy. Thus, many people with ARFID have lived with it for years without any treatment. Many adults with ARFID have simply had to learn to cope with it on their own.

I have been facilitating a free support group for adults with ARFID in California for the past two years.  During this time over 80 people have come through the group. This has given me a window into what life is like for adults with ARFID.

What is ARFID?

ARFID is an eating disorder in which difficulty in eating enough food negatively impacts either the patient’s health or their ability to manage school or career and social life. Unlike anorexia nervosa, bulimia nervosa, or binge eating disorder, insufficient eating in ARFID is not primarily driven by the desire to modify one’s shape and size.

It is important to recognize that ARFID is a heterogeneous disorder. There are three main types.

  • Sensory sensitivity. People who have sensory sensitivity have often been picky eaters since childhood. They may be very sensitive to differences in taste and texture and cling to a narrow range of foods, most often struggling the most with vegetables, fruit, and meats—the foods most likely to have been poisonous to our ancestors.
  • Low interest. Also often developing in early childhood, people with low interest tend to have less interest in eating, experience less hunger and find food less rewarding. It is theorized that these people may be born with relatively low hunger hormone levels
  • Aversive consequences. This type tends to develop later in life in those who have a predisposition to be anxious. In response to a triggering event—such as having the stomach flu or watching someone choke—people may fear potential negative events such as vomiting, choking, or gastrointestinal distress that can occur after eating. As a result, they may start to phobically avoid eating certain foods or eating altogether.

People with ARFID often have more than one type, and they may also have another eating disorder such as anorexia or bulimia, or a history of one.

There is one promising treatment for adults with ARFID and that is CBT-AR. While this can help many, my group illustrates that this treatment is hard to access and may not adequately address all the impacts of living with this disorder for many years. In fact, the creators of CBT-AR acknowledge that successful treatment will not likely make a person “a foodie” and there may be residual features.

Impact of Living with ARFID

While there is a multitude of differences among the people with ARFID, here are some common themes.

Being misunderstood. Many adults with ARFID report a long history of not knowing what was wrong with them, families not understanding how to feed them, and even professionals providing misdiagnoses (e.g., anorexia). Those who did receive treatment almost always report that they were treated as if they had anorexia—treatment providers refused to believe they did not have body image concerns that were driving their restriction. Most reported not fitting into traditional eating disorder spaces and many report never having met another person with ARFID.

Shame. Many adults with ARFID report shame about their limited diet or about their preferred foods. They feel embarrassed when they order off the kids’ menu or modify meals at restaurants or are unable to eat with peers. Some have been teased about their narrow palate. They report feeling very self-conscious when others ask about their eating struggles.

Overwhelmed by having to provide meals for themselves. When I assess people with ARFID, one of the questions most universally endorsed (from the PARDI, an assessment measure) is “I find eating to be a chore.” People with ARFID don’t typically look forward to eating; even so, they have to ensure they eat, usually 5 to 6 times a day to maintain a minimum healthy weight for their bodies. When eating is a chore, unrewarding, perhaps even terrifying, this can be a heavy burden.

Many have trouble preparing their own meals.  These people can benefit from support and structure. A participant who did fine as long as meals were provided by their workplace, started to struggle only during the pandemic when they started to work from home.  Many adults with ARFID have trouble identifying any foods that appeal to them and find choosing foods overwhelming.

Social consequences. The problems with eating have reverberations much beyond eating. It often significantly impacts social interactions because so many social interactions involve meals.  Many adults report their ARFID limits their ability to socialize. They may dread eating with others or socializing at all, feel left out when others are sharing food, and be so repelled by the food eaten by others that it is hard to even sit with them. One group member reported that whenever someone tried to comment on their food choice they would deflect to change the conversation. Others feel guilt for placing limits on where their friends can eat with them.

Sensory overwhelm. Many have sensory “superpowers” which can be more of a curse than a blessing. Many in the group report such a sensitivity to smells that they cannot be around others eating certain smelly foods, a disinterest in eating if something has been prepared in the kitchen or microwave before them. Several adults report problems with doing the dishes after meals because of disgust around the smells and residue on the dishes. People with ARFID report having to use various strategies to manage dirty dishes.

Difficulty with flexibility. Similarly, many adults with ARFID report strong allegiance to particular brands or restaurants and have great difficulty if any aspect of a preferred food is varied. Many can report that others have often tried to pass off a different product as “the same” and they can always detect a difference. This makes eating in different locations and especially travel, particularly hard.

Anxiety. Anxiety is a common experience for adults living with ARFID, especially in those with a fear of aversive consequences presentation. Research indicates that people with ARFID often have other anxiety disorders, including OCD. Many individuals with ARFID experience anxiety in areas besides eating.

Gastrointestinal distress. Overlap with disorders of gut-brain interaction (DGBI) are common. Many with a history of gastrointestinal (GI) symptoms may restrict eating in order to avoid further symptoms. An individual with ARFID may be more sensitive to sensations in their body and digestive tract.  They may also have a predisposition to anxiety which can contribute to GI symptoms. Nausea is a common sensation and several group members report assistance from medications that help with nausea.

Neurodiversity. Many group attendees self-identify as neurodivergent. Although research is limited, many researchers and providers have noted the overlap between ARFID and autism or attention deficit hyperactivity disorder (ADHD). Individuals with autism often have greater sensory sensitivity and rigidity, features that overlap with symptoms of ARFID. People with ARFID and neurodivergence may also struggle with issues of attention, information processing, and social interactions.

 

We need more resources for adults with ARFID as demonstrated by the participants in my group and their desire to learn more about their condition and to educate others. We are collaborating with other professionals to share and develop more resources for people with ARFID.

ARFID Groups

We have a FREE weekly Adult ARFID support group for adults in California with ARFID.

We also have a monthly support group for parents of people 10 to 20 with ARFID, open to people in any location.

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