Gideon Whitehead says he’s struggled with ARFID for as long as he can remember. Because many people aren’t aware that ARFID in adults even occurs, this was often isolating. “As an adult, I’ve felt secluded with my diagnosis. I tried a lot of things to hide it from those I loved,” he says.
Whitehead, who is a peer mentor at the eating disorder treatment provider Equip, is far from alone in his ongoing struggle with avoidant/restrictive food intake disorder, commonly known as ARFID. Recognized in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as a diagnosable eating disorder, ARFID is thought to affect up to 5% of adult populations. But the disorder, which is characterized by food restriction that is not typically tied to weight loss desire or negative body image, has largely been looked at as an illness for young people. However, as Whitehead’s experience illustrates, ARFID isn’t exclusive to kids and teenagers, and many people struggle with ARFID in adulthood.
Understanding more about ARFID and how it may manifest in adults can help debunk some of the myths around the illness and provide hope for those affected. Here’s what everyone should know about ARFID in adults.
What is ARFID and how does it present in adults?
“ARFID is an eating disorder characterized by not eating enough different types of food, not eating enough food, or both,” Equip’s VP of Program Development, Jessie Menzel, Ph.D. says. “But ARFID looks quite different than more traditional eating disorders.” ARFID can present in three particular ways, and an individual with ARFID may have one or any combination of the three presentations:
1. Sensory Sensitivities
When someone has strong preferences and responses to taste, texture, temperature, and/or smell, etc.
2. Fear of Aversive Consequences
When someone may have had a past negative or traumatic experience with food (e.g. choking, vomiting, allergic reaction) and now fears that happening again to the extent that they significantly reduce the number of foods they feel safe eating.
3. Lack of Interest
When someone isn’t able to notice hunger cues and may feel like eating is a chore. This loss of appetite can be a response to other emotions, like chronic depression or anxiety.
Some adults may not be aware that the eating habits they’ve had for years meet the criteria for ARFID. Menzel adds, “Even though ARFID itself is nothing new, its behaviors and symptoms weren’t captured in adults by other diagnostic categories before 2013. Thus, many adults today likely have never been diagnosed with ARFID or are only just learning that their struggles with eating have a name.”
Equip Therapist Sasha Solov, LSW highlights the role that stigma can play in preventing people from getting care, “People with ARFID may not seek treatment due to messages they have received that they are ‘just too picky’ and that it’s their fault.”
There are several reasons why adults may have a more difficult time managing and recovering from ARFID. “Because adults have potentially spent more time entrenched in these patterns, the thoughts and behaviors may be especially difficult to challenge,” says Solov. “An adult who has been dealing with these symptoms for a long time may also feel particularly misunderstood and isolated in their eating disorder, unlike children who have had the opportunity to learn about and destigmatize the diagnosis while young. Additionally, adults usually have more control over their own eating—unlike children who are fed by their parents—and thus may be even more restrictive.”
ARFID Symptoms in Adults
Adults and children with ARFID often exhibit similar symptoms. According to Solov, “The only real significant difference that we seem to find in the research is that adults with ARFID tend to be at higher weights on average.” That said, the range of symptoms across all ages can vary significantly depending on the way ARFID is presented in each individual. “People with sensory sensitivity often eat very few types of foods, may exclude full food groups from their diet, have very specific preferences when it comes to food, including brand, taste, texture, or color, and be afraid to try new foods,” Menzel says.
Adults with ARFID who don’t have sensory sensitivities may avoid foods for other reasons, like fear or anxiety of a negative event. “People who have specific fears of a bad outcome happening often eat very little total foods and may lose a significant amount of weight in a short period of time,” Menzel says. “This could look like checking foods for allergens or contaminants or over-chewing their food to avoid choking. Many also report significant gastrointestinal symptoms and are fearful of exacerbating them or making them worse.”
The third presentation, lack of interest, results in different symptoms, Mezel says, “People with lack of interest in eating tend to find eating to be a chore. They often have to push themselves to eat and may not find food, in general, to be that enjoyable.”
How do you treat ARFID in adults?
While family-based treatment (FBT) is considered the gold standard of care for children and adolescents, research has shown that adults with ARFID are likely to benefit from a different clinical approach.
“Right now, only one treatment has been tested for treating ARFID in adults: cognitive behavioral therapy for ARFID (CBT-AR),” Menzel says. “Preliminary evidence shows that it may be a very promising treatment for all presentations of ARFID. CBT-AR draws from elements of other treatments, like enhanced CBT for eating disorders (CBT-E), but is also unique in its use of specific interventions to address anxiety, fear, and sensory sensitivity. Unlike treatments that rely more heavily on parental intervention, CBT-AR is intended to be delivered as an individual treatment for most adults, though family can be involved.”
CBT-AR involves working closely with a therapist to receive psychoeducation to learn more about ARFID and how it manifests. It also typically involves self-monitoring between sessions, so therapists can track progress with the patient. At Equip, while CBT-AR is administered primarily through a patient’s therapist, they also have access to a medical provider and dietitian to help them with weight restoration, and a peer mentor who can provide guidance from their lived experience.
If you’re concerned that you or a loved one are struggling with adult ARFID, you don’t have to navigate this alone. Talk to your medical provider or an eating disorder specialist to get a professional assessment.