While there’s still a common misconception that avoidant/restrictive food intake disorder (ARFID) solely affects young people, there’s growing awareness about the fact that it can also impact adults. Research shows that ARFID—which is characterized by extremely limited or picky eating that’s not related to body image concerns or a desire to lose weight—affects anywhere from 0.3% to 4.8% of general adult populations across different countries. But even as more people come to understand that ARFID can exist beyond childhood, there are still questions about what causes ARFID in adults.

While every case of ARFID is different and each person experiencing an eating disorder has a unique history and recovery journey, understanding the common causes of ARFID in adults may help shed light on the realities of the illness. Read on to learn about the potential causes of adult ARFID, the signs and symptoms to be aware of, and how to seek help.

How common is ARFID in adults?

“Generally, we have less data on ARFID in adults than in children, but recognition of the disorder in adults is growing quickly,” says Equip’s VP of Clinical Programs, Jessie Menzel, PhD. “It used to be that we thought ARFID was just as common as anorexia nervosa in adults, but more recent studies suggest that it could be much more common.”

While the lifetime prevalence of anorexia in adults is estimated to be 0.6%, prevalence rates of ARFID range from 4.51% to 11.14%. According to a 2023 cross-sectional study of 50,082 adults, 2,378 (4.7%) screened positive for ARFID.

What causes ARFID in adults?

Like all eating disorders, ARFID isn’t the result of one specific cause, but rather a complex mix of different factors including genetics, environmental influences, brain biology, and experiences. While some adults with ARFID may have actually had the illness as children and never received treatment or even a diagnosis, others may have developed the condition later in life due to traumatizing events, health issues, or other factors.

Before diving into the potential causes of adult ARFID, it’s first helpful to understand the three different presentations of ARFID. People with ARFID eat a very small variety or very small amount of food (or both), due to one of three different causes, known as "presentations." These are:

1. Sensory sensitivities, like being unwilling to eat things with certain textures or smells
2. Fear of something bad happening from eating, like choking, vomiting, or an allergic reaction
3. Lack of appetite or interest in food

Many adults with ARFID may have unresolved or untreated food issues from childhood. “Sensory sensitivity to food or lack of interest in eating, in particular, tend to appear in early childhood and can persist into adulthood,” Menzel says. She explains that for some, symptoms that are mild and manageable in childhood later have a significant impact on adult life: “For example, as they grew, their tolerance of different foods narrowed and became more inflexible, or years of mild nutrient deficiencies began to take their toll, or their eating began to have a greater impact on their social lives.”

Others, however, may develop ARFID for the first time in adulthood. “While there are certainly adults who developed ARFID as a child and go undiagnosed until they’re adults, ARFID can also develop in adulthood,” says Equip Peer Mentor Kelsey Gilchriest, who was diagnosed with ARFID as a young adult. “My ARFID got worse during and after college, when I was exposed to many new foods, as well as more independence and responsibility around food.”

Menzel also says that adults can develop ARFID as the result of making dietary changes in an attempt to manage other health conditions, like gastrointestinal symptoms. “Research in adults shows that elimination diets, a common recommendation in the treatment of many gastrointestinal disorders, significantly increases someone’s risk of developing ARFID,” she says.

People can also have traumatizing events or experiences that trigger or worsen ARFID symptoms. That might mean choking, having an allergic reaction, getting food poisoning, or even observing any of these experiences in someone else. While Gilchrest learned as an adult that she had unknowingly been exhibiting signs and symptoms of ARFID since an early age, one particular incident intensified her illness in a major way: “The most severe restriction that led to malnourishment came when I witnessed a coworker get food poisoning as an adult,” she says. “This experience really cemented my anxiety and avoidance around food, and led me to finally receive a diagnosis of ARFID and a referral to treatment.”

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What ARFID looks like in adults vs. children

While the causes of ARFID may vary between children and adults, the illness tends to present similarly across age groups. “The core symptoms of ARFID are the same in adults as they are in children,” Menzel says. “In other words, ARFID in adults is also associated with one or more of the following presentations: extreme sensitivity to the sensory properties of food, a fear of something bad happening after eating, or a lack of interest in food or eating.”

Although ARFID symptoms do not seem to differ significantly between children and adults, Menzel says there are some notable exceptions. “For example, some data show that children with ARFID are much more likely to be underweight and need to weight restore as part of treatment, whereas adults with ARFID are less likely to need weight restoration as part of treatment,” she says. A new study also found that adults with ARFID tend to report more symptoms regarding lack of interest in food, including a small appetite and struggling to eat enough food.

Adults and children with ARFID may also differ in how they present to treatment, according to Menzel. “As with other eating disorders, families typically seek treatment on behalf of their child, and a common motivator may be the significant challenges or limitations posed on the family by the child’s ARFID,” she says. “Parents are also more likely to be concerned by a child’s pickiness than the child themselves. However, that perspective may shift with time. Adults are more likely to be self-motivated in seeking treatment, and they’re often concerned about how their eating impacts their relationships, socializing, and ability to navigate public spaces.” Menzel also notes that ARFID can have profound mental health impacts on adults, and is associated with depression, loneliness, anxiety, and even suicidal thoughts.

According to Menzel, common symptoms of ARFID in adults include:

• Sensitivity to the smell, taste, or texture of food
• Eating few total foods or a very narrow range of foods
• Inflexibility with respect to the brand or preparation of food
• Not eating enough food
• Needing to push oneself to eat throughout the day
• Getting full easily
• Fears of choking, vomiting, allergic reactions, illness, or pain after eating
• General anxiety around food or eating
• Weight loss
• Nutritional deficiency
• Reliance on nutritional supplements or feeding tube for nutrition
• Struggling to function socially or occupationally (e.g., avoiding restaurants, not eating with others, feeling ashamed or embarrassed about eating habits)

Treatment for adults with ARFID

Unlike most other eating disorders, ARFID is not driven by body image and weight concerns, making treatment a bit unique. The core of ARFID treatment is often exposure, which helps patients cope with anxiety-provoking or challenging foods and experiences. While this is true for ARFID treatment at any age, there are some differences between how the illness is treated in children versus adults, and specific challenges adults with ARFID may face when seeking treatment.

“Because ARFID and its symptoms have historically been associated with children, there are often many systems in place to support children who struggle with ARFID,” Menzel says. “Adults, however, are much more limited in their options.”

While children can receive support from mental health providers as well as feeding disorder specialists, Menzel notes that feeding specialists rarely provide treatment for adults. Children may also receive occupational therapy, oral-motor skills therapy, nutritional counseling, or behavioral therapy, along with adapted versions of family-based treatment (FBT) and cognitive behavioral therapy (CBT). “For adults, treatment is largely limited to the support of mental health providers and dietitians,” she says. “Thankfully, CBT for ARFID (CBT-AR) was developed to meet the needs of adults with ARFID. It’s the only treatment for ARFID in adults that has been systematically studied, and it shows very promising results.”

Because misunderstandings about ARFID (and particularly the way it affects adults) continue to abound, some patients find it challenging to access adequate care. In Gilchriest’s case, presenting as an adult with ARFID symptoms complicated her ability to receive effective treatment. “When I found the ARFID diagnosis on a Google search and brought it to my therapist at the time, she assured me I did not have an eating disorder, despite the fact that I was only eating a handful of foods at that time,” she says.

Once Gilchriest did manage to get help, she was the only adult with ARFID at her treatment center. “This was incredibly isolating, and many resources I looked for were geared more towards children rather than adults,” she says. “I had a hard time seeing my experience reflected anywhere, which made me feel like a black sheep and, at times, even misunderstood.”

Based on her experience, Gilchriest says the major difference in treatment options for adults versus children with ARFID is around external support. “I work with many children with ARFID who are doing an FBT approach,” she says. “This is where the caregivers of the child have much more of an active role, whereas when I went to treatment I was largely supporting myself. The treatment modality I find my teams using the most with adults with ARFID is CBT-AR. This modality specifically addresses the particular presentations of ARFID, and can be very personalized to the patient depending on what it is they struggle with.”

While finding treatment for ARFID as an adult can be challenging, it’s important to understand that treatment options do exist, and that it’s essential to seek help from an ARFID-informed provider. “If you’re concerned about any aspect of your relationship with food, it's worth talking to someone about it,” Menzel says. “However, be aware that many health providers are still unaware that ARFID is an eating disorder that impacts adults. I recommend doing your own research and talking to an eating disorder professional who is more likely to be trained to recognize ARFID in adults.”

If you’re an adult struggling with symptoms of ARFID, know that full recovery is possible, but that it requires specialized, evidence-based support. Our free, 5-minute ARFID screener can help you determine potential next steps, or you can schedule a call with our team to talk through your concerns and see if Equip can help.