Avoidant/Restrictive Food Intake Disorder

What Causes Avoidant/Restrictive Food Intake Disorder?

Scientists don’t know what causes ARFID, and the disorder may arise from different causes in different people. Some scientists believe that ARFID may be triggered by certain traits or circumstances, including:

• Extreme sensitivity to food taste or texture
• Traumatic experiences associated with food (e.g., choking or vomiting)
• Other mental health-related issues such as autism, anxiety disorders, or attention-deficit/hyperactivity disorder (ADHD)

Is Avoidant/Restrictive Food Intake Disorder Hereditary?

Research suggests that genetic factors influence who is vulnerable to eating disorders such as ARFID. Although experts think 50-80% of cases result from genetics, no specific gene has yet been linked to the disorders.

While eating disorders tend to run in families, they likely result from multiple factors. Studies of genes at the molecular level have not pinpointed any DNA variants that directly cause eating disorders. However, a recent gene sequencing study at the University of Iowa identified previously unobserved and ultra-rare mutations that appear to influence the disorders. Scientists think they may result from a genetic predisposition triggered by life events and family environment.

How Is Avoidant/Restrictive Food Intake Disorder Detected?

Symptoms of ARFID usually appear in childhood, and they may be difficult to differentiate from typical picky eating. As a child’s extreme calorie restriction progresses, physical and behavioral signs of the disorder may emerge. Parents should be alert for warning signs such as:

• Wearing baggy or layered clothes to hide weight loss or stay warm
• Frequent complaints about being cold
• Drastic changes in eating behavior
• Avoidance of eating with others
• Expressed anxiety about vomiting or choking

How Is Avoidant/Restrictive Food Intake Disorder Diagnosed?

A doctor may consider a diagnosis of ARFID when a person presents with symptoms of extreme eating restrictions and inadequate calorie intake. Part of the diagnostic process will include ruling out other medical or mental health issues that could be causing the symptoms, including depression, schizophrenia, or other eating disorders. When other possible causes have been ruled out, a doctor may consult with a mental health practitioner to administer psychological assessments in pursuit of an ARFID diagnosis.

The diagnostic criteria for ARFID in the Diagnostic and Statistical Manual of Mental Illnesses (DSM) include:

• 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) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:
  • Significant weight loss (or failure to achieve expected weight gain or faltering growth in children)
  • Significant nutritional deficiency.
  • Dependence on enteral feeding or oral nutritional supplements.
  • Marked interference with psychosocial functioning.
• The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder.
• The disturbance is not better explained by a lack of available food or by an associated culturally sanctioned practice.
• The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa.
• There is no evidence of a disturbance in how one’s body weight or shape is experienced.

PLEASE CONSULT A PHYSICIAN FOR MORE INFORMATION.

How Is Avoidant/Restrictive Food Intake Disorder Treated?

Treatment for ARFID may include:

• Cognitive-behavioral therapy (CBT) may help someone with ARFID cope with feelings of anxiety associated with eating.
• Medication. Although not a first-line treatment, medications can help people with ARFID related to other treatable mental illnesses. Specialized treatment may be needed to address various mental health diagnoses.
• Nutritional support from a dietitian
• Nutritional supplements
• Speech therapy
• Hospitalization (in severe cases)

How Does Avoidant/Restrictive Food Intake Disorder Progress?

People typically do not grow out of ARFID-related behaviors, and over time, the untreated disorder can lead to significant medical and social complications, including:

• Bone loss
• Muscle weakness
• Constipation
• Low body temperature
• Nutrient deficiencies
• Thyroid problems
• Need for a feeding tube
• Dry skin
• Hair loss
• Fine, downy, dark hair on arms, chest, face, and face
• Deficits in memory and attention
• Weakened immune system
• Social isolation
• Problems at school or work

How Is Avoidant/Restrictive Food Intake Disorder Prevented?

If ARFID is suspected, seek professional help early. In general, people don’t simply outgrow the disorder, but early intervention and treatment can help prevent long-term complications. 

Avoidant/Restrictive Food Intake Disorder Caregiver Tips

Many people with ARFID also suffer from other brain and mental health-related issues, a situation called co-morbidity. Here are a few of the disorders commonly associated with ARFID:

• Many people with ARFID also suffer from depression.
• Many people with ARFID have an anxiety disorder, such as social anxiety disorder, at some point in their lives.
• ADHD is common among people with ARFID.
• ARFID is sometimes associated with other mental health-related issues such as autism or schizophrenia.

Avoidant/Restrictive Food Intake Disorder Brain Science

Scientists don’t know how brain structure and function influence the development of ARFID, and research in these areas is in its early stages. Although ARFID shows some similarities to eating disorders such as anorexia nervosa, it also has significant differences, especially the absence of body-image issues as a motivation for food restrictions. This suggests that something different might occur in the brains of people with ARFID compared to those with anorexia.

Areas of current research interest include the role sensory perception might play in ARFID and the interplay between the senses, the digestive process, and brain function.

Avoidant/Restrictive Food Intake Disorder Research

Title: Confirming the Efficacy/Mechanism of Family Therapy for Children With Low Weight ARFID

Stage: Recruiting

Principal Investigator: James D. Lock, MD, PhD

Stanford University

Palo Alto, CA 

This study examines the efficacy and mechanism of family therapy compared to usual care for children between the ages of 6 and 12 diagnosed with Avoidant/Restrictive Food Intake Disorder. Preliminary data suggest that family therapy is superior to standard care and that improvement in parental self-efficacy related to feeding their children is the treatment mechanism. In addition, this study will attempt to identify specific patient groups who respond to family therapy.

Potential subjects aged 6 years to 12 years, 11 months old with DSM 5 ARFID, and weight equal to or between 75 to 88% EBW who are medically stable for outpatient treatment and their families will be recruited through Stanford University, pediatricians, mental health experts, clinics treating EDs, and local parents’ groups. Those eligible for the program will be invited to read and sign informed consent forms and complete the baseline assessment. Participants will then be randomized to FBT-ARFID with medical management for 14 sessions provided over 4 months or manualized Non-Specific Care (NSC) with medical management for 4 months. NSC will consist of 14 sessions over 4 months.

There will be 5 major assessment time points: Baseline, 1 month, 2 months, End Of Treatment (4 months), and 6-month post-treatment Follow-Up. Both the child and the parent will complete measures at these time points. In addition, parents will complete short survey assessments after each of the 14 treatment sessions.

Title: A Two-Session Exposure Treatment and Parent Training for ARFID (ARFID-PTP)

Stage: Recruiting

Principal Investigator: Julia M. Hormes, PhD

University at Albany

Albany, NY 

This study aims to assess the acceptability, feasibility, and preliminary efficacy of a two-session, virtual parent-training exposure protocol for children ages 5-12 who experience picky eating consistent with an Avoidant-Restrictive Food Intake Disorder (ARFID) diagnosis.

Potential subjects aged 5 to 12 years with picky eating symptoms consistent with an ARFID diagnosis, as determined by the Pica, ARFID, Rumination Disorder Interview, a semi-structured diagnostic interview, will be recruited via social media and local doctor’s offices. Eligible subjects will complete informed consent and an intake session. Participants will then be randomized to an immediate treatment group, in which they will begin treatment the following week, or a 4-week waitlist condition, in which they will wait four weeks to begin treatment. All participants will have the opportunity to receive the therapy, ARFID Parent Training Program or “ARFID-PTP.” ARFID-PTP was adapted from a seven-session parent training for extremely picky eating behaviors to examine the efficacy of a two-session, virtual protocol, on increasing food intake and decreasing selective eating. The two virtual treatment sessions will include psychoeducation, parent-training skills, and exposure protocol. There will be 5 major assessment time points: intake, end of treatment, 4 weeks post-treatment, 3-months post-treatment, and 6 months post-treatment.

Title: Evaluating Hunger Manipulation During Feeding Intervention

Stage: Recruiting

Principal Investigator: Valerie Volket, PhD, BCBA-D

Emory University

Atlanta, GA 

The primary objective of this study is to determine to what extent hunger provocation, via rapid weaning from enteral feedings, is acceptable and feasible and to evaluate the effect of this intervention when used in an intensive multidisciplinary feeding intervention (IMFI) model of treatment (standard care), for individuals with Avoidant Food Intake Disorder (ARFID) who are dependent on enteral feedings to meet their daily caloric needs.

The recognized standard of care for children dependent on feeding tubes is intensive multidisciplinary feeding intervention (IMFI) involving a professional team that includes psychologists, physicians, nurse practitioners, registered dietitian nutritionists, and speech-language pathologists/occupational therapists working together in inpatient or day hospital settings. A meta-analysis of 11 studies involving intensive, multidisciplinary intervention reported that 71% (95% CI, 54%-83%) of 454 patients successfully weaned from feeding tube dependence at discharge from inpatient or intensive day treatment programs. Treatment gains were maintained following discharge, with 80% (95% CI, 66%-89%) of 414 patients successfully weaned from tube feedings at the last follow-up. The most common treatment approaches documented by the meta-analysis involved behavioral intervention and tube weaning (hunger manipulation – evoking a state of hunger to encourage oral consumption by rapidly weaning from the tube). The review highlighted the lack of consensus among clinicians and researchers regarding the criteria for, rate of, and timing of weaning from enteral feedings.

As a result, the authors concluded that the relative contribution of aggressive tube weaning as a standalone or adjunctive therapy to behavioral intervention remains uncertain.