ARFID
Avoidant/Restrictive Food Intake Disorder (ARFID)
What happens?
In ARFID, a person may experience food disturbances or feeding difficulties to the point that they do not meet their appropriate nutritional and/or energy needs. In simple terms, the person is not eating a wholesome or well-rounded diet due to the complications of ARFID and because it forces them to have a very limited interaction with food.
A person may feel unable to eat with other people. They may prefer to avoid new foods (food neophobia) with intense textures, tastes or smells, opting instead to stay with foods they know well. This can make trying new foods challenging. Others may not feel hungry often, or feel full quickly.
Avoidance, once established, can become longstanding and hard to change. The more a person avoids eating, the scarier it becomes. Persistent picky eating beyond normally expected picky eating can be a sign of ARFID.
Underlying biological factors such as a flavour preferences are partly genetic and can influence food choice.
Feeding difficulties can begin early in life. For ARFID, the typical age of onset ranges from 11-14 years, with an average age of 12 years. ARFID occurs at similar rates in males and females, but it can be experienced with those who have diverse gender identities.
ARFID can occur across the weight spectrum and be diagnosed across the lifespan.
Adults
ARFID may occur during childhood, but it can also develop in adults and the adult experience of ARFID may be different to paediatric and adolescent/youth experience. Research has found that adults with ARFID may feel disgusted by unknown foods, that unknown or uncertain foods are a threat to their bodies, or they may feel confused and/or contradictory about foods they feel are safe or unsafe. This can make daily living stressful, for example, social events/networking, grocery shopping, taking trips with a partner, networking, leaving the house and feeling stuck. Adults with ARFID may have difficulties regulating their emotions.
Adults affected by achalasia, celiac sprue, Coeliac disease, eosinophilic esophagitis, inflammatory bowel disease (IBD) and Tourette syndrome may also experience ARFID. Adults with ARFID may experience post-traumatic stress disorder (PTSD) and thoughts of suicide.
Adults with ARFID may often attend hospital settings, such as gastroenterology and neurogastroenterology clinics.
People who have attention deficit hyperactivity disorder (ADHD), who are autistic or neurodivergent may experience ARFID.
There are three primary components to ARFID:
- Avoidance due to the sensory characteristics of food (sensory food aversions, extreme picky eating, appearance, taste, texture, temperature, colour)
- A lack of interest in eating or food (food avoidance, low food responsivity)
- An increased central nervous system response due to expecting a negative reaction or worries about the consequences of eating (phobia affecting food intake, fear of choking, vomiting, stomach aches, abdominal discomfort, diarrhoea, constipation or health problems)
- Low appetite
- Sensory sensitivity
- Fear and sensory sensitivity
- Fear and low appetite
- Fear, sensory sensitivity and low appetite.
Myths and misconceptions
- ARFID is a children’s problem
- People with ARFID are underweight
- ARFID is a fancy way of describing a fussy eater.
- Eating problems and emotional disturbances
- A person feeling frustrated at not being able to eat what they want
- Clinically significant restrictive eating leading to weight loss, or a lack of weight gain
- Nutritional deficiencies and related complications, electrolyte imbalances, vitamin deficiencies
- Less macro and micronutrient intake
- Reliance on tube feeding and oral nutritional supplements
- Fear of gastrointestinal symptoms. Gastroparesis – delayed emptying of stomach contents
- Disturbances in psychosocial functioning
- Low mood, irritability, anxiety, apathy, difficulty concentrating, social isolation
- Electrolyte abnormalities
- Low bone mineral density, an impact on bone strength and bone mass accrual (growth)
- Low blood pressure (hypotension)
- Shorter stature
- Trouble sleeping and nightmares
- Potential sight loss
- Dry eyes
Research has also identified behaviours and difficulties such as:
- Food avoidance and restrictive eating, not being able to eat solids
- Selective eating since childhood
- Decreased appetite
- Abdominal pain, constipation and gastrointestinal symptoms
- A heightened fear of vomiting and/or choking
- Possible food texture issues
- Generalised anxiety, depression, obsessive compulsive disorder (OCD), ADHD
- Difficulties with sustained attention and visual-spatial skills
- Difficulties sleeping and managing change in routine
- A nervous system sensitive to change
- Lower quality of life, avoiding social situations that involve food
- Stressful mealtimes
- Disruption to daily activities such as school, participating in social activities
- Challenges understanding bodily cues (interoceptive signals), trying to avoid food to avoid internal sensations
In children, there may be a fear of physical illness related to shape/weight for example, high cholesterol and/or obesity leading to heart disease. Research has noted that some children were underweight due to feeding and eating disturbances had reported teasing from peers. Those with ARFID may be less likely to report typical eating disorder behaviours such as purging and excessive exercise.
- Current eating behaviour and persistence of the problem
- Interest in food and eating
- Sensory issues
- Fear/aversion related to eating behaviour
- Nutritional adequacy of intake/ consequences
- Oral supplement or tube feed dependency
- Social and emotional functioning
- Personal circumstances and context
- Whether primary eating disorders and weight/shape concerns are a factor
- Presence of other medical or psychological disorder
- Asking the person about what motivates their food avoidance
- History of an exclusion diet, such as diary-free, gluten-free
- Overlap with disorders of gut-brain interaction (DGBI), such as functional dyspepsia (chronic indigestion)
- Co-occurring psychosis.
Undertaking a comprehensive developmental history of feeding and eating and possible mechanical oral motor problems can help clinicians to understand what may be happening for the person. Research has suggested a potential link between the development of ARFID and children being born pre-term, birth-related complications, and invasive procedures postnatally.
A diagnosis of ARFID is not given if the nutritional problems are better explained by a lack of available food or a cultural practice/tradition, such as religious fasting, or if the person has substantial and profound dissatisfaction with body shape or weight (such as in anorexia nervosa, or bulimia nervosa, or if the clinical problem is better accounted for by an existing medical condition or another mental disorder.
Sourcing a dietitian with knowledge of sensory issues around food and with knowledge of ARFID may be helpful. Paediatric psychology/psychotherapy the for child and family, alongside a paediatric occupational therapist (OT) and a developmental paediatrician and speech and language therapy (SLT), are also options to consider. Most people can receive treatment on an outpatient basis. Social work consultations have been shown to be helpful during the inpatient process.
- Learning how to cope with anxiety linked to eating or past traumatic food-related incidents
- Addressing psycho-social impairment
- Addressing nutritional imbalance, malnutrition
- Expanding the range of foods consumed, without threats or force-feeding
- Acceptance-based interoceptive/exteroceptive exposure treatment, to understand bodily sensations and needs
- Building confidence outside of hospital, for both families and the person
- Targeting the factors which maintain and drive the eating difficulty through psychological intervention, with support from medical, dietetic and other interventions tailored to address areas of impact and risk specific to the person
- Individualised interventions that consider a person’s developmental stage and treatment planning, including addressing co-occurring issues
- Food chaining strategies, such as with a dietitian
- Increasing general self-regulation skills
- Creating a positive emotional context surrounding food and eating with others.
A multidisciplinary and multi-modal assessment and treatment approach may be helpful. There is a need for integrated referral and care pathways, across a network of professionals and services.
Research studies have highlighted:
- Cognitive Behavioural Therapy for ARFID (CBT-AR) – developed at Massachusetts General Hospital
- Family-Based Therapy (FBT) – modified for ARFID
- Parent-Facilitated Behavioural Treatment (PBT-ARFID)
- Supportive Parenting for Anxious Childhood Emotions adapted for avoidant/restrictive food intake disorder (SPACE-ARFID)
- Psychoeducational and Motivational Treatment (PMT)
- Dialectical Behaviour Therapy (DBT) frameworks
- Sequential Oral Sensory (SOS) approach.
Workbook link posted with permission
Note: This is a large download: 53 pages (15MB file).
Support videos – ABUHB Paediatric ARFID Service
ARFID and Schools – ABUHB Paediatric ARFID Service
Food chaining – ABUHB Paediatric ARFID Service
NHS Patient Webinars – Further Information and Hand Outs Fussy Eating in Children
ARFID and Schools: Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
ARFID – Bodywhys Webinar
With thanks to...
Supporting Families
