Avoidant restrictive food intake disorder (ARFID): signs, causes and support in the UK

ARFID stands for avoidant restrictive food intake disorder. Beat describes it as a condition in which a person avoids certain foods or types of food, restricts how much they eat overall, or does both. The NHS places it among the recognised eating disorders alongside anorexia, bulimia and binge eating disorder.

What sets ARFID apart is the reason behind the restriction. In anorexia or bulimia, the thinking is tied to weight and body shape. In ARFID it is not. The avoidance can be driven by how food tastes, feels or smells, by fear of something bad happening when eating, or by simply not being interested in food. Because the picture varies so much from one person to another, Beat describes ARFID as an umbrella term that covers a range of different difficulties.

It is not limited to childhood. Beat is clear that anyone of any age can have ARFID, and that the difficulties may have been present for as long as a person can remember, or may have started more recently.

There is no single cause. Beat sets out three common patterns, sometimes called subtypes, and notes that one person can have more than one at the same time. Sometimes there is no clear reason or event that started it.

• Sensory sensitivity: being very sensitive to the taste, texture, smell or appearance of certain foods, or only being able to eat food at a certain temperature.

• Fear of consequences: a distressing experience such as choking, vomiting or significant abdominal pain can lead to fear and anxiety around eating, or more general worries that are hard to put into words, so that only "safe" foods are eaten.

• Low interest or low appetite: not recognising hunger in the way other people do, or finding eating a chore, so that not enough is eaten.

Because ARFID takes many forms, Beat says there is a wide range of possible signs and not all will be present in one person. They can be easy to dismiss as fussiness, particularly in children. The following are among those it lists.

• Eating a reasonable range of foods but far less than needed to stay healthy.

• Finding it hard to recognise hunger, or feeling full after a few mouthfuls.

• Taking a very long time over meals, or missing meals when busy.

• Always eating the same meals, or only foods of a similar colour.

• Avoiding social events where food will be present, or being very anxious at mealtimes.

• Weight loss, or in children not gaining weight as expected.

• Nutritional deficiencies such as iron-deficiency anaemia, or needing supplements.

Many children go through phases of picky eating, and most grow out of them. ARFID differs in degree and in impact. Beat says it can affect physical health and psychological wellbeing, and may interfere with life at home, school, work and with friends. A person may find it hard to go on holiday or to eat out, and may avoid social occasions built around food.

Beat also explains that ARFID would not be diagnosed when a person is fasting for religious or cultural reasons alone, when food is not available, when foods are avoided because of allergies, or when another clear cause such as a medical condition affecting appetite or digestion explains the difficulty. A diagnosis of ARFID is not given at the same time as anorexia nervosa or bulimia nervosa, although one could come before or after another.

Beat notes that children and young people with ARFID may fail to gain weight as expected, and that growth, including height, can slow. When the range of foods is narrow, essential nutrients may be missed. In some people serious weight loss or deficiencies develop and need treatment; supplements may be prescribed, and Beat says that sometimes a period of tube feeding is recommended if the physical risk is judged to be high.

The effect on mood and daily life can be just as significant. Beat includes accounts from people with ARFID who describe feeling like a burden at mealtimes, or being told to "just eat it", which usually increases anxiety rather than helping.

Both the NHS and Beat advise seeing a GP if you think you or someone you care about may have an eating disorder. The NHS says a GP will ask about eating habits and how you are feeling, check your overall health and weight, and may refer you to an eating disorder specialist or team. Beat suggests going with notes about how long difficulties have been present and what you are worried about, and, for children, explaining to them why you are going.

Beat points out that treatment for ARFID is not currently covered in the NICE or SIGN guidelines for eating disorders, so services vary across the UK, but says a GP should still make a referral. Young people may be seen by a community eating disorders service for children and young people, CAMHS, community paediatric services or by dietitians, speech and language therapists, psychologists and occupational therapists. Adults may be seen by specialist eating disorder services or general mental health services, particularly those offering help for anxiety.

Beat says treatment is usually tailored to the person and what is maintaining the difficulty. Most often it can be delivered as an outpatient. Commonly used evidence-based approaches include family-based treatment for young people, cognitive behavioural therapy, behavioural work such as gradual exposure to feared or avoided foods, and anxiety management training. Medication is sometimes suggested, most often to help with anxiety.

Physical health should be monitored, for example by a GP or paediatrician, and a dietitian may help with nutrition and with sensory difficulties. The NHS says that with treatment most people can recover from an eating disorder, although recovery takes time and differs for each person.

In the UK, assessment and treatment for eating disorders including ARFID are normally accessed through a GP referral to NHS services, and are free at the point of use. Because ARFID services are still developing, waiting times and the type of professional involved vary by area. Some people choose to see a private psychologist, dietitian or psychiatrist, which is a personal decision. If you go privately, it is sensible to check the practitioner is registered with the relevant professional body and has experience of ARFID, and to keep your GP informed so that physical monitoring continues.