What is ARFID?

Sadly, eating disorders are responsible for more loss of life than any other mental health condition and, unfortunately, they are becoming more frequent.

UK hospital admissions for eating disorders have risen by 84% in the last 5 years, and almost 10,000 children and young people started NHS eating disorder treatment between April and December 2021, an increase of a quarter compared to the same period the previous year and up by almost two thirds since before the COVID pandemic.

This figure does not include those young people who entered private treatment, meaning the overall figures, if recorded, would be significantly higher. The number of children and young people admitted to hospital with eating disorders has increased by 35% in the last year.

A report published in 2021 outlines that eating disorders cost the UK £9.4 billion a year and that eating disorders affect between 1.4 million and 2.3 million people in the UK. Most eating disorders develop during adolescence, although there are cases of eating disorders developing in children as young as 6 and in adults in their 70s.

What is ARFID?

An eating disorder is a severe mental illness and shouldn’t be underestimated. Avoidant/Restrictive Food Intake Disorder (ARFID) is a serious disorder and was introduced as a new mental and behavioural disorder diagnosis in 2013.

The entry of ARFID into the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) was significant in that it had previously existed under an umbrella term used to encompass all other infant and early childhood feeding disorders used to describe restrictive eating patterns which result in significant health problems, including weight loss, poor growth, nutritional deficits or poor emotional wellbeing. ARFID is not someone with picky or mildly selective eating.

Individuals with ARFID, particularly children, have increased nutritional risk, as eating patterns such as reduced food variety and intake can result in macro- and micronutrient deficiencies and growth faltering.

Although more common in children and teenagers, ARFID in adults may be a result of untreated childhood feeding issues or a lengthy history of aversion to sensory aspects of food, such as taste, texture or smell.

Is AFRID different to anorexia and bulimia?

ARFID is different from eating disorders such as anorexia or bulimia, as individuals are not restricting their intake with the purpose of losing weight. ARFID sufferers do not usually have body dysmorphism or employ over-exercising to control their weight.

ARFID involves extremely restrictive eating based on aversions, low appetite or disinterest in eating, whereas anorexia is characterised by an underlying fear of weight gain and extreme psychological distress related to body shape and size.

This is controlled by not eating enough food or exercising too much, or both. Bulimia is characterised by the fear of putting on weight and is controlled by binge eating and then making yourself sick, using laxatives or excessively exercising, or a combination of these, to try to stop yourself from gaining weight.

ARFID usually starts at younger ages than other eating disorders. Unlike anorexia and bulimia, which are more common in girls, boys are more likely to have ARFID. Although ARFID and anorexia are very different from each other, there has been some research into possible links between anorexia and autism.

Research has also shown that it is possible for autistic girls, in particular, to have elements of more than one type of eating difficulty, and for ARFID and anorexia to co-exist in adolescence.

What causes ARFID?

Whilst the exact causes of ARFID are unknown, it is thought that people who develop ARFID do so because of sensory sensitivity, fear of negative consequences or a lack of interest in eating.

For example, they might be very sensitive to the taste, texture or appearance of certain types of food, or have had a distressing experience with food, such as choking, vomiting, infant acid reflux or other gastrointestinal conditions. This may cause the person to develop feelings of fear and anxiety around food, and lead them to avoid food.

ARFID doesn’t discriminate and can affect anyone of any age, including babies, and can be diagnosed in children as young as 2 years old.

Researchers know little about what puts someone at risk of developing ARFID.

They have, however, identified these potential risk factors:

• People with autism spectrum conditions are much more likely to develop ARFID, as are those with ADHD and intellectual disabilities.
• Children who don’t outgrow normal picky eating, or in whom picky eating is severe, appear to be more likely to develop ARFID.
• Many children with ARFID also have a co-occurring anxiety disorder, and they are also at high risk for other psychiatric disorders.

There are many similarities in the eating patterns of autistic people with ARFID and those who have ARFID but no additional autism.

These include:

• Sensory sensitivities.
• High anxiety around food/eating situations.
• Lack of interest in food.

However, in autistic individuals, both children and adults, these issues can be more severe and more resistant to treatment.

A notable contributor to more recent rises in eating disorders such as ARFID is likely to be the impact of the COVID pandemic. COVID lockdowns took a huge toll on people’s mental health, and at the same time health services were placed under significant strain, limiting the support available.

It is not solely the pandemic that has contributed to the rise in eating disorders; however, this is likely to have played a more significant role in worsening societal mental health and reducing health services over this period.

What are the signs and symptoms of ARFID?

Picky eating and a general lack of interest in eating are the main features of ARFID. People with ARFID may not feel hungry or are turned off by the smell, taste, texture or colour of food.

Some children with ARFID are afraid of pain, choking or vomiting when they eat. Many children with ARFID are underweight, but others are normal weight or overweight, especially if they eat only junk food.

Children with ARFID are more likely to have:

• Anxiety or obsessive-compulsive disorder (OCD).
• Autism spectrum disorder or attention deficit disorder (ADHD).
• Problems at home and school because of their eating habits.

Potential signs of ARFID include:

• Avoidance of whole food groups or textures, e.g. fruit, meat, vegetables; slimy and mixed textures.
• Phobias of certain foods.
• Sensitivity to aspects of some foods, e.g. temperature.
• Gagging or retching at the smell or sight of a particular food(s).
• Difficulty being in the presence of another person eating a non-preferred food.
• Having a diet that is limited to usually less than 10 preferred foods or safe foods.
• Lack of interest in eating or missing meals completely, not feeling hungry.
• Attempting to avoid social events where food would be present.
• Struggling to stay and/or eat at a table during family mealtimes; eats only with distraction, e.g. television.
• Interference with day-to-day functioning due to eating behaviour, e.g. unable to eat at school or with peers, needs to take preferred foods when out of the home.
• Needing to take supplements to meet their nutritional needs and where energy intake is impaired.
• Stunted growth in children, not growing in height as expected.
• Severe lack of energy to the point of not being able to cope without a nap during the day.

ARFID may lead to problems from poor nutrition.

Children with the disorder may:

• Not get enough vitamins, minerals and protein.
• Need tube feeding and nutrition supplements.
• Grow poorly.
• Have delayed puberty.
• Become overweight or obese from over-reliance on carbohydrates or energy-dense processed foods.

The lack of nutrition associated with ARFID can cause:

• Dizziness and fainting due to low blood pressure.
• A slow pulse.
• Dehydration.
• Weakened bones (osteoporosis) and muscles.
• Irregular or stopped menstrual periods (amenorrhea).
• Poor digestive function.
• Low quality of sleep.
• Dizziness or light-headedness when standing up.
• Cold hands and feet.
• Hair falling out.
• Brittle nails.
• Low energy and poor concentration.
• Mood swings.

If you or anyone you know is experiencing any of the signs and symptoms of ARFID and/or a significant level of distress around eating, you should seek appropriate medical and psychological support as soon as possible.

You can contact your GP in the first instance who will be able to refer you for specialist treatment. This will prevent any new or further complications and promote better overall health and wellbeing.

Can ARFID be prevented?

Preventing eating disorders such as ARFID is extremely difficult. Eating disorders are serious mental health problems. They can have severe psychological, physical and social consequences. Children and young people with eating disorders often have other mental health problems, for example anxiety or depression, which also need to be treated to get the best outcomes.

Being vigilant to the signs and symptoms of not only the eating disorder but also the mental health issues that may be triggering the eating disorder, will help to identify the problem early so that treatment can be found. Food is one of many mediums through which health issues such as anxiety, depression or obsessive-compulsive behaviours can be expressed.

How is ARFID diagnosed?

Your GP will ask about your or your child’s eating habits and how you or they are feeling, and they will check your or your child’s overall health and weight. They may refer you or your child to an eating disorder specialist or team of specialists.

According to the DSM-5, ARFID is diagnosed when:

• 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/feeding disturbance is not better explained by a lack of available food or by an associated culturally sanctioned practice.
• The eating/feeding disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.
• The eating/feeding disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder.
• When the eating/feeding disturbance occurs in the context of another condition or disorder, the severity of the disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.

How is ARFID treated?

Generally, the first point of contact should be a GP appointment who can then refer to a specialist service where ARFID is best treated. Given that both the behavioural presentation and cause of ARFID are highly unique to the individual, an appropriate treatment should be devised that is tailored to the needs of the sufferer.

There is no standard treatment for ARFID because it is a relatively new diagnosis. Although ARFID is considered a mental health condition, like other eating disorders, it can also have profound physical consequences. Medical treatment for ARFID is needed to prevent long-term health consequences of weight loss and malnutrition.

Some of the options available for treating ARFID include:

• Dietitians.
• Gastroenterologists.
• Medical doctors.
• Mental health clinicians.
• Occupational therapists.

The treatment setting will depend on the severity of a person’s food restriction, their level of malnutrition, and their weight loss. People with severe ARFID may need to be hospitalised or attend residential programmes or partial hospitalisation programmes. Once a person’s immediate physical needs are met and they are medically stable, therapy is often the next step in ARFID treatment.

In many cases, a person with ARFID is engaged in several types of therapy at the same time.

For example:

• Cognitive behavioural therapy (CBT) – This is a type of psychotherapy that is used to treat a wide variety of mental health conditions including eating disorders. In CBT, a trained therapist helps a person learn to identify their distorted thinking patterns, change their thoughts, and ultimately change their behaviour.
• Family based therapy (FBT) – This is a type of behavioural therapy that is commonly used to treat eating disorders in children and adolescents. In FBT, blame is removed from the patient and the family, and the eating disorder is viewed as an external force. Everyone in the patient’s family is treated as a unit that is dealing with the patient’s eating disorder together.
• Occupational therapy – Therapists take a holistic approach to restoring health, wellbeing and functioning through assessment and techniques designed to develop or recover meaningful activities or occupations. Children with ARFID and co-occurring sensory processing disorder, autism spectrum disorder (ASD) or ADHD might work with an occupational therapist in an outpatient therapy setting.

Any form of ARFID treatment, however, should take place under the supervision of a specialist team skilled in treating ARFID. Such a team is usually multidisciplinary and can devise a programme designed to meet an individual’s multiple, unique issues and needs. Without treatment, ARFID does not simply resolve on its own.

Final thoughts

Eating disorders are devastating mental illnesses that affect 1 in 50 people in the UK. Eating disorders Awareness Week is planned for 27 February 2023 – 5 March 2023; follow the campaign on social media using the hashtag #EDAW2023.

It is clear that ARFID is a complex eating disorder and affects people differently. It requires expert support and guidance.

If you or someone that you know is affected by ARFID, there is a variety of support available:

• ARFID Awareness UK offers support and advice to parents and to individuals.
• ARFID Support Group on Facebook.
• National Centre for Eating Disorders – Children with ARFID Family Support Group.
• First Steps – A Specialist Eating Disorders charity.
• Young Minds.
• Family Lives provides targeted early intervention and crisis support to families.