Reflect

Experts note that the reasons for this surge are numerous and complex, but they seem to include a heightened national interest in losing weight during lockdowns, the interest in food and exercise that followed, and the denial of social connection during that period for many young people within the age range most associated with eating disorders. Research by Professor Tracey Wade has also found that social media may play a role, and that the more time that young people spend scrolling on social media, and the more social media accounts that they have, the greater the likelihood of disordered eating behaviours and thoughts.

UK charity Beat Eating Disorders estimates that 1.25 million people in the UK have an eating disorder. Eating disorders most commonly affect adolescent girls and young adult women between 15-35, but they don’t discriminate, and cases in boys and men are also rising. 1 in 25 females will suffer with bulimia nervosa and 1 in 150 females will suffer with anorexia nervosa in their lifetime - conditions that we’ve likely all heard of. This year, Eating Disorders Awareness Week focuses on a lesser known condition which has only recently appeared in diagnostic manuals and which is not yet included in the UK’s NICE guidelines for the treatment of eating disorders; Avoidant/Restrictive Food Intake Disorder (ARFID). ARFID is characterised by food restriction, but unlike anorexia nervosa or bulimia, it is not driven by concerns about body shape or weight.

People with ARFID eat a very limited amount and a very limited range of foods (often less than 20). Sufferers often have sensory concerns around taste or texture which mean that they feel safer eating foods that they know. Often, these are prepackaged and processed foods, because they are significantly more predictable than fresh foods, which are much more likely to vary in taste, appearance and texture. Many people with ARFID have had scary or distressing experiences when eating, such as choking, vomiting or abdominal pain, which can lead to feelings of fear and anxiety around eating and the avoidance of certain foods. Others lack appetite, feel full quickly or find eating a chore rather than a pleasure.

ARFID can be present on its own, or it can co-occur with other conditions; most commonly anxiety disorders, autism and ADHD, as well as a range of other medical conditions. An ARFID diagnosis would not be considered if the food restriction is linked to a medical or psychiatric condition that results in loss of appetite (such as depression that might lead to reduced food intake), problems with weight that are related to body image, weight or shape concerns, or feeding issues relating to food scarcity, cultural or religious rules.

Whilst the condition is not caused by a concern with weight, children with ARFID may be underweight or not grow well, may have vitamin or mineral deficiencies and, in some cases, they may require oral supplements or nasogastric feeding. Alongside physical health problems, ARFID can have psychosocial and emotional impacts. Children may be very anxious at mealtimes and may not be able to tolerate eating in different environments away from home or at school. They may struggle in social situations with family and friends around food, so day-to-day functioning and relationships can be negatively impacted. Research shows that people with eating disorders report having smaller friendship groups than the general population. Social networks can narrow down, often getting smaller and smaller over time.

Sometimes, people with ARFID are labelled as simply ‘fussy’. This is far from the case. The Eating Disorder Awareness Week website uses the story of Joe to explain what the condition is and how it affects those who suffer from it. You can watch the video here. Joe explains that, “We’re not fussy. We don’t choose to avoid or restrict food. Some of us can’t stomach tastes and textures. Some of us are afraid we might choke. For us, every bite can be a battle.”

Motivate

Paola gave us numerous tips that will help any parent or educator supporting a child with an ARFID diagnosis. First, it’s a vital step to recognise that whilst it may be hard to understand why they aren't eating, simply telling a child with ARFID to eat won’t work and is likely to add to their anxiety around food. Instead, it is important to validate their concerns. This doesn’t mean agreeing that they don’t eat, but it does mean letting them know that you understand that eating is difficult for them and offering your help and support. Try to seek an understanding of what it is that they find difficult with food. Are their issues related to the smell, texture, or taste or food, or lack of hunger?

Whilst it’s natural to want our children to eat a varied and nutritious diet, for some, it’s just not that easy or simple. Paola advises that children with ARFID should be offered their preferred or safe foods, noting that for people with a very restricted diet, food is food and any food that they will eat is critical for survival. A lack of appetite can actually be caused or exacerbated by eating too little. Not eating enough can decrease stomach capacity, making us feel fuller, sooner, even though we aren’t getting enough nutrients. Whilst we might not really want our children to consistently eat foods that we would normally consider to be unhealthy, when we are dealing with an eating disorder, we have to think differently. By allowing them to eat more of their preferred foods, their appetite can be given the chance to grow.

It’s important to consider eating schedules and routines. Try to keep eating times consistent. Having a clear understanding of what happens at certain times each day is helpful for most children, but especially for those who don’t feel hungry. Parents and school staff can then prompt them when it is time to eat and invite them to be part of the meal. Role modelling healthy eating habits by sitting down to eat together as a family can encourage food exposure and allows children to see you eating well. When children are not yet ready to engage in other strategies, this is particularly vital. Try, where possible, to expose them to different foods. This does not mean expecting them to eat something immediately. It might mean sitting at the table whilst the rest of the family eats a different meal. It might mean looking at a different food, smelling it, or being engaged in the process of cooking, even if they don’t touch it.

Paola made it clear that any attempts to broaden children’s diet must be done with their agreement and input. She told us that food exposure can’t be done to children; it needs to be done with them. Their own motivation is vital in expanding their range of foods. Hiding foods that they don’t like in foods that they do is not an advisable strategy. Instead, once children are in agreement, there are plenty of clinician-recommended palate broadening strategies that you can try at home. For younger children not yet ready for the cognitive work required for food-related strategies, simple messy play is helpful and can get them more comfortable with touching different textures.

A more direct strategy called ‘food chaining’ involves taking a food that your child likes and slowly changing it with subtle variations until they can tolerate a new food. For example, they might eat a particular type of potato crisps. To expand the variety, you might change the brand. Once the new brand is tolerated, you might move to vegetable crisps. After this, you might try air fried vegetables. The crucial thing is to make each change small and incremental. Paola also suggests spicing things up by adding preferred spices, sauces and condiments when introducing new foods. It’s also worth trying to vary the presentation and cooking method of the same foods. Take a carrot. Why not try cutting it differently, grating it, mashing it, freezing it, cooking it for more or less time, or making a soup. Be imaginative! Sometimes, thinking outside the box can be beneficial. Keep an open mind to unusual food combinations. Paola gave the example of one child who found that they enjoyed eating avocado with honey and salt. Not a classic combination, but it opened up a new food to them and they liked it! Do remember that none of the strategies recommended by Paola are quick fixes. Expanding children’s accepted foods is a long journey, but with time, dedication and the right treatment, things can and do improve.

If your child is experiencing issues with food restriction, try to keep open communication with their school and any specialists involved. Sometimes, children’s eating patterns at home are not the same as those at school and it’s important to get a full picture. Schools can support children with ARFID by providing a quiet eating environment where possible. The dining room might be too noisy, crowded or smelly. Remember though, some children might not want to be marked out as different, so it’s best to make any changes in discussion with the individual child.

Support

There are many useful lists of common eating disorder symptoms available online, but some more unusual behaviours to look out for could include eating vicariously (for example, a sudden passion for cooking or food on TV, but where your child doesn’t eat it themselves), signs of distress around food during holidays or time away from home, sudden changes in diet, an obsessive need to exercise or talking about health and fitness a lot. Any weight loss needs investigating quickly and acting fast is important. When thinking specifically about ARFID, Paola told us that, within the UK, treatment services vary by area. Your doctor will be able to decide what kind of referral is appropriate, whether that is to an eating disorder team, a dietitian or a paediatrician. It’s important to note that because ARFID can present in various ways, assessment and treatment for the condition is multidisciplinary and isn’t carried out by only one kind of clinician. Assessment might involve blood tests for mineral or nutrient deficiencies, psychiatric or psychological assessment and occupational therapists. Once a diagnosis is in place, then a treatment plan will be considered.

When visiting your doctor, experts advise that you go armed with notes which list your child’s symptoms, along with some anecdotes. This might include what they ate and drank yesterday or that week, foods that they refuse, their levels of exercise, physical and psychological changes, or the kind of things that they talk about. Be clear that you think they are in need of help and ask for an immediate referral. If your child resists medical intervention, it’s important to be firm, persistent and compassionate. Stress your need to seek advice and that you are worried about them.

Remember that eating disorders are greedy. They take huge amounts of energy and time for the child with the illness and their whole family. Be mindful of the impact this may have on siblings, who are likely to be worried and who may seek to hide their own problems, for fear of adding to the family plate. In an evidence review, one of our former researchers of the month, Anya Heneghan found that an “eating disorder (ED) impacts many areas of siblings’ lives, how they view themselves and the world around them, causing immense disruption, intruding on daily living and schoolwork”, and that significantly higher levels of depression were found in children who have a sibling with an eating disorder. Ensure, as best you can, that siblings have opportunities for joy and fun, and make sure that you send the clear message that you are emotionally available for them too. Don’t be afraid to draw on your support network for help.

Your child may have a friend suffering from an eating disorder and this too can be challenging. In a podcast interview, Dr Amy Harrison, clinical psychologist and eating disorder expert, told us that people with eating disorders tend to be very sensitive to any perceived criticism or social threats. It's likely that friends will accidentally offend or upset them at times. If this happens, remind your child that it’s normal and that they are doing their best to support them. It’s advisable that they avoid conversations about food which could make their friend feel under the spotlight and that they realise how the best thing they can do is sustain normal interactions. Keeping their friend involved in social scenarios by exploring how certain situations could be made easier for them is a great idea. You could nudge them to find out what strategies might help. Remind them that if they are worried about a friend, it's ok to tell someone. Talking to a teacher or parent is a good thing!

There are many excellent resources available online to help families that are navigating this testing experience. Paola and her colleagues have created a briliant free resource which consists of online modules about ARFID, disordered eating and body image, for children and young people, as well as parents and professionals. It includes numerous practical strategies (including some of those outlined above) and we highly recommend that anyone wanting to learn more should visit the NHS Be Body Positive website and check it out. The website also contains links and references to numerous further sources of support. Paola also recommends Rachel Bryant-Waugh’s guide to ARFID for parents and carers, which covers frequently asked questions, as well as Cheri Fraker’s book on food-chaining.

If you’d like a reliable video to share with young people who are supporting friends with eating disorders, check out this short film. The F.E.A.S.T. website contains useful advice for family and friends of people with an eating disorder and would also be helpful for school staff. Oxford CAMHS has produced a useful resource for parents about supporting siblings when a child has an eating disorder. Find it here. If you are UK-based and need immediate advice, the eating disorders charity, Beat, operates helplines which are open for advice 365 days of the year, from 9am – midnight on weekdays and 4pm – midnight on weekends and bank holidays.

Supporting a child with an eating disorder demands courage, strength, vulnerability, reflection, enormous stamina and self-compassion. The commitment to keep going through the lengthy journey of supporting a child with an eating disorder is anchored in unflinching love and concern. Remember to look after yourself too.