ARFID Avoidant Restrictive Food Intake Disorder

A Guide for Parents and Carers

Rachel Bryant-Waugh

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429662751
• Edition: 1
• Topic: Medicina
• Subtopic: Nutrizione, dietetica e bariatria

ARFID Avoidant Restrictive Food Intake Disorder: A Guide for Parents and Carers is an accessible summary of a relatively recent diagnostic term. People with ARFID may show little interest in eating, eat only a very limited range of foods or may be terrified something might happen to them if they eat, such as choking or being sick. Because it has been poorly recognised and poorly understood it can be difficult to access appropriate help and difficult to know how best to manage at home.

This book covers common questions encountered by parents or carers whose child has been given a diagnosis of ARFID or who have concerns about their child. Written in simple, accessible language and illustrated with examples throughout, this book answers common questions using the most up-to-date clinical knowledge and research.

Primarily written for parents and carers of young people, ARFID Avoidant Restrictive Food Intake Disorder includes a wealth of practical tips and suggested strategies to equip parents and carers with the means to take positive steps towards dealing with the problems ARFID presents. It will also be relevant for family members, partners or carers of older individuals, as well as professionals seeking a useful text, which captures the full range of ARFID presentations and sets out positive management advice.

Chapter 1

What is ARFID?

What is ARFID exactly? What are its key features? Is it always the same, irrespective of who has it? In this chapter we will discuss the characteristics of ARFID, in which we will consider the distinctive nature and essential features of ARFID. It will cover the definition and diagnostic criteria for ARFID in some detail, as well as give examples of how different aspects of ARFID are manifested in everyday life. As this book is primarily intended for parents and carers of children under the age of 18 years, individuals in this age range will be used in the examples. However, do remember that this diagnosis can in theory be given to a person of any age, so that some of the content of the examples might apply to adults with ARFID as well. It is helpful to be fully informed about what ARFID is and what it is not, both in terms of your own understanding of the nature and extent of your child’s difficulties, but also so that you can clearly describe specific areas of difficulty and why these are causing you concern.

If you read the chapter right through, the idea is that should you need to, you will be able to calmly explain that no, ARFID is not the same as normal picky or faddy eating. So many parents and carers describe professionals batting away their concerns with ‘advice’, such as ‘No need to worry, he’ll grow out of it’, or ‘Maybe if you were a bit firmer at mealtimes, it would help’, or ‘You just need to make sure she eats more fruit/vegetables/protein/dairy / [or some food you know your child is less likely to eat than to fly to the moon and back]’. Friends and relatives may also not be the pillars of support you hope they will be. On describing the difficulties they are facing to those close to them, many parents report being told things like ‘Oh yes, mine is just the same, I can’t get her to eat courgettes at all…’, or ‘Let me have him for the weekend, we’ll soon sort this out’, or ‘You’ve always been too soft with them’. Mostly, such suggestions and comments are not intended to be deliberately hurtful or unhelpful, and are for the most part likely to be borne out of a simple lack of knowledge and understanding about ARFID. Being well-informed yourself is the first step in standing your ground, helping others to understand, and doing your best as a parent to ensure your child’s needs are met.

Let’s start with the formal definition of ARFID. As already mentioned, the American Psychiatric Association was the first to put forward diagnostic criteria for ARFID in DSM-5 (APA 2013). In this system, there are four main requirements that have to be met before it would be appropriate for a clinician to give a formal diagnosis. The first is the most detailed and we will look at this carefully. The other three requirements that need to be met are known as ‘exclusion criteria’. This means that they cover things that need to be ruled out, that is, things that are clearly not present. If one or more of these three exclusion criteria is identified, then the person would not be given an ARFID diagnosis.

The first requirement lies in the name ARFID, which as we have seen stands for avoidant/restrictive food intake disorder. There should therefore clearly be a disturbance of feeding or eating, characterised by avoidance or restriction of food intake. This disturbance may be driven by one or more of a number of different factors. In DSM-5, three examples are given, based on well-described and well-documented clinical presentations. The first example is that the avoidance or restriction may stem from a lack of interest; the second example is that it may stem from sensory-based avoidance; and the third example is that it may stem from concern about possible aversive consequences of eating. We will take a closer look at each of these factors, which may be driving the avoidance or restriction of food intake, in turn.

Lack of interest may be present either in relation to eating or in relation to food in general. Some people find it difficult to make time to eat or to remember to eat, either because they are fully engaged in doing more interesting things, or because they simply do not seem to have a very good sense of hunger and appetite. We will look at some of the possible reasons behind this apparent lack of interest in later chapters when we consider correlates (Chapter 2: Who can develop ARFID?) and causes (Chapter 3: Why does someone develop ARFID?). Sometimes low interest seems related to the individual experiencing eating as a chore, or simply not deriving pleasure or satisfaction from food. This can be hard for many of us to understand; mostly, we are very aware when we are hungry and most of us do experience some pleasure and satisfaction in eating, particularly our favourite foods. Solly’s eating difficulties are an example of low interest in food and eating being a main driver for his restricted intake. He would take a very long time over his meals, often ‘pouching’ food in his cheeks, which is a behaviour often seen in children who are not particularly motivated to eat.

Solly is a six-year-old boy who lives with his parents and younger brother. He is a slight child who looks tired and underweight. His parents describe him as a polite boy who is quite quiet at home and at school. Solly likes to draw and colour, and can spend long periods amusing himself playing with his cars. At school, he is said to be well-behaved and does not cause his teacher any trouble. She has noticed that he is rather shy and reticent, rarely putting up his hand and happy to be on his own in the playground.

Solly’s feeding had been difficult from the start. He vomited a great deal from the start and became very unwell. It took a while before his difficulty was diagnosed as pyloric stenosis (a condition in which food or, as here, fluid is prevented from passing normally through the stomach into the small intestine). This was successfully treated by surgery but unfortunately Solly then came down with a nasty chest infection and again struggled to feed. A nasogastric tube was inserted and he stayed in hospital for a while with his mother, who was understandably very worried about him. Over time, she was able to encourage him to take milk and soft foods by mouth and eventually the nasogastric tube was removed. When they attended the clinic with Solly now six years of age, his mother described it as always having been hard work trying to get him to take enough. She felt that he had never been that interested in eating.

Solly struggles with his health on and off, particularly in the winter, being prone to catching minor coughs and colds. When unwell with these, his eating tends to deteriorate and his weight gain overall is only just tracking the lower centiles on his weight chart. He has no other significant medical conditions of note.

Solly’s parents describe trying to get him to eat enough as requiring a lot of effort. He will often put off coming to the table, asking to be allowed to finish playing, or to complete a colouring picture. When at the table he is a very slow eater, often chewing a mouthful for a very long time and sometimes holding food in his cheeks. His mother said that she often has to remind him to swallow so that he will move on to the next mouthful. They are worried that as he grows older he won’t eat enough to keep himself healthy. The family doctor has told them that there is nothing physically wrong with Solly, he just doesn’t seem interested in eating.

The second example of what might be driving the avoidance or restriction of food intake is that it may be linked to the sensory characteristics of food and the individual’s particular response to these. Our senses include touch, sight, hearing, smell and taste. In relation to the sensory properties of food, as well as its taste and smell, these include its texture, temperature, appearance, colour, and the noise it makes when we eat it. People with ARFID may only eat foods of a particular texture, for example only smooth foods, or only crunchy foods. They might find certain textures extremely off-putting, to the extent that they experience disgust, and will avoid these. Mixed texture foods may be refused outright as the tongue and mouth are required to manage a number of different textures simultaneously. Yoghurt or orange juice with bits in, or a sandwich with chicken, mayonnaise and lettuce, are examples of mixed texture foods. Foods that have touched other foods may be rejected as texture has been affected. A roast potato that has had some gravy on one corner or a fish finger with a small amount of baked bean sauce on one end may be completely refused. There can be a high ability to detect even very slight changes in texture, leading to refusal; a chip is too crispy, a piece of toast is too floppy. Some people will only eat foods at a specific temperature; only straight out the fridge, or only foods at room temperature, never having eaten anything warm or hot. Others will refuse anything that does not look right to them; a black mark on a crisp, a broken biscuit, or an unevenly shaped piece of breakfast cereal. Many have a strong preference for preferred foods to be cut or presented in a certain way. If it does not look right it will not be eaten. Colour preferences may also be present, with the most common ARFID diet being the so-called ‘beige diet’. This may include things like biscuits, bread, crisps, potatoes – usually high carbohydrate foods, but all a bland colour. It can be difficult to ascertain if this truly avoidance on the basis of colour, as foods of other colours such as red and green generally have stronger flavours. Beige foods generally tend to be less challenging in terms of palatability. However, it is certainly the case that if you present a true ‘beige-eater’ with a food of a different colour, this will usually be refused on sight. Some people will describe rejecting food because of the noise it makes when they bite or chew it, or when others eat these foods, preferring to stick to softer foods that do not cause distress in this way. Sensitivity to smell and taste is often extreme; many people with ARFID can be thought of as ‘super-sensers’ or ‘super-tasters’. They can detect the tiniest variations in taste which makes trying to sneak something into their preferred meals perilous (see further Chapter 5: What can I do?). They may avoid certain environments, like the school dining hall or even family mealtimes because they can’t manage the smell of food and some will carefully smell everything before they put it near their mouth. Kai’s story is not untypical.

Kai is eight years old. He is an only child who lives with his mother and grandparents. Kai’s father is not present in his life; his parents were not in a relationship when his mother became pregnant and she now has no contact with his father. Kai is described as a stubborn child who knows what he likes and prefers to be in charge. He is a much loved child and is particularly attached to his grandfather, who dotes on him. Kai’s mother finds his behaviour difficult to manage at times as he is so strong willed. Kai is quite a big child for his age and there is no concern about his weight or growth.

Kai is very sensitive to smell and will often comment on the smell of something. This can be anything and anywhere and is not restricted to food. Kai’s mother said that at times this can be embarrassing, giving examples of Kai making loud comments about not liking how somebody smelt on the bus, and complaining about the smell of another child’s house when invited to play. He wasn’t invited again. His mother and grandparents have tried to make a positive thing of this by telling Kai that he is like a police sniffer dog. Kai would like to be a policeman when he is older and so is not offended by this. He thinks his ‘sniffing powers’ might come in handy.

Kai’s mother and grandmother describe increasing difficulty with making sure he is eating properly. Kai puts everything to his nose to smell it before eating it. He will often put something to one side saying it does not smell right. He tends to like bland foods and eats a lot of carbohydrates. Kai’s mother said she has had to stop cooking certain things for herself and her parents because Kai complains so much about the smell. The family is unable to go out to eat in all but one pizza restaurant as Kai will complain about the smell of cooking or other people’s food.

This has also been a problem at school. Initially, when Kai started in the Reception class, he took in a packed lunch and was allowed to sit away from the dining hall to eat it. He is now eight years old and his teachers feel he should be integrating more with his peers. They have noted that his social interactions are already quite limited. This, combined with a very limited diet, is causing his mother a great deal of concern.

The third example of what might be driving the avoidance or restriction of food intake seen in ARFID, is that it may be related to a concern about unpleasant or feared consequences of eating, for example, thinking ‘if I eat this, something bad is going to happen’. The something bad could be related to a fear of vomiting or choking, worry that it will lead to nausea, discomfort or abdominal pain, or simply a worry that I won’t like it. In your quest to find out more about ARFID, you may have come across the terms ‘neophobia’ or ‘food neophobia’. This simply means a fear (phobia) of new (neo) foods. When you talk to some people about why they won’t try things outside their comfort zone, some will be able to state clearly what the reason is. However, many will struggle to come up with anything specific and will usually end up concluding that the possibility that they won’t like it is sufficient to put them off completely. Food neophobia can in this way be considered an example of avoidance driven by concern about aversive consequences. Other examples of avoidance of food intake stemming from fear or concern, can be found in those people who may have been frightened by an aversive experience (for example, a choking incident, such as in Emmie’s case below), or those who have had a medical condition associated with discomfort, such as in Jake’s case (also below).

Emmie, aged nine, had been excited to go to the cinema with her mother and best friend Layla. The girls had asked to see a film their classmates had been talking about. However, the day before the planned trip, one child had said that the film had a very scary part and Emmie had been worried about this. Emmie usually felt braver after talking with her father in particular, when she voiced any worries and fears. On this occasion he was away on business, and so she came down to talk to her mother when she struggled to get off to sleep. She never really liked it when her father was away and although she felt somewhat reassured by her mother, she continued to worry that the film would be very scary.

On the day, Emmie seemed happy to see Layla and they settled into their seats, each with a bag of sweets. All seemed to be fine, until at one point in the film there was an unexpected bang, which caused Emmie to inhale and a sweet to go down the wrong way. She started to retch and panic and her mother rushed her to the door of the cinema with an upset Layla in tow. Emmie coughed up the sweet as they reached the door and started crying loudly. This made Layla cry as well and Emmie’s mother to become somewhat cross about the fuss. Emmie was clearly terrified and refused to go into the cinema saying that she had nearly died. After trying for a while, Emmie’s mother gave up and took both girls home.

Over the subsequent weeks Emmie displayed significant and mounting anxiety. In particular she was initially very on edge at mealtimes, paying attention to every sound and jumping up if she thought she heard anything untoward. Her parents became increasingly frustrated with her, having done their best to try to reassure her to no avail. They became even more concerned when Emmie started to reject all chewy or solid foods; she felt that she wouldn’t be able to swallow these quickly and easily in case there was a noise. By the time they came to the clinic, Emmie was avoiding a large number of foods that she had previously quite happily eaten. Her diet had become very limited and her weight had dropped. She looked miserable and unhappy and her parents felt at a loss to know how to get her back to her old self.

Jake was 11 years old and had recently started secondary school. He was an active, friendly boy who had done well and been popular at his local primary school. He had found the much larger secondary school somewhat daunting, but by the start of his second term there, was beginning to feel more settled. Unfortunately, towards the end of January there was a small outbreak of mumps in the school and Jake was the youngest of the pupils to come down with it. Mumps is a notifiable disease and the school and local health care providers took the necessary action. Although Jake had had his vaccinations, it was explained to his parents that sometimes the second dose can fail, and a small number of people develop mumps despite being fully vaccinated. Jake had really been quite poorly with it and had experienced a lot of pain and discomfort when eating. He had missed quite a bit of school and when he returned, again felt quite overwhelmed by the size and unfamiliarity of the environment. He became much more subdued and developed increasing caution around what he would eat. He was clear that he felt some things might be too difficult to chew or hurt his throat and he didn’t want to risk this as everything had been so horrible when he had mumps. When he attended clinic, Jake was restricted to eating well-cooked pasta and smooth soups. When these weren’t available on the school lunch menu, he wasn’t eating anything.

A brief word is perhaps in order here, about what is sometimes referred to as ‘brand specificity’. This is when the person will only eat one particular brand of something: for example, they might only accept one brand of boxed oven fries and refuse other types of chips. They might restrict themselves to one flavour of one brand of yoghurt only, or in the case of a child with ARFID, they might become stuck on one brand of a particular baby food jar that they have never moved on from despite this no longer being at all age-appropriate. Many parents of children with ARFID will be familiar with this particular variant of brand loyalty, and even more familiar with the sense of dread should the manufacturer change the packaging. Even small changes in wording or appearance of the label or lid can result in refusal. Why is this? Is this driven by sensory preferences or it is driven by fear-based avoidance? It seems most likely that in many cases it is a combination of the two, and related to branded, mass-produced, packaged food being consistent and therefore predictable. The food of the preferred brand is likel...