Avoidant Restrictive Food Intake Disorder in Childhood and Adolescence

A Clinical Guide

Rachel Bryant-Waugh, Claire Higgins, Rachel Bryant-Waugh, Claire Higgins

• Publisher: Routledge
• Year: 2020
• ISBN:
  9781000032819
• Edition: 1
• Topic: Psychology
• Subtopic: Abnormal Psychology
• Index: Psychology

Avoidant Restrictive Food Intake Disorder, more commonly known as ARFID, is a relatively newly introduced diagnostic category. Research in the field, although growing, remains limited, with clinical knowledge and expertise varying across clinicians. There may be uncertainty how to correctly identify and diagnose the disorder as well as how best to direct treatment.

This clinical guide sets out to be a trailblazer in the field, providing up-to-date information and comprehensive clinical guidance on ARFID in childhood and adolescence. Chapters in the book are divided into five sections, the first focussing on the importance of attending to the perspectives of those directly affected by ARFID. Three subsequent sections cover diagnosis and presentation, including chapters on aetiology, epidemiology, assessment, and outcome measures; clinical assessment, including psychological, family, nutritional, medical, and sensory components; and management, discussing nutritional, medical, psychological, and wider system approaches. The final section discusses prognosis and outcomes, and considers future research directions.

This clinically focussed book, with contributions from a multi-disciplinary authorship, is intended to function as an accessible, practical guide, and reference resource. It includes summaries of available evidence, with related recommendations for clinical practice. The advice and suggestions included will assist clinicians in targeting their attention appropriately, to ensure that children, adolescents, and their families receive the best possible care.

Part I

Perspectives

Chapter 1

Young people’s perspectives

Louise Bradbury

Introduction

This chapter considers a range of aspects of the experience of children with avoidant restrictive food intake disorder (ARFID) and their difficulties with food, eating, and accessing help. At the time of writing there are no published research studies reporting on, or seeking to understand, the lived experience of children with ARFID. Similarly, only one paper to date has explored the experiences of adults identifying as picky eaters (Fox et al., 2018). Whilst there are several qualitative studies investigating the experience of care in young people with other eating disorders such as anorexia nervosa and bulimia nervosa, there was no inclusion of those with a diagnosis of ARFID even in the most recent of these (Mitrofan et al., 2019). An earlier literature review of research on patient perspectives of treatment of eating disorders predominantly focussed on anorexia nervosa, however this was carried out prior to the introduction of ARFID as a diagnosis (Bell, 2003). Therefore much of what we know about the day-to-day experience of those with a diagnosis of ARFID and their experience of the treatment they have received is gleaned from clinical contact or obtained informally.

When considering the definition of evidence-based practice in developing treatment for young people with a diagnosis of ARFID, it is important to integrate the key components of patient values and preferences alongside clinical expertise and research evidence (Sackett et al., 1996). Qualitative research into young people’s perspectives of their mental health difficulties can be particularly helpful in this respect, and going forward should be taken into account to appropriately develop and improve services to fit the needs of those who access them (Buston, 2002). The importance of patient perspectives provides the rationale for opening this book with a chapter addressing this topic. Chapter 3, which addresses information from qualitative research, will further highlight the importance of hearing about the young person’s experience of their difficulties.

It is clear from working clinically with children with a diagnosis of ARFID that they often appear to find it very difficult to express how they feel about their situation, and many struggle to offer details about their experiences of being asked to eat. Many are unable to articulate their thoughts and feelings about this. Often the impact of ARFID can only begin to be understood through starting to work on the associated difficulties and observing how these affect a child. It is therefore somewhat challenging to capture the viewpoints of children with this diagnosis, highlighting the importance of sharing what is known and understood from experiences in a clinical setting.

In seeking to obtain more detail to inform the content of this chapter, a group of children with a diagnosis of ARFID were approached informally to talk about their experiences. The views and experiences described here were collated from these discussions, as well as from clinical experience of working with children with ARFID. The quotes woven throughout the text attempt to convey recurring themes derived from those sharing their views. These perspectives have been set out to illustrate the experience of the treatment journey of a child with a diagnosis of ARFID, beginning with them accessing services, and subsequently setting out their experience of the assessment process, including their goals and hopes. This is followed by discussion of their experience of treatment, and their observations about the impact of ARFID on their day-today lives.

It is important to note that experiences are likely to differ between individuals, and that the information presented here is not designed to be exhaustive or necessarily representative of the wider population of people with ARFID. The majority of the perspectives shared here are from boys, with the age of the individual concerned placed in brackets alongside a pseudonym. The aim is to give some context to experiences of ARFID at different stages of childhood. All views represented here have been given with consent and are anonymised to respect confidentiality. This chapter does not attempt to explore parent and carer views and experiences, as these are discussed in Chapter 2.

What is it like for a young person to have ARFID?

Any one child’s experience of ARFID is likely to differ from another depending on several factors such as their history, functioning, and family background. In addition to this, their experience may be influenced by whether their difficulties with eating are based on their sensory issues, concerns about the aversive consequences of eating, or as a result of their lack of interest in food.

Whilst many children in clinic may struggle to say what it is like to experience a diagnosis of ARFID, some may simply say it can feel as though there is nothing that can be done to help them,

You don’t want to have it but you’ve got it, so that’s it really.

(Matthew, 8)

Others, who are able to say a little more, will highlight a multitude of overwhelming concerns in relation to food, for example,

It might not even be the type of food, it could just be the way it’s cooked. It could be that if one little thing is different, then I want to throw it away. Sometimes it’s the look, sometimes it’s the texture, sometimes it’s the taste. Most of the time it’s my brain telling me I don’t like this and I won’t go near it.

(David, 11)

For many, the feelings associated with confronting their difficulties with food are extremely powerful, and can generally be inferred by witnessing the observable features of anxiety that appear when you present a child with a feared food. Alex (10) was able to express that

… it looks like a monster to me. All the foods that I have not been able to try before seem like a big monster.

and most strikingly for Alex,

Trying food is so overwhelming it feels as though I am being stabbed.

For many children who can’t articulate exactly what it is like for them, sometimes an understanding of their experiences can be gleaned through other means. One young boy conveyed the distress and disgust he experiences, through demonstrating this within a computer game in a session. In this game the child was challenged with feeding a character some dinner made from a selection of unpleasant ingredients. If the food was deemed too revolting the character would turn green, vomit, and pass out on the floor. The comments made after playing the game were an indication of what ARFID was like for this young boy when he said:

You see that, that’s exactly how I feel when people ask me to eat something.

(Craig, 9)

For this child, the image on the screen appeared to accurately convey the feelings of disgust that he had towards food which he found almost impossible to convey in words.

The assessment process

Children with a diagnosis of ARFID often appear unsure about why they have been brought for an assessment or clinic appointment, with almost all saying that they had not known what to expect from the process. Many are terrified attending the clinic as they have the idea that the process might involve them being asked to try and eat something during the appointment. It is apparent that not being asked to do so initially, is extremely important in allowing them to build up trust and takes away some of the pressure. Nevertheless, anxiety levels are generally spoken of as very high at the outset of the process:

I was scared and my anxiety was through the roof. I thought – I don’t want any help.

(David, 11)

However, in David’s case, this progressed to:

… after a few sessions I became more confident as I learnt about more tips to help me, which made coming for treatment feel worthwhile.

(David, 11)

For others, a complicated referral pathway has been followed before attending a service specialising in treating ARFID:

It was just another appointment, I’d already been to so many by that point in my life.

(John, 16)

Seeing a range of different professionals before getting to what was felt to be the right place for help was echoed by many, and can add to the perception of not feeling understood. John also spoke about his journey through the process admitting that:

At first I found it dull, but eventually I grew to understand why I was coming and began to enjoy taking time to discuss my eating.

(John, 16)

Hopes and goals for treatment

Children and young people may experience high levels of ambivalence about making changes to their eating behaviours, and, in turn, this can create some difficulty in establishing shared goals for treatment. Some children bring a range of different ideas, with some explaining that they want to “fit in” and be like everyone else, or just hoping to be “normal”. This often becomes more apparent as children grow older and the difficulties associated with ARFID start to have more of a social impact. Birthday parties and other social events involving eating are often perceived as impossible to attend due to the food that is present, and the absence of foods or circumstances that allow the child to eat in their preferred manner. This experience of not fitting in or being different to peers can motivate some children to want to make changes so that they do not miss out. For many children their difficulties with eating can significantly negatively impact on a range of activities such as their attendance at school, sleepovers, school trips, holidays, as well as visits to relatives.

On the whole, relatively few younger children identify improved physical health as a motivator for engaging in treatment, despite the level of concern that is likely to have been raised by their parents. Some boys may identify wanting to “get stronger” or to grow taller; however, motivation relating to health and wellbeing seems to become more apparent when children approach adolescence. Younger children who do express some concerns about their health may have been influenced by listening to concerns expressed by their caregivers or by something they have learned about at school. Some may start to associate “not eating proper food” with being ill and vice versa. Comments made by others about appearance can also influence children as some might speak of wanting to be “a healthy weight so that everyone will leave me alone”. This suggests that for these children a primary motivation to change may be in relation to reducing the level of conflict present in their interactions, rather than a primary concern about required weight status.

The experience of treatment and trying new foods

When talking about their experiences of treatment and describing what it is like to try and eat something new and potentially experienced as terrifying, most children will firstly highlight the importance of the choice of food to try. Some speak positively about the concept and process of “food chaining”, confirming that it is best to pick something with a “similar taste and a similar look”. In fact, this idea is echoed by many children who give examples of picking foods such as:

… different types of chicken nuggets which are kind of like the ones I already eat, so they are a bit less scary.

(Matthew, 8)

For others, food selection is all about choosing something that really matters to them; for example:

Trying a burger seemed like an ok idea because we talked about needing to be able to eat something when I go on my camping trip which I really want to go on.

(Natalie, 10)

When increasing the variety of accepted foods is not really the child’s goal, focussing on a food that could facilitate something they really want to do can be highly motivating. For these children, picking a food such as the burger in Natalie’s example, provides them with a far greater rationale for challenging themselves.

One aspect of a child’s treatment for ARFID may include elements of “tasting times”. The thought of this process can be accompanied by a variety of feelings, for example:

When I come to...

Table of contents

• Cover
• Half Title
• Table of Contents
• Endorsements
• Title Page
• Copyright Page
• Author’s biography
• Preface
• Acknowledgements
• Part I: Perspectives
• Part II: Diagnosis and presentation
• Part III: Assessment
• Part IV: Management
• Part V: Progress and future directions
• Appendix: What Matters to Me?
• Glossary
• Subject index