Luka and the Food Cloud (ARFID Book Review)

When this new book, Luka and the Food Cloud: A story about ARFID, turned up on my doorstep, I wasn't prepared to find out I would love it as much as I do!

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The book's main character is neurodivergent and the story is that "Luca loves judo, video games, and his guinea pig, Bruno. And he really wants to go to his first ever party – but what about the food there? Luca has ARFID (avoidant restrictive food intake disorder) and eats only a very small number of foods. If he can get help with his ARFID, and more important, if other people learn to accept that he eats different food from them, will he finally be able to go to the party?"

I understand some of the added stress that limited food intake can cause parents. Over on my Facebook page I have occasionally shared details of what our younger daughter eats, and those posts always prompt lots of replies from other parents who are struggling. Sasha has eaten the same eight foods every day, for the last six to eight years. There are some food items that she used to eat when younger that she won't even try any more. But she is healthy and happy so I try not to worry too much about it. I have never called her fussy or picky, but those are terms she uses herself, to describe her eating. I think Pathological Demand Avoidance (PDA) and the 'can't not won't' phrase is relevant when it comes to this topic; she would like to be eating a wider range of food like other people, she thinks she should be able to, but she just can't bring herself to eat new foods. At certain times over the last few years she has agreed to 'taste tests' but this has happened rarely and usually the most she can bring herself to do is lick a new item or take the tiniest nibble. And then the new food gets rejected. So for now she is stuck in a repeating food pattern.

This image below is one page of the book - I wanted to show how gorgeous the illustration in the book is, and how this also expresses some of the thoughts and feelings that can happen when some children sit down to eat:

ARFID Awareness UK is the UK’s only registered charity dedicated to raising awareness and furthering information about Avoidant/Restrictive Food Intake Disorder. They describe ARFID as 'more than just 'picky eating' and explain that Avoidant/restrictive food intake disorder (ARFID) is a relatively new term, that was introduced in 2013 when it first appeared in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013). It has also previously been known as Selective Eating Disorder.

ARFID is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity (eating small amounts). Avoidant and restrictive eating cannot be due to lack of available food, or cultural norms (e.g. someone who is fasting or chooses not to eat certain foods for religious or cultural reasons alone).

ARFID is different to other restrictive eating disorders in that:

• ARFID isn't affected by a person’s beliefs about the size and shape of their body.
• Someone with ARFID doesn't restrict their food intake for the specific purpose of losing weight.
• ARFID doesn’t feature some of the other behaviours that can be associated with anorexia, bulimia, or OSFED, such as over-exercising.

The author of Luka and the Food Cloud kindly offered to share with me her process and research behind creating this book. Clare knew the book would be very important for the community of ARFID children and parents:

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Hi, I’m Clare and I’m so excited to announce our new book: Luka and The Food Cloud (a story about ARFID) written by me, Juliet Clare Bell and illustrated by Dave Gray (Pomelo Pip, 2023). 

Before writing the story, Dave and I worked creatively with a number of young people with ARFID and helped them create their own illustrated stories (which involved superheroes and talking cats and we never mentioned ARFID at all -except where it was brought up specifically by an older child). I then interviewed, at length, 45 people with ARFID, or whose child has ARFID. This enabled us to write and illustrate a more authentic story. I also interviewed those working in the field of ARFID, including three senior researchers at DeMontford University; Dr Gillian Harris, a consultant clinical psychologist working with families and children with ARFID for 40 years, and volunteers at ARFID Awareness UK. I do not have ARFID, but I am, and many of my family are, neurodiverse, and there are a number of people with ARFID/suspected ARFID in the family.

The overwhelming feeling from the family/personal interviews was that people wanted to see a book that would help others (usually adults) understand what it’s like to be a child with ARFID and to encourage those adults to hold back on comments and opinions and not shame the child or make them feel uncomfortable for having a different relationship with food. The interviews were often emotional and I feel incredibly privileged to have spent so much time with such remarkable and resilient people. We are also extremely grateful to some of those interviewed who additionally drew representations of their relationship with foods, and also checked that the words and illustrations weren’t distressing in our early book drafts. Each child with ARFID is different, and one story could not possibly represent every child with ARFID, however I hope that we have honoured them all in our book -although any mistakes are entirely our own.

Most of my books are traditionally published but Dave and I have worked on three books where we’ve been funded to work with young people with specific challenges (long term sickness, sibling bereavement and now ARFID). For this book, we were commissioned by Drs Helen Coulthard, Vicki Aldridge and Maxine Sharps at DeMontfort University, whose research is in ARFID and in eating behaviours, and the funding was from a Higher Education Innovation Fund grant in 2022. We’d like to thank Nicole and Stacey at ARFID Awareness UK for recruiting people for the project, and Gillian Harris for her interview and for providing feedback on an early draft and for co-writing the information in the back of the book with Helen Coulthard. Our biggest thanks go to all the people with ARFID and whose children have ARFID that were part of the project.

The book is available from Amazon and all profits will be used to carry out research and support resources for individuals with ARFID and their families. It was written for 7-11s but we’ve had lots of positive feedback from older children, teens, families and adults with ARFID, too.

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This is a beautiful book and I think it could help many children understand themselves better. It's also great to help educate their peers and other people who come across individuals with these kinds of feelings regarding food. Available now from Amazon: Luka and the Food Cloud.

Our book, PDA in the Family, is out now! We wanted to help other people understand more about Pathological Demand Avoidance and the book was one way of doing that. It's an account of our family life since the day we were told our younger daughter is autistic. It covers diagnosis, the subsequent lightbulb moment we had when we heard about PDA, education, relationships and more.