Defining the familiar: the birth of Avoidant or Restrictive Food Intake Disorder

Matt Kempen


Marketing Manager for ACAMH

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Dr Rachel Bryant-Waugh has seen many changes in the 30 years she has spent helping children and adolescents overcome their eating disorders. Among these changes was the 2013 inclusion of a new disorder in the psychiatrists’ bible – the DSM.

The arrival of Avoidant or Restrictive Food Intake Disorder (ARFID) can be used to illustrate the tentative journey – from case study and anecdote, to definition and formal diagnosis – which new disorders take.

ARFID “isn’t a new kid in town”

Speaking at the 2017 Emanuel Miller Lecture and Conference, Rachel introduced the nuances of this familiar but poorly understood disorder.

ARFID “isn’t a new kid in town”; Rachel told a packed room at the Royal College of Physicians in London.

The clinical presentations ARFID captures are associated with an eating pattern that those working in the field will be well-acquainted with – a diet that cannot support a patient’s energy or nutritional needs.

“It is not simply picky eating,”

But absolutely central to a diagnosis of ARFID is that the food restriction or avoidance behaviours are not related to body image concerns – this separates it from bulimia or anorexia nervosa.

“It is not simply picky eating,” she said, going on to outline some common causes of these constrained diets. They include a lack of interest in food, an aversion to the texture or appearance of it, or some form of phobia based on the consequences of eating.

Rachel described how a lack of interest can arise, such as being unaware of having an appetite, or being easily distracted from eating. She paints a picture of sensory aversion, of a young person who might only tolerate food that is crunchy or a recognisable brand, or less commonly, puréed.

Phobic presentations of ARFID make clear just how disruptive it can be to a child’s development and family life. Debilitating fears of choking or vomiting, whether as a result of an illness or a previous medical procedure, can significantly interfere with the child’s psychological development – another DSM diagnostic criterion.

“We’ve recently seen a boy who choked on a boiled sweet in the cinema when he was watching a scary film,” Rachel said, noting the patient was already an anxious child.

The mortal fear he developed could be separated from a conventional phobia by its profound impact on his eating habits – he required feeding by nasogastric tube.

A potentially counterintuitive aspect of ARFID is that patients may present as being normal or overweight – or as being as severely underweight as those with anorexia nervosa. Another feature that stymied earlier categorisations, Rachel said, was that ARFID can present across a range of ages, and is not limited to children and adolescents. As you can imagine – weight is no indication of health for those with ARFID.

“If you exist on a diet that consists solely of biscuits, chips, crisps, whatever it is, you’re going to be lacking in essential nutrients” said Rachel “it can be very dangerous, particularly in children.”

As a member of the eating disorders workgroup for the fifth edition of the DSM, Rachel had a privileged insight into the development of the classification. As a consultant clinical psychologist with 20 years’ of practical experience at Great Ormond Street Hospital, she also knows how treatment can be hindered by a lack of agreed terminology.

Rachel points out that ARFID isn’t actually a new term, but a renaming of the less-specific ‘feeding disorder’ category in the fourth edition of the DSM. “It’s really problematic in terms of trying to develop effective treatments” she said, referring to the familiarity of ARFID-type presentations, but the previously frustrating lack of name to build a treatment pathway around.

She goes on to quote a parent of an ARFID patient at length, who is overjoyed that their toddler’s behaviour will no longer simply be dismissed as a ‘picky eating’. Despite a lack of epidemiological data on the prevalence of such a recently defined disorder, Rachel said her experiences have suggested a higher incidence in males and a longer duration compared to other eating disorders, and that the condition tends to appear at a relatively younger age.

Looking to the future, Rachel explains the need for comprehensive assessments and standardised treatments for the disorder, neither of which exist at the present.

By way of practical advice, she tells delegates who find themselves treating ARFID to “be clear what you are trying to change” whether it is avoidance or restriction, and whether therapist and patient are working on improving the range or amount of food consumed. She also advises practitioners to “select sparingly from existing evidence-based approaches” and use an impact grid and plan steps carefully.

Rachel closed her talk by rallying her audience on the importance of addressing ARFID. “It’s really important to continue to raise awareness” she said “of what remains a very under-recognised and marginalised problem.”

Hopefully some in that audience will carry her words and work forward, helping young people affected by ARFID through their research and clinical practice.

An excerpt of Dr Bryant-Waugh’s talk is available on ACAMH’s SoundCloud.

Discover more articles from The Bridge.

Discussion

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My 22 year old son weighs 9 stone and hasn’t gained any significant weight since he was 15. He has ASD, epilepsy and depression. I’ve always felt that his depression and addiction to gaming take away his desire to eat and even prevent him recognising his hunger. Thank you for this article as it gives me confidence to challenge the GP and hopefully get a mental health referral.

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My son fits this perfectly. I feel partly to blame as for years now I’ve given him what I know he will eat. I’ve tried hypnotism but it doesn’t seem to be working. He gets uoset as he know ge needs to improve but just can’t do it. His list of good is only about 6 or 7 things.
I’m at my wits end. He’s a very clever & sensible boy but just has a ‘block’

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Does anyone know if it’s possible for the reasons for showing behaviour of ARFID to be linked to potential future health issues instead of siting reasons like texture, smell or fear of choking etc. For example “I can’t eat bacon because it will harm my cholesterol and I will have a heart attack”.

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“Does anyone know if it’s possible for the reasons for showing behaviour of ARFID to be linked to potential future health issues instead of siting reasons like texture, smell or fear of choking etc. For example “I can’t eat bacon because it will harm my cholesterol and I will have a heart attack”.

If the fear of future illness is real, then yes it can absolutely be the cause of restricting his foods now.
Sometimes it’s the fear of choking, sometimes of vomiting, but a fear or phobia of anything that makes them restrict their eating can be a factor of ARFID.

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My son is 6 and was diagnosed with coeliac disease when he as 5. Am sure he’s got ARFID as he only eats about 10 things. And no fruit and vegetables. Am very worried about his development and how to help him. We have a wide variety of food in the house and his twin sister and me and my husband eat a wide variety of foods and enjoy food. Is this something a mental health professional could help with?

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Hi Catherine,
Some NHS Trusts offer support for children and young people with ‘Sensory-Behavioural Feeding Difficulties’, through their Speech & Language Therapy (SLT) and / or Occupational Therapy (OT) Teams . Some also offer a more multi-disciplinary team by having a Dietitian and Psychologist on board – but sadly not all Trusts have these resources. Contact your local OT / SLT team or ask your GP to refer you. If your local NHS team do not have a feeding service, you could request referral to a tertiary hospital e.g.: GOSH, Evelina, Birmingham Children’s Hospital are a few.

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My son is 20 and was diagnosed with A typical Anorexia in May of last year following a sustained and rapid weightloss (he went from 12.5 st @ 6ft to just over 9 st in a year.

Throughout this time he has become increasingly more restrictive about the types of foods he eats and can quote their nutristional make up/content/benefit/adverse effects on the body/brain in a way that would rival and impress a dr. Without medical advice (he is sure he knows as much if not more than our gp) he supplements his diet of organic fruit/veg and protein with various vitamins inca magnesium supplements which I believe is causing side effects such as insomnia and extreme fatigue (he struggles to walk up a single flight of stairs) breathless ness and racing heart rate.

I’m so worried about the hold this already has on him. He has been referred to the Maudsley and is 4 weeks into a 20 week treatment plan but I’ve not seen any improvement and I’m not sure they can offer the right treatment if they don’t know the ins and outs of his behaviour. On the rare occasion he will open up he acknowledges that he knows he’s too thin and doesn’t like the way he looks so I don’t know if his behaviour is about weight loss now although I do think that’s where it started. Does anyone have any similar experience?

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