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.
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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.
I’m so glad you found this article useful, Dr Bryant-Waugh also spoke at our Emanuel Miller Conference last year and we have a clip of her talk available if this is of interest: https://soundcloud.com/user-664361280/rachel-bryant-waugh
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’
Hi Louise, I’m so sorry to hear that, you can find more information on ARFID from Beat Eating Disorders: https://www.beateatingdisorders.org.uk/types/other-feeding-disorders/arfid
They also offer a variety of support services such as helplines and support groups which might be able to help: https://www.beateatingdisorders.org.uk/support-services
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”.
“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.
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?
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.
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?
Thank you for writing this article. I’m a 31 year old female and have always been made to believe I’m just fussy, now I know differently and it changes a lot of things.
I’m a 33-year-old male, and this is me. I’m currently in CBT to try and tackle my lifelong eating disorder and after 33 years I believe I can put a name to what I have. Thank you.
Wow I’m nearly 47 and this fits me to a T. I have had food issues such as texture since I was a young child but choking on a fish bone at aged 15 set me on a path with good issues. I have had behavioural therapies twice due to general and anxiety over foods and choking. I just manage to maintain my weight in the ok category but to be honest I eat very little, I don’t feel hungry so only eat cause I have too and generally stick to safe foods and it also takes me more than double the time of a normal person to eat my meal. This so make sense to be now but I do worry about my general health due to lack of vitamins and mineral cause of my poor diet and lack of food.
I am a 42 year old female, who has been diagnosed as anxious and depressed since I was 19. I have had severe iron deficiency for nearly 10 years and now starting to have liver issues as a result of my “picky eating habits”. I am a texture base eater and have suffered emotional trauma from having food shoved into me as a child. I have never identified with an Article as I have with this. It seems to explain so much about me. Thank you!
I’m 23, and I was diagnosed with ARFID in April by my nutritionist. I’m on the chunky side, so I’m trying to find a way to explain this to my parents- they don’t really believe I have this because of my size. My nutritionist has also talked to me about Anorexia, and when I brought that up to my mom, she had the same response. I’m just trying to find a way to explain that not everyone with an eating disorder is small. It’s just rough sometimes. Anyway, I’m glad that this article supports that people with ARFID can look differently. Thanks!
My son is 11 and has struggled with this since a baby. Thanks to the ARFID recognition he feels ready to accept help. We’ve seen dieticians but know we need specialist help now as he finds school lunch times and restaurants very difficult. I’m wondering if there are any private specialists in Somerset that anyone knows of? We are desperate to help him enjoy every part of life including food and places with food.
My 9 yo. was diagnosed with ARFID about a month ago-she has anxiety, which in turn caused her vomiting and eventually caused her emetophobia. Fast forward 7 months and her dx. is ARFID variation with a fear of Vomiting; malnutrition and generalized anxiety. She has been seen by an adolescent doctor, a Nutritionist, a Psychologist and taken small dose of Prozac each day. She lost about 20 pounds in 7 months and I was truly worried she would need to be hospitalized. This could get serious if not taken care of properly. Right now we are in family based therapy, with manualized CBT. Hope my message has helped some. So far,she has gained about 4 pounds and on her way to recovery.
My son was a “picky” eater from being weaned. He would eat only dry/crispy food at the age of two (though drank milk) and I worried constantly. By the age of 7 things had improved slightly but his diet was very limited and attempts to introduce “just one spoonful” of new food would result in vomiting. Eventually (peer pressure helped I think) his repertoire increased gradually. By 17 things had improved enormously & back-packing on the student trail, he ate all sorts of local foodstuffs.
Now in his 30’s, fit & healthy, he loves food, enjoys cooking & eating out. One of his children eats everything, one has a self-limiting diet currently – so I wonder if there’s a genetic link.
I know only too well what parents go through & how they are blamed for this condition. My second son ate everything in sight, so it was not anything to do with how we treated our children or provided food.
I hope my story gives parents with a similar child hope for the future.