ARFID: Help, my child won’t eat

Rosan Meyer and Luise Marino put together a Q&A to introduce the topic of avoidant restrictive food intake disorder (ARFID).

What is ARFID?

Avoidant restrictive intake food disorder (ARFID) is an eating disorder affecting in particular food variety, that may lead to nutritional deficiencies, first recognised in the DSM-V criteria in 2013 affecting all age groups.¹

What is the difference between ARFID and other eating disorders?

Factors associated with the development of ARFID include:

• absence of hunger
• aversion to the sensory components of food, including smell, texture, appearance and fears relating to eating and choking
• intense perception of organoleptic properties of food resulting in brand specificity and aversion if food presented is not the brand of choice.^{1, 2}

ARFID is different from eating disorders such as anorexia, bulimia, or OSFED, as individuals are not restricting their intake with the purpose of losing weight. ARFID sufferers do not usually have body dysmorphism or employ over-exercising to control their weight.^{3, 4}

Why do individuals with ARFID have nutrition risk?

Individuals with ARFID, particularly children, have increased nutritional risk as eating patterns such as reduced food variety and intake can result in macro- and micronutrient deficiencies and growth faltering. In some cases this may require artificial nutrition support either as a naso-gastric tube feeds or oral nutritional supplements,⁵ impacting on the quality of life of the child and the family.^{3, 6} A recent qualitative systematic review of case reports/case series of ARFID associated with autism, found that 69.7% of published cases involved scurvy (vitamin C deficiency), followed by 17.1% involving eye disorders secondary to vitamin A deficiency. Other micronutrient deficiencies reported included vitamins D, B₁₂ and thiamine. In addition, 69.2% of patients had a body mass index or weight for age percentile within normal range.^{7, 8}

“I wish I could eat the same food as my brothers but it doesn’t taste the same to me. It’s all my fault.” Aiden Age 7

What does treatment and recovery involve?

Management strategies for ARFID continue to evolve but include nutritional, psychological, sensory-motor and medical assessment, followed by plans focusing on:

• dietary – ensuring that nutritional needs are met to optimise growth and development
• psychological – management of parental/child anxiety and coping with mealtimes
• sensory-motor strategies – relating to the child’s environment, de-sensitisation strategies and the development of oro-motor skills.⁶

Future qualitative research should also consider the development of patient-centred definitions of recovery from the perspective of individuals, families and HCPs.^{5, 9}

How does it feel to have ARFID?

ARFID is not someone with picky or mildly selective eating.^{1, 6, 7} There are many brave and eloquent posts on the internet describing the holistic effect ARFID has on individuals and families. Even young children are able to articulate how food makes them feel: “I want to eat but my mind won’t let me,” said Isla, aged four, and: “Food is scary and makes me feel shaky,” said Matthew, aged seven.

An adult ARFID sufferer explained: “I remember living in a constant state of hunger, fear, and isolation. If I had to sum up ARFID in just one concept it would be that: isolation. Food is such a big part of how humans connect to each other, and I kept missing out on that. I felt terribly isolated, embarrassed about myself, and worst of all, impotent.” (From a Medium blog by @Semirasis)

An information need analysis survey: what information do HCPs want?

In September 2020, we launched a short survey to better identify what knowledge and information HCPs felt they need to have in order to feel confident in diagnosing and providing care and support for individuals with ARFID, as well as being a reference source for parents of children with ARFID.

We had 128 respondents, of which 45% were dietitians with 33% working in community trusts. Almost half of respondents had more than 10 years’ experience in their current role.  

More than 75% of respondents wanted background information relating to diagnosis and the difference between ARFID, autism and other eating disorders was essential. Assessing nutrition risk was considered to be of high importance to 50% of respondents with regards to understanding:

• criteria for under- and over-nutrition
• the value of nutrition bloods
• assessment tools for dietary intake. 

Aspects relating to the nutrition care plan considered to have high importance were:

• feeding techniques
• how to ensure nutrition adequacy
• vitamin and mineral supplementation
• defining healthy eating in a child with ARFID.

Free text comments included signposting resources for HCPs/parents and diagnosis, management and recovery.¹⁰

The authors would like to extend their thanks to ARFID Awareness UK and their Trustees who are championing the voice of those affected by ARFID, as well as University of Winchester.

References

1. (Ed), A.P.A., Diagnostic and statistical manual of mental disorders: DSM-5, A.P.A. (Ed), Editor 2013, American Psychiatric Association: Arlington, VA.
2. Zickgraf, H.F., M.E. Franklin, and P. Rozin, Adult picky eaters with symptoms of avoidant/restrictive food intake disorder: comparable distress and comorbidity but different eating behaviors compared to those with disordered eating symptoms. J Eat Disord, 2016. 4: p. 26.
3. Norris, M.L., W.J. Spettigue, and D.K. Katzman, Update on eating disorders: current perspectives on avoidant/restrictive food intake disorder in children and youth. Neuropsychiatr Dis Treat, 2016. 12: p. 213-8.
4. Katzman, D.K., K. Stevens, and M. Norris, Redefining feeding and eating disorders: What is avoidant/restrictive food intake disorder? Paediatr Child Health, 2014. 19(8): p. 445-6.
5. Sharp, W.G., et al., Intensive Multidisciplinary Intervention for Young Children with Feeding Tube Dependence and Chronic Food Refusal: An Electronic Health Record Review. J Pediatr, 2020. 223: p. 73-80 e2.
6. Katzman, D.K., M.L. Norris, and N. Zucker, Avoidant Restrictive Food Intake Disorder. Psychiatr Clin North Am, 2019. 42(1): p. 45-57.
7. Yule, S., et al., Nutritional Deficiency Disease Secondary to ARFID Symptoms Associated with Autism and the Broad Autism Phenotype: A Qualitative Systematic Review of Case Reports and Case Series. J Acad Nutr Diet, 2020.
8. Feillet, F., et al., Nutritional risks of ARFID (avoidant restrictive food intake disorders) and related behavior. Arch Pediatr, 2019. 26(7): p. 437-441.
9. Richmond, T.K., et al., How do you define recovery? A qualitative study of patients with eating disorders, their parents, and clinicians. Int J Eat Disord, 2020. 53(8): p. 1209-1218.
10. Marino LV, C.J., Meyer R, ARFID: A Survey of information needs assessment, 2020, University of Winchester: Personal Communication.