ARFID – Is my child fussy, or is it something more serious?
I was a long-term, paid contributor to the Healthy Food Guide magazine here in NZ. In 2017, they commissioned me to research and write an article on ARFID (Avoidant Restrictive Food Intake Disorder).
I spent a month speaking to experts from around the world, with a focus on those based in NZ.
I was also privileged to speak to parents with children who had a diagnosis of ARFID. My research included in-depth interviews with GP’s, hospitals, and public and private clinics.
It was also written after the release of the Sunday special that aired around ARFID. The show caused quite a stir with many parents recognising their child in many of the scenarios featured. It also caused unnecessary worry for those with children who were very picky but not meeting the diagnosis for ARFID.
The resulting article can seem a little overwhelming and negative, but the overall message is that a child can learn to eat more widely wherever they start from. Having ARFID does not have to be life-long.
Although written in 2017 there has been little change in the intervening years.
Imagine your child is struggling to execute a basic function, something that keeps them alive. Something they must do to maintain their health and wellbeing but they just can’t. Eating well is just not possible. The GP deems it a phase and advises you not worry.
But you’re pretty sure you’re right, something is intrinsically wrong.
This is the reality for parents with a child with Avoidant Restrictive Food Intake Disorder (ARFID) or very selective eating. Interviewing these parents was very emotional for me and their family stories eerily similar.
Often, they hide the extent of their children’s inability to eat “normal” foods. They feel isolated, guilty and continuously worry they’re not fulfilling a basic role as a parent – to nourish their child. The children have enormous anxiety around food impacting the whole family. Many of these parents have other children who eat variety and so it’s not parenting and yet that’s what they get told on a frequent basis.
“Just serve the food, they won’t starve themselves”.
Unfortunately, yes; children with ARFID will.
“They will grow out of it”.
No, they don’t. Children with ARFID often drop rather than add foods.
ARFID is an illness just like many others affecting our families.
Fussy eating itself is not unusual for children, in fact it is an innate part of development. But given there are no pre-established measurements for “picky”, experts, parents and GP’s have their own tolerance levels making it hard to know what is abnormal.
When I interviewed GP’s they agreed that fussy eating worries are very common and ARFID was not on the radar (prior to the airing of the Sunday program). I wanted to link to it, but unfortunately it’s been removed from the station data base. I am lobbying to have it reinstated!
Their training in paediatrics, never mind specifics relating to eating challenges, is scant. If a child looks healthy with height and weight within norms, further treatment isn’t deemed necessary. If concerns are ongoing then referral to a dietician could be considered.
Given the volume of parent anxiety over “normal” fussy eating one GP’s worry was that serious problems get drowned in the “noise”.
My interviews with parents concur. The GP/Plunket did not raise the alarm. Often follow-ups with paediatrician’s/psychologists/dieticians were not successful in recognising the issue or seeking a solution.
Emily Jones (ActivEating 1 ) says “ARFID is invisible, people don’t see and don’t understand it”.
Research suggests that ARFID is often not picked up upon until early adolescence as younger children can still tick height/weight boxes. Major growth at puberty prevents their diet supporting the additional nutrient requirements.
Many selective children eat no fruit and vegetables and have far lower intakes of vitamins, minerals and fibre and so are not within the W.H.O. dietary recommendations for reducing the risk of serious health problems.
ARFID is not the same as picky eating. It was only defined and added to the DSM-5 (the American Psychiatric Association Diagnostic and Statistical Manual) in 2013. Being a relatively new ‘disorder’ means there is little data available on its development, progression, prognosis, and no definitive treatment option.
Most experts agree its causes are a combination of biological, psychosocial, and environmental influences.
It is best understood by looking at the criteria for diagnosis:
An apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about negative consequences of eating and persistent failure to meet nutritional and/or energy needs associated with one (or more) of the following:
• Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
• Significant nutritional deficiency.
• Dependence on enteral (tube) feeding or oral nutritional supplements.
• Marked interference with psychosocial functioning.
And these factors are not due to scarcity of food, cultural practices, concerns over body image or a medical condition.
Early studies indicate between 5-10 per cent of people suffer from ARFID, with patients sick longer than anorexia sufferers and with a higher proportion being males. (2)
Other disorders like autism, depression and anxiety are often noted alongside ARFID and can exacerbate eating and feeding difficulties.
So what help is available to parents?
Auckland (ADHB), Christchurch (CDHB) and Wellington region (HVDHB) hospitals all have specialist feeding services for children who present with very selective eating/ARFID.
Referrals must be from a paediatrician via a GP or CAF (3) in Christchurch to the SIEDS (South Island Eating Disorder Services). Wellington declined to share information for this article however, CREDS (Central Regional Eating Disorder Services) handle all eating disorder enquiries. Auckland referrals are GP to ICAMHS (The Infant Child and Adolescent Mental Health Service).
Children can wait several months for treatment in the public sector and stretched services may result in limited appointments e.g. A young girl diagnosed with ARFID in Dec 2015 had her first and only appointment in March 2016. Since then she has added no new foods.
NZ Eating Disorders Clinic offers specialist private care. The increase in awareness of ARFID after the Sunday program in mid-2017 increased calls from 3 to over 100! At the time of writing the article they were working to manage the influx of patients (4).
Massey University, Auckland runs ActivEating. Set-up to teach clinicians, specialists work with families. Costs are minimal but places are limited and they too had received over 50 calls. (5)
Most providers believe NZ is under-resourced, under-staffed and unable to comfortably meet the demand from families who have severe food related issues. They are very concerned that families are not being supported. (6)
The lack of established protocol means treatment differs between providers (7). Multiple, intensive sessions however, have yielded positive outcomes (8). Recovery from ARFID is possible and necessary.
Parents who are worried about their child are generally the best judge as to whether there is an issue beyond just “normal” fussy. All the parents who have been kind enough to share their stories with me have known that something was far from right.
They urge other parents to seek out a GP that is sympathetic and request an urgent referral to a feeding specialist.
A final quote from Nancy Zucker, Duke Centre for Eating Disorders, expert on ARFID “.. because these children are seeing impairment in their health and well-being now, we need to start developing ways to help these parents and doctors know when and how to intervene.”
I agree, it really is about understanding what is happening, knowing where to turn to for help and then having experts who have experience working with children with extreme challenges around eating.
If you are concerned please look at the list below for context. I am also always happy to speak to any parent who is worried about their child’s eating. You can organise a complimentary initial chat via the website contact page.
Signs Picky Eating might be more than fussiness (Red Flags)
– Very restrictive range of foods (< 20)
– Extreme anxiety/distress around meals and trying new foods
– Willingness to starve for extended periods if safe foods are not available
– Avoiding groups of foods/textures/colours
– Lack of appetite and eating very slowly
– Child is losing weight/failing to grow
– Supplements are essential
List of references
1. Emily Jones (SLT), ActivEating, Massey University, Student placement training
2. Kelly Lavender, NZ Eating Disorders Clinic. http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11895424
3. CAF – Child, Adolescent & Family
4. Interview, Kelly Lavender, Certified Family Based Treatment Therapist, NZ Eating Disorders Clinic
5. Interview, Dr Cath Conlon & Emily Jones, ActivEating Program, Massey University
6. Interview, Fiona Farrell, EDANZ (Eating Disorders Association of NZ), Kelly Lavender, NZ Eating Disorders Clinic, Emily Jones, Massey University, ActivEating Program, Parents, children with ARFID
7. Interviews, Fiona Farrell, EDANZ, Kelly Lavender, NZ Eating Disorders Clinic, Dr Cath Conlon, ActivEating, Massey University, Andrew Cox, Clinical Director (ADHB), Jendy Harper (CDHB), Parents, Children with ARFID
8. Interviews, Kelly Lavender, NZ Eating Disorders Clinic, Emily Jones, ActivEating, Massey University, Andrew Cox, Clinical Director (ADHB). Nancy Zucker, Duke Centre for Eating Disorders.
Judith is an AOTA accredited picky eating advisor and internationally certified nutritional therapist. She works with 100+ families every year resolving fussy eating and returning pleasure and joy to the meal table.
She is also mum to two boys and the author of Creating Confident Eaters and Winner Winner I Eat Dinner. Her dream is that every child is able to approach food from a place of safety and joy, not fear.
Learn more about Judith here: https://theconfidenteater.com/about/