ARFID is almost as common as anorexia, but most people don’t know it
Warning: This article contains content about eating disorders that may be distressing for some readers.
Avoidant restrictive food intake disorder, or ARFID, is an eating disorder almost as common as anorexia nervosa in Australia.
But it’s much less understood.
ARFID is a newly recognised eating disorder, which became an official diagnosis for adults and children in 2013.
For 12-year-old Alex*, the diagnosis came as a relief after years bouncing around the medical system.
His mother Jess said Alex was extremely restrictive about what he would eat from a young age. He measured very low on the growth chart and was often unwell.
Jess says her son Alex was always a restrictive eater. (ABC News: Patrick Stone)
“I got really worried about it when he was about 12 months [old] and I started talking to the maternal child health nurse and the GP,” Jess said.
When Alex was four years old, he ate just two foods for a whole year — two-minute noodles and peanut butter on toast.
“Everyone kept reassuring me that it was just a phase, and he would grow out of it. I had to push really hard to get any sort of blood tests done,” Jess said.
Tests showed nutritional deficiencies, and Alex has been on medically required supplements ever since.
A diagnosis has brought relief for Alex, 12. (ABC News: Patrick Stone)
After a lifetime of struggling with food avoidance, Alex is relieved his condition has a name.
“It was a rollercoaster of emotions trying to figure out what was happening,” he said.
“It’s definitely made it a lot easier for everyone to understand.”
What exactly is ARFID?
Before being officially recognised in 2013, ARFID symptoms were included in infant and early childhood feeding disorders.
It’s estimated to affect between 1 and 3 per cent of the population.
Professor of psychiatry at Harvard Medical School, Jennifer Thomas, is one of the world’s leading experts in ARFID.
She said people with ARFID tended to restrict food for sensory reasons such as texture, smell or taste.
“Or they’re very afraid of something bad happening after they eat … like vomiting or choking, or that they have a low interest in eating,” she said.
By contrast, anorexia nervosa and bulimia nervosa usually involve a fixation on weight and body image.
“It has to be causing pretty severe problems for the individual to rise to the level of ARFID, as opposed to just normative, picky eating,” Professor Thomas said.
Symptoms can include being underweight, lack of growth and nutrient deficiencies.
The diagnostic criteria also includes psycho-social impacts, such as if a person can’t play, study, work, or spend time away from home — meaning it’s not limited to those who are underweight.
“There are many people with ARFID who are of normal weight or maybe they even live in larger bodies because their preferred or safe foods they eat are kind of high calories,” she added.
ARFID commonly co-occurs with anxiety disorders, including obsessive-compulsive disorder (OCD).
Alex has anxiety, ADHD and autism, which experts say is also common for people with ARFID.
“He might be at someone else’s house with a safe food, but he still won’t eat it because … his anxiety levels are too high,” Jess explained.
“There was a really big period when he got very underweight and almost had to be taken out of school, had to stop all exercise and not do a lot of things.”
Trying to force Alex to eat has been harmful, mum Jess says. (ABC News: Patrick Stone)
Before Alex was diagnosed with ARFID, Jess said some of the medical advice they received was unhelpful and traumatic.
She said trying to force him to eat was harmful, as was the advice to withhold safe foods in the hope he would eat other foods when he was hungry.
“We tried that at one stage, and he ended up in hospital because he was dehydrated and hadn’t eaten for three days,” she said.
Alex has bad memories of those times.
“I very much do remember the phases where people did try to force me to eat stuff. It felt like someone just stuck a needle in my heart. It just didn’t feel well in my stomach and in my heart,” Alex said.
“It made my anxiety levels go further up than normal … and it always made me want to just go home and cry.”
How is ARFID treated?
Professor Susan Sawyer, director of the Centre for Adolescent Health at the Royal Children’s Hospital in Melbourne, said ARFID treatments did not involve forced eating.
But in critical circumstances, some people may require hospital intervention.
Professor Sawyer says treatment includes exposure therapy. (ABC News: Supplied)
“When the limitation of food types becomes so severe … then occasionally children are needing to be admitted to hospital for what we call re-feeding,” she said.
“We do need to take that very seriously and put in place comprehensive clinical interventions.”
Professor Thomas said common treatments for ARFID included cognitive behavioural therapy and family-based treatment, which included elements of exposure therapy.
“Exposure therapy is not forcing people to eat food that they think is disgusting or is terrifying to them,” she said.
“It’s really helping people try things they might not have tried before that they’ve pre-selected that they’re ok to do.”
Clinical psychologist Ainsley Hudgson runs a private multi-disciplinary practice in Melbourne specialising in eating disorders.
“There’s no two presentations of ARFID that look the same — each treatment needs to be really individualised, really adapted to each person,” she explained.
But the common theme in treatments was helping to establish regular mealtimes and reducing stress and pressure around mealtimes.
She said that can include developing a list of safe foods and slowly expanding that into foods they were willing to try.
Professor Sawyer said there was still a relatively poor understanding of the condition outside of specialist eating disorder clinics, in part because of the similarities with picky eating.
“It’s not necessarily straightforward to differentiate. However, [ARFID] becomes problematic when it’s extreme, where it’s not shifting and particularly where there is evidence of impact on growth,” she said.
Professor Sawyer said parents should raise any concerns with their GP and potentially seek an expert referral.
Roadblocks to treatment
For Jess and Alex, even with a diagnosis, there are still challenges.
Jess’s advice for other parents is to trust their instincts. (ABC News: Patrick Stone)
ARFID is not included in Medicare’s eating disorder rebate plans and isn’t recognised by the NDIS, so seeking treatment can be costly.
They’ve also encountered medical professionals who dismiss the diagnosis.
“There are lots of people in the psychiatric community that don’t even believe it’s a real thing,” Jess said.
After feeling she was written off as an anxious mother, her advice to others is to trust their instincts and seek help from experienced practitioners.
She said there had been times when Alex only ate biscuits and pasta, which was OK, because treatment for ARFID can first focus on getting sufficient calories and then variety and nutritional balance.
“The paediatric psychiatrist said if he wants to have Tim Tams for breakfast, lunch and dinner, then he can,” Jess said.
“Most dieticians you go and see would absolutely lose their mind if you said that to them, but thankfully we now have a good dietician who understands.”
Alex said putting in place a system that rewarded him for trying new foods had “been working out pretty well”.
Treatment for Alex includes sufficient calories, followed by nutritional balance. (ABC News: Patrick Stone)
While there are a number of evidence-based treatments for ARFID, Professor Thomas said they were still evolving.
“We’re still learning about the best ways of treating it, so there are a number of treatments that are being evaluated right now in randomised trials,” she said.
But one thing she wants parents to know is that it’s not their fault.
“I don’t think parents can cause ARFID and I don’t think people chose to have ARFID,” she said.
*Name changed to protect privacy
link
