Rudolph also has young patients who have developed vision impairment due to the condition. Some patients just eat the same three foods every day.
“It might seem like an innocuous illness, but it has a profound impact on the entire family,” she says.
“Parents may spend hours and hours trying to cook and feed them meals and sometimes these children become so anxious and medically unwell that they disengage from social contact and don’t attend school regularly.”
Rudolph says malnutrition can lead to cognitive impairment and anxiety. “It affects all aspects of health – physical, psychological and cognitive.”
Rudolph believes that growing awareness of ARFID and increasing incidence is leading to a rise in diagnoses. The eating disorder often coexists with autism, ADHD, anxiety and depression – conditions that are also increasingly diagnosed.
Unlike other eating disorders, people with ARFID don’t restrict their food intake to lose weight or due to body image concerns. They often avoid foods because they don’t like their texture, colour, smell or taste. Some fear food and are worried they will choke or vomit.
Jane Rowan, director of Eating Disorders Families Australia, is also a mother to a daughter who experienced an eating disorder.Credit: Dan Peled
Over the past two years, Eating Disorders Families Australia has experienced a significant rise in the number of families and carers seeking support for ARFID. It now runs two support groups for families impacted by the eating disorder every month. Many of these families have spent years trying to get a diagnosis.
“Families’ concerns are frequently dismissed due to the lack of knowledge around ARFID by medical professionals and the wider community,” says the organisation’s executive director Jane Rowan.
Butterfly Foundation head of communications and engagement Melissa Wilson says it can be difficult to work out whether someone has ARFID or is just a fussy eater, particularly in children.
“ARFID will usually manifest in an extreme aversion to or lack of interest in food and is a cause for concern when it affects their ability to meet their energy and nutritional needs, often resulting in weight loss, malnutrition or an inability to maintain growth and development,” she says.
Wilson says while many people with ARFID may be underweight due to food restriction, some people maintain a typical or higher weight.
She says there is limited research into how to prevent ARFID.
While fussy eating normally improves during childhood and adolescence without treatment, people with ARFID require treatment to recover.
In Coury’s case, this treatment involved frequent appointments with a psychologist and what’s known as exposure therapy.
One session revolved around apples, and Coury exposed her senses to apple juice, apple puree, dried apple and freshly cut apple.
“We would do a different food every week,” she explains. “First I would look at it, then I might pick it up in my hands, smell it and if I feel courageous, I might lick the food. If I’m really feeling up for it, I might have a mouthful.”
Her homework was repeating the sessions at home.
Marissa Coury hopes that increased awareness of ARFID will lead to more children receiving early intervention. Credit: Dylan Coker
Coury, who lives in Sydney’s southern suburbs and works in health promotion marketing, has lived with ARFID since she was three.
As a child, her parents tried to get her to eat the same meals as the rest of the family at dinner, but she refused. “They cooked me a separate meal every night,” she recalls.
“My mum made this dish where she basically grated vegetables so small that you couldn’t really feel them. I ate that with minced meat and rice.”
When she turned 18 and stopped eating her mother’s cooking, her health began to really suffer.
“It started with unbearable pain in my feet and it got to the point where I couldn’t walk,” she says.
“Then I was reading a book and realised everything was really blurry.”
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She was eventually diagnosed with peripheral, optic and auditory neuropathy. This means she has pain in her feet and hands, blind spots in her vision and struggles to hear properly.
Coury now eats a more varied diet with some meat, legumes and vegetables. “There are still some foods I don’t think I’m ever going to be able to eat,” she says. “I’m OK with that, because I’m just focusing on getting my nutrients.”
She hopes that increasing awareness of the condition leads to more people receiving treatment earlier.
“There’s so much hope for kids today because early intervention is key. By the time they’re my age, they may not have ARFID. They may be at a point where they eat a healthy, balanced diet.”
Laura Hart, an associate professor at the University of Melbourne’s School of Population and Global Health, is leading a project to design Australia’s first robust screening tool for eating disorders in children aged 5 to 12.
She says existing screening tools for children were devised before ARFID was recognised and used clunky, impenetrable language.
Hart says parents often experience significant anxiety when their child struggles with eating.
“This is an illness that needs specialist support,” she says. “It is not the parents’ fault.”
Shannon McGlinchey’s son was an adventurous eater until he choked on a piece of paper when he was 18 months old. In a matter of days he went from feasting on an array of dishes including poached salmon, berries and Greek yoghurt to only eating a handful of foods.
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He stopped eating solid food entirely for six months following the deaths of a relative and friend, a series of stomach bugs and tonsilitis. During this period, he only drank strawberry Up and Go liquid breakfasts and took supplements. He was eventually diagnosed with ARFID.
The now six-year-old has since added two-minute noodles, Chicken Crimpy Shapes, strawberry doughnuts and chocolate chip cookies to his diet. The other day he ate a banana and a sausage.
“That was a big win,” says McGlinchey, who lives in Melbourne’s south-east.
McGlinchey says parents of children with ARFID are often blamed for their child’s restrictive eating and can feel a great sense of shame.
“I’ve lost people over it,” she says.
“It has nothing to do with my food or cooking. I would pack a lunchbox full of colourful fruits and vegetables and my son would push it to the side at play dates. Now when I pack a lunchbox full of the things he eats, some parents just stare.”
For confidential & free support for eating disorders call the Butterfly National Helpline on 1800 334 673 or visit www.butterfly.org.au
