ARFID: 'My son's not a picky eater; he's scared of food'

Otto's mother Charlotte says he would often gag and refused to eat things from the age of six months

Crisps, dry crackers and plain pasta may not be the most exciting foods but they are often the staples relied upon by children with a little-known eating disorder.

Nine-year-old Otto from Hitchin, in Hertfordshire, has the condition ARFID, which stands for avoidant restrictive food intake disorder, meaning he avoids many different foods.

Otto says he would like to try new things, but often feels scared.

"It sometimes feels like food is inedible," he says.

"I feel like I'm either going to gag or throw up. I'm not familiar with the taste and that just makes my body feel like 'oh my gosh, this isn't like something you've had before...what is it? what is it?'.

"Then my body tries to get rid of it, which makes me gag."

Otto mainly lives on a diet of plain pasta, alongside a handful of other foods.

His lunch box contains items from the baby aisle, like fruit pouches and baby rice crackers.

Otto was diagnosed with an oral developmental delay at 18 months old and referred to the food and eating disorder clinic at Great Ormond Street Hospital, which he attended for a year before being discharged.

Otto's mother Charlotte has started a blog about the disorder called The ARFID Files to help other parents

His mother Charlotte says the family has always struggled to access support from local services.

"As a parent, to go through this and watch your child struggle so much with food, the overriding feeling is one of isolation. I felt like no one else had this issue," she says.

"The worst times have been on holiday, going to a café and realising there was nothing he would eat and judgement from other parents who think he is just a fussy eater and that we are giving in to him.

"We're the ones on the frontline who manage this every day.

"I feel like we are still on our own, all these years later."

The eating disorder hit the headlines last month after the BBC spoke to a mother from Narborough, Leicestershire, who was desperate to find a specific brand of crisps amid a national shortage.

Michelle's four-year-old daughter Ava, who also has ARFID, will only eat Walkers oven baked sea salt-flavour crisps and a few other foods.

Dozens of people sent crisps to Ava to help her, following the BBC's story, but some questioned whether ARFID was real

"It's horrible," says Michelle. "People think you are a bad parent when you're trying really, really hard."

Michelle is part of a support group for parents of children with the condition.

"Some [parents] have faced judgement from family members," she says.

"They don't dare speak out or ask for help."

What is ARFID?

• People with this eating disorder avoid specific foods or entire food groups

• Some people with ARFID have autism, but not all

• People with the condition eat a set amount of foods, most likely to include bland foods

• ARFID may be a response to a past experience with food that was upsetting, for example choking or being sick

• The disorder is not driven by issues around weight or body image

• Instead people with the condition experience little interest in food and eating, sensory issues around taste, smell or texture, or concerns about feeling unwell after eating

Source: ARFID Awareness UK/Beat Eating Disorders

Melissa, the mother of seven-year-old Ruby, says ARFID is one of the hardest things to face as a parent.

Her daughter was diagnosed three years ago after she suddenly stopped eating lots of foods.

She now only eats children's yoghurt, fromage frais and will sometimes nibble on a Babybel.

Melissa says she had no idea what ARFID was before her daughter's diagnosis

"We thought at first it might be a fussy stage, like children have, but it escalated into a problem," says Melissa, from Gloucestershire.

"Within three weeks she lost a kilogram of weight. It was terrifying.

"I could see her fading before my eyes."

Since her diagnosis, Ruby's diet has been bolstered by vitamin supplements and she is receiving therapy for the condition.

"It's not picky eating," says Melissa.

"It's a mental health disorder. And it's a nightmare for people going through it."

Liz Morris says she sees food as a necessary evil

The condition can also affect older children and adults.

Ever since she was a child, Liz Morris, 59, has had a limited diet.

Today, she can only bear to eat a small handful of foods, including cereal, oxtail soup and eggs.

"I have no memory of ever eating anything other than the foods I still eat today," she says.

Liz, from Dorset, has not had a formal diagnosis but she says she and her doctor believe she has ARFID.

"I've spent my life being told there's something wrong with me, that it's just a case of will power and I was being weak," she says.

"For me, [food] has always been a battleground. It has affected my relationships, my work, my health.

"The more people who know there are people out there who struggle with this, the better."

Gillian Harris is campaigning for better awareness among medical professionals and the wider population

Some health professionals are calling for more recognition of the condition.

ARFID is recognised by the NHS and was introduced as a new diagnosis in 2013.

Dr Claire Higgins, principal clinical psychologist at Great Ormond Street Hospital, suggests ARFID awareness could be built into the training of health visitors and GPs.

Around a third of the children she sees have a history of reflux or allergies as a baby which made them start to associate eating with pain.

"We don't appreciate what a sensory experience eating is," she says.

"It can feel quite overwhelming for these children."

She believes in a range of approaches to help children with the disorder.

"We often talk about messy food play, getting them involved with cooking but with no expectation to try the food," she says.

"Increasing their exposure to different foods helps them grow in confidence and they may be able to later move on to touching the food and maybe trying it."

Gillian Harris, a psychologist at the University of Birmingham, says that while there have not been any studies on the prevalence of ARFID, from her experience about one in 500 children are affected.

She says it usually develops in children by the age of four and is caused by hypersensitivity, often starting in the mouth.

It makes some foods seem genuinely repulsive, she adds, particularly food which needs to be chewed at the more sensitive sides of the mouth.

"There is a fussy stage that all children go through at around two years," she says.

"That's a stage that children with ARFID go into and do not come out of."

Everyone is on a spectrum of food acceptance and refusal, she believes, but she would class it as a condition when the diet is limited to 20 items or less.

"Many parents are blamed for their children's food refusal and therefore not given the help that they need, but they have usually tried everything they can to get their child to eat a wider range of foods," she says.

"[But] I think there is a wider understanding now that this is a real eating disorder, not just a naughty child or bad parenting."

Nicole Kirkland's daughter had acid reflux as a baby and has struggled with food from a very young age

Nicole Kirkland started the charity ARFID Awareness UK in 2019 after realising there was a lack of support for parents of children with the disorder.

She herself has a six-year-old daughter who has never had a hot meal.

"There is no standard of care, there are no guidelines for GPs to work from, so of course many of them have no knowledge of ARFID," she says.

The charity is inundated with emails from parents and healthcare professionals asking for advice on a daily basis, she says.

"I just hope that in the future ARFID will be more well-known and we will have a clear pathway to help people because it affects so many more children and adults than we realise," she says.