Nicola Grady’s son Walt will eat five “safe foods”, including McDonalds chips, but won’t touch anything else.

His mum and dad can’t eat in front of him because he retches, so they have to eat secretly at different times or in the kitchen.

Five-year-old Walt, who is autistic, is undergoing assessment for ARFID – avoidant/restrictive food intake disorder – but even if he gets a diagnosis, there is little specialist support.

“It’s quite scary,” says Nicola, from Peterlee in County Durham. “You feel like you’re just left to wing it at the end of the day.

He has four or five safe foods and he would literally starve rather than eat anything else.

“The RVI hospital has offered to start tube feeding if things get worse. It sounds terrifying to me, although I know people manage it.”

It’s Eating Disorder Week and this year it’s focusing on ARFID to raise awareness about the condition and help people get the support they need.

The Gradys with son Walt

It was revealed last month that a seven-year-old boy from Stockport died suddenly from undiagnosed ARFID despite repeated requests for help by his family.

Eating disorder charity Beat says: “We are hearing time and time again that people affected by ARFID struggle to get help. We want to raise awareness of this serious condition that can have fatal consequences if left untreated.”

ARFID can affect children and adults and is characterised by avoiding certain foods or food types and having a severely limited number of “safe foods” they feel able to eat. It can be the result of sensory issues, or fear and anxiety around food.

Leading expert Dr Gillian Harris, who is based at the University of Birmingham, says: “Very few foods are eaten - often brand specific – and no new foods are tried. Food acceptance will also often be context specific; a food might be eaten at school but not at home.”

Beat's Eating Disorder Week campaign

The condition appears to have strong links with autism. According to a 2021 study, 30 percent of autistic children meet the criteria for ARFID.

The problem is that some professionals see the condition as simply another symptom of autism, it’s rarely diagnosed, and most NHS services aren’t commissioned to support it.

Louise Henderson, from South Shields, has an autistic 12-year-old son Joseph with ARFID and says: “The general consensus seems to be – ‘well of course he struggles with that, he’s autistic’.

This minimises the individual symptoms experienced and makes it harder to be heard by professionals and get needs met.

Louise Henderson and Joseph

The NHS is now appointing ARFID champions in each region to help build up knowledge and awareness. Rebecca Weatherstone, senior family worker at the North East Autism Society, is one of these champions, but says there is a long way to go.

“There is a huge lack of knowledge around ARFID. Most NHS services aren’t commissioned to offer support and it’s rarely diagnosed,” Rebecca says.

“There’s no clear pathway, yet it’s so important. Some of the standard tips for children and eating – such as they’ll eat when they’re hungry, or to disguise new foods as something familiar – don’t work for people with ARFID. In fact, it can result in them having fewer safe foods.”

Rebecca has put together guidance for families of people with ARFID, which can be found on the NEAS website here.

Rebecca Weatherstone of NEAS, ARFID champion

She is backed up by Dr Gillian Harris, who says it’s especially difficult for parents of young children to get help with sensory-based ARFID. 

“Who will see a four-year-old who doesn’t eat many foods, can’t sit with their parents to eat, or sit with other children at nursery or school – but whose weight is fine?” she says.

All NHS services are stretched to the limit – there are very few who can or will diagnose, very long waiting lists, and no clear intervention pathway.

But families desperately need that support and information, says Louise, whose son Joseph struggled so much with school meals that he lost 10lbs and resorted to hiding paninis up his sleeves or in his socks.

Louise, herself a therapist, says: “When your child is really struggling and you’re watching them fade away, you feel desperate and so helpless as a parent.

“We did get referred by the Children and Young People's Service to a new ARFID support unit, and it was really nice to have that validation that we weren’t the only people experiencing this and that we weren’t crazy.

“There’s no solution or quick fix. But once we understood what it was, we could accept it and ride the storm out.”

For more information see the Beat Eating Disorder website at or ARFID Awareness UK at 

Read our ARFID guidance