THE mum of a teenage boy with an eating disorder called ARFID, a condition directly related to his autism diagnosis, says more needs to be known about the only recently recognised condition.
Corbin Holmes, from Newton-le-Willows, is on the autism spectrum and as part of his diagnosis he also suffers from ARFID.
ARFID, which stands for avoidant/restrictive food intake disorder, sees patients usually avoid certain foods or limit what they eat.
The eating disorder can occur in children, teenagers and adults.
This can happen for a number of reasons, including sensitivity to tastes, textures, or smells, distressing experiences while eating such as choking, and low interest in food.
In 14-year-old Corbin’s case it is the latter, with him finding food a chore and he has zero interest in it with further irritations due to food textures.
His parents Lauren and Steven have tried everything to get support for Hope Academy pupil Corbin, but due to his condition not being psychological, such as the likes of anorexia, bulimia and more common eating disorders, the support groups such as CED’s are unable to offer support.
Lauren, 35, said: “People just don’t understand enough about ARFID, and I feel like if we don’t share our story, and others don’t speak up then more children could die before enough notice is paid to it.
“It’s not just fussy eating, people with autism think differently and for Corbin it could have been a totally different story.”
The mum-of-two explains the severity of the condition, bravely sharing how serious things got for Corbin just two years ago.
She said: “In 2022 he got so bad with it that for three weeks all he would eat each day was a single bite of a crumpet.
“We were seeing dieticians but because so little is known about it the advice wasn’t really relevant to Corbin and said to add variety to his diet, but Corbin literally refuses to eat it.
“We had a meeting with dieticians, and he said he didn’t feel well, and as we left he collapsed by the doors.
“We took him to A&E and they weighed him there and he was just 34kg.
“He was triaged, and we didn’t wait long until a doctor arrived and mentioned ARFID, to us, something we’d never heard about before.
“They wouldn’t discharge him, and we were so relieved, someone finally was going to help us.”
Once in Whiston Hospital, Corbin was put of a ‘refeeding’ programme, where he had to eat a provided and carefully calculated breakfast, then snack, then lunch, then pudding, then snack, then dinner, then pudding and then snack.
Lauren said seeing Corbin force himself to eat was ‘the worst thing I’ve ever seen in my life, there was tears from us and him’ but eventually he did gain weight after being told if he didn’t eat he would have to have a high calorie shake, something Corbin was unwilling to have.
However, Lauren said when it came for Corbin to be discharged, no eating disorder organisation would take charge of his care due to it not being classed similar to bulimia or anorexia.
Lauren said: “We had to refuse to leave until a care plan was in place, we’d have visits from medical people who said Corbin was so weak and his knees protruding that he couldn’t walk, it was serious.
“Eventually after more than 10 days we were advised that Corbin could slowly come home for breakfast then go back to hospital and we slowly built up to him being at home.
“He’s still only been cared for by the community nurses and the hospital and since he’s left the hospital he’s not up to 46.6kg and can only eat certain things.
“We spend every morning searching Tesco’s all-around St Helens for their meal deal BLT as it’s all he would eat for lunch, and if we can’t find one we know he won’t eat.
“A little boy died of ARFID in Manchester recently, my heart goes out to that family because it could have been us.
“St Helens has no support for people with ARFID, Alder Hey does but we are out of the catchment for their care and the likes of Yorkshire does but not here.
“Corbin’s puberty was on hold due to this condition, and it takes up our everyday thoughts just trying to get through with little support offered to us.
“It’s traumatic and frustrating to see your child suffer, no one is the same as anyone else and ARFID is a recognised eating disorder, so why can’t St Helens get more on board with offering support to Corbin and others like him?
“That’s why I want to raise awareness, I didn’t have any answers until we went to hospital when Corbin was at his worst.”
For information and advice on ARFID, go to arfidawarenessuk.org
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