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Previously known as Selective Eating Disorder, Avoidant food intake disorder (Arfid) occurs typically, although not exclusively, in children with autism and is gaining increasing recognition.

‘We must be the only parents in the world who wish our child would eat a burger,’ says Philip Painter, whose 18-year-old son Charlie has Arfid alongside autism.

Arfid occurs typically, although not exclusively, in children with autism. Children with the condition will usually only eat five to 10 foods, will eat only one flavour of accepted food, and only one brand of the same food. Charlie’s diet revolves around marmite sandwiches, pureed apple, tinned spaghetti and smooth yoghurt. He hasn’t eaten anything hot since he was three.

Children with Arfid never seem hungry and go long periods without eating. They are highly anxious around food and unable to join in mealtimes.

Arfid was only recognised as a diagnosis in 2013 – some children with the condition have previously been diagnosed as anorexic. It occurs when children do not progress beyond the neophobic stage, the disgust response. In normal development this occurs around 20 months, and toddlers start rejecting foods they have previously eaten. It’s thought to have arisen for evolutionary reasons, to prevent poisoning from unfamiliar food.

Most children grow out of it by the age of three, or five at the latest. But children with autism can get stuck at this stage because they struggle with categorisation, such as understanding that the same fruit can have different patterns of markings or colour.

Samantha Wallis’s daughter Evelyn rejected and vomited food even as a baby, and was diagnosed with failure to thrive ‘which is an absolute insult’. ‘Eating was always a problem if you couldn’t find a McVitie’s Rich Tea biscuit, and it couldn’t be broken or chipped, or she would tell you “It’s disgusting” and go hungry.’

Wallis and Painter are among the families who have sought treatment from Dr Gillian Harris and Dr Elizabeth Shea at the Birmingham Food Refusal Service. Not all of the children they work with have Arfid – some will have a restricted diet because of sensory hypersensitivity – they may be unwilling to eat foods because they have a stringy or slimy texture and will gag if they are pushed to eat them.

But whatever the cause, tackling the problem means parents must first decide what they most need to achieve – the child to gain weight, or to increase the range of foods they eat?  ‘You can’t do the two things together,’ says Harris. ‘If the target is to increase their food intake, build the amount they eat from their range of preferred foods. Parents resist this because think it’s not healthy, but any increase is good. Growth is more important than dietary range, and a child will grow well on a limited diet.’

Children with these conditions prefer processed and branded food because it offers uniformity and takes away that fear of contamination. There is no point getting hung up about food you consider to be healthy, in the face of a child who will simply otherwise not eat at all, says Wallis. ‘Learn that there is no such thing as junk food in this situation. Your gut instinct is not to let them gorge themselves on horrible stuff, but in the mind of these children it’s about safety: do I know what it’s going to taste like, feel like, smell like; will it be predictable and safe with no surprises?’

These parents can never get away with disguising a vegetable, says Harris. ‘They will find the hidden food and reject the whole meal.’

Some children can, seemingly irrationally, eat two foods but not together. ‘We retain disgust and contamination fears – would you eat custard and fish fingers together?’ Harris says. ‘If they will eat cheese and bread, but not a cheese sandwich, just let them eat them separately.’

One of the few things Evelyn will eat is fish fingers; but when catering staff at school dropped carrots onto them, she then refused to eat them. ‘I had to write a letter to the school to give parental permission for them to stop giving her carrots,’ Wallis says with exasperation. It’s essential to get school on board, and to achieve this parents usually need a specialist diagnosis.

Pressure around food is the biggest no-no among these families. ‘As a parent’s anxiety goes up, it increases food refusal. If you fuss, bribe, coerce, it increases the problem,’ Harris says.

According to Harris it may take up to 10 tastes before the food is accepted. ‘Little and often, and if it doesn’t work, leave it,’ says Painter.

Once children are eating enough, parents can think about increasing the range of foods. The best approach is finding a similar food to one they like - if they eat salt and vinegar crisps, parents might try them on ready salted. But they have to time it right. ‘We try expanding her repertoire but only on a not-anxious day. It’s a case of chipping away and realising that as long as she is eating something she is not going to starve,’ says Wallis.

Charlie had a big breakthrough recently. He invited a young woman he liked to his birthday celebrations at Pizza Express, and his family explained he might make her feel uncomfortable if he sat there without eating. ‘He ate dough balls for the first time, and he tried a small piece of margherita pizza, which he said tasted just like Spongebob spaghetti; he ate a little because he recognised the flavour,’ says Painter. Working first on widely available food is a good ploy, he says, because ‘you can go anywhere in the world and find a McDonalds and pizzas.’

Painter had to learn not to be frightened of the condition and to understand that marginal gains take time. ‘In our case the biggest motivator happened to be a pretty young lady.’

With thanks to Drs Gillian Harris and Elizabeth Shea, who run seminars on eating challenges for the National Autistic Society (NAS). Their book, Food Refusal and Avoidant Eating in Children, is available from Amazon.

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