It wasn’t long after I arrived to pick up Stan*, then aged eight, from his first visit to a friend’s house that I finally resolved to speak to the GP about his eating – or rather lack of it. Although I’d warned his playmate’s mum that my son probably wouldn’t tuck into whatever she prepared (unless it happened to be a particular brand of margherita pizza) and that I’d feed him later, I found him alone at their dining table staring down a bowl of noodles, desperately hoping it would disappear. The other kids had presumably wolfed down their tea and gone back upstairs to play. In that moment, I realised I could no longer ignore what I had long suspected was more than a case of fussy eating. My child was clearly distressed by something that most of us find easy, if not downright pleasurable: the simple act of sharing a meal with friends.
A few weeks later, I came across a podcast that described almost exactly what my son had shown signs of since infancy. Listening to a woman articulating how her limited diet was affecting her life proved that Stan was not alone – and that this condition had a name, ARFID. It was the impetus I needed to make an appointment with my son’s doctor.
What is ARFID?
Avoidant restrictive food intake disorder (ARFID) is ‘a condition characterised by the person avoiding certain foods or types of food’, or sometimes restricting the amount they will eat (or both)’. If you’re nodding in recognition because your young child eats mostly beige foods or turns up their nose at broccoli, it’s important to understand that, with ARFID, the restrictive behaviour must "result in either physical impairment or significant interference with personal or social functioning, or both," explains clinical psychologist Rachel Bryant-Waugh, a consultant at the Maudsley Centre for Child and Adolescent Eating Disorders and a specialist in ARFID. The symptoms aren’t so much low weight or reduced growth, but a negative impact on psychological wellbeing, for example making it difficult to go on holiday or go out with friends. This was true of Stan, whose first question whenever he was invited to a friend’s house was, "Mum, will I have to eat there?"
How can ARFID develop?
ARFID doesn’t have a single cause although many people with the condition experience strong sensory preferences, often to certain textures or smells, which explains why it frequently co-occurs with autism and ADHD. For some children, a choking incident or allergic reaction may have sparked a lasting food phobia that restricts their eating patterns. Although there was no obvious trigger for Stan, foods not on his ‘safe’ list would cause visible signs of distress, retching or even vomiting. Being asked to eat was frequently genuinely overwhelming for him. Even when faced with things he broadly tolerated – fish fingers, peas, smooth yogurts – he didn’t show much interest in eating, taking a long time before his first bite and often stopping after just a few mouthfuls.
How we cope
Effective treatments for ARFID include CBT-informed approaches, gradual exposure and family-based work. When it comes to mealtimes, "the basic rule of thumb is to avoid surprises," says Bryant-Waugh. "If your kid is terrified of dogs, you don’t bring round a Rottweiler". Instead, she recommends preparing your child in advance for what the expectations are. For example, you might say, "I’m going to put a little bit of this on your plate. You don’t have to eat it." Otherwise, they may become fearful of coming to the table. "And don’t introduce new foods when they’re starving hungry," she warns, as it’s likely to contribute to anxiety levels.
When eating out, we generally stick to familiar places or chain restaurants where Stan can find at least one of his ‘safe’ foods. If we haven’t visited before, I’ll check the menu online in advance and let him know what I think he might eat. When he was younger, I’d arrange play dates between mealtimes, or invite his friends to ours where it’s easier to serve his preferred foods. Now Stan’s in his teens, he’s developed his own strategies for navigating social situations, often finding out what – or where – he’ll be eating in advance, and picking up his own food if necessary, but it does bother him that he can’t just fit in.
Almost any parent of a child with ARFID worries that their nutritional needs aren’t being met, especially if their diet consists mostly of the packet foods they’re commonly drawn to for their consistency. "Children need to have two or three foods from each of the major food groups," advises Bryant-Waugh. "A child with ARFID may only have one or two options within those groups and still be ok. You’re aiming for something that is good enough," she reassures me, "even though it may not be nutritionally optimal."
Dealing with ARFID
If you suspect your child has ARFID, start by looking at a reliable site such as Beat or NHS Inform (for Scotland) for useful definitions. Before consulting your GP, Bryant-Waugh suggests you "write down your concerns and be quite specific about the impact on your child." For example, is it affecting their growth, overall nutrition or day-to-day social behaviour and how? Also, "be ready to share the basic information about ARFID," she advises. Although awareness of the condition has grown since it was first published in the WHO International Classification of Diseases in 2018, your GP may not be familiar with it or the diagnostic criteria so do a bit of work before you go.
I also found it helpful to speak to my son’s primary school teacher about the condition and what it meant for my child. ARFID Awareness UK has leaflets tailored for different educational settings that can assist with this. If I’d known about these when Stan was diagnosed, I’d have sent them to friends and family too. Lots of people think you’re dealing with standard fussy eating and say: "Tell me about it – little Johnnie doesn’t eat his greens either." Or they’ll assume you’re just not trying hard enough and will literally attempt to feed your child, only to be perplexed when their ‘aeroplane’ spoon is met with tears and lips that remain clamped shut.
Fortunately, as awareness of ARFID has increased, so too has research interest. "There’s good evidence that there are effective treatments," says Bryant-Waugh. "ARFID is not a lifelong condition," she reassures me. "So long as you look at what is maintaining it, and what makes things worse, and attend to that." By working to address Stan’s fears around food and the possible consequences of eating, he’s been able to expand his repertoire and his overall intake. We’ve just had our first Christmas where I didn’t make him a separate meal. Ok, so it may have consisted of pigs in blankets, sprouts and Yorkshire pudding but he was able to eat without distress, so we’ll take that as a win.
*Some names have been changed
Read more:
What is orthorexia
How to manage back-to-school anxiety
How to overcome social anxiety
How to gain weight according to a dietitian
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source https://www.bbcgoodfood.com/health/when-its-more-serious-than-just-fussy-eating-a-parent-on-how-to-negotiate-arfid
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