Emma Leigh-Currill
Last night we had a marvellous feast of a Friday night supper. All the family was there and the food was plentiful and everyone had the choice of the meal that they would like to eat. I had already started reheating the Cook curries we had in the freezer when Hubbie arrived home with a sushi platter. We just put it all in the middle of the table and let everyone help themselves along with the naan breads, vegetable curry and popadoms.
One of my sons has ARFID (Avoidant/restrictive food intake disorder -ARFID) as did my brother as a child and teen and, looking back, I think my uncle may have had it too. It means that my son is only able to eat a limited range of foods because the smell, taste, texture and the fact that it’s just ‘different’ (click here to read about neurodivergent brains finding the unknown challenging) all create a physical reaction to the food he’s asked to eat. The physical reaction is generally disgust but it has been gagging and near vomiting in the past. My son is undiagnosed because he’s an age where he is gaining confidence in self-advocating for himself and his wants and needs and he doesn’t want another assessment because he feels that another label won’t actually do anything for him. I understand and respect this but choose to follow some of the strategies that those with ARFID use to help him in his day-to-day eating.
ARFID is more than just ‘picky eating’; it’s more than not eating your non-favourite foods. ARFID is an, often, fear based disorder with its roots in sensory processing difficulties. This is my son to a tee because he has severe sensory challenges and we can see from his face that his disgust quickly turns to fear if you try to make him eat something he really can’t (I use can’t rather than won’t because he really can’t).
My son would rather not eat than eat something he can’t and this is similar to my brother in that food avoidance was a part of my brother’s life looking back. Both my brother and my son are very tall and slim so do need a good diet, especially my son, who is still growing. Food avoidance in ARFID can be similar to other food disorders (the relationship to food and intake of food is ‘disordered’ hence the name) in that my son can push food around on a plate to seem like he is eating (he’s not; we’ve observed him many times over the years doing this), he can hide food, throw food away and avoid eating food (and can lie about it). We’ve also had rows over his food intake which isn’t something any of us are proud of and I can only say to explain is that we now know better so we do better and our son totally accepts this.
Food is emotional. The act of preparing food for, and sharing food with, other humans that you are connected to is a basic tenant of what it is to be human. It goes back as far as we do when once our lives were centred around hunting and then gathering food to store and use to keep our families alive. We think of those we are cooking for when we choose ingredients to cook, ‘Let’s make pizza tonight! We love to do that…’ and we prepare for in, what I think as, the heart of the home when we cook and the smells produced cause small children to come out of their rooms and ask, ‘When’s dinner? I’m starving.’
Sharing a meal means talking and cooperating and making sure you get that last potato by bartering (arguing) with a sibling or parent. The contents of the fridge when you open it on a Winter’s night and the kitchen is just lit by the light that creeps out of the cold box that holds lovely things for delicious snacks that you don’t need but really want all the same.
In our family, food and a love of food, I feel, binds us together, creates memories that last a lifetime and give us pleasure and joy as we tuck into our most favourite meal.
So it’s hard when one of your beautiful, fabulous, funny and gorgeous children just doesn’t seem to like food let alone want to enthusiastically try new things as his siblings do.
We’ve seen a paediatrician due my son’s low weight (he was an enormous baby who really didn’t follow his percentiles at all) but the Dr was happy because after a 6 month gap to monitor my son, my son was growing and had energy so all was declared well. We didn’t get to see a dietician due to us already having the good habits that are the basics that the NHS can offer (eat regularly, at table, fruit and veg, balanced diet etc). We needed more ‘in his head’ help but that wasn’t available.
‘Have you tried..?’ and the thing that I could try was offered by many friends as I asked whoever I could for advice. Nothing has ever helped. Well, I say nothing but the only thing that has ever helped is just letting my son eat the meals he wants (‘safe’ foods) even though that is mostly not what the family are eating. I found this so difficult at first because I had my own hang-ups from my own childhood where I was forced to eat reheated meals that I hadn’t finished from the day before. I was taught that you should eat whatever was on your plate even if you weren’t that hungry and didn’t like the food so I had that to reconcile with before thinking about how on earth I was going to help a boy eat any food that might be on his plate. Some days my son just didn’t eat at all.
Seeing your child’s ribs showing through, looking at his underdeveloped leg muscles (he has dyspraxia too) and catching yourself thinking that he looks rather skeletal was hard and we went through these times more than once over the years. ‘He’s looking a bit thin at the moment,’ I’ve had teachers say to me (in all kindness) and I try to explain to yet another person who doesn’t quite understand disordered eating, (because, surely, you just make them eat right?) that he’s stressed at the moment, not sleeping so not eating and drinking will always follow that. He’s had numerous urine infections and had to have an invasive (and personal) operation to enable him to urinate due to scar tissuing from those infections. Even whilst in hospital with the results of not eating and drinking being made very, and painfully, aware to him: he still could not eat and drink easily. ‘Can you get him to just drink a bit more please? We need him to fill the catheter to see that all is well.’ I try to explain that my son has interception difficulties (he doesn’t feel hunger or thirst) and I sigh as I tried to explain to yet another person that due to his sensory difficulties he can’t, ‘…just eat and drink,’ unless you want vomit to deal with too?
They don’t understand, don’t want to understand and don’t seem to care that I’m telling them that my child does not eat and drink easily. I wonder if that would be the same if he were female? (Is this an example of reverse sexism?)
What we do now is to just make sure we have the food in that our son likes and, like last night while we all tucked in to our curries and sushi’s and naan bread, he had his pizza that we have a few of in the freezer. During Covid we stocked up on ready made lasagnas as that’s one of the things he will always eat. And we understand, because we’ve talked, that as a family this son may eat different food to the rest of the family and, contrary to what parenting books often tell parents, it really isn’t a problem. The other children don’t start to refuse their own food and they don’t make comments about their sibling. It’s about how it’s managed and how the change is explained and how your children are supported with their individual difficulties. Family life with regards to food doesn’t disintegrate no matter what the rigid and inflexible parenting approaches might have you believe.
Over the past couple of years we’ve been looking to the future and thinking of how our son will manage in early adulthood and beyond. He’s eating at friends, at school and also may be asked out ‘for a curry’ with his mates so we’re working through ideas and forming strategies so that he can take part but do so making sure he is self-advocating for himself. This has had mixed results and I remember one visit to a curry house where our son was tearful and close to a meltdown as he read the menu and saw that, ‘There is nothing I can eat,’ on the menu. He doesn’t want this reaction with his mates and he doesn’t want to avoid social situations so we’ll be working through this for a while longer I think.
We’re back to -do we need an assessment? a diagnosis? because this will give him an explanation of how he feels and behaves and a vocabulary with which to do that. Does, ‘I have ARFID,’ sound much like a real thing rather than, ‘I have difficulties with food?’ It’s a conversation we’re still having because I don’t feel our minds (more his mind) are quite made up.
My brother is now a foodie who has travelled to many far flung place – much to the astonishment of myself and other family members – so there is room for change and development and our son needs to be reminded of this. His sensory challenges have ebbed and flowed over the years and I see the same happening for the rest of his life. What happens in his day-to-day life very much effects his stress levels which, in turn, effects his sleeping and eating so the next 4 years of exams and the pressure of that need monitoring closely. I do think that once he’s out of the school system and he can tailor his life to his interests and what he can manage, he will blossom more; he blossomed when he was home educated for 6 years and it was amazing to see.
ARFID is difficult to support and difficult to get support for. It’s a huge part of your family life if you have a member who has ARFID because food is central to days out, (‘Where will we eat? Can we do that? Do we need to take food with us?), school (‘Does he eat at school? How will we know?’), social life (‘He can’t cope in a restaurant,’ ‘What will he eat when he’s at his friend’s house?’), development (‘Is he growing?’, ‘He looks so thin and tired.’) and just a feeling that you’re being a pain and things are difficult.
I do know my son wishes he could just tuck in and enjoy food as much as the rest of his family does. It’s hard to be the one sitting at the table and wanting to be anywhere else but there. It’s at these times that I look to my brother to see that change is possible and that we need to be open to that possibility.
*Edit*
I have been contacted to say that my son could have Paediatric Feeding Disorder (PFD) but on reading the symptoms AFRID does seem to fit more. I believe he may have had PFD when he was younger and had this been identified he may have been able to have some therapy that may have helped. As it is my son is approaching 15 and his challenges are very much set and part of him.
We raised our son’s difficulties with paediatrician’s, a consultant urologist (our son doesn’t drink and had many urine infections) and the staff in hospital when he needed surgery to his scar tissue from is infections stopping him from urinating. We have found that none of the medical profession are in the least bit interested in a boy that doesn’t feel hunger or thirst and has severe sensory challenges.
