ARFID eating disorder

When I hear parents talking about how they stamped out fussy eating in their children, it makes me smile.

It used to hurt. In the days where I’d search the internet for tips and solutions. When I’d ask myself where we went wrong. Before I realised our problems were much more deep-rooted than the typical fussy eating that is typical of all young children.

Perhaps it’s difficult to understand severe selective eating until you’ve lived with it. Briefly alluding to my son’s struggles with food would be met with “Oh I know, my child is terrible with food sometimes. She refuses to eat X Y and Z at home but she always eats everything at nursery!”

Of course all children go through fussy stages, especially in the toddler/preschool stage. It’s a classic pushing the boundaries exercise. But this is not what I’m talking about. What we have experience with selective eating is far from the same. ARFID is an eating disorder.

Selective Eating Disorder, or ARFID

Selective Eating Disorder, now known as ARFID (Avoidant/Restrictive Food Intake Disorder), is much more complex and has nothing to do with a child trying to be difficult. I am 100% sure that my son is not trying to cause us grief at meal times. In fact, I know he would like nothing more than to make things easy for us and to be able to try new things without fear.

His issues are rooted in anxiety. In short, he is afraid of what happens when he tries something new and doesn’t like it. He is so afraid, that it prevents him from trying it. I’m not just talking healthy green things that we all strive to get our children to eat, I’m talking about a new flavour of ice cream or a different texture on a biscuit. Even if, logically, he can see that it’s made up of all the things he loves (caramel, chocolate), he won’t touch it if he’s not sure. Even if there’s nothing else to eat and even if he really wants it.

It is about fear. Not fussiness.

selective eating disorder

The problem of selective eating exacerbates itself because after a while of eating a predominantly restricted diet, taste buds become dulled, and new foods tried can often be alarmingly strong or sharp in taste.

My son has a small list of bland, beige foods that he will eat. At the point in childhood when most fussy eating is resolving itself, his list is getting smaller, and he will be nine next month.

At two and three years old, he was more willing to eat and had more safe foods than he does now. He used to love pizza. Now he won’t touch it. If he can’t remember how something tastes, he won’t touch it. He no longer eats pasta sauces or sauces of any kind, so “hidden veg” is virtually impossible. As a result of his selective diet, he can pick up on seemingly imperceptible changes to his usual meals, so “hidden veg” means I lose his trust, and we wind up with another food type he won’t touch.

My son doesn’t eat any fruit or vegetables, despite his insistence that potato is a vegetable and therefore the healthiest thing that he eats. The only fresh, non-processed food that he eats is egg (in omelette form. Plain). He doesn’t eat meat… unless chicken nuggets count.

When he was younger, I couldn’t ever imagine a point where I will ever be able to leave him alone at a friend’s party because the unknowns about the food serve, and the etiquette if he doesn’t like something, was / still is a constant worry for him and would often ends in tears, even when I was there to guide him through it.

Now that he is almost nine, he has found his own ways to cope with party food, but it is still a big source of anxiety for him leading up to an event. This school year, he has his first residential trip coming up. An overnight stay. A full year ahead of this trip, he has already voiced his worry to me about what he will eat, and not wanting to be noticed for being different.

Between the ages of two and five, we spent a great deal of time experimenting with all sorts of ways to get him to eat. I’ve sat with him at the table for hours. Offered all sorts of bribes, including ones I could never deliver on because I was getting desperate and at the same time realising that he just wasn’t going to do it anyway.

“I will get Andy from Andy’s Dinosaur Adventures, THE Andy, to come to this house, if you eat one spoon of that bolognaise”.

We all laughed at the silliness of that trade off – even my son himself could see the funny side that time. The impossibility of it all. But when he says “Mum, I will never ever eat this”. I believe him. It took me a good few years to get there, but I believe him now, and we do not battle over food any more.

He wants to eat more. He realises that he’s getting a rough deal when everyone around him is getting a treat. But even if he really wants to try the treat, he can’t if he’s unsure of it.

I have two other children, both are much more typical eaters. A protest about eating can be dispelled with a bit of encouragement. They have foods they like sometimes and at other times don’t. If they refuse to eat, they will eat later when hungry enough. My son with ARFID will starve himself and get very distressed about it, because in his head, it’s the only option he’s been left with, and no one is helping him. “They will eat when they get hungry” is not something that works in people with ARFID.

Imagine if someone put a plate of bugs in front of you and expected you to eat it. The hesitation and repulsion you feel is akin to how someone with ARFID feels when presented with an “unsafe” food.

If I just had the experiences of my two typical eaters to go by, I would probably be one of those parents congratulating myself on the success of my child’s eating. Instead, I have learnt the hard way that “fussy eating” is not the parent’s fault. Same weaning process, same parents, same food on offer and same food routines. And yet one child has an eating disorder that is not a result of anything I did or didn’t do. If you have a child that willingly eats a varied diet, the credit 100% deserves to go to them. If you have a child that is suffering with food anxiety and selective eating, you should not be blamed or shamed.

I actually hate the term “Fussy eating”. Being picky with food is a normal and expected developmental phase that occurs in the early years. ARFID is a much more serious physiological condition. It doesn’t go away with time. And yet is consistently gets lumped in under the umbrella term of fussy eating.

ARFID is often talked about as something shocking. “Extreme fussy eating”. More shame and guilt heaped upon parents of children with ARFID, who have tried everything possible. More shame and guilt for sufferers of ARFID who already know they should be eating better for the sake of their health, but physically cannot do it. Calling ARFID “fussy eating” draws attention away from a greater understanding of ARFID. ARFID is an eating disorder that needs a lot more attention, research, resources, and support.

The reason I don’t talk much about my son’s eating issues, is because people tend to either not understand that I’m not taking about “fussy eating”, or the immediate reaction is to baulk in surprise.

“No fruit or vegetables?? AT ALL??”

Take note – if someone tells you their child won’t eat fruit or veg, please try not to react like this, however surprising that fact is to you. The parent will already be aware of how serious a predicament this is, and will likely have tried everything they can to change matters. It is a highly emotive matter, we all want the best for our children, and reactions like this only make the matter all the more distressing for us parents.

The future with my son’s eating lies uncertain. It’s clear at this point that this is not a phase. These issues aren’t going away. He currently sees a dietitian at the hospital, although this is mainly a monitoring process where they check his weight and the foods he is eating, but do not offer any psychological support or therapy to help him eat a wider variety of foods. This is an area of support for ARFID that is distinctly lacking, particularly if you cannot go private.

My son has packed lunches at school, the same meal every single day. In the infants, this affected him socially as pretty much all his class mates opted for the free school meal and he was usually the sole person from his class on the packed lunch table. I worry about what he will do for food on school trips later in life, and what happens as he becomes more and more aware that his eating is “other”.

These days, I’ve moved on from feeling hurt by people thinking “fussy eating” is all down to the parent’s approach. I’ve stopped searching for the missing miracle thing that I did or didn’t do to make him like this. If I simply didn’t try hard enough to ensure he grew up eating a balanced diet, surely the  theory would follow that my younger two children would also have become selective eaters. But they didn’t. So I can finally accept that it isn’t MY fault. Nothing I did or didn’t do would change the fact that my son has an eating disorder; ARFID.

These days, my main concern is trying not to create any further unnecessary anxiety around food for my son, and to make sure that he doesn’t feel excluded at social gatherings focused around food. To make sure he never feels like his eating issues are a huge barrier. To make sure he feels he can socialise around food rather than excluding himself, cutting himself off.

So, at mealtimes, parties and BBQs at home and when eating away from home, there will always be “safe” foods available. There will be no pressure to clear his plate or to try anything new. No food rewards or withholding of treats. No conversations designed to induce guilt.

I want him to hear me when I say “I believe you when you say you won’t eat this”. I want him to know that I am there to help him and not try to control him. I want him to know that no matter what, we support him, and we won’t push him. His trust is the most important thing to me, and also the only tool that I believe will be of use whenever the time comes that he does decide he wants to try something new.

And should he decide one day that he is ready to try a new food or drink, we are right here to help and to take things at his own pace.

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32 comments

  1. Oh that sucks. For both of you. 🙁 I know a couple of other families with selective eaters and they have had so many issues being taken seriously, with people just assuming it’s the kids being awkward or mum (always mum of course) not serving the right foods, bla bla bla.

    Izz went through a stage where she suddenly got incredibly fussy and I worried like hell, but thankfully we’re back to ‘standard’ level fussiness.

    I am sure it will be so much easier for him to try something new, should he decide to do so, knowing that you’ve been 100% there for him previously. 🙂

    1. That’s what I’m hoping. I think support is key, and everyone I talk to with older children who are selective eaters have said don’t push them, support them. It actually made things a lot clearer in my head once I accepted that it wasn’t “fussy eating” and that it probably wasn’t going to change any time soon.

  2. He is so lucky to have you x

    This is also a big reason why we should never compare children, and feel a failure of a parent if our child is different.

    Hope he gets to where he is comfortable.

    1. Comparing is futile, and yet so easy to do. I think it’s difficult when it’s your eldest too, as you have no other marker for what is ‘normal’ behaviour and what isn’t.

  3. This made me so sad Chloe. I had no idea – and have no idea how I would cope. It must be so worrying and frustrating – for you and for Arlo. I hope he comes out the other side eventually x

    1. It makes me sad too. I feel for him and I wish I could help him more. He tells me a lot that I have to help him try new things. He doesn’t know how to himself, so he looks to me to guide him, but we’re both as clueless as each other when it comes to doing it in a way that isn’t distressing for him.

  4. Wow – that sounds so tricky. Definitely not what you’d think of typical food fussiness at all! Fingers crossed you guys get to a place where food (and the unknown!) is a little less scary.

    1. Yes, hopefully one day. From what we’ve been told, it might not be until secondary school age when he really gets the motivation and understanding of why he might want to change his eating habits. Right now, it feels like we are in it for the long haul.

  5. This is really interesting. I had never heard of selective eating before. My daughter is pretty fussy, and a lot of foods have dropped off her list over the years, but I’m not sure it’s this extreme. Still I can relate to the struggle of being understood by other people. My daughter is also scared of trying new foods. Will your son grow out of it when he gets older? I can remember as a child not even eating pasta or pizza, but once I was around 12/13, I gradually started bring new foods into my diet.

    1. I am hoping that he will become more open to trying new things as he’s older. My brother was the same with pasta until he was 12 or so, then started trying a few new things.

  6. Wow Chloe, this is something I honestly had no idea about – I have quite a few friends who have children that are very selective eaters and I wonder if even they are aware of this themselves. I think its fantastic that you’ve written about it, its certainly opened my eyes and I will always think of this whenever I am slightly tempted to make an ill-informed comparison between my own childs typical “fussy eating” and another childs food situation in future. Well done for writing about something so rarely discussed. x

    1. It’s not something I was aware about being a ‘condition’ until recently. Am now in a few FB groups for parents of selective eaters and I’ve realised a lot. Not sure how recognised it is in the healthcare service, we’ve only just started looking into it, but his dietitian has been very encouraging so far. She seems to get it.

  7. I actually felt ill when I read this. I used to hear the screams from a child that used to live next door to me; every meal time he would be hysterical. I should add that his parents were lovely and I knew the family well. The child was terrified of eating. We were all tense at mealtimes. So glad you mentioned this. Sadly the boy did not get diagnosed. It even affected his speech as he refused to chew. I admit he could have had a different condition but it sound very familiar. So sorry as you all have to deal with the distress of this; I imagine it is exhausting.

    1. Oh no, that sounds horrendously upsetting for all involved. We didn’t spend long doing meal time battles as I could quickly see that it was never going to work. I’m hoping that Arlo will continue to see home as a safe space for him food-wise. No pressure here.

  8. Oh my! I’m so glad I found this! It’s like reading about my own son, nearly 4.5 years old. We have been referred to CAMHS after about a year of dietician and paediatrician appts. Really hope I don’t have quite so long a wait as I think I might go crazy. I find it so very stressful and upsetting. Just don’t know what to do for the best really. Thank you so much for sharing. At least I know there’s one other person out there going through this too x

    1. Hopefully it won’t take too long for your referral. Croydon is a very busy borough – originally they told me 1 year, then it went up to 2 years (!!!), but then we finally got our appointment through 14 months after first being referred.

  9. I have massive food issues myself and so am not surprised that my kids do, I hate it when people tell me to simply stamp it out… as if it works like that! My son is doing soooo well with his eating these days simply because he is brave and will now try things. It takes time, a lot of effort and bravery on their part x

  10. I really feel for Arlo and your whole family Chloe. I’m so glad you are able to support Arlo so well because this must be incredibly tough for him. My kids are great eaters but I still worry that sometimes they are ‘fussy’ but this makes me realise how silly that is. Would love to read more about how you get on.

  11. Oh wow, I had no idea about this issue. Thanks for bringing it to my attention. Poor Arlo, his anxiety must be so high around food 🙁 What a wonderful and supportive Mum he has. What a relief for you too, to know that it’s an actual condition and not anything ‘you did/didn’t do’. Love your honesty about mothering, as per usual 🙂

    1. I think his anxiety is actually a bit better since we stopped trying to find ways to get him to eat. He seems less fearful that I’m going to surprise him with mystery food, anyway.

  12. I had no idea about this even being a thing. I wonder if my Ethan might have this or something similar? His eating or lack of it sounds similar. We have one meal a week that he will sit and eat and that’s it, the rest are refused or barely picked at. It always makes me so worried. We’ve tried so many things and even had the health visitor round for visits, but nothing has changed. He’s a snacky eater though I think, and I always tell myself at least he eats some fruit and has the things he does like, like peanut butter sandwiches. Thanks for posting this.

  13. Wow that really sucks for both of you. Hopefully things will improve with time and it won’t always be so stressful. It really sucks that he’s so limited and there is so little you can do!

  14. Both of my children are selective eaters 14 and 10. Bread is their staple! I feel your boy maybe feeling isolated at school, why do they separate the tables, crazy! But I’m a home educator so school always seems crazy to me. Wishing your boy a fantastic future with or without a rainbow of foods.

  15. I am also wanted to add that I was a very anxious child, I remember my mum spoon feeding me. We had a limited diet because my dad died and mum has to bring us up on her own. As a teenager I had a swallowing disorder, i wasn’t taken to a doctor and I have grown out of it, I just couldn’t swallow and would spit out bags of salvia, I wasn’t thinking anything about it it was just something I did. My 10 year old fears eating In case he vomits after a few sickness bugs. We talk a lot but not during dinner, I say who cares if your sick it’s horrible but you done it before and you got through it and you will get through it again. I give them their food and if they eat it great, if they don’t they don’t. I sometimes wonder how I managed to survive and how my kids do, but they do. I think that my teenager is just starting to realise what she put in she get out in energy etc. I brought a juicer which she likes and drinks so things are looking up, my son on the other hand won’t touch them! All the best keep your chin up.x

  16. I have absolutely no experience of this but I just wanted to let you know I’d read. It sounds like you are an immense support to Arlo, though xx

  17. Stumbled upon this post while googling selective eating disorder for my seven year old son. I’m too tired to write so all I will say is, thank the lord I have read this. My son well and truly has this and has had this all his life. The only people who understand what we go through are myself my sons dad and my mum. Everyone else doesn’t have a clue and blames me/him. Thanks so much for posting, It has taken the pressure off me a little knowing I am not alone. My every waking moment is spent ensuring my child is eating enough.

  18. How is your son now? Great read by the way. I think my 7 year old girl has this. It’s better now no free school dinners as most have packed lunch now. Its mad they seperate them. Causes food issues. Thanks again for the informative post

    1. He hasn’t expanded on his list of safe foods and he has dropped a few foods from that list since I wrote that post, so he’s technically not improved, but his confidence around food is better and his anxiety has lessened – I think this is a result of us not pushing him to eat things if he is not ready. He trusts that we will work at his pace. And yes, the social aspect of school lunches much better now he is in juniors and more people have packed lunch.

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