Parent of Young Person with ARFID (Avoidant Restrictive Food Intake Disorder)- AMA

[Verbena17]

Thinking this might too niche a subject for an AMA but could be quite useful as so many more children/people are being diagnosed with it & today marks the end of ARFID Awareness Week
Ask me anything…

Thanks for starting this thread @Verbena17

I think my ds2 probably has this, although never diagnosed. He is 18 too, but is NT, which I suspect has made a difference to the outcome in his case. He was never a big eater but started to drop foods at about 18 months when he had chickenpox. He had it badly and we were told he probably had spots in his throat which would have made it painful to swallow. I thought he would start eating again when he was better but he just didn’t and he started losing weight. It got worse a couple of years later when he choked on a cheese sandwich at pre-school. At that stage his range of safe foods was really limited.

It’s been a long hard slog to get him to where we are today. For years eating out was impossible and even eating at friends houses was tricky because he would get stressed. I usually took some food with me because he didn’t trust anyone else to prepare food for him. We were quite successful with finger food, I think because he felt in control. A friend recommended this book to me: www.wob.com/en-gb/books/jennie-maizels/finger-food-for-babies-and-toddlers/9780091889517?cq_src=google_ads&cq_cmp=18082217234&cq_con=&cq_med=pla&cq_plac=&cq_net=x&gclid=CjwKCAiAmJGgBhAZEiwA1JZolvda5dC7PhuhqC7fxjQdQekz-uldxZMSCVqLybJ1tpyO1ay6B_f7RBoCFv4QAvD_BwE#GOR001311989. It includes a recipe for spinach and ricotta filo parcels which were rejected (too green!) but it gave me the idea to try filo parcels made with whizzed up casseroles (eg chicken and veg). That was his main food for many years! As he got older (probably from around the age of 10) we were sometimes able to persuade him to try our dinner as long as he had a plate full of filo parcels to eat (ie he knew he wouldn’t go hungry and there was no pressure on him to try ours). That was how we eventually expanded the list of foods he would eat.

He now eats a reasonable range of normal food (although slightly limited, especially with respect to fruit and veg). He’s also still underweight but probably only about half a stone or so. And he still gets stressed about eating in certain situations. Anyway, I just wanted to join in the chat! And to say that it can get better for some of these children.

I feel your pain - at the start of lockdowns, there was a shortage of Warburtons Soft bread and parents in the ARFID support Facebook group I was in, were all sending each other stuff in the post if their local shops had things or sending links to online places where you could get still stuff! It was a nightmare - worrying that their main safe foods would become impossible to buy.

Has your DS now managed to replace any other sausages?

@Verbena17 - what a great idea for an AMA! I also have an autistic son with ARFID. He's 17. CAMHS referred him to the Maudsley's ARFID Clinic last year because his weight had dropped so low (well below the first centile). We've been having online meetings for the past year and he's now at a healthy weight - something I never thought was possible.

Your son sounds very, very underweight. Is he taking food supplements? My son was prescribed Fortijuice (the only one he'd tolerate) and that has made all the difference.

No, when they changed the recipie of the original ones I saw the local Heron Foods still had the old recipient ones in stock and I bought every single box. Then after about a year they bought out the low fat ones and he ate those. But when they discontinued them he wouldn’t have any others.

he did start eating battered fish just after lockdown (previously he’d only eat cheap fish ringers or fish cakes. And last summer his friend got him eating pasta bolognese made with dolmio smooth sauce (friend showed him the recipie he made for his little brother).

He is at Uni now and pretty much alternates between pasta bolognese, fish, chips & garden peas & the occasional margarita pizza (but only certain brands)

he has always eaten some veg. Carrots and peas have always been safe.

but the sweets and crisps he eats scare me especially as his dad is pre diabetic and his grandparents developed it too.

I think I have it to a milder degree. I am very wary of foods and can’t bring myself to eat certain things. Cheese is a particular problem.

Hi @MerryMarigold
Are you worried about your DS leaving home? I worry he'll live off lucozade and lose even more weight. Is your DS able to be logical about food (eg. I don't like this but I know I need to eat it to be relatively healthy)? Or even, I know I need to eat to stay alive. Can his brain compute that?!

Has your DS ever expressed he feels left out when family are all eating and he isn't having the same thing? I worry it isolates him even more.

So currently, DS is nowhere near leaving home and I think if he does manage to at some point in the future, it will only be once we know he can manage to cook for himself and be motivated enough to get water and food. At the moment, we coax and remind him to drink and eat everything. If he sees his empty water bottle, he wouldn’t refill it, unless he was super thirsty. Then he would ask me to fill it. He would refuse to fill it himself most of the time. Same for any food.

Following the advice from Specialist Support Services, he eats his meals at his computer desk on his own. I say meals - they’re mostly just foods - not actual meals. if family come for lunch for example, he will come and say hi then go back upstairs away from the smells and sights of the foods. If he does sit at the table, we have to have any juice or mayo etc well away and off the table. If we go for a meal out, there are foods we just wouldn’t order, so as to be able to get him to eat.

He is mostly logical but would never eat something he can’t accept just because he knows he should. I have to not worry about the health side of it (we would never call food healthy or unhealthy - although he completely knows the difference) because currently, we are just trying to get him enough calories to prevent tube feeding. Some people are tube fed at his weight/height but he’s adamant not to be. If his calories were below 1000 regularly I think he would have to be. Until he puts on more weight, he cannot safely exercise other than some gentle walking. We don’t want him using up vital calories.

He doesn’t really say he feels left out. But he likes being alone because of his autism anyway so it’s not really an issue. He spends most of his days trying to reduce his own anxiety. We very rarely eat out - other than his daily MacDonalds but that’s from the drive though. The ED team said how important it is for him to have the MacDonalds - that’s the only protein he really has other than a bit of milk and it’s the only time he will eat cheese.

Hi @Whitacre -thank you 😊. I think for NT children/adults, ARFID might be more treatable with respect to trigger incidents such as illness/choking, like your son. That’s just my opinion. Did you ever consider him trying hypnotherapy or CBT?
You’ve done really well though - getting him to the place he’s at now yourselves, with a range that’s mostly normal. Please tell your DS from me, that his story has given me some hope 🙌.

Losing access to McDonalds & KFC during lockdown was a problem. Popcorn chicken is a safe food. He will now also eat Aldi’s version of it.

Hi - thanks….I wasn’t sure anyone would ask me anything 😬😊.
Thats great you’ve been under the Maudsley and had good success.

My DS won’t accept any food supplement. I’ve got Ensure powder but he won’t try it. I think that would make a huge difference to how he feels in himself. I’ll maybe suggest it again. He’s not been height measured for a while but he’s either 5ft 11 or 6ft now. He weighs just 8 stone. Last year he was at 8st 7 for a while but it quickly dropped once school started back in September. It now stays around 8st/ 8st 1 but drops down to 7st 13 on occasion. He has very little body fat and his clothes hang off him.
Supplementing can be tricky in underweight people.

I teach children with severe and complex needs most are autistic and probably half have AFRID. Even in our school staff members don’t “get it” and still try to force children to eat. I have a few children who eat nothing at all at school just now still on bottles of milk, others will only eat thing like bananas and yoghurts having never developed the ability to chew. I really think there needs to be more awareness of AFRID.

@Comefromaway that’s great he’s managed to food chain popcorn chicken!
And it’s brilliant he’s at uni and coping ok with his meals. That’s a good few things there with some good carbs and fats.

So this is really interesting... my partner a grown up man with no ASD dx, has a seriously limited diet. He will balk off the smell if I'm eating something like beans or cheesy crisps. He eats wraps and bread, cheese, and about 5 other safe things. Won't contemplate anything wet or saucy, worries about texture, won't eat something if its touched something that might have sauce on etc. Always been that way since around age 3, but over the years has managed to include more safe foods as before that he was living off cheese and bread. Do you think that sounds like ARFID?
In addition, one of his kids is like this too. He will chew things into a paste or way over fill his mouth, he will eat maybe 3 different meals, and he suddenly stops eating snack type foods saying he hates them now because they look or smell different. Is that learned from dad do you think?!

Hi @headache Have you had training about ARFID? That’s a shame the other staff members don’t get it. Could you suggest a training session with them - maybe bringing in some parents to explain it more?
At our DS’ special school (he’s actually just left as it’s just too much pressure now), we agreed to him joining in with the cooking lessons as we thought it might help. It didn’t help at all! It made it way worse unfortunately.
He will sometimes want to bake or cook something at home but not very often. Last night he made cookie dough to eat raw (the flour part is cooked) but it was too sweet. But at least he enjoyed making it.

What a great job you have - very rewarding 😊

Here’s the link to the UK’s ARFID charity
ARFID Awareness UK

Hi @Zola1 obviously I can’t say if it’s ARFID or not, but yes, it does seem very much like ARFID.
You can go to the web link above and check out the diagnostic criteria and much more info.
Theres also quite a lot of great info on the Eating Disorders topic here on mumsnet.

Is your partner happy to chat about his eating or no? If yes, you could maybe show him some of the posts here and see how he feels about it.
Whilst some areas don’t have ARFID treatment programmes, some do have ARFID screening for adults so if he’s keen to find out an answer, he could ask the GP what service he could be referred to.

As an adult though, it might be worth showing him some food chaining information. So he could start with maybe choosing a different brand of wrap or a different colour cheese. Just small changes to the foods he already eats so no new food types to start with - just building on his current safe foods.

No I’ve not had training but I’ve read up a lot about it. Just want to help my little guys as much as I can. Yes I love my job it can be hard work but the children make it worthwhile.

That’s so lovely ❤️.
I know you’ll be super busy, but you could maybe see if school would let you make up an ARFID pack (maybe with the school nursing team helping) for other staff members to access.

@Verbena17 - I'm sorry your son won't accept any food supplement. I know this is very common with ARFID. My son also refused any supplements, but the ARFID clinic at the Maudsley were very clear about the physical and mental impact of his low weight and he finally realised he had to force himself. The Fortijuice is the one he finds the least unpalatable (he says he prefers the texture to Fortisip, which is more like yogurt). He wouldn't have been able to put on weight without it.

I'm sure it would make a huge difference to your son's mood if he started a daily food supplement to boost his weight. A year ago, at his most underweight, DS2 was withdrawn and had no energy. He often felt dizzy and breathless. He had no interest in anything. I felt as if I couldn't reach him. We didn't realise it at the time, but I now know that he was basically starving. Since he's put on weight, he's transformed: he's affectionate, has regained interest in life, started studying again, has a sense of humour... He still lacks energy, but he's beginning to take short walks. He's now 5 foot, 6 and weighs 8 stone, 3Ib. He was 6 stone 3Ib a year ago. You said your son is around 6 foot, but only weighs around 8 stone or sometimes less, which worries me. I'm surprised that he manages to go to school at all. DS is educated at home now, but when he was at school we were often advised (by CAMHS) to keep him at home on bedrest to conserve calories.

It was the facts about low weight that helped my DS accept that he must take food supplements. The Maudsley therapist spelt out to him how his low weight was affecting his brain and body. When she later asked him why he was able to start having Fortijuice, he said it was 'the logical thing to do'. I wonder if the Eating Disorder team or your GP could spell it out to your son? I know my DS won't listen to me or his Dad at the moment. Apparently, we know nothing!

I think I’m definitely going to bring it up and suggest the school nurse could maybe give the assistants some training. I’m trying to educate them that badgering a child to eat is not the way forward that they are not being fussy and stubborn. Snack and meal times should be fun not sources of anxiety.

@Rarewaxwing thats very good weight gain for your son.
The ED nurse has talked to him multiple times about the importance of eating more/supplements etc but he doesn’t have the motivation. The fact that he can’t solve anything quickly. He lacks the ability to make himself speak in public/shops/school teachers unless I’m with him so he sees no great future for himself at present. We tell him it will get better over time and as he matures but at this moment, he can’t see that.

@Rarewaxwing can I ask - do you live close to the Maudsley so that’s you’re nearest ARFID clinic or can anyone be referred there regardless of distance away?

We asked multiple times for our DS to eat alone, which is what he wanted. But they always said ‘oh we can move the other children away a bit’. But that wasn’t enough.

In the end, even when they agreed to let him be on his own in a room, other children ran in and out, touching him, wiping sticky fingers everywhere etc. He refused to eat or drink from the moment he woke up at home until when I picked him up at 3pm and took him straight to MacDonalds. No water even that whole time - for weeks on end. No wonder the nursing team couldn’t take any blood from him!

@Verbena17 - yes, I understand those difficulties. My DS is very similar.

We're not near the Maudsley, but have no ARFID services nearby, so Camhs referred us. All meetings were online.

@Verbena17 - going to sleep now, but happy to PM tomorrow if preferred.

@Toffeewhirl i think the Maudsley are children’s services aren’t they? Not adult now my DS is 18? He also wouldn’t speak to anyone on zoom sadly.