ARFID-what do you or your child with ARFID eat?

This instagram account is incredibly comforting and inspiring I find. It's a teenage boy (Toren) and his mum, both autistic, him with ARFID, and they just share about their lives. They started the account as a way to try to encourage Toren to try new foods and it's grown from there. He talks a lot about his ARFID and it can be quite informative too. https://www.instagram.com/reel/DKIMK5yS_4j/?igsh=OWdvd29udTAyZnJn

Oh I hadnt realised my sons arfid is this bad. Only cheese and tomato pizza and mcdonalds fries. Everyone else here seems to eat so much better. Damn

My son is severely autistic and has Arfid. He has only ever eaten..
red Pom bear crisps
chocolate raisins
kinder bars
galaxy counters
1 red apple a day
and a few dry coco pops a day

ive tried so hard to get help and support. He was referred to the Evalina clinic in London but they wasn’t interested because he’s not under weight.
i can’t get any kind of oral supplements in to him so have to spend £40 a month on patch MD supplement stickers that I’m not sure work. He fights to have a blood test once a year.
his last blood test in 2024 showed low selenium and low vitamin D. He’s due one again soon and I’m dreading it. I’m at a complete loss of what to do as he will not try any other foods. He’s also non verbal with PDA profile that makes things more difficult.
i stay awake at night worrying

Ds with suspected ASD and ARFID will only eat/drink:

Buttered toast

Pain au Choc
Cheese / cheese sandwich
Weetabix minis dry
Breadsticks
Ritz crackers
Plain cheese pizza
Chicken nuggets
Crepes with nutella/strawberries
Kids little yogurts
Smoothies
Milk
Bourbon biscuits

The sandwiches/toast have to have Anchor butter on.
The cheese has to be yellow cheddar.
Smoothies can't taste of banana.

This year he has started to tolerate a bit of ham with his cheese sandwich.
He has introduced fish fingers and will have a couple of mouthfuls of alphabites. I am really proud of him.
In 2024 he only introduced chicken nuggets so three items in 6 months is great progress. I follow his lead completely.
In the past he has been pestered by well meaning family members to try things and not wanting to disappoint them has gone ahead and immediately vomited.
I had to refuse offers for tea at grandparents, aunties etc for a very long time after a couple of incidents where he has vomited and become distressed. I had sent his own food on these occasions but of course people don't fully understand.
In my case ds is the younger sibling to much older sisters. I believe people initially suspected both I and my daughters had indulged and pandered to ds.

These days everyone is well informed about ARFID and is on board with my approach.

How do you go about getting a diagnosis of ARFID? Im worried about my daughters eating and reading this it sounds like it could be ARFID

https://www.awp.nhs.uk/camhs/conditions/eating-issues/avoidant-restrictive-food-intake-disorder-arfid

That's so interesting, given all the health advice. I worry a lot about my DS diet, doesn't have arfid but a bit limited and carb heavy. So relieving to hear about people with very restricted diets doing well

I never thought it had an obvious effect on her, but last year we discovered she was severely deficient in vitamin C, and then a blood test showed iron and vitamin D also low. It was pretty devastating as a parent to hear that - she had to start taking 3 pills a day plus drops which was horrific for her as a child who was never able to take medication. But she managed it! The ASD wish to follow the rules has overridden the ARFID 🤣 But our GP had never heard of ARFID…. It’s incredibly frustrating. He tries to tell her to eat more healthily, like she doesn’t know.

What is ARFID? Only heard of it on Mumsnet.

DD:
Hot dogs
pizza
mashed potato
Tesco meal deals
Any fast food take away, Maccys, KFC, BK, chippy
bagel and butter
She has Emetophobia. So much better than she was couple of years ago but noticing more limited food recently. She feels sick every day

Varies slightly as one tolerable "meal" will become disgusting. Pasta has gone recently...

Toast
Around 5 types of cereal
Couscous (only giant)
Sometimes Heinz tomato soup if it's a good day
Chocolate
Banana yoghurt (one certain brand)
soreen banana loaf
Luckily will tolerate multivitamins.

Child with it. Never bothered with formal diagnosis cos...well.....what's the point!!

My DD:
Plain buttered toast
Halloumi chips
Margarita pizza (one brand preferred, can eat in restaurants but it’s not always successful)
Homemade cheese and tomato pasta bake
Chocolate things (cake, biscuits, brownies)
Only drinks water and hot chocolate

She’s on a range of supplements, things got bad 6 months ago after coping her whole life on such a limited diet. She’s 17, ASD, and finally wanting to try other things. So she’s had a few mouthfuls of rice, chicken etc in Wagamama-type places. I hope this is the beginning of a new start for her. DH had ARFID and started ‘curing’ himself at 18 when he moved away to uni. DD won’t be doing that, and it seems very deeply ingrained in her.

We never sought a diagnosis because we knew how little it’s understood in the UK. But it was apparent ever since weaning that she had it.

I had christmas dinner with DHs cousin one year but because he had ONCE mentioned that putting a raw egg into mashed potato makes it lovely and creamy, I just couldn't bear the thought of him putting weird food in what should be a plain and simple roast. Luckily for me their autistic son was having pizza so I joined him! They know all about my ARFID so it wasn't awkward luckily

My friend has never eaten veg, he does take a greens supplement and a multi vitamin
53 no health issues and one of the fittest people I know (regularly competes in tough mudder type courses and top in his age category)

Going out for set menu meals fills me with so much dread and anxiety that I just won't go. And I feel bad when gong for meals with friends or family as they have to think about where I will go

I find it so difficult as a parent to a teenage son with ARFID, I really worry about his health. He also seems to be getting more restrictive instead of less. It’s so stressful. There’s just no help available.

I have ARFID, and like @LarryUnderwood I too found it somewhat easier once I left home and was responsible for my own eating. It sounds silly because my mum and dad never pressured me into eating (they were very understanding) but being able to make and refuse my own food if I wanted to felt like a weight had lifted.

As a kid, my diet consisted of:
Pizza (only cheese)
Rice on its own
Naan bread on its own
Pancakes (had to be made by my mum)
Yorkshire puddings (also had to be made by mum) in their own
Spaghetti with smooth pasta sauce in a separate pot

Now, I would say I am able to eat actual meals, whereas as a kid everything had to be completely separate. I eat certain veg as long as it is prepared a certain way and I think I could convincingly hide my ARFID from anyone who didn't know me well, whereas as a kid that would have been impossible.

I certainly still have struggles, and I could cry sometimes when I sit down to eat something I thought I could eat and my brain tells me no. I struggle eating out at places I don't know, and I will never take up an invite for a home cooked meal anywhere but home and family (who understand).

I'm realising I do quite well compared to some, as I have a broader variety but its very specific.

Pizza (margherita only but if I make my own I'll add pineapple, chicken and bacon)
Chips/mash (homemade)/jackets etc.
Heinz spaghetti hoops - never beans
Heinz tomato soup
Richmond Sausages
Chicken/turkey breast or well done beef/lamb
I'll eat a few fruits but only if they look perfect
Carrots/cauli/brocolli/Cabbage
Tomatoes
Dolmio smooth sauce for a bolognese
Peach Yogurts

No onions or garlic (i will ignore the fact they'll be in pizza sauce and dolmio smooth)
No mayo or sauces other than Ketchup
Never had chinese/indian/Thai etc.
I'll always have either a burger or pizza from the menu if eating out so there has to be one of those available
At an all inclusive holiday I'll likely just eat chips all day every day for fear of contamination or unknown ingredients
I can't eat eggs unless they're cake ingredients
No ham, pork or Gammon even though I like bacon and Sausages
Crisps/sweets/choc/drinks I'll try absolutely any. But I cant try any new savoury foods and regularly go off things I used to like

M&S chicken tenders
Mccain fries
heinz beans
my pasta sauce
cheese on toast/eggy bread
specific rolls with cheese sprwad
mashed potatoes
genius sausage rolls
gravy
Yorkshire pudding’s
cake/custard/rice pudding
certain crisps
recently apples!
rice cakes
biscuits
pizza from certain places

i was a fussy eater, large family, zero choice for food. But I ate more when I had control over it. She’s not interested though.

No judgement, just curious, so if people don't eat veg, how does this affect your health? Or maybe it doesn't?

Basically once I left home and took total control of my diet I got a lot better because suddenly eating was on my own terms.

I had ARFID growing up and it was horrendous. So stressful, made any social occasion nightmarish. I still have it to a mild extent but luckily the things I can't eat now are largely avoidable. Basically I can't tolerate buffet food - sausage rolls quiche, random salads, cold egg etc. If I am invited to a picnic i would always bring my own food or just not eat. But otherwise im mostly ok now. For me I had a watershed moment on my first ever trip away after leaving home. I went to a little restaurant in Turkey where the chef cooked everything in front of us and it was so different to any food experience I'd had before that it genuinely felt like a mental wall was crumbling amd I suddenly could eat these vegetables that I had never touched. It helps a lot that my preferred texture is crunchy so salads and lightly cooked veg are ok. As a child and teenager i was very restricted though - basically chips beans, tinned sweetcorn and vanilla ice-cream. My mum used to weep over how difficult I was to feed.

Mine is now 19.

Toast and peanut butter
Cereal
Chips. Occasionally a roast potato but this is rare.
Eggy bread
Used to eat lots of custard but not seen this for a while.

He was referred to CAMHS who made no difference whatsoever. It is apparently one of the more intractable difficulties.

My son has ARFID. he is a teenager and there is zero help or support for him. So I suspect he will live the rest of his life eating:
Sausage and chips
Nuggets and chips
Pizza
Garlic bread
Ham sandwiches
Bananas