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

[AuADHD]

I’m sat here eating the same comfort food that was safe back in 1994 and it got me wondering what other people with ARFID eat. What are your safe foods and what are your absolutely won’t eat?
Mine:
Black coffee with vegetarian pâté on toast.
Pizza but preferably homemade or from certain restaurants. If it doesn’t look right though I won’t eat it.
Dry cereal, preferably Frosties, Golden Grahams or Cheerios
My homemade soup
Chips
Biscuits

I eat more than that but not a lot of variety.

I'm saying some days there was no bread or milk, I'm saying school dinners kept us alive, I'm saying dinner was taken it or leave it because there were no other options in the house.

What makes you think the poverty I gre up in wasn't true poverty

The thing is with arfid it doesn’t matter how many alternative foods are available if it’s not a safe food then you simply can’t eat. Not wont - can’t

before DS was tube fed he had times when he went 5 days without eating anything.

How many meals do you think a child would have to miss before they'd eat out of desperation? That seems to be your point. They'd eat if hungry enough? I don't know really, my younger sister was much worse than me, even as an adult in her 40s she has a very limited diet. I've seen her beaten pretty significantly and still not be able to eat what she was given.

The 1 option thing would actually be fine, you'll notice most afraid sufferers eat 'staples' reasonably well so there must be some inbuilt survival strategy at a basic level. Potatoes, pasta, rice, whatever the local staple is tends to be accepted in some form.

I’ve no idea how you grew up and I don’t very much care for these purposes. It in no way invalidates my point. Which is that even in the circumstances you mention you did know when you would next get food (next school dinner) and I doubt that you had no choice other than one or two things every meal, every day for months.

I’m not knocking your life experience, I just don’t think it equates to the experience of someone in the developing world.

This is from your experience and study of ARFID in the developing world is it?

Ok. School has pretty significant breaks and noone was sending food home in the eighties for those on free school meals.

What do YOU think happens? You clearly have an opinion? Is it that people would eat if not indulged?

thats not quite how it works.

we got some horrible advise when ds was younger from a “professional”

result a malnourished child who was admitted to hospital and ended up with a feeding tube.

he would absolutely go hungry then eat something he doesn’t think is safe. He’s proven that by his hospital stays. Majority of the foods he now deems safe are foods that the feeding team have offered him over time.

we never use to own even frozen nuggets. Don’t even have a bag of frozen chips. Rest of the family eat fresh home cooked meals

its not a won’t it’s a cant.

Regarding the developing world, if a child will eat the local staples as a safe food then it would be fairly easy to eat the same food almost every day. If they can't eat the local staples and don't have access to supplementary feeding or feeding support (e.g., feeding tube) then - to be blunt - they die and they become another fail to thrive/malnourishment statistic.

The same would have happend in this country in time gone by where a child fails to thrive or wastes away or inexplicably sickens or becomes a changing child repulsed by/unable to stomach human food (if you subscribe the the theory that many changling stories could potentially be attributed to neurodiversity).

I don’t, actually. My husband is not diagnosed, but certainly exhibits ARFID-type behaviour. It’s hard to live with, which probably makes me relatively unsympathetic, but I don’t know anything like enough about ARFID to have an opinion.

I started reading this thread because I am aware of ARFID and that it may be a way to describe and categorise a person I know - so was interested. I was encouraged to contribute by your - and others - comments on what happens where there is poverty because I do know that other eating disorders are rare to non-existent outside of wealthy countries and studies tracking their prevalence show significant increase as GDP increases. So I suspect you are probably making a false comparison. I may be wrong, but you seem to be trying to suggest that I am belittling your misery caused by poverty and ARFID. I’m not. I just don’t think because you managed to have ARFID living in poverty here that that tells us anything about the presence of the disorder in the developing world.

If I seem dismissive it’s of your lack of precision in critical thought, not how you eat.

No I don't think you're belittling misery (I'm also not miserable 😂) I'm more annoyed at the suggestion that arfid is somehow caused by choices and privilege because it really isn't.

As I said, I now eat almost everything but I agree it's a nightmare to live with for all involved.

Hi - I have a 19 year old who went through CAMHS for her ED 7 years ago. But they treated her as if she had Anorexia and it was a pretty traumatic experience for her but she wanted to gain weight and be 'normal' . She gained weight but her food intake now is so minimal that she looks skeletal. But in the past five years knowledge about ARFID has really grown and my GP knew about it.. There's an ARFID pathway at the Maudsley as well as Great Ormond Street Hospital. BEAT (the eating disorder charity) has an ARFID support group. And keep pushing your GP - especially if your ciild is pre-pubescent and underweight. There really is a much better understanding of it now. Good luck. My daughter is about to try an anti-psychotic which increases their hunger and decreases their anxiety. Seems scary but...... Good luck

I don’t know if Ds has this or just fussy. But he would rather starve than eat something he doesn’t like. So in third world country with no choice he probably would have just starved by now .

Ie his list is usually:
Bread
cheese
Fruit and some raw veg
Greek yogurt

Anything else is Suspicious. Doesn’t really eat hot cooked foods, or meat.

For example we ordered him a cheese toasty out as he asked for it. But the cheese was wrong and it was too toasted so he wouldn’t even try it. Ended up getting plain cold croissant.

He used to eat everything from weaning 6months- 18 months. Then was ill. Then started eating again after weeks of mainly just breastfeeding again when ill. When he started it was suddenly really limited. He actually doesn't like most fast food items. It’s been about 4 years.

Recently ie last 6 months he has been getting a bit better actually. He will
now eat plain buttered pasta, odd spoon of plain rice, and plain omlettes.

I’m hoping he will gradually outgrow over time. He is on iron medication ( blood test showed low and multi vitamins.)

My child is autistic but not specifically diagnosed with AFRID. He has a huge aversion to dairy and is very sensitive to smelly food as well. He has a nose like a bloodhound. Luckily he likes cold crunchy things, some of which are healthy (apples, carrot sticks, raw bell pepper.. )

In laws are amazed he eats raw peppers but doesn't like gravy or custard.

My DS would probably get a diagnosis of ARFID now. He had over a year at around 18m old where he ate nothing but potato waffles. I really mean nothing. I was at my wits end and the general advice in the 90s was you're the parent, make him eat. Now as an adult he is diagnosed with autism. He can find something to eat in most places as long as they offer gluten free as he also has coeliac and I wonder if the ARFID was actually linked in some way, perhaps food made him feel ill and he couldn't explain. He has only been gluten free for a few years and has been so much better since. But he still eats very plain and simple foods - nuggets and chips, sausage butties, margarita pizza, plain pasta with maybe a bit of butter.

@Caspianberg I think one of the most difficult aspects to deal with is that your child will quite literally starve themselves to death if they can't access food they will accept. People who have not dealt with this just don't get it. Hands up who's had comments along the following lines - he'd eat if he was mine, you just need to be firmer, we don't allow fussy eating in our house!

My dd has ARFID.
She hasn't eaten a vegetable in 9 years.
She currently eats
Penne pasta.
Cheese.
Eggs.
Weetos.
Wraps
Cucumber.
Walkers Cheese and onion crisps.
No sweets only Dairy Milk chocolate.
She only drinks water and occasionally semi skimmed milk.

I buy vitamins for her. Its restrictive but not that difficult to manage I just give her what she likes and offer new foods regularly.

@Toomanyweedsoutthere - my Ds is the same. Luckily eats fruit and raw veg, so will eat a whole raw pepper for example. It’s the cold texture I think.
If I put a tiny crumb of cooked pepper in something it’s picked out as disgusting

@DrCoconut - yes. It’s like a comedy sketch sometimes with people. ‘ wont he eat a wafer thin bit of chicken?’ Then they give it to him as theirs is superior and he just looks at it. We have tried the whole he will eat when hungry, but all that happens is he doenst eat anything. Then next doctors appointment he’s ‘ low weight, needs to eat’

Kindergarten told me ‘ all kids eat when they see others, he 100% will eat meat and hot meals’ - so he’s been staying for lunch now around a year. He’s been eating mainly yogurt only there for lunch for around a year!

All the time...

My son has been tube fed for 5 years and some people still think they can cure him in 24 hours!!

A child I know: home made carrot soup, chips/fires, bread and butter but no sandwiches, apples, bananas, junk food and only with a plastic spoon. Metal spoons actually scare him. AFRID or autism?

ALL THE TIME! I would never wish it on anyone or their child but some people are absolutely incapable of understanding unless they experience it. Unfortunately a lot of HCPs...the amount of condescending, smug and wholly damaging advice and comments from people who should know better.

@Sirzy Goodness, that’s so hard. How does he manage day-to-day with school, etc.?

I am very lucky. His school (mainstream) is fantastic. He has full time 1-1 and they help him with his feed in school (he is year 10 now and can do it pretty independently)

he gets most of his nutrition via overnight feed So it doesn’t impact him too much (it does me!)

@Sirzy Wishing you both all the best, he sounds as if he’s coping well at the moment, which is great. His school sounds fantastic.