I have an eating disorder called ARFID. AMA

[Soubriquet]

Afrid stands for Avoidance and Restrictive Food Intake Disorder.

I spend a lot of my time not eating. The feeling of being hungry is normal to me.
You always get people who say a child will eat when they are hungry. I wouldn’t.

I’m also extremely picky with what I eat. This is the restrictive part.

I can only eat certain brand of food, and I don’t eat much.

@Soubriquet didn’t want to post on your issue tonight re hidden food. (That became a bunfight quickly! )
Just a gentle thought. Hidden food could be a related issue?
Apologies if I’m way off.

Wasn’t it just

And no I don’t think it’s related. I don’t eat in front of them and this is snack food being dumped not meals

I have one who eats snack food then dumps the wrappers but that’s (I’m fairly sure) laziness!
Are they getting distracted and leaving it “for later”?
Anyway I’ll stop derailing this thread. Sorry.

My dd has ARFID. We had years where she was diagnosed ‘anorexic’ 😞 And so got the wrong kind of help. I don’t have any questions but I’m so glad people are more aware of this

Do you think you could be autistic? Females do present differently to males but both sexes can develop ARFID. My dn has ASD without ARFID but a friend's son does have ARFID.

Id really love to know how many kids have these kinds of avoidant/ restrictive food disorders in third world countries-it mind blowing thinking of the parallels between the haves and have-nots. Those who have to eat whatever they can vs those that will only eat beige.
Just saying.

This is exactly the same as ds. Ate pretty much everything until about 3yo. And then gradually became more and more restrictive. And it’s getting worse, not better. He is under the care of the food OT team at the Evelina children’s hospital, but the plan they gave me for him isn’t working and they have no more suggestions. He is now 8yo.

Meant to quote Flippy when I posted above.

Cornish how would you square this then? DS2 (with ARFID) doesn’t eat beige - wouldn’t touch chips or fish fingers or anything like that. He eats an incredibly restricted diet but it does include strawberries, blueberries, grapes and raspberries. And his other brother (brought up exactly the same) eats everything and always has. Ds2 would literally starve if I didn’t give him what he is willing to eat, he truly would.

You mention your sister had it (but grew out of it).

I have two questions:
How did she manage to grow out of it/ what were the stages of that for her?

Is there any suggestion in any literature or research on this that it runs in families?

I'm autistic and have had this my whole life. I'd describe it as almost a terror of allergic reactions to food - as well as a hatred of textures or taste, it was how they made me feel inside, I was just very sensitive to it. I got very used to being hungry and thin. My mum despaired and used to keep me on protein milkshakes too.

Having said all that, last year I started mirtazapine and put on weight rapidly thanks to a new extra-ravenous appetite. I then grew terrified of Covid and all the stories about extra weight being bad for you.

I decided to lose the new weight and then some, and was able to reinvent my diet through sheer willpower and forcing myself (literally forcing sometimes and then having hours of anxiety) to swallow small mouthfuls of things and waiting days to see if I could bear them.

I now eat 9 types of vegetables, 5 types of fruit, 3 types of fish, 1 new type of cheese and 1 new brand of cereal. I can also drink one of the Huel milkshakes. I don't eat any of the old processed "safe" foods I used to rely on at all, including bread. This would have been unthinkable a year ago, and I have been wondering if I've retrained my gut bacteria or something as I feel much healthier generally.

I still hate the thought of restaurants and not knowing exactly whats in my food (and still worry about different brands), but I've been completely amazed that I've been able to reprogramme myself this much. So I honestly think it is possible through sheer terror - but it needs to be something that someone does for themselves, not forced by others. Sorry if that's not helpful for anyone else though!

I also can't emphasise how difficult it is to make yourself eat something new - a tiny sliver one day, a bit more a week later, a mouthful some time after that - and the one-step-forward, two-steps-back thing. There are also still many foods I cannot do despite monumental efforts!

I have 4 dds, 2 diagnosed with ASD. They have lots of issues with good - and diff issues. Dd9 is definitely texture based, refused to eat pork, long had issues with any meat. Would chew and spit it out. Dd12 won’t eat food touching together, food with a sauce in it. Since lockdown wants to only eat junk food and is gaining lots of weight (I’m struggling to limit her intake). I suspected dd14 might be autistic and has been vegetarian since she was 11. Over lockdown she became anorexic and once again I am struggling with food. Dd14 won’t eat anything with palm oil in it (though I’m similar but it’s hard with online shopping and food substitutions) she’s been considering becoming vegan. I’m wondering if, in part, her Vegetarian/veganism is tied up with her anorexia, and I suppose to what extent this rigidity in food preferences becomes in AFRID?

We are getting cahms help with dd. I have to say I am really struggling with meeting all their dietary needs - they are so varied. I dread every meal time and it is really getting me down.

Sorry, OP, I guess my comment to you is that it sounds like ASD could be a factor for you, like anorexia is actually more common with people with autism? I do wonder if this is the case how any treatment would or should differ in light of this?

Cornish, lots of us would love to know what causes the issues. Then we could presumably fix it.

I have a horrible feeling that if in the "third world" you can't eat the limited food in front of you, then you probably die in early childhood. I don't want to Google it though.

I read something about Audrey Hepburn being very restrictive with food, giving guests tiny portions etc. It was suggested it was related to the very restricted diet and getting used to feeling hungry ‘as the norm’ that she experienced when she lived under occupation. That’s to Cornish btw.
Getting used to feeling hungry is thing, that was my default position for as long as I can remember, it only changed when I was pregnant. My daughter is the same. Neither of us like to feel food in our stomachs and prefer the empty feeling.

@mathanxiety I grew out of this but not until adulthood. And only because I really wanted to. I'd met my first bf (as you can imagine not eating prevents things like relationships, my first bf I was aged 18 and I really didn't want to be the person that couldn't go to restaurants anymore. I tried very hard to try new foods. He did absolutely hate how fussy I was. I then moved onto now dh and he was a complete foody he loved food so much that he'd always be saying try this try that and I always did because I wanted to be with him. I overcame soooo many foods this way.
Like some other pp I couldn't even imagine eating something like a cooked tomato ten years ago and it's taken me ten years to get to where I am now of trying but the main thing was the will you want it to stop. I still can't eat bananas though. They still make me feel ill just looking at them!

I hope you improve OP, you sound like you're doing well maintaining a healthy BMI.
That is pretty difficult when you restrict your food. My mum took me to the doctors when I was a dc and they told my mum that cookies were better than no food at all so to just give me what I want! So she did. And I lived on biscuits chocolate and sweets for about ten years of my childhood. I wouldn't recommend it though.

Cornish sounds like you are suggesting that it's all a bit of fussy eating and all we need to say to our children is 'think of the starving kids in Africa'. I wish it was that bloody simple, I really do.

My child has a neurodevelopmental disability. He weighs 49kg at 6ft. He's not just being deliberately fussy, there's a complex eating issue going

That really good that you have put weight on. You must be pleased I'm also pleased to hear you can get your shakes on the NHS.
It's an interesting thread.

OP, thank you so much for starting this thread. I also have ARFID and it's tough sometimes. There were times in my childhood where I literally only ate about 4 or 5 different foods and I was chronically underweight until my early 20s.

I am fortunate that mine has improved in adult life. I now eat from most food groups but fruit and veg are still very difficult for me. I take supplements to try and stay healthy. I struggle with iron levels particularly.

Can confirm that ARFID has no real relationship to anorexia. It's not a form of self-harm. It's not connected to body image. It's a sensory issue. The tastes, and particularly textures of many foods just make me gag. Waxy potatoes being one of my absolute worst.

OP, Google Felix Economakis. He's a psychotherapist who is very knowledgable about ARFID. I've used some of his online resources before and as a result have been able to add a few new foods to my safe list. I can now ate red cabbage - which I would have never have bet on in a million years!

Thanks for posting! Good luck xx

Incidentally for those people who have mentioned ASD. ARFID is much more common amongst autistic people. But neurotypical people (like myself) can get it too.

Ironically my son has ASD and he eats anything and everything. So it doesn't always follow...

Hi I've just come across this post and have a few questions

• Do you just eat certain foods all the time? Or do you have days where you feel you can manage more or variety?
• Does your mood affect it? Eg if you are feeling stressed do you find you eat less?

Did it affect your periods? How does it affect your social life?

What do you wish you could eat? Do you have goals for future foods

? Fell off