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Any one else have a kid with ARFID?


Chocolate Addict

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Chocolate Addict

ARFID - Avoidance, Restrictive Food Intake Disorder.


It often shows as part of the autism spectrum. My 15yo has had it since about 3yo. Severely strict diet, have tried numerous therapies without much result.


It is in the same category as bulimia and anorexia but not as commonly known, it is so much more than fussy eating.

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  • acidulous osprey

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  • VeritasVinumArte

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Both of mine would likely have been diagnosed as kids if it were something parents sought in addition to ASD back when my kids were little. My oldest is better but still restricted. My 17yo is still severely restricted. I was similar (many times my mum screamed at me that if I didn’t eat she would take me to hospital and doctors would stick needles into me) and it wasn’t until I was in my 20’s and 30’s that I was able to tolerate certain textures and tastes but even now there are s I simply cannot cope with. 17yo has had some health complications due to his severe lay restricted intake which include chronic anemia, malnutrition and vitamin D deficiency causing bone degeneration and requiring treatment. He has also only recently made it into the healthy weight range for the first time in his life (only a few years after finally making it on to the growth charts!).


In practical terms food in our home is a nightmare. There are only a few things the boys both eat and none of them are very healthy. 17yo also has high blood pressure which I am sure isn’t helped by his food choices. For most of their childhood all meals required me to make at least two different options. Food is an exhausting proposition in this house.

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Yes my 17 yo has it. Is very limited in what he will eat & is both underweight and very short for his age (though that could be partially because I am only 152cm). He takes supplements daily & has very low iron levels despite taking an iron supplement. I find that most people don't get that you can't just tell him to get over himself, or that things he won't eat can't just be hidden. Like [mention]Kadoodle[/mention] it has taken me a long time to be chill about food where he is concerned

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Fruitmincepies

I don’t belong but I need to follow the discussion. Both my kids have restricted eating, 6yo DD eats healthy foods (likes plain raw veggies, plain meat), but there are a large number of foods she won’t eat (anything mixed basically). At least she is becoming more open to trying new foods, so definitely doesn’t qualify for ARFID I presume.


DS is only 3yo but has never eaten a wide range of foods. He’s never eaten any meat, or any fruit or vegetable in it’s natural form (I hide them in things he will eat, mostly in chocolate cake). Currently he eats yoghurt (there are two acceptable sorts), toast with butter and vegemite (has to be the same bread), chocolate biscuits (he’s got some variety in the acceptable sorts here), chocolate cake, ice cream, Cheerios, and a range of three cracker types. Sometimes he will eat cheese, or peanut butter, or a honey sandwich.


So my aim is to get him to a dietitian this year as I’d love for him to increase his range of foods. He gets lots of exposure to other foods, asks about food, he’s even loved growing and picking our own tomatoes recently. Makes zero difference. Hence I’m following to hear others stories.

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Crocodilesnap

My almost 10yr DD has it and while she doesn't have asd she does have adhd plus anxiety which plays a big part. Its hard, really hard and trying to ensure she eats something while not compromising the "good eater" by only serving her approved choices for every single meal.

Unfortunately she has dropped another couple safe foods recently and is looking really quite sick again... surprisingly though recent blood tests only showed low iron...

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StillFreddiesMum

Yes, unfortunately DD#2. I am in Sydney and if anyone wants to PM me I am happy to listen. I also know 2 other teenagers who have AFRID. In DD#2 case it came from her anxiety and started when she was in year 4 (so much guilt for me). She had a massive year where our kids changed school, I was working FT, and everything just spiralled out of control.


We have had massive interventions over the last 4 years - child psychologists, child psychiatrists, meds, dieticans, doctors, you name it. What I didn't know that after we got her back to eating (when she was in year 5 / year 6) she got so worried / anxious / stressed about starting high school in 2020 - it came back with a side order of OCD and delusional thoughts because she simply didn't have enough food in her system to think clearly. This broke me. Absolutely broke me. I didn't know it could "come back" - I thought we had all put in so much hard work to get her eating again and trying new foods that this insidious beast would rear its ugly head and gain a new foothold when she was worried about starting high school.


I mentioned in another thread that I sat in a doctor's office last week sobbing because I eat far too much and I have spent the last 4 years just keeping DD#2 ALIVE and out of hospital that all my thoughts have been about her and her eating and going to different supermarkets all the time just because she would eat the crackers from IGA, but only X brand cheese from Woolies, and Y brand plain yoghurt from Coles. I used to spend all may day dropping the girls off at school and then going to 3 to 4 different supermarkets in 3 to 4 different suburbs to buy the food that she would actually eat.


She got obsessed with reading the 'use by / best before' dates on food. She obsessively washed her hands until her skin was red raw. She couldn't let food touch other food on the plate (eg the corn couldn't touch the peas) or she wouldn't eat any of the dinner.


Sorry for shouting but this BROKE ME. Because I now know that it can come back I am super vigilant about making sure the worries and anxiety doesn't take over we have kept up the counseling even though her eating has improved so much. Over Xmas she was saying that she couldn't eat X food - even though it was her favourite and I knew it was because the eating disorder is trying to get a foothold in her MH again. So we continue with the counseling, we talk about how the eating disorder is trying to "take control and saying she can't have homemade pizza" but she has the power to make her own decisons and she is allowed to be rude and bossy to the eating disorder, we do mediation to calm her mind down.


Did I mention that this awful, terrible, rotten eating disorder broke me?

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A letter to elise

I hear you. It’s exhausting.


I have one kid with severe food allergies, so she’s already on a pretty restricted diet. So no dairy, peanuts, treenuts, legumes or wheat. Add to that all of the aversions, and it is so, so hard. She won’t eat anything cooked in a sauce or mixed together, so stews, casseroles, stirfries and pasta sauces are all out. She doesn’t eat any vegetables except for cucumbers and potatoes (and only if They cooked in specific ways). She thankfully does eat red meat, fruit, and will drink soy milk. She doesn’t eat bread or sandwiches, and will only eat one type of cereal (not that there’s many she can actually eat). She is tiny, but thankfully steady at the bottom of the growth chart.


We’ve seen dieticians, a psych, specialists etc. every time someone says “she’ll eat it if she’s hungry” I want to scream. No, she won’t. She will starve herself. They recently discontinued the only spread she will eat on crackers.. I have no idea what I’ll be able to send to school this year.


To add to that, my oldest child developed severe anxiety in 2020. He became obsessed with being contaminated with germs or allergens. So now he won’t eat anything she’s allergic to either. If I try to persist, he will just take himself to bed with nothing. When he gets home from school, he showers and scrubs himself raw, because he thinks he’s contaminated. It’s heartbreaking.

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DD doesn't have a diagnosis; I haven't sought one and I don't know that she would quite qualify; she has a very restricted diet but SOMEHOW she is growing. She wasn't even on the growth charts for her first 13 years or so, but is now. She also has a background of eosinophilic oesophagitis and severe anxiety.


Honestly her anxiety is such hard work for me that I just can't deal with the food as well, so like kadoodle and keirapep I'm pretty chilled about it, because I have to be for my sanity and because nothing I do helps anyway.


Her diet is so deficient in absolutely everything. I buy vitamins etc but she has them for a couple of days then refuses, as she feels her pill burden is too high. She's intermittently taking her iron atm because her sleep specialist said she has to.


Every so often I take her grocery shopping to see if she's inspired to choose anything for herself, but only ends up with chocolate and lollies. Sometimes some berries if I'm lucky.


I've tried cutting up a selection of food and packing it into a bento style box, she picks at it for a couple of days but then the novelty wears off.


She eats those pasta side dish packets (certain brands certain flavours) so that's what is basically keeping her going.

She also eats sushi (certain flavours from certain shops) but sometimes she won't because it's 'too cold'. She's very fussy with temperature of foods, and texture (can't do hard food). Doesn't do dairy. Doesn't do meat. Will technically eat chicken but is sick of it, but can't be dry because of her EoE. No veggies but will eat a small selection of salad items. Some fruit.


She can be unpredictable though which is good but frustratingly hard to plan for; occasionally she'll eat a whole dinner but won't eat the same again next time. So I continue to cook and serve her dinner just in case, but usually it's a few bites of selected foods, or nothing at all.

She only eats about once a day.


Psychiatrist has spoken to her about it, especially re the effect on anxiety symptoms, but it hasn't really helped.


Anyway I'm rambling now I think. Sorry I can't be more helpful.

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Yes!

My eldest is 11. I can list exactly what he will eat and when.


We are having trouble as his growth is increasing but his food choices aren’t filling him up enough. And are pretty much white.

I explained it to everyone who says “he will eat if he’s hungry” that this is a child who won’t eat lollies, sweets or cake.


We’ve just been on holidays for three weeks and the only way we can do that is to have self catering accommodation and buy his dinner.

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VeritasVinumArte

Yes my eldest 15. We have had holidays where he has refused to eat for over a week due to the bread & cheese not being right. He had nutrition at school and I carefully had to go through his issues with his teacher saying if you try and push him (to touch or eat something he doesn’t like) he will have a full blown anxiety panic attack involving full body shakes, shivering, sweating at the THOUGHT of touching or eating items.


We did have a period in late primary school where we were doing weekly psychology appointments and slowly had some headway (added chicken nuggets to his safe foods eventually - first meat he had eaten since 15m), but eventually stalled. He and I have discussed the social impact on him too.


Worst thing was grade 8 camp where he lost 5kgs in the week due to increased activity (hiking every day) and living off a half a weetbix (dry) and about 10 strands of angel hair pasta (an added food by psychologist but he can only stomach a tiny bit). 5kgs was 10% of his body weight in that week. You could visually see the difference.



ETA when he was doing growth spurt he was on Pedisure. We see the Drs for blood tests every year. He is on Fefol for Iron and folate and Vitamin D these days.

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Chocolate Addict

Mine has a super restrictive diet, yet somehow manages to put on weight. He won't do needles so no recent blood tests but the doctors are happy with his growth and don't think there is any iron deficiency.


He basically lives on peanut butter sandwiches. Has to be on bread from the bakery at our local shops but at a push will eat other bread. It is only the sanitarium 100% peanuts verision. What he doesn't know is that I have been mixing in physllium (?) husks for as long as I can remember. lol He knows I have to mix the oil through but doesn't realise I am putting other stuff in. lol If I don't, he gets badly constipated in a matter of days.

Other foods he eats - nuggets and chips but not home made or frozen and is super fussy on where they are from too.

Snacks? the occasional lollipop (strawberry and cream chupa chup) and pancakes (butter only, nothing else).


He has not had vegies, pasta, rice, meat (do nuggets count??) fruit or anything in over 10 years.


He will often say he might want to try certain foods but when it comes to crunch time he won't do it. He did however try 2 grains of rice and a millimetre square of seaweed from my sushi roll the other week. lol It was tiny but the fact it went in his mouth was excellent, the fact he swallowed without gagging? amazing. :)

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I’m following with interest because DD 3yo has a pretty restricted diet that is getting worse and I’m planning to seek support this year. She’s not anywhere near as severe as some, but her absolute refusal to try new foods and the fact that she’s dropped many ‘acceptable’ foods over the last six months have me worried. She also looks very tired all the time, although she has energy and is growing. We have been trying the division of responsibility approach with no luck.

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StillFreddiesMum

I just want to say all my "likes" are I hear you and I support you. It's SO hard and I agree with the "oh he/she will eat when they are hungry" is wrong. Completely and totally wrong. My child was starving herself. She wouldn't eat when she was hungry because the eating disorder didn't allow her to eat.


This insidious eating disorder is a MH issue, just like her anxiety. And in the same manner of saying "just cheer up" to a depressed person doesn't make them feel better and in fact, may make them feel worse.

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VeritasVinumArte

Mr 15 apart from having reflux from birth (became a happy chuckers and vomit refluxed until about 18m) was actually a good eater prior to 15m when he had a stomach bug. He vomited (trust me the illness vomit is different to reflux vomit) and had bad nappies. From then he quickly dropped most foods. White bread, Plain crackers, plain biscuits, Cheese and Vegemite were his go to foods. Plain chocolate and plain smiths crips were the only lollies. We eventually managed to get plain vanilla ice cream i to his list. We could no longer get any meat, fruit or vegetables into him. So for us at 10, adding Chicken Nuggets was a win as it was actual protein. Cheese Pizza was added finally after much consideration and 10 days of not eating while on holidays when he was 5.


I would like to try a hypnotherapist for him (who has this as a specialty) but DS doesn’t want to so without him being open to it it is not worth going. I was pretty much ARFID growing up (still am to a degree) but have learned to “hide” it socially (not hungry, feel full etc). I am less likely to gag and vomit at a table (although I did when meeting my SILs family when I was meant to eat Sauerkraut..... I only just made it to the bathroom). So TBH if DS would go I would be joining him too. I grew up not eating fruit or vegetables. Foods could not mix or touch. I am partially better, not it does rear its head too for me.


DS is lucky he has a very nice close group of friends who partially understand (some friends since grade 3 now going into grade 10) and their parents are happy to accommodate DS1 (have phoned and asked me what they can do to help when he visits). Some of his friends are Celiacs, severe ANA allergies to food so yeah avoiding food isn’t too “different”.

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VeritasVinumArte

[mention]Chamomile[/mention] thanks for the link. We have been lucky to get DS to drink a V8 tropical juice popper everyday. That contains 80% of RDI for vitamin A. The other thing I got him to have is Milo. Not great but when you are searching for ANY sources of Vitamins it helps. But you are correct, it is all the things that are missed out on in a restricted diet that can cause trouble.

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Fruitmincepies

I found milo with 30% less added sugar, so I bought that recently. DS didn’t seem to notice but I suspect it would be an issue for some. He tends to eat the milo dry, or on yoghurt, because he doesn’t drink milk.

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VeritasVinumArte

[mention]Fruitmincepies[/mention] yes mostly dry Milo here too. Unfortunately the 30% less sugar is extreme noticeable in our house. I purchased (not telling anyone about the new version) put it out in cup for everyone to have. Immediately noticed and rejected.

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Chocolate Addict

I have seen an article similar before. That is an extreme case and not heard of anyone having that.


There is a support group on facebook and some of the kids on there have been hospitalised and had a peg feeding thingy put in. Thankfully my kid isn't that bad.


I take them to the dentist and optometrist as required so any issues would be picked up.

There is a therapist, Glenn Robertson but my kid is science based and I believe Glenn uses hypnotism as part of his therapy. My kid refuses to go purely because he believes hypnotism is bollocks. lol


There is an online seminar coming up by Tony Attwood on eating issues - https://edfa.org.au/tony-attwood-autism-and-eating-disorders-webinar/

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acidulous osprey

Don't be afraid of a feeding tube. We were offered one but DS manages to drink his elemental formula (seriously smells like predigested vomit and the taste is vile) so he chose not to have one.


Their management isn't all that difficult and at least you know they are getting the calories so anything they are eating is a bonus.

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With my older child, a peg operation was being considered due to his poor nutritional intake, weight loss and cyclical vomiting syndrome. It was an awful time for us as a family with my husband completely freaked out by the idea and convinced that everyone telling him our kid was just a fussy eater were right. We did avoid it but it took a lot of work. We had friend’s who had been dealing with ongoing infection issues around the tube site so we were keen to avoid it if we could as every illness brought in a cyclical vomiting episode which caused kidney and heart issues and hospital admissions.

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Yep. DS has ARFID and autism. He was hospitalised this time last year in Melbourne for it. He is now 13 and when hospitalised he was very underweight and his heart was being affected.

He has done really really well over the last 12 months and has gained about 15 kilos and grown a lot. While in hospital his job was to be fed and nourished, that's all. There were scheduled meals and snacks and if you didn't eat after a certain grace period, you would get a nasogastic tube. He was monitored 24/7, no access to the bathroom as he was a severe fall risk. The taps in his room turned off so he couldn't drink water unless monitored. I stayed with him because of his age and he was in the adolescent mental health unit. Hospital wasn't so much for fixing the issue but to stop him from dying as he had become such a high risk. They were very clear that the hardest work is when you get home.

Also, anyone who tells you they won't ever starve themselves is completely full of shit. He was very underweight and went into the unit via the emergency ward. He was in danger of a heart attack and a very sick boy.

In terms of follow up we followed the diet the dietitan in hospital drew up pretty closely for quite a while. We started to see a different dietitian and then covid hit and he had issues with school and all sorts of other dramas in year 7. He has seen his paediatrian,GP and psychologist all throughout covid.

DS still relies on up and go and we use these a lot to keep his calories up.

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