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…

Whispering? Did he apply for DSA? The assessor told ds that a mentor could be provided to help with things like remembering to cook/eat etc

Hi @WhisperingAutistic it’s so tricky once they become an adult. Would your DS have a proper talk with you about ARFID and let you discuss the need for him to get a check up at the GP? Would he allow you to go with him perhaps?

Does he get any support from the uni welfare team?

I’ve recently found that DS is more willing to work with me if we plan out his food with just his safe foods. DS has very poor executive functioning skills and so is not good at planning. But if I say you need to eat at midday, 4pm, 8pm, and supper, and I say he has to eat something at those times, no matter what it is, he’s more willing to accept it. It doesn’t work perfectly but he’s coming round to recognising he’s needs a food routine.

So if you rang your DS every morning and said ok, it’s time to go and buy a MCD’s brekkie, would he agree? Would he manage a MCD’s hot chocolate at that time too? Then he could have his Tesco meal deal for lunch and for tea, MCD’s burger whatever he usually has? Did he have a wider list of safe foods at home before he left for uni? Would he eat anything from a carvery? So easy to just turn up and select the foods he wants rather than a meal of stuff his doesn’t want.

Do you think that his autism is the reason he’s not able to plan much in advance, making his ARFID worse? Would his ARFID be better if he was at home for example? Does he have to live at uni if it’s only an hour away? Or did he really want to go and live away?
Sorry! I’ve bombarded you with questions! It must be so hard though - not being with him to help him eat more. 🤗

That reminds me, ds was only saying last weekend how much he misses Taybarns. He was gutted when they closed down. He could eat whatever he wanted, in whatever combination. So no-one cared if he had fishcake, rice, a yorkshire pudding & carrots!

Brilliant!

That's another safe food, yorkshire puddings. He keeps a pack of them in the freezer for snacking on!

The difficulty here can be that the university may need the request for support to come directly from the student rather than from family. Students really do need to engage with support services themselves and Universities have to consider Data Protection/GDPR carefully.

I would gently encourage him to make use of the services, if he was happy for you to come with him for an appointment the University may well agree to that too. But they would not generally be able to discuss his situation with you without his express permission.

And as another poster said, he might be entitled to Disabled Students Allowance, and some students with ASD can benefit from funded apps like Brain in Hand, which may also help him manage ARFID by planning meals perhaps.

But really it is up to him if he wants to access support that might be available and I'd be careful of pushing too hard if he is very resistant in case it interferes with the rapport you have with him.

Brain in Hand is a great idea if he’s willing to use it.

Hi OP my son is autistic and has ARFID. He ate normally until he was about two and then started dropping foods. For a while we had the rotating of foods although he'd drop them if the packaging or recipe changed. For the last fifteen years he's eaten 4 specific beefburgers and Dairy Milk every day, there are no other foods he will eat. He had lots of input as a child that made no difference whatsoever. His specialist school which had seen lots of success with widening diets made no difference. As an adult, he's now 28. he's had no input but to be fair I don't think aything would work anyway. I can now get him to take a multivitamin but that took a long time. What sort of foods does he eat? I wonder whether they are similar to the stuff ds used to eat?

My dd was diagnosed with arfid. And based on reading up on the subject and my daughter's experience I believe I have/had it too. It was when I hit my 30's and started to link food to well being that I started to try foods that previously made me ill. It took years but i would say now I come across more like a fussy eater now. 1 can finally go to a restaurant and find something i can eat on the menu.

This is so interesting. I didn't eat 'normally' until I was into my early 20s. I had all sorts of rules about eating and when I was about 6 I didn't eat anything except tinned sweetcorn, salmon paste sandwiches (on white bread with no crusts in triangles) and baked beans for about a year. I wouldn't eat from a plate that had touched a plate containing a food I couldn't eat, and wouldn't sit at a table that had food that smelled or looked abhorrent to me. I clearly remember the feeling that it would be easier to starve than eat a food I had taken against. I was hungry all the time and used to massively overeat when i came across a 'good' food to compensate for never being able to eat. I'm in my 40s now and SO much better. No one would ever know that I have/had food issues (as my username suggests!). even now there are a few foods I wouldn't have in the house as I would feel it 'infected' all the other food just by proximity. But overall I'm fine and eat a range of things. Just to let parents know, it can get better 😀.

@Verbena17 many thanks for your response. I've no idea about anything suitable in Ireland but I'm going to try now that I've read this. I know a nutritionist so will have a chat with her. Many thanks for starting this thread. I wish you (and all the other Mums on here) well xx

@BMIwoes that is reassuring. I have spoken with others who lived on cereal (my friend), little pizzas (my Dsis), toast (my DH) and they all eat everything now so I've tried not to sweat it but this thread has concerned me and maybe I need to be paying more attention to this. Thank you for posting that x

This also gives me hope! 😊

Gosh that’s very restricted @hiredandsqueak - when you say 4 specific burgers, do you mean inside a bun or just plain on their own? It’s amazing what a human body can survive on isn’t it?

Ive listed somewhere above what my DS’ current safe foods are but occasionally he does introduce the odd old one from before or he’ll try and like a new one…like the Mikado sticks ive listed. He’s never had them but for some reason he ate 2 boxes last week.

I find the constant buying and wasting food quite stressful and there’ll be times when I don’t have something in because he hasn’t eaten it for like 2 years and then at 11pm at night, he’ll say ‘have we got any ……?’ And I’ll be like ‘Erm, no sorry’. Then the following day I’ll buy said food, and he could still then refuse it once it’s here! 😩

He eats chocolate products such as buttons, dairy milk, twirls, Bueno, no bread, no cheese, no chicken, no juice, no fruit or veg (until quite recently he ate cucumber all his life but without skin. When he was little, he ate plums, blueberries, nectarines, apples, little oranges, sweetcorn, mashed potato. He decreased them all to nothing.

It’s definitely seeing a nutritionist/dietician because they can oft3n come up with very creative ideas as to how to get in calories and nutrients that we haven’t thought of.

Also, I know you’re in Ireland and so not Uk, but would it be worth looking at whether there’s a private clinic over here that involves a residential stay for a like a week? I know Great Ormond Street does a treatment clinic where children and parents (I think) stay.

This is the GOSH in-patient clinic info in case anyone needs it…
www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/department-child-and-adolescent-mental-health-dcamh/mildred-creak-unit-mcu/

He eats one brand only, four at the same time, 3pm to be precise on the blue plate he's used since he was a toddler. If the brand, time or plate was wrong he wouldn't eat.
When ds was rotating I would waste no end of stuff because I would buy a stash then he wouldn't eat it for months, maybe years or ever again. And he would do the same want something he hadn't eaten for months and he'd want it that minute and then I'd feel so guilty because he most likely hadn't eaten.
I remember sending his dad on a sixty mile trip when on holiday to pick up more alphabetti spaghetti because he would only eat Sainsburys brand and there wasn't a Sainsburys and he'd eaten the twelve tins we had packed.

Yes we too used to have the necessary Mcdonalds to feed him when he had dropped what he was eating and hadn't found something he would eat (four plain hamburgers and a large fries) Only he has since dropped the Mcdonalds. I live in dread of the burgers changing their recipe as that would most likely stop him eating them. Even something like a change of packaging can cause problems. He dropped Jaffa Cakes when they changed the J, he dropped all Walkers crisps when they put tokens for schools on the bags, and so many other things that he's dropped if the packaging has changed. He won't eat anything bought from the local Co op so he sniffs packaging and refuses anything that came from there. So many rules around food it's exhausting.

Ohhh i remember you now - from an ARFID thread on ED. I remember the blue plate you said your son likes.

Oh gosh yes - we have the ‘rules’ thing too. In fact, this after we drove a 16 mile round trip as we do every day to McDS and I made him check the burger before driving away. He said it was ok but then as we drove, he ate half and then said it was too well done 😩.

I'm fortunate I have three the same left as they came from a picnic set so hopefully no chance of losing/breaking all three anyway. We did have four one split.

I believe I had this as a child- very fussy eater then several years with the same very simple breakfast, lunch and tea. Plus gallons and gallons of milk. I gradually added more meals in, but still had only a handful of acceptable foods. Going to a friend's house or out to eat was genuinely terrifying. I'd forget to eat if unprompted and would cheerfully go hungry if the alternative was not one of my safe foods.

I'm still not great, but much better. I've just booked a fancy restaurant for DH's birthday that he's said he wants to try. I am absolutely terrified of the menu, but am going to try. If all else fails, I can drink the wine and Dh can have two hideously expensive dinners

Ds1 is a selective eater and this has just pushed me to raise the matter with the dr.

@Verbena17 thank you I will look into this x

@BobBobBobbing that’s interesting you mentioned the gallons of milk - DS drinks loads of milk and I’d constantly have friends and family and health professionals telling me “well he’ll never eat more food if you’re giving him so much milk” but now, in the ED clinic, I have dieticians and nurses telling me to get milk into him as much as possible - because milk has loads of perfect micronutrients.

I used to drink at least 6 pints of full fat milk a day My poor mother never had enough space in the fridge to keep up.

Mum did speak to the dr about my eating and got told that as long as I was drinking milk and growing then it was fine. Ds1 doesnt drink milk any more so that's one reason I think it's time to tall to a dr about him.