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…

At ds’s secondary school they had some really odd canteen rules. I used to send him in with a Philadelphia sandwich but they wouldn’t allow him to buy a portion of chips to eat with it, unless he had an entire meal involving chips as they said it wasn’t balanced.
thdy also sold pasta in pots with a choice of sauce but they wouldn’t let him buy plain pasta that he could stir some Philadelphia in.

he moved schools for year 9 and they were great.

Urgh yes! Our mainstream secondary was really narrow minded for all things SEND or reasonable adjustments for things like ARFID.

They need to realise that these children already have barriers to accessing as normal an education as possible - let alone having to jump through hoops made up for no apparent reason!

@Verbena17 thanks, I've gone through the pardi questionnaire and the results are concerning. I’ll seek help for him.
I'm less sure with the autism, mainly as at his age, I'm not sure how to differentiate between normal behaving better at nursery than at home (he is apparently very well behaved there and good at listening, sitting still for circle time etc) and masking.

Thanks for starting such an interesting thread. I’d not heard the term ARFID before although I’m aware that restricted diet and autism often go hand in hand. Thankfully my youngster (now young adult) was always a reasonable weight, although it was always difficult to buy trousers that would be small enough round the waist. In my case fruit and veg were acceptable foods. It was protein that was mostly excluded except for Mac Donald’s fish fingers and baked beans. (So our lock down food supply problem was finding tins of baked beans) He wouldn’t eat burgers or chicken nuggets or pizza or sandwiches. He still won’t eat sandwiches though although he gradually started eating the others in his teenage years. We still wouldn’t take him to a restaurant unless we had pre checked the menu as there is often nothing on it he would eat (besides which he dislikes the experience in general). I can always tell when he is getting anxious because he starts restricting the types of food he eats.
I hope all those of you who are struggling with this issue get the support you need.

Hi @notanicepersonapparently I think your post illustrates - whether or not someone is diagnosed with ARFID, most parents (even if they at first try the ‘there’s nothing else until you eat it’ technique), would soon realise their child is a selective eater and try to accommodate their needs.

It quickly becomes very obvious that these children do not eventually eat - they will literally rather starve. But I think parents generally have the instinct (like you did) just to get their child fed, no matter what it is, to get calories into them to keep them thriving. Not having an ARFID diagnosis doesn’t mean there isn’t any help - even if an area has zero ARFID support, community dieticians understand what the body needs to thrive and surprisingly, the body can survive on very unhealthy foods and very little, short term at least.

Like your son, my DS is in jeans for 15/16 yrs because of his tiny waist.
Long term, I worry about his muscle and internal organ development but I’m hoping now he’s finished school, his anxiety will decrease and perhaps his food list increase 🤞.
The last 10 years of education & government putting all the funding into preventing obesity sadly hasn’t helped our children with ARFID.

What are his safe foods?

Thank you so much for posting this. My ASD young teen has very selective eating and I have wondered about ARFID. So this has been enormously interesting.

Thank you for this thread, my DD is 19 ,has recently been diagnosed with autism. She's always been a very fussy eating, limiting foods she will eat, although these rotate.
She's vegan which makes it harder. She's very anxious, I've taken her to GP who said she needs to increase her food intake, she has a bmi of 16 but we were told she doesn't meet criteria for eating disorders team as she doesn't think she's fat, isn't throwing up, and they think it's linked its her autism . I think it maybe ARFID but have been told the nhs in our area dont recognise or diagnose ARFID.
Shes been referred to neurodevelopment team,they phoned her left a message on her mobile but she refuses to phone back . As she's 19 my hands are tied.
I'm worried about bone density and her just not eating enough, she's always cold, says her bones ache.
Any advice??

Hi @MarshaBradyo currently they are…
triple cheeseburger (only patties & cheese & ketchup)
Coke
Whole milk
Mikado
Mini eggs
Special chicken noodles
Tesco white choc cookies
Oreos soaked in a mug of milk- less often
Maltesers - not for weeks
Omlette with rice inside - sporadically
White choc Bueno

Hi - they’re incorrect in saying the NHS doesn’t recognise ARFID.
NHS ARFID
In the very first instance, I would ask your DD if she can tolerate having full bloods done and then ask the GP to do those. When they’re back, ask GP for print off of results so can see them. If you write a signed letter, with your DD’s permission, you can advocate for her at the GP/hospital appointments if she would like you to.

That will show if she has low vitamin D for example, which can cause aching bones (I’m not saying it’s that but it’s one possibility). My DS had aching bones and he was very vitamin D deficient. He now takes a vitamin d tablet a day.

After the bloods are back, I’d then ask the GP to refer your DD to the community dietetic and when there, ask if there is a psychologist who helps with disordered eating. If there are no further ARFID services in your area, you could look at private clinics. I’ve not used any so far, so cannot recommend but I think if DS gets worse, I might look at the Orri clinic in London.

Good thread OP, ARFID is not well understood by many people and can be very serious and debilitating for those that experience it. It was just to point out to people (as this is an area I sometimes am involved in) that colleges / universities can make reasonable adjustments at times for students with ARFID, eg. trying to explore more private areas to eat, ensuring adequate seating / access to lifts / minimising physical exertion for students who are fatigued easily due to very low body weight, raising lecturer awareness etc.

Thanks for list and thread op

The person I know who suffers from it has a real fight or flight response to foods that are not safe to them. I find it helps when I position it as a phobia to those who don’t know about it as almost everyone knows someone or is someone who has experienced a phobic response.

Fear of heights or arachnophobia are more common, people get those and it helps understanding.

Great AMA! My 10yo son has ARFID (and ASD), having been diagnosed at 4yo, and I live in fear of M&S discontinuing either of his two safe sausages. We don’t get any support for it though, none whatsoever, and now I’m wondering why not. I thought maybe nobody did! Ds is now a good weight but that’s because a few of his safe foods are high fat/high carbs/high sugar.

@verbena17 - thank you that's really helpful.
She has had s blood test bituminous d wax low but GP said it was normal for this time of year but will get her more supplements but she's fussy about these ( surprise surprise)
GP mentioned going private as very hard to get nhs support but really don't want to do this unless an emergency but link to orri clinic is very useful .

I am having a lot of issues with my DD's eating and have wondered before now wether she may have ARFID. She's 5 and has just started school, I've recently found out she hasn't been eating her school lunches and at home all she wants to eat are sandwiches, pizza, wraps, plain pasta, fries. She will eat grapes and apples, but isn't so keen on other fruit and she will eat nuggets from MCD's, but if I give her nuggets at home she makes me take the batter off them. I always serve her veggies with her dinner, but she refuses to touch them. She's gone from being on the 98th centile to the 60th and I'm worried that if I approach the doctors for support they will brush me off as she's a healthy weight and just say she's fussy. What would be my first step to try to help her? Would I need a referral from the doctor?

Yes exactly - my DD doesn’t have ARFID but is at uni and has other medical needs - and they’ve been really fantastic at helping provide things she needs or to make adjustments. All of her lecturers know about her medical issues and she’s never been made to feel bad about asking for help.

Should have read vitamin d was low. Fat finger typing

Yes that’s true. It is a phobia in a way but phobias can generally be cured…..which is where it’s different with ARFID. In some circumstances it’s perhaps curable but in most, it’s either not at all or some improvements only.

But yes, that flight or fight response is how most people would describe the feeling they have towards many foods. My DS is like that with juice, mayo and yoghurt. For other things, he might just say ‘please don’t open that near me’ but for the above foods, we can’t even have them in the same room.

Crying reading this OP. I have 2 DS (14 and 12). I suspect they both have ARFID. I live in Ireland and there was a talk show discussion about it a few weeks ago on the radio. First I had ever heard of it. Both have DCD and my youngest has ASD. My DS14 will only eat a cheese pizza that is from our local take away for his dinner. My DS12 only eats chicken nugget meals from McDonalds.

Amazingly enough they are both a healthy weight. Our GP has forever told me to let them eat what they want to ensure they are getting enough calories. We've been to nutritionists to no avail.

I am broken from it all. My dream one day is to go to a restaurant and for them to order something other than skinny fries.

That’s difficult. The same room is ok here but I’d say a residential is suggested or a food that prompts the response you can see the stress factors physically.

What has helped for them is learning to cook in a school environment. They care about getting it right and usually do very well at it. We’ve actually added some food ls due to this. Which as most will know on this thread that’s really hard to do.

I would perhaps have a look at your healthcare foundation trust website and go to their eating disorder page. See if they mention ARFID or selective eating- if they do, then ask the GP to refer you to that service or if there isn’t anything to do with ARFID, ask the GP to refer you to your community paediatric dietetic team. They can do an assessment of what she’s eating in the first instance and work out whether it’s likely she getting enough nutrients and if not, they might make suggestions to improve things, although over the years, we’ve never had much helpful advice from dieticians if they’re not ARFID trained.
Interestingly, the BDA have recently published a statement for dieticians about supplementing for people with ARFID, so I would think that most dietetic teams have had some sort of minimal training input by now to understand it.

If the GP tries to brush you off, maybe print off the ARFID webpage from the BEAT website BEAT - ARFID and show them. Depending on where you are in the country, you could ask for a referral to the Evelina Hospital or Great Ormond Street ARFID clinics.

Hi @FMSucks I really feel for you. Having one child with ARFID is difficult but having two children with different safe foods must be exhausting.
It’s really positive your GP wasn’t nonchalant about it and gave you really good advice. At the end of the day, feeding them and getting them enough calories is all that matter short term. Longer term though, it’s vital we make sure our kiddos are having enough nutrients and that’s the tricky and stressful bit!

I was told a few weeks back that it’s surprising how a child’s body adapts to a limited diet but looking at my DS and his tall body without any body fat, makes me wonder how on earth he’s getting any goodness! MacDonalds has been our saviour- non-ARFID parents just don’t get that and it’s depressing reading not very kind comments sometimes, when parents say that’s all their children will eat. If my son doesn’t have a triple cheeseburger every day, that’s 576 calories we have to replace with something else….and it means no or very little protein for him. Until Christmas, he had been eating 2 x double cheeseburgers every day which was 884 calories which was great so it’s now much harder he’s not having those. But he said one triple is much less overwhelming than looking at 2 doubles.

Is there anybody in Ireland providing ARFID services/support at all do you know? You could always email arfidawarenessuk and ask if they have any good info about services in Ireland.

Anything useful on this website @FMSucks ?
Bodywys Ireland

@MarshaBradyo thats really good that cookery at school has been helpful and helped to add in new foods.

Something I forgot to mention was that for autistic children with ARFID, often there are missed hunger cues and also many have the confusion of how hunger feels and how anxiety feels because they are very similar feelings, and not always easily distinguished by autistic children. My DS had multiple sessions with the ED psychologist, in the hope that she could work on his anxiety. It was positive within the sessions and he understood everything she was explaining but once home, he refused to work on it.

Some autistic children also just don’t get very thirsty or hungry and that can create a huge problem- because even in a person with ARFID, if they feel hunger, they will then generally eat lots of their safe foods (and this can be why so many people with ARFID are an ok weight). If it’s a battle to get every mouthful down, that can really wear down parents.

Hi,
My eldest is 20 and in his first year of university with ASD and ARFID.

He doesn't think he has a problem but he is so, so skinny.
I contacted student support and they said there is nothing they can do because he's an adult, not a child.

When he's home, he never eats a meal I cook. He lives off Tesco meal deals, Subway and McDonald's. He only eats once a day and will drink large bottles of fizzy drinks throughout the day.

I really don't know what to do at all.
He's at university only an hour a way, which is obviously helpful. He's registered with the GP at the university.

What would you do in my shoes?