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…

If I thought my child had ARFID what are my avenues for getting help? Where should I start? Thank you

Is there a 'safe' food that you know your child will always eat?
Have others been understanding of the condition or are you met with many sarcastic comments?

How did you know it wasn't 'fussiness' ?

Hi @Sunshineanddaisies2021

Depending the age of your child, you could go to the GP and ask to be referred for assessment at whatever Community Eating Disorder Service your local Healthcare Foundation Trust provides. If you’re child is under 5, you could speak to the HV, although I would imagine not many have been trained to discuss ARFID.

With older children, if they’re already under CAMHS for example, you could mention it and they might refer but in general, it would be the GP.

General info-wise, you could check out www.arfidawarenessuk.org for lots of really good information or BEAT.

Super useful! How long did it take to see a widening variety in what your child ate? My DS only eats one food item & takes vitamins and it's been that way for 18 months.

@DojaPhat Im trying to think of any of his current ‘safe foods’ have always been on his safe foods list…Bueno (white choc) are on there now and have been for a long time but it’s not a daily safe food.
His ARFID is cyclical and so he (unconsciously) rotates his safe foods depending on how anxious he is at any given moment.

Generally people have been accepting when I’ve explained but until the term ARFID started being used a few years ago, I’ve always just said ‘selective eating’, and everyone pretty much got the gist.

When he was a baby, the most unhelpful comments I got were sadly from health visitors - I’m not blaming them, I think selective eating/ARFID just wasn’t as common back then.

Was it evident from the start of weaning or did it take a while to manifest itself?

In retrospect do you think there’s anything you’d have done differently around food when he was young/the disorder was first emerging?

@PumpkinPastiez it was very obvious very early on (after weaning onto solids at 6 months) that something was very wrong. He was my 2nd baby so I knew what regular baby eating should be like (generally).
I would say that between 12-18 months, he quickly started to drop foods. I had been exclusively breastfeeding until 6 months, then weaned him and breastfed but as he got older, I also added in follow on formula to ensure he was getting enough vits and mins.

I tried baby led weaning - he hated it. He didn’t really like touching food.
The toddler years weren’t too bad at times, as he would eat biscuits, toast, cereal, fruit, some veg and moved onto meals with sausages and Yorkshire etc but extremely small amounts and never consistently.

It’s currently worse than it’s ever been.

Do you supplement?

My son doesn't have afrid but he is autistic and highly selective (doesn't really eat any proper hot food- eats mostly fruit and toast)

Any advice or things you wish people had said to you?

How old is your son now? Is he a healthy weight?

DD(10) never wanted to wean, and vomited (not just gagged or spat up, full milk vomit) most times any form of solid got into her mouth when she was under 1 - even yogurt.

She's a healthy weight, and if she has ARFID, it's mildly, but she eats a very limited, if approximately healthy diet.

How do you get vitamins into your son now?

@user1464279374 so as I mentioned above, he started to eat more things in his later toddler years and we then decided to give him as much of those foods as we could - knowing he would eat them.

I think he then started dropping safe foods from reception primary year onwards - the anxiety he felt dictated whether he would eat and what he would eat.

At age 11, he was diagnosed as autistic and we realised his selective eating had always been fuelled by that - the rigidity and sensory difficulties….all amounting to an eating disorder.

Current research shows that some people with ARFID are often also likely to be autistic, unless their ARFID has been triggered by something like a traumatic choking event. The eating disorder team we’ve been under have said it’s difficult to treat ARFID in the autistic population due sensory difficulties and issues with rigidity. Treatments such as CBT are often harder to implement for autistic people unless it’s more specialised therapy.

Yes something was evident for sure! He very quickly dropped weaning foods and as he got older and I introduced foods with teeny pasta pieces in for example, he would retch and spit them out, often making himself sick.

He would also chew food with his front teeth and chew it for ages - as if ‘feeling’ the foods - then spit them out. I would keep re-introducing the same foods so he got used to the tastes and look of them but it didn’t work.

At the time though, I had no idea it was an actual eating disorder.
I don’t think I would have done anything differently - he’s autistic but we had no idea at the time, so nothing I could have done would have altered his eating/ARFID. He has super sensory taste and smell. Now he’s older, he knows products might look a bit different (white bread for example) and he can cope with slight changes in brand designs, but that’s been much more recent. Actually today, I bought a bag of Starburst for him but has refused them because they’re limited edition ‘opal fruits’. He smelt inside the bag and said they smell more fruity so can’t eat them.

Thank you for that advice.

Can I ask how you manage with going away/out for meals/meals at family and friend's houses please?

Hi - yes, he now will accept a bassets orange flavour only, vitamin C and zinc. Also, he has a vitamin D daily as he’s deficient. But they’re for age 7-11yrs and he is 18. Not ideal but better than nothing. He currently eats zero fruit or veg and hasn’t for a long time. Most parents don’t need to worry about scurvy nowadays but with ARFID it’s a genuine concern.

Advice - I would say always advocate for your child. If something doesn’t seem right, keep chasing the health professionals. ARFID is not only for people who are underweight and eat very little….it can also be eating a narrow amount of very high fat foods - meaning the person might not be underweight.

He is 18 now. He is not a healthy weight. He is approximately nearly 3 stone underweight.
See above for vitamin info - he refuses a multi vitamin because for some crazy reason, Bassetts don’t do plain orange flavour in adult vitamins - they add passion fruit! So that’s a big no-no. I called them and asked if they would consider making plain orange adult ones and they were lovely about it but they didn’t change them.

Like your DD, I just wish he would be able to eat a varied enough diet to be just about healthy.

This is a great support. My son is 11 and I have always stressed about his terrible 'picky' diet. He goes off and on his favourite foods in rotation. For example he will eat a particular brand and flavour of crisps for mths, until he's sickened then he'll move on to a different flavour/ brand and the cracks repeats. He's never eaten veg even when he was a baby he would spit it out if any meal had veg. He lives on pizza (but only pepperoni) chicken nuggets, sausage baps ( but only certain bap's) he only eats chips from McDonald's and won't eat any rice/ pasta. He likes super noodles when he's in the mood but my goodness he is difficult to make food for.

I suspect he is autistic but no teachers have flagged it even though he went to speech therapy and other classes in a children centre. He was signed off when he was 5.

My partners family think it really weird ( my partners sister has 2 boys who are great eaters so they think we haven't done a v good job and that DS is a product of our upbringing)

When he was little, birthday parties were a complete nightmare! He wouldn’t sit at the table and it always looked like he was being tricky /naughty but I knew it was because of the foods (I didn’t realise it was the smells of the foods at that stage). So I would just always say ‘oh he’s just a bit shy, he can sit near me’ type thing. As he got older, I would just tell parents at play dates that I’d pick him up before tea or that he would only eat plain pasta and just not to worry if he didn’t eat anything. To be honest, all the people he played with I was friends with the parents and so I could easily explain.

School was stressful - but I would just write and email and say he would be eating whatever was in his lunch box and for the dinner staff to know not to touch his lunch box or foods in it (they would to begin with pick out his items to look at and see if they were ‘healthy’). Once they knew, it was fine. He would have Nutella sandwiches and a kitkat and that was it. He would mostly eat half a sarnie and a few bites of kitkat and then I would feed him more once he got home.

Holidays abroad got harder as he got older - although in France, Brioche and croissants were always the go-to foods. And milk.
Nowadays, we tend to stick to UK holidays - Center parcs being our normal destination - he knows the different restaurants and knows he will be able to eat steak and fries or a margarita pizza.

Its a pretty rigid way of life and everything is based around getting enough calories into him every day (he rarely has 2000) but it is where we are at the moment.

Hi @greycloudsallover your DS sounds VERY similar to mine with the safe foods he eats.
And also cyclical. Yes, my DS makes himself sick of the same safe foods then gives them up totally for sometimes years at a time!
One thing i did do a few years ago was to pop sheets on the cupboard door of his previous foods. Even if he can’t remember them, if the foods are on the list there is a teeny chance he might revisit them at some point.

We have also tried to food chain - but it’s such a very slow process.

He used to eat chicken super noodles but now doesn’t. However, because an online friend suggest a certain noodle brand (Indomie), he asked me to try them. We now buy 40 packs at a time and he usually has 2 packs a day. So that’s 350 cals a time. Other than those, he is currently only eating a triple cheeseburger and coke in the day and maybe some mini eggs ….plus the noodles. He does want to put weight on and improve his choices so I do a food diary every day and if it gets to 10pm and he’s only had around 1000 cals, if I tell him, he will think of something else to bump them up.

Do you feel diagnosis is important? If so, how? I've not found the nhs super helpful so far tbh.

My little boy just turned 4. He had cmpa and severe reflux as a baby. He has always been underweight, disinterested in food (doesnt seem to get hungry), very limited pallet, and still drinks a fair chunk of barista oat milk overnight or if he's distressed. Plain pasta is his safe food, but despite his high fat favourites of cheese and sausages, he remains very skinny. I'm not sure if there's more at play, nursery doesn't think so because he is very well behaved for them, but he does have issues with clothes and shoes. And other things which are normal for toddlers/young kids, but added up maybe not - selective hearing, inattention, extreme energy, very poor sleep.

I worry our DD (4) has this, I'd appreciate your opinion.

She doesn't like eating anything in a cafe or restaurant just foods I have brought from home. She eats about 20 safe foods which do cover the food groups but if I put something on her plate she doesn't like she asks me to move it and wash my hands before touching her.

She isn't autistic. Could it be extreme fussiness or does it sound like ARFID?

Hi @Blessedbethefruitz For us, yes diagnosis has been helpful. In order for us to access our community ED service, he was officially assessed with the PARDI assessment, devised by Rachel Bryant-Waugh and from that, diagnosed with ARFID. The community team in our county completed the training by Great Ormond Street - training which I believe every health care foundation trust should do - for children and adult services.

Diagnosis has helped our special school to understand his needs more effectively and the same with things like applying for DLA/PIP.

I would say if it’s having an effect on your day to day life, then assessment is worth it. Accessing health care and social provisions is much easier with an official diagnosis. Whilst that shouldn’t be the case, it’s generally true.

I’ve also completed surveys for numerous peoples’ university ARFID - something I feel will help in the years to come, when forming better services might really make a difference.

It must be extremely difficult and worrying for you with your son having CMPA.
I regret not looking into each of his difficulties when he younger with a holistic approach. Instead, we just parented in whatever way needed for each difficulty- and never actually joined them up. If we had, we would have realised much sooner that he was autistic.
Selective hearing - being quiet to process what was being said.
Extreme energy - giving himself sensory feedback
Very poor sleep - autistic people tend to produce much lower levels of melatonin and have difficulty either going to sleep or staying asleep.
Inattention - trying to shut out all the noise of a busy classroom. Looked like he was ignoring the teacher - he was just shutting down to stop the noise!

The above were how our son presented and we weren’t aware of those reasons until we knew he was autistic and with hindsight could look back and with the help of the paediatrician see that his behaviours were all autism-linked.
I’m not saying those things in your child are adding up to autism - they might just be normal 4 yr old developmental things.

*university ARFID research that should say

My Ds (also autistic) is like that.

I could have cried when Quorn discontinued their low fat sausages. (They changed the recipie of their normal ones).

Wow, this sounds very similar to my son. He was always 'fussy' and lacking appetite. He never had the free school meals (we lived where all primary school children got them) because in Reception I noticed him getting very thin. He was basically eating nothing at lunch and not much in the evening. Whenever I tried 'if you don't eat it, you won't get anything else' he just wouldn't eat. In times of stress (most of the time), he would drop even more weight.

He's 17 now and food has got more and more restrictive. He's about 5'9 and weighs 45kg. He eats lots of sugary foods and basically just pizza/ oven chicken bites/ plain pasta or wraps . He's gone off many of his staples over the years like spag bol, peas and Greek yogurt - and never gone back to them. He's currently moaning when it's plain pasta. He's weird though: some of his tastes are quite sophisticated. He likes ginger, stollen and fruit cake/ Christmas pud/ apple crumble. I'm currently lucky to get 1 fruit or veg in him per day. He lives fizzy drinks and now he's in sixth form, he goes to the stop daily and has one for lunch.

He's not diagnosed with ASD but I've wondered quite a bit as there are other signs. I'm relieved I have 2 other children who eat completely normally ie. One doesn't like mushrooms, one doesn't like Courgette but they basically eat nearly everything - so I know it's not mistakes I've made.

Are you worried about your DS leaving home? I worry he'll live off lucozade and lose even more weight. Is your DS able to be logical about food (eg. I don't like this but I know I need to eat it to be relatively healthy)? Or even, I know I need to eat to stay alive. Can his brain compute that?!

Has your DS ever expressed he feels left out when family are all eating and he isn't having the same thing? I worry it isolates him even more.

Hi @Badger1975so before the age of about 4-6yrs, it’s normal for many children to be neophobic in relation to food. A general reluctance to try new foods, not have foods touching on plate, sometimes germ phobia etc. However, after the age of 6, if that’s still ongoing and hasn’t improved, that’s when it can be more of an issue and the sign that there’s something else happening. Most kiddos are neophobia towards fruit and veg up to the age of 4-6.

From a health professional point of view, say if you asked to have her assessed by the paeds community dietetic team, if she was getting enough of the right food groups and not losing significant weight, they might ask if you’d like to do a parents course or your area may have a food workshop type course. Or they might just say monitor her yourself and see how things go.

Difficulties for us were when other children at school had yoghurts and juice at the lunch tables - smells and visuals he couldn’t stand to be near. It becomes very obvious when they’re socialising.

With hindsight, I’d maybe suggest to other parents worried about a narrow food list, to try and start food chaining now, whilst they’re little. Because in times of high anxiety, children with ARFID will often narrow down their safe food list to a very small number. There is lots of food chaining info online.