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.

'Pandering' is not making an issue of it, so pandering is absolutely the way to go. DS2 has a restricted diet - ASD and sensory processing disorder. It's not psychological or about control - unless forced to eat things.

Potato is interesting - obviously he can't do mashed but also balks at jacket, boiled and roast but has progressed from crisps, to French fries, to normal chips and now can eat wedges. I did incremental - 95% French fries with 5% thin normal chips and worked from there.

Still can't eat any identifiable vegetables but I mash them up and incorporate into food he will eat. One pea can make him gag but last night he ate a whole kiwi fruit.

@Oneearringlost

Is it a psychiatric disorder like many other eating disorders, tied up with control , rejection of oneself, low self esteem, self harm, etc...

Is it?

Does anyone have more insight. Maybe control but not necessarily others

My son has ARFID he has had it all of his life. It's complicated by ASD which means despite input from numerous professionals from him being three years old there has been no improvement.
Now aged 26 he only eats 4 original and best burgers served on the same plate he has used since a toddler (if they aren't on that plate he doesn't eat) and Cadburys Dairy Milk. He has eaten the same thing every day since he was nine years old. Before that he'd eat chicken breast and Jaffa Cakes and occasionally dry toast if cooked to the right shade.
I rejoiced when he finally learnt to swallow tablets because before then he would have no medicine and now he can take vitamins and supplements. He never feels hungry, he eats the burgers at the same time every day, if I didn't offer he wouldn't eat, if they were a different sort or on the wrong plate he wouldn't eat. When he was younger a change of packaging would mean he wouldn't eat. If he thought he'd been tricked into eating something he would vomit.
It has been very difficult, during the lockdown when we weren't able to buy multiples it was incredibly worrying and I'd visit shops daily because there relly is no alternative he would willingly starve rather than eat something else.

My dd just 18 has this and is being assessed for asd She was under the Camhs eating disorder clinic and has just put some weight in after losing a stone. She’s already tiny to start with. Thanks for your thread OP. It’s very hard and I think people just don’t understand. She was always the kid at parties who wouldn’t come to the table and would be off playing. She just didn’t want to eat foods she didn’t feel “were right”.

Do you still enjoy eating? As in, do you really look forward to eating a favourite food?

Do you get bored of eating the same few things?

My daughter has ARFID traits (like others above she has autism, also sensory processing disorder) and I'm guilty of sometimes buying her a different version of her chosen food, thinking it'll be a nice change, but it usually isn't.

Thanks for talking about this.

I think my daughter (12) has this; am at the point of going to the GP to discuss this further. Thank you for talking about this. She wants to try new foods but just can’t.

What would have helped you as a child?

@Soubriquet thank you

@MarshaBradyo was it hard to get a referral to see an nutritionist for your young person? We had a fab NHS dietitian when dd2 was a baby (cmpa) but wasnt sure whether to ask for a referral due to the very poor diet (CAMHS have turned us down - she has anxiety).

@WellTidy

My son (8yo) was diagnosed with this when he was 4yo. He also has ASD.

Lord it honestly isn’t a result of parents pandering to restricted food choices.

Just to clarify, I only mentioned the parents pandering because those were the words the OP used, I wasn’t trying to imply anything.

@Soubriquet, thanks for starting the thread. Was it your GP that referred you for the support you did get?

Ds is a teenager, autistic and underweight (below the 1st percentile) he has very low energy levels and his eating is restricted. He's seeing Camhs for other difficulties and the eating disorders team have said they think he has ARFID but we've been told it's not within their remit, so they can't help him. They said to go back to the GP. Ds did see a dietitian about a year ago, she said she could only offer a one off appointment for 'fussy eating' but it didn't help.

hired that sounds like it's been tough. Does your Ds get any support with his eating difficulties now? Ds seems to be getting more restricted the older he gets.

@Soubriquet

Perhaps it was the wrong word to use but i don’t think my parents could have done anything more apart from perhaps seek medical help. And no, feed your dd what she will eat. She may grow out of it like my sister did

Apologies, OP, reading my message back it seems quite combative, it wasn't meant to be. More worried in tone as I'm really just pinning my hopes on her getting over it as she gets older! It's got much worse since the start of this lockdown so I'm convinced there's an element of wanting control involved for her. Thank you for the reassurance. I'd decided to leave it be until the world is more normal and then consider some outside help if we can't sort it ourselves. I really appreciate your reply, thank you.

[quote TheRealMrsMorningStar]@Soubriquet thank you

@MarshaBradyo was it hard to get a referral to see an nutritionist for your young person? We had a fab NHS dietitian when dd2 was a baby (cmpa) but wasnt sure whether to ask for a referral due to the very poor diet (CAMHS have turned us down - she has anxiety).[/quote]
TheReal it was a few years ago but really easy. Saw GP and requested referral and it didn’t take too long, maybe a month.

We were discharged first appointment as he was a good height, 80 centile and good weight around 60 iirc.

Asked if he drank milk for bone growth which he did a lot.

Talked about pizza making up the same ingredients as pasta with tomato based sauce. Which he listened to intently but didn’t work at all. It’s a very hard thing to crack.

Maybe if he’d more sessions. We went as didn’t eat much at all on a two week holiday and visibly lost weight.

He’s ok now, he wishes he could change but finds it hard.

@Punxsutawney no no support any longer I think because he's on the low side of normal weight and healthy and we really have had all the help that they could offer including psychologist, psychiatrist, dietician, speech therapy, paediatrician and even hospital admission they have nothing else to suggest.
He attended an independent specialist school and they had lots of experience and lots of success at widening food choices but they made no progress. He left eating the two foods he ate when he started. They said he was the most resistant case they had ever had.
It doesn't help that he never feels hungry and he can vomit at will so he will happily sit it out (as he did in hospital) until he is given something he will eat or he will vomit if he thinks he has eaten something contaminated by something he doesn't eat.

@MarshaBradyo my son knows all about what makes a healthy diet, what are good food choices, what each food group provides, where you get vitamins calcium etc etc. He can tell you it all. It has made not a smidgen of difference to what he will eat.

How interesting, well done for seeking help OP. Until I was around 20 I was very restricted in my eating - nothing to do with weight. It was all put down to fussiness, but I clearly remember knowing that of I ate certain things I would gag or vomit (and on the occasions where forced this is what happened). I had all sorts of rules about what I would and wouldn't eat e.g. chips were OK if they were soft and had gravy, but I would poke each one with a fork to ensure it was the right texture before putting it in my mouth. And I was terrified of contamination - if my plate touched a plate with a real phobia food like beetroot I would have to get a new plate and wouldn't touch the food that was closest to the offending contaminated area! I remember being hungry a lot as a child, there was no amount of hunger that would indice me to eat a food I classed as off limits. In fact I'm still the same, but my 'allowed' foods are now so many that it rarely causes me a problem.

I have found nutritionists to be very sensible. Provided that your child eats from the major food groups, even if their diet is restricted and not balanced, and they are underweight don't make an issue of it. Supplement with high calorie protein shakes if possible or supplement with gummie multivitamins. Restrict the gummies though - I made the mistake of leaving them accessible and DS2 ate the lot.

This was for an ASD DC though. But having said that I can't imagine that sensory processing issues are not in play in recognising 'hunger' and acting appropriately and then overlaid by avoidance of yucky textures, appearances, tastes etc.

Are you very thin? Do people comment on it ?

Sorry if you've answered this already, do you know if you weaned 'normally' and this started later (if so, at what age), or were you always very limited in what you could eat.

I'm asking because I suspect DD has a form of this, and she really didn't want to wean, she vomited pretty much anything else that I got into her mouth for quite a while (thankfully not any more).

@huuuuunnnndderrricks

Are you very thin? Do people comment on it ?

I was. Before the shakes, I was around 6 stone and couldn’t gain anything

Now I’m about 8.5, though I haven’t weighed myself lately

I’ve gone from a size 4/6 to a size 8/10

I don’t know if I was weaned normally.

No I don’t get bored of eating the same food. It’s just normal to me by now

Do you eat anything for a treat? Ice cream or chocolate or anything nice??

Yes

Chocolate (dairy milk only. Occasionally galaxy if I really fancy it).

I’ll eat ice cream but only vanilla

I’ll eat jelly sweets but nothing with the foam covering or anything tangy

I won’t eat any caramel or toffee either

I have ARFID as well. Hi OP!
The difference is I live in North America and it's rather accepted here and you can see professionals here. CBT and exposure therapy as well as hypnotherapy have opened up a fair amount of new foods over a period of ten years I can now eat.

What do you eat?

@Flyingwiththecanons

What do you eat?

Not a lot

This is interesting i have ds 17 who is very much like this
He eats about 4/5 meals , he has days he eats but other days nothing
But by others standards his eating days are small like 1 chicken breast for dinner
Maybe its something we should look at

Food is such a big deal in our society - people are always talking about food (and eating it!); recipes, restaurants, diets, etc. Do you ever feel like you're missing out, OP? Or does the subject bore you to tears?