Restrictive Food Intake Disorder?

[sugarplumfairy28]

DD is 11 and we are 4 years into trying to get a diagnosis for ASD symptoms. We emigrated when she was 3 which apparently makes her a complicated case. That aside she is SO fussy about food, it never really occurred to me that it could be anything other than being fussy, but does this sound like ARFID? She won't eat due to peer pressure, or try new things, she no longer eats at school, the whole 'she eats what she gets' doesn't work, she went 5 days living on a single bread for the day, her diet leaves her with horrific constipation (understandably)

She eats only a hand full of things and even those have to be specific.

One cereal - but rarely.
Toast only with Marmite.
Sometimes cheese topped rolls - from one bakery.
Sausage rolls.
One specific type of cheddar.
Bacon - must be cooked very specifically.
Chicken pops - literally for dinner every single day. Will eat some nuggets.
Crisps - ironically any crisps.
She eats some sweets and some chocolate but rarely and only specific ones.
Once in a blue moon she will have a specific pizza or plain cooked beef mince meat.
Chips but only if we're out for the day and there is nothing else.
She likes Peacepops and cookie dough.

That's it. Now I've written it out it seems like a lot actually and I am thinking I am making something of nothing. Am I over thinking this?

I hear you! When you say what they will eat it could fill a one page menu, but break it down into the three meals and it's literally one choice per meal.

Mine has similar "safe" foods. Likes bread, no fillings. Likes only certain carbs. Likes only certain meats (all ground up reshaped type shite). No veg. No fruit. No water.

There have been a combination of physical illnesses and conditions that have led us to here, so I'm certain it's not just fussy eating.

We have started with the GP to look at ARFID and separate to that I'm going to keep a food diary so I can show what has and hasn't worked, just in case I have to deal with a less-supportive doctor in the future.

A food diary seems like a good idea. Can I ask, do you know what the are steps for diagnosing this? I am really wary of piling more appointments and stress on top of our existing ASD battle.

Our son is the polar opposite, is willing to try new things, loves fruit and veg (he has set me a challenge to find fruit or veg he doesn't like), eats a variety of everything, loves a buffet where he can eat lots of different stuff, is really into sushi, and inventing his own things. That being said he is starting to get frustrated at how DD is catered for differently and started randomly causing a fuss at meal times so as to maybe compete for allowances and attention.

Ds has a diagnosis of ARFID and autism.

It took years to get a diagnosis, which is pretty difficult in the UK. In the end we had to get funding from our local NHS, for Ds to be diagnosed and treated out of our area, as they are not commissioned to treat ARFID.

Before specialist treatment we had tried a dietitian and an sensory OT. Sensory OT's in particular can be helpful as they can work with the sensory aspect of food and eating.

Ask to be referred to an eating disorder team. If your local service doesn’t assess, diagnose, treat those with ARFID ask to be referred out of area. Maudsley and GOSH both have a well regarded service. I second sensory OT too.

If DD ever hits any of the red flags on this document you should seek medical attention.

Yes the Maudsley clinic is excellent, real experts on ARFID. Unfortunately Ds got referred when he was at the top end of their age bracket, so was only able to access 10 sessions, before he was too old.

Just to add a complication to it all. I am actually in Europe (ex-pat) and mental health issues, treatment and support is not as good as the UK here. My logic here is, if its hard to get a diagnosis in the UK I might have one hell of a battle on my hands. I think a food diary is a good idea, I'm just not sure what the benefit of a diagnosis would be, other than to shut people down who punish my daughter for not eating normally. Really trying to get her some breathing space right now.

My DD1 is now an adult.. and while I don't think the dx even existed when she was a child... she most definitely has had ARFID from the moment she started solids... she ate only white food for one year... that was tricky.. foods couldn't touch, there was an extremely limited no of 'safe' foods she could eat.
Meanwhile her siblings ate everything.

We had no way of accessing help, she was just seen as odd and difficult and 'picky' and lots of 'well children won't starve themselves' rubbish.

Well she did starve herself... by the time she was late teens she was a very accomplished 5 stone anorexic. She recovered..but has had a few lesser relapses. She is a wonderful person, and has very clear insight to her eating difficulties and has always said the less pressure to eat, the easier it is. She is also on the spectrum.

I'm saying this because if you can get help, DO but if you can't... accept her.. and never allow others to force the issue, it SO does not help. The sensory aspect is HUGE, my DD1 literally could not put many foods in her mouth.

Despite all of that, and the relapses into anorexia, she is now a doctor herself and cracking on with life.. still with a restricted diet of safe foods.. she will always be that way I think.