Does this sound like ARFID?

[CylinderHead]

Ds is 14, on the diagnosis pathway for ASD.

Since he was born he’s had issues with eating which have got worse as he’s got older.

Because he’s never been underweight I feel that we’ve been fobbed off for years as he has never met the criteria for referral for this issue.

He has gone through his life having a small core of acceptable foods, usually milk, one sort of cereal, chicken, steak, noodles, McDonald’s nuggets and chips and that’s about it. He will have transient favourites of different sorts of crisps, and will sometimes eat these with salami. As he’s got older he’s more willing to try things but generally doesn’t like them.

He will usually go a few months having the same thing (eg chicken wings every night) then will go off it and switch to something else for a few months, and that’s been the pattern for the last 12 years.

He was ill for all of January, some virus or other, drs saw him and weren’t concerned.
During this time he’s gone off everything apart from noodles, and even then he seems to have lost his appetite and is currently eating very little (noodles plus occasional crisps with salami, drinking milk but not as much as usual).

I’m waiting for another call back from the gp but they don’t seem fussed at all - he’ll be fine, no child starves themselves, he’s post viral and things will pick up (I do think this could be the case), but I have no idea how to get him eating again. Even safe staples like chicken wings make him feel sick to think about.

Any ideas? Would a referral actually do anything to help him? Is there anything I could add to milk to up his calories? I’m just feeling a bit lost with this at the moment.

It sounds like it is a possibility.

I would push for a referral and some bloods/obs in the meantime. If you can get a referral there are some specialist clinics such as the ARFID at Maudsley.

Would DS take a multivitamin?

If DS will drink milk, will he drink a milkshake?

How many calories is DS currently having a day?

He takes a multivitamin every day.

He currently won’t drink milkshakes because they’re usually thicker than milk, but he’s happy to try some different varieties of sachets that would provide more nutrition and calories.

Calories wise up until being ill he was getting enough, for the last two weeks he’s had half a portion of noodles - maybe 200 calories. Around 150 in milk. Probably another 2-300 in crisps/salami some days (3/4 out of 7).

I’ve asked to speak to a specific gp about him, so will hopefully have a chat some time next week.

Given how few calories DS is eating, before speaking to the GP, it would help to read this medical emergencies in eating disorders guidance. One of the red flags is eating less than 500kcals for 2+ days. So at the very least, I would want bloods and obs done.

Update of sorts, ds got to 7pm having only had three mouthfuls of noodles and refusing tea as he wasn’t hungry.

I ended up having a bit of a wobble over it (dd was anorexic as a teen) and explained that we’d be going to the drs next week, and did he remember how dd was when she wasn’t eating enough. I scared him, which I didn’t intend to do, but he seems to understand that eating is more important than he realised and has had some chicken, some cereal and a cup of milk, and I feel like we have a better plan moving on.

Husband is cross and disapproving because his method of dealing with things is to stick his head in the sand and ignore it all. He thinks I’ve given unnecessary details. I suppose we’ll see how it goes!

Chocolate sustagen has been ordered and hopefully arrives tomorrow.

Thank you everyone for your helpful suggestions.

Have a look at this book by Dr Liz Shea. She used to work at Birmingham Food Refusal Service.
They have resources and courses for parents.

https://www.awesomebooks.com/book/9781787758599/the-autistic-teens-avoidant-eating-workbook?gad_source=1&gbraid=0AAAAADocATDeds-kK1UIwL8P_28nDy8fW&gclid=EAIaIQobChMIup-G8f67iwMVEJlQBh2u5R6tEAQYFiABEgIiSfD_BwE

I've got one with ARFID and a DH who is equally unhelpful. I'm so sorry, it sounds very difficult

I did an AMA a while back if anything here is useful.
https://www.mumsnet.com/talk/AMA/4756890-parent-of-young-person-with-arfid-avoidant-restrictive-food-intake-disorder-ama?page=5&reply=133858105

To me, it does sound very much as though your DS has ARFID but obviously I can’t diagnose. He sounds extremely similar to my son - both in what he eats and the cyclical pattern of how he structures his foods every few months etc.

Being underweight is not a criteria for having ARFID but knowing the NHS they’ve now made it a criteria for having structured input from an outpatient ED team.

I'd missed your AMA @Verbena17. Thanks for posting the link

Thank you so much! They do sound very alike!

He’s eating a little more at the moment, still not enough, but better than he was. The milkshake is a godsend! He knows he can have some when he’s not fancying any food and it takes the pressure off, so thank you to those who suggested it.