ARFID?

[Punxsutawney]

Ds is 16 and autistic. He was diagnosed last year age 15.

We have had quite severe problems with his eating for well over a year now. He has sensory issues, a restrictive diet and lack of appetite at times due to low mood/ depression. He stopped eating with us too, so always eats alone.

Ds is very low weight now. He's 49kg at 6ft, so below the 1st percentile on the children's BMI chart. I'm worried about the long term damage this may cause.

He is now seeing CAMHS due to significant mental health difficulties and his low weight was flagged at his assessment appointment. Ds does not have any body issues about how he looks or wanting to lose weight etc.

He has upped his food intake a bit since his CAMHS appointment as it has been suggested he needs blood tests but he's not gained any weight.

Unsurprisingly his energy levels are very low but he's been underweight for so long now that I don't think he remembers what it's like to feel normal.

I don't like self diagnosis or Dr Google but does anyone with any experience think it sounds like ARFID?

It could be ARFID if he is specifically avoiding certain foods etc. You could call Beat for advice. Here is their advice on ARFID - www.beateatingdisorders.org.uk/types/arfid

Does he avoid certain foods and have some that he will happily eat?

I have ARFID. Luckily I have safe food from each food group but avoid socially eating with anyone in not close to in case I don't like anything on the menu or have to ask for things plain etc. It's limiting and frustrating but manageable. What you're describing sounds different to the usual classification of ARFID but everyone is different!

Can you up the amounts of his safe foods, so that he's eating more?
Are there any ways you could encourage him to sit with you for his meals? Or to sit around chatting with you with nice snacks on the table so he doesn't realise he's eating them?
My youngest has an extremely restricted intake, and it's so hard when they're underweight but don't want/can't eat.

Ds8yo has a diagnosis of ARFID. He has classic ASD as well, he was diagnosed with ARFID at 5yo.

He eats a very restricted diet. Even within the Toni list of food that he eats, he is very particular. For example, he will eat cocktail sausages, but they have to be M&S ones. He will eat garlic bread, but it had to be a flat bread, or even better a pizza base with garlic butter, it can’t be a baguette. Lots of things like that.

Many people with ARFID will have other needs around food eg won’t eat with other people, will only eat off a certain colour plate, will only eat a certain colour of food etc.

What are his safe foods? Would he add things like milkshakes?

I have put my foot down with DS about having a multivit/mineral supplement, but he's 11 not 16! I support him with his restrictions, he has to eat a supplement.

I was worried my DS might have it, I contacted an ARFID charity and they recommended a book that was very helpful. I've pasted their info below -

Our website www.arfidawarenessuk.org has a great deal of information on this eating disorder and potential treatments. There are a number of books that we recommend for more information and also a ‘resources’ section that you can use to download information to take to your GP for a referral. We particularly like the book by Gillian Harris and Liz Shea which was published this year called ‘Food Refusal and Avoidant Eating in Children’.

ARFID often goes hand in hand with autism, restrictive eating because of sensory issues and/or forgetting to eat. Obviously it's still important to rule out any underlying physiological causes for being underweight though.

My DS was diagnosed at a similar age but, until he reached his teens, disordered eating since he was a toddler was the only very obvious sign that he might be on the spectrum as he is very good at masking.

welltidy that's a really common one. I will only eat Richmond sausages and heinz tomato soup & spaghetti Hoops. I also struggle when hungry (the hungrier I get the less I want anything. I usually end up eating pizza at this point - so healthy )

I think the important thing to remember is that with ARFID no amount of cajoling or distracting will make a sufferer eat something they can't eat. Its definitely not a choice to be so particular with food. I'd give anything to be able to just eat!

Thanks everyone. Will have a look at the links. And definitely yes to certain brands!

Ds eats about 3 different meals that we alternate. He's eaten very restrictively for so long, it's kind of our norm. It's the weight loss and such low weight that is concerning me.

I think we are managing to get him to eat a bit more of what he sees as safe foods. Although I notice at the weekends he can definitely forget to eat if we are not on it. He had not gained any weight last time he checked. We need to see if we can get him to eat with us a little bit too.

He's seeing Camhs once a fortnight and although they are not hugely concerned they are verbally asking him how his eating is going. The nurse did explain to him the impact of such low body weight and I think he was quite shocked at how low his weight had got.

I'm wondering if it is a combination of different things that got him to this point. I forgot to mention in the OP that he also has a brace fitted a couple of months ago, so massive sensory issues with that on top of everything else!

SM we were always told to go with what DS was willing to eat, and not to push too hard. The worst thing to do with someone with ARFID is to limit the range of foods that they will eat even more by interfering with their safe foods.

For example, DS will eat (a little) Heinz tomato soup but no vegetables at all. (He has an extremely narrow range of foods.) We want to expose him to vegetables, and the easiest way to do this is to add them in puréed form to a liquid. So, we puréed red peppers and added them to the soup. But, due to his sensitivities, and to avoid a situation where he then didn’t trust the tomato soup at all, which would achieve the opposite to what we wanted, we literally dip a little fingernail into the purée and then dip the purée covered fingernail into the soup. There is barely a trace of the pepper in the soup. And we do this for maybe a week. And then increase in tiny increments.

I take it really seriously and go with it, limiting and difficult though it is.

His food intake OT told me of a child that she was working with who had ARFID who would only eat chocolate yoghurt, sitting in the bath, in the dark, naked. It has really stayed with me and however challenging DS’ food intake can be, I realise how much worse it could get.

Pun that sounds very familiar. I think it could well be ARFID. Ds only eats maybe 12 different things and I include snacks, sweet things and meal ingredients in that. He basically eats all of the same things every day.

Welltidy that sounds like a good idea. I remember one Christmas insisting that there was onion in my Christmas Dinner while my mum denied it. Turns out she'd stuffed the turkey with an onion and then used the juices for gravy. Nobody else could taste it but with ARFID your brain is on such high alert that you are super sensitive to unsafe foods.

Sounds like you're taking it slowly with the veggies but I'd worry about DS losing his trust in you making his food if he figures out what you're doing with his soup/starts to taste the difference