Autism and eating nothing at all

[EAST34]

Hi all, im looking for some help/advice or just to see if anyone has been in a smiliar situation that will give me some hope. My daughter has recently been diagnosed with autism which we suspected for a long time, and food has always been a big issue. Her diet is extremely limited, however 18 days ago she decided to stop eating completely and I'm beside myself. She is non verbal so cannot tell me whats going on, if she herself even knows. I've been passed back and forward from child health and GP and after a struggle and all of my energy, got her an appointment at the hospital. They have taken bloods and swabs however got the impression they think its all to do with her diagnosis. Im reaching out as I feel like I'm almost at breaking point and wondered if anyone else has been in the same position that can offer some hope to a desperate mum. Thank you

So how is she getting nourishment?

Milk at night and apple juice, now finally got a dietician for supplement drinks after fighting for some time, but I wondered if anyone has been here and can help me to stay positive in that she will eat again

Have you offered soup ? Jelly ?

Choc moose?

I've not been in your position, but ice cream milk shakes often are acceptable when nothing else is. If she's accepting milk, she might take that and at least it's a bit more in terms of calories.

If she'll accept a milkshake, you can often sneak stuff into it. I was a very fussy child, no interest in food, so my mother used to put eggs in mine (no real taste difference, just extra frothy), or you might get a protein powder in it.

Good luck, I hope you get the help you need very soon.

So much of it is likely sensory..

Have you tried birds eye potato waffles that have been in the toaster ?

How old is she ?

Have you tried pictures/ photos for communication/ choices?

I believe in you and in her. Stay positive, there is a way forward. Keep still for a day, leave the phone calls and appointments aside, and just be together. Give yourself time to breathe, and her too.

Hi OP,

I'm so sorry to hear what you are going through. My son is autistic and largely non verbal and has a restricted diet. One bad experience seems to put him off a safe food and restrict him further e.g. on holiday we encouraged him to try sausage and because it wasn't like the sausage at home he will no longer eat sausages.

My son is 5 and a half and still has cartons of formular in a bottle usually at bedtime. I know the usual advice is to stop bottles a long time ago but I feel it gives him a multivitamin dose - and there is no way he would eat a multivitamin or get a good balance of nutrients from his diet. I know I should try to get him to have it in a cup though.

I'm glad your child is accepting milk and juice. Any chance they are under the weather or the hot weather is putting them off eating?

I'm sorry I don't have any answers - just hoping things turn a corner soon xxx

Hi OP my DC2 has autism and an extremely limited diet. Although they have been diagnosed for years with autism, we have only in the last couple of years got a diagnosis of avoidant restrictive food intake disorder. It’s an eating disorder and can be very stressful and upsetting. Especially when they stop eating completely. My advice is address ARFID with your paediatrician ASAP and CAHMs should get involved too.

Give your child whatever they want to/currently accepting to eat regardless of what it is. Make sure she is also getting in supplements if possible (my DC hates them but I use a liquid one)

My Dc currently only eats nuggets and they have to be a certain brand, cooked a certain way and be a certain colour and texture. I can cook their dinner up to 3/5 times a day until I get it right. They only drink water and It’s very difficult but nothing is as bad as when they stop eating altogether.

Also be careful with smells my Dc really struggles with seeing other foods and smelling other foods as this can put them off eating too and usually ends with them vomiting and refusing to eat.

There is a book called Food Refusal and Avoidant Eating in Children including those with autism spectrum conditions by Gillian Harris and Elizabeth Shea I would order this and give it a read.

Happy to chat anytime if you need too. I know it’s very distressing for you both.

Thank you so much for your message. I will try and speak to the paediatrician about the avoidance disorder. She just won't eat anything and not remotely interested in anythubg either just bats it away or takes herself away. Sounds like you have a difficult time too, its so hard

Thanks so much. Shes always poorly but just put it down to her diet. I might try formula to try get more goodness into her, thanks again

Thank you x

I've literally tried every food imaginable but she won't take anything, and has never really done the soup or jelly as so restricted on what she will tolerate

Shes almost 4 and yeh tried pecs and flash cards but no joy

If she is okay with milk. I would go with Pediasure and mix it with milk or have it by itself (it’s a shake). One glass is equivalent to 250 calories if I remember correctly. I think it is sold in Boots and comes in vanilla, chocolate and strawberry.

There's a very good ARFID parents group on facebook - 14,000 members. My 15 year old DD isnt diagnosed but likely autistic and has had a very restricted diet since she was 18 months old.

I would really recommend the facebook group - so much advice and support.

Good wishes to you and your DD.

We have Gillian Harris's book too - really helpful.

It's ARFID.

Op try not to get to disheartened my DC is not interested in food at all. I’m told this may improve as they get older. They were very underweight but around 6 years old would eat nuggets as previously stated, this hasn’t changed over the years so far. However it’s not out of hunger or want that DC eats but more to do with keeping routine. DC likes to eat at specific times and stick to the visual board we use. I use a visual board for their whole day as this seems to work for us and DC response well to. Otherwise DC would never ask for food. DC will only have lunch and dinner never snacks and wont eat anything for breakfast but it’s miles better then where we were.

My daughter is almost 3 and she didn’t stop eating completely but we’re just coming out of a 6-8 week period of her rejecting most meals and even her favourite/safe foods, which was a somewhat restricted list anyway. She was still having milk but it’s so hard seeing them not eat when you know they must be so hungry.

Glad you’ve got the supplement drinks for her now. Guess all you can really do is keep offering foods she usually likes and keep pushing for referrals/investigations. Maybe keep a food diary if you haven’t already so the professionals can see just how limited her eating/drinking is at the moment.

Hope things get better for you both soon.

Hi how is your daughter now with meals do you have any update? My son is nearly 4. Diagnosed ASD & is non verbal for nearly 12 months he has eaten 1 pasta dish nothing else wont try anything doesnt eat any snacks literally nothing else at all. He has suddenly 3 days again stopped now eating this one meal. So hes had nothing bar milk. Hes not unwell no idea what to do.