to think this food advice for 3 yo from paediatrician is ridiculous?

[JustCleo]

3 yo DD is going through the assessment process for autism at the moment. One of the many things she struggles with is food. She has never eaten hot food and will not touch it. She has a very limited range of foods which is reducing weekly because she gets fed up of the same things repeatedly. The only things she will eat are:

Cucumber
Peppers
Grapes
Pepperoni
Cheese
Crackers
Crisps
Cake

At her last paediatrician appointment I mentioned how her diet has become more restricted than previously (she used to have 4-5 more foods she'd eat) and the paediatrician didn't seem to think her diet was that bad. She said to give her cake and crisps more often to keep her weight and energy levels up Currently she has them 2-3 times per week maximum.

Aibu to think this is crap advice?

Can I just say, before cutting out anything like gluten or dairy - it is vital that you see a proper, specialist dietician - especially with a child with such a restricted diet. Gluten free substitutes are often not the greatest nutritionally, dd2 is wheat intolerant, and it is hard to find palatable alternatives for her (and she is a 'try anything/eat anything' person!)

Yseulte - my ds is not autistic. What you describe in the rest of your posts (curious to know how old your niece is and how long it took) is very different in tone to your original post to the op I would definitely avoid excessive cakes and crisps - as sugar and refined carbohydrates can cause blood glucose spikes and crashes which can impact behaviour. When you have then gone on to describe a long slow battle to introduce different foods, whilst still feeding her the foods she will eat (which is what many other people say they have done/are trying to do)

"Sensory diet" means the same here, zzzzz, ds has a sensory diet in place, but it involves having stuff to twiddle, using deep pressure to calm him, using headphones to block out noise etc.

Op wrt nursery - what does the senco say about the ehcp? It should be started now, and if she doesn't make the request, then you should. I am a 1-1 at a Preschool and with a child like your dd, we would have 1-1 allocated, and be working on a transition to school now ready for September. You do not need a diagnosis to have an ehcp or to access 1-1 help (in school or nursery). My ds is not autistic, he has no confirmed diagnosis, but he had a 1-1 at preschool, he has the highest level of support on his ehcp and is in a complex needs resource base - if your child has additional needs that need additional support then they have a right to that support author without a diagnosis. Please go to the SN boards for advice on this bit, because there are some really helpful posters who can help in this area.

Yes, I would imagine the only way to get round this is to sneak things into a homemade cake - grated veg (carrots, beetroot) seem to disappear very easily in cakes. If biscuits are popular - what about sneaking some ground nuts in (e.g. almonds) - the texture would be same but you would have extra nutrition. Of course the only problem with my suggestions depends on how much time you have on your hands - I used to make all these healthy extras for my son when he was weaning - now when he is a toddler I concentrate on cooking meals for the whole family - for a couple of days if possible, so I don't know how I would find the time to follow my own advice! Good luck

OP, we have been lucky with DS's diet, as it's pretty varied for a 7 year old with ASD. Although he won't eat all the offerings for school lunches (neither would I though, to be fair). Note that I used the word "luck", as I suspect that's the most important factor.

I think trust is very important for children with ASD. I would never try to trick them into doing something, as it will have a long-term damaging effect. So I personally would not go down the road of hiding things in other things with DS. Having said that, telling him that "I'm not saying you have to do x" can have an almost miraculous effect on DS's willingness to try something new. I think it takes some of the anxiety out of the situation.

I was just wondering if it might be uncomfortable for her to eat much of anything. Does she have any issues with constipation/withholding poo? Or perhaps her teeth are sore?

Good luck with the new school.

OP I think the main issues here are
food related anxiety - don't let it get so bad that they need to be tube fed.

severe weight loss - leads to malnutrition and the body starts to use protein from vital organs for energy.

Cake an crisps is better than thise two outcomes.

It isn't a long term solution but often a child will try more foods as they get older. They will be in a better mood when their energy levels are met even if that is with cake and crisps. Then you can sometimes persuade them to eat new things.

It's important to remember that good advice in SN kids can be very different to good advice for other children.

We have successfully increased Dd's weight with milky way milkshakes. This has also improved her appetite and mood overall.

I'm in a similar position food wise, JustCleo. My ds only eats enough to take the edge off the hunger, other than that he has no interest in any food, lives off water and air. He has a couple of mouthfuls of food a day and that's it. He hasn't gained any weight in almost a year and our dietician has told us that the main priority is to prevent weight loss so he is on a super high fat/calorie diet. We are advised to add cream and butter to all his food in order to make every mouthful count. The dietician tells us to offer him cakes, crisps, chocolates etc, although he's not really interested in any of it.

I said 'excessive' I didn't say none. DN is 10 now, she was diagnosed at 3/4.
I think my sis would say that in retrospect if she'd known how beneficial cutting out those types of food would be she wouldn't have started them in the first place.

I have to say I found the idea of cutting out foods in an already restricted diet bizarre and scary. It's counter-intuitive. I certainly agree that it should only be done under medical supervision.

This is the second thread I've seen in a few days where sensory diet has been interpreted to mean food .... as pp's have said - it's NOT that.

OP ... Again, please check out the SN boards, you'll find invaluable help and advice there from parents of children with special needs, who understand fully the challenges we face, and provide practical and informative help and advice.

AIBU is NOT the place for these kinds of threads.

Sorry 2 more things - agreeing with op - ds's eating improved a little after he had had some teeth out - so definitely keep an eye on those, but get referred by your dentist to a dentist who specialises in special needs. He also has to have daily movicol due to constipation so keep an eye on that.

The other thing is school and meals - talk to the school now, about a plan. Ds has school meals - they don't put sauce or gravy on anything, he has small separate bits of food, there is always bread and butter, and a yoghurt - he wears his ear defenders because he doesn't cope with the noise, and sometimes he has eaten in the classroom because the smell upsets him (the smell of school tuna pasta upsets me too tbh!) Since starting school he will eat their roast potatoes, and meatballs (no sauce) - so sometimes it can be helpful for a child to eat outside their home environment.

If carbs and sugar constitute half a child's diet, then cutting back dramatically can be dangerous!

if she'd known how beneficial cutting out those types of food would be she wouldn't have started them in the first place

I obviously can't speak for your sister, but having a diet that consists of porkpie, chocolate brioche and squeezy yoghurts isn't really something you plan, but when a child refuses so much food, you find yourself clapping your hands with delight when they eat a cream cracker with jam. I have 2 children older than ds, they eat what we eat, I know how to feed a child - what I wasn't prepared for was a child who hides under the table from food that upsets them, or can't form a bolus and aspirates into their lungs, or has reflux so associates eating with pain. It sounds as though you and your sister have worked really hard to help your niece - I think we on this thread with children with severe problems around food, are all working really hard, but all our children are different - there is no one magic way that will work with all children.

I really wasn't having a go your character zzzz, your choices up entirely up to you. I just can't get my head round putting ideology before something that could potentially help.

I wasn't being serious about 'real' ASD, but you keep insisting that her food refusal was 'mild' and won't grasp that it wasn't mild before she went to Brostoff. It seems like you don't believe it was as bad as it was.

AnotherTimeMaybe reported a very similar experience, and actually, of all the food refusal lists I think only eating 'chicken nuggets chips and oatmeal' is among the most restricted on the thread.

She reported a big change, that's what I experienced.

I obviously can't speak for your sister, but having a diet that consists of porkpie, chocolate brioche and squeezy yoghurts isn't really something you plan, but when a child refuses so much food, you find yourself clapping your hands with delight when they eat a cream cracker with jam.

That's exactly what I say to her. She wasn't to know. But that doesn't stop her feeling guilty. It's just that when she tried reintroducing shop cake as a test, the detrimental impact on DN was quite marked.

I should say it wasn't just cake...

unlucky83, I couldn't agree more with your point about the healthy eating message at school.

My DS came home from school one day saying he was very healthy as he was thin. This is from an underweight child under the care of a dietician. I was very annoyed.

I wish they would change their message to say that being healthy means being the right weight for your height and that being underweight is not good for you either.

All I have to go on are your words here.

I have to work this afternoon, so I'm off.

Good luck OP my heart goes out to you.

I wouldn't push the crisps (loads of salt and additives) but you can make vegetable or fruit crisps to give a healthier option if you have time?
(There has been research investigating the link between food additives and behaviour; Beezy Marsh and Robin Yapp published an article 25/5/04 featuring Carol Johnson. Mostly about ADHD but might be a place to start if you're interested.)

Also try to add calories by stirring a teaspoon of olive oil into something they will eat or a tiny bit of butter we were advised to do this by feeding team at Great Ormond st years ago.

Both my children have ASDs.
Both have restricted diets.
With DD if she is served a different version of a 'safe' food it is no longer safe. I've made that mistake twice now before we had a dx and realised she wasn't just a fussy moo bag.
For lunch she takes cream crackers with butter on them. She used to take cheese chunks as well but she says they taste funny at school (probably because she likes 'plastic' cheese and it doesn't do well out of the fridge!)
I cannot buy a different version of a favourite food. Tunnocks must be Tunnocks and not a generic version..
She gets most of her nutrition from gravy.....
DS hates gravy.....
There are about 3 meals they will eat happily and I serve all their meal components in little tubs so nothing touches!

You have my sympathy OP. I spent so much time worrying that I was being a bad mother not getting them to eat 5 a day. Now I am just happy when they eat.

One of the differences between seeing a community dietician and a specialist dietician is that the community one talked about smoothies, making vegetable cakes, hiding stuff in sauces and making funny faces out of food - the specialist dietician is who you get referred to when these things don't work. Because honestly if I gave ds a crisp made out of beetroot or a cake with courgette in (all tried) he would be terrified and not eat for days!

When you find yourself trying to inject pureed vegetables or vitamins into the centre of a porkpie, you realise you need something above and beyond the standard advice.

Haha I was wondering that too zzzzz! Somehow I think she might just notice oil mixed with her cucumber

I will ask for a referral to a dietician, thank you.

She is sometimes better in the car but mostly she's exactly like a PPs DC and will eat just enough to take the edge off her hunger and thirst. She generally doesn't recognise that she's hungry or thirsty and if she does she won't do anything about it unless directed to do so. She never knows what to eat or fancies anything in particular. She won't even eat mcdonalds or beige food like waffles. If one more person tells me IRL that she'll eat when hungry enough (as was her nursery teachers advice about my concern about her not eating at nursery/school) then I think I'll actually scream.

With my dd2 it has to be a certain brand or shop that's it's bought from too. If she doesn't believe that the cucumber or whatever is from waitrose, she will check the bin for evidence

Haven't read whole thread sorry, but one of my dc was a tricky eater at that age and I used to make a cake which they loved trying to include as much nutrition as possible using (in normal cake proportions):

self raising flour
butter
eggs
bit of milk
ground almonds - nearly as much as the flour
bit of lemon zest and vanilla essence (for taste)

They were quite yummy and helped dc's weight and energy levels up.