ASD and food issues, getting to end of tether

[AsTimeGoesBy]

DS (11, AS) was weaned as normal as a baby, then at 18 months old suddenly withdrew from eating lots and lots of foods that he had previously eaten happily. We have muddled through the pre-school / primary years whilst trying all sorts of tactics to broaden his palate, but have expended so much energy on helping him with social skills, school work, getting a statement that we haven't really put all our efforts into this. It's come to a head now, he has started at a special school for Year 7 and school dinners are compulsory, they have a great chef, and at least 4 choices every day, but there is virtually nothing there he will eat most days. Same when we eat out, if we go to a pub there are likely to be one or two at the most menu choices for him, normal cafes are a total non-starter, our only options are pasta, pizza and Indian and the rest of us are heartily sick of it. He won't eat any sort of plain or bland, normal "British" meals, roasts, stews, and meat and two veg type meals or potatoes in any shape or form. He's not malnourished as he eats a reasonable balance of food groups, but chooses from such a restricted range.

I'm at my wits end quite frankly. I just want to be able to cook normal every day meals and have most people eat them most of the time. I've posted on fussy eating threads before and been told I should just put down a meal in front of him and if he's hungry enough he'll eat it, oh no he won't, he'd rather starve and is a skinny (10th centile) thing. Also been accused of stealth boasting because the few things he will eat include spicy foods and couscous, I know it makes me sound like one of "those" mums, but life would be so much easier if we could occasionally go to MacDonalds or have fish and chips.

I suggested to him tonight that we try and get a referral to a dietitican and he hit the roof, he is very defensive about it all. Has anyone got any suggestions, or found a dietician useful for these sorts of issues? I am going to talk to the school again, but I feel I really need to try and help him more at home.

[TorianaTollywobbles]

Hi im sorry i dont have any suggestions but wanted to tell you you are not alone. We are in the exact same situation with dd, also 11 and asd. We had a referral to the hospital with the hope of getting a referral to a dietician but her case was just referred back to the community paediatricians. I had a phone appointment with him this week and it was less than useful. All he could say was that it is very typical of asd kids, and that essentially she would grow out of it and decide for herself she would start eating new things.
When i pointed out this had been ongoing for years and the range of foods she ate had got smaller over the years not bigger, and that i had my doubts that this would happen, he had no answer. Just the usual advice, to keep offering new foods but not to make a fuss over it and if she didnt want to try it just take it away without comment.
Dd only really eats bread, cheese, crisps and biscuits with a bit of fruit thrown in now and again. No proper meals at all, i feel your pain totally. It also causes issues for us when eating out, often the only thing she will eat is a cheeseburger, but if its not quite right she just wont eat it.
I too am at the end of my tether with it, everyday dd asks whats for tea and i tell her i dont know.
Because she is healthy, not underweight and not deficient in any vitamins or minerals, theres nothing more they will do. Feel back to square one and dont kniw what to try next.
Sorry this is not very helpful but sometimes its comforting to know someone else is going through the same. I would also love to hear any suggestions anyone else has.

[melinski]

I'm in the same position with my 8 year old. The list of acceptable food gets smaller as she gets older. She won't eat acceptable food if it looks different to how she normally has it, or is a new brand

If I try and get her to try something new she gets so worked up, she wretches and vomits

She does eat a few things from every food group so I think her diet is fairly healthy, even if very limited. But it does drive me mad because I'm limited to what I can cook for the family, and she doesn't really ever eat out (except for mcdonalds ). Luckily she has a packed lunch at school.

[AsTimeGoesBy]

Thank you all for posting, it's a great comfort to know we're not alone even though no one has any real solutions. It haa struck me with him starting at secondary school that it's going to be a worse problem as he gets older, just because of social norms and expectations, and growing independence.

One thing that helps us a little is going to the supermarket and saying choose one thing to try, doesn't matter what it is, occasionally we get lucky, but inevitably it will be one very specific new thing, such as a type of cereal, not a broader category.

[Ineedmorepatience]

Dd3 eats a good range of foods compared to many children with Asd but she is very rigid in her food intake!

We still have all the things that we want to eat and she has something different if she doesnt like it!

We like to eat fish which she wont eat so when we have fish she has sausage or chicken of some description!!

If we go somewhere where she may not eat the food she takes a picnic!

As far as we are concerned life is too short to stress over food, Dd3 is growing, she is hardly ever ill and she will try new things when she has a mind to.

I think the best advice I can think of is choose your battles, if its not life and death stuff let it go

Good luck

[Ineedmorepatience]

Oh and meant to say, school need to be making reasonable adjustments, if he cant eat the food on offer, they need to either make something different or allow him to take his own food!

[AsTimeGoesBy]

Ineed - thanks, yes, choose your battles is a good way of looking at it, we do let him have something else most of the time, but I just crave being able to cook a meal that all four of us will really enjoy and not having to juggle extra ingredients and cooking, or being able to go out for a meal without scrutinising menus online first. I try and keep cold chicken which he will eat when we have something else, and freeze portions of leftovers to make mix and match meals easier. I used to love cooking and now I dread it (doesn't help that DH and DD are quite fussy too, DD and DS have almost complete non-overlap of tastes).

Today he had a school trip out, with packed lunch provided, the school had agreed I could send his lunch but he did actually agree to have one of their choices, then came home starving because he hadn't liked any of it, then he wouldn't eat a morsel of our dinner either and just wanted toast, it really got to me today. I am going to talk to the school again next week, it is a special school and I'm sure he won't be the only one with these issues. He's got Scout camp at half term and that's a worry too, although the leaders are very accomodating.

[JJXM]

My DS is 5 and is exactly the same - had a wide range of foods for weaning and then around 18 months started refusing almost everything. Some people tell us that if he is hungry enough then he will eat but that's not true - he will become distressed and anxious and his behaviour will become uncontrollable. This is all he eats:

Orange jelly
Peppa pig ice creams
Salt and vinegar Pringles
Cheese and onion French fries
Dry toast or sometimes with nutella
Chips
Pizza Hut margarita
Dairy Milk
Homemade bread rolls

Nothing healthy at all and it is embarrassing to send him to school with a lunch box full of this kind of thing but like a PP said - it's about picking your battles. We try sneaky things like replacing the oil in the bread rolls with milk.

DS is not remotely overweight because of all of this 'food' because he doesn't eat main meals so it balances itself out.

[VioletBumble]

I may be way off the mark, or you may have thought of all this, so please ignore if so!

Is there a common factor to the foods he likes, or do you think it's just that he's got ingrained into eating certain things and that's it?

eg if he likes spicy/strongly flavoured and crunchy food can you alter blander meals so that they incorporate more of these elements? Eg a hot sauce on the side, adding melted/grated cheese, bruschetta with stuff on, olives, lots of crackling with roast pork, roasted (rather than boiled) veg with rock salt.

Does he eat better if he's not stressed? If he is an oral sensory seeker there are sensory 'exercises' which are calming and may help.

[AsTimeGoesBy]

Thanks for the suggestions Violet, some of these things work up to a point (we add cheese to a lot of things), also tomato pasta sauce as he loves that. Hot sauces don't work, although he likes things spicy.

I sometimes roast veg (but am not keen on them that way myself as they go sweeter) and it hasn't made any difference to whether he'll eat them. It's entire meals he dislikes, so for example sausage, mash and beans, won't touch any of it, roast dinner ditto, cooked breakfast ditto, any meat and two veg type meal ditto. And these are the sorts of meals DD loves. Stress doesn't make the slightest bit of difference, he could be as calm and happy as anything but a morsel of potato will never pass his lips.

[SparklingMoon]

We are in a routine where ds eats his food and the rest of the family usually eat something different. If we are eating out with ds we must go somewhere where he is comfortable to go and can get something to eat. If ds is going somewhere with school, to someone's house or to a party it is agreed in advance that ds takes his own food from home. Life is a lot less stressful this way. I never ask ds to try new foods because I remember how stressful it was in the past for him. But ñow ds is actually asking to try new foods! Mostly he has taken one bit and said eww disgusting. But he has recently eaten in McDonalds which is a huge achievement. They made him a roll and cheese with nothing else on it. Ds calls it a cheeseburger.

I would not be able to send ds to a school where he could not take a packed lunch. I would be asking for reasonable adjustments to be made for him.

Dietician told me to accept ds the way he is. I think that was good advice because we have stopped all the unhappiness there was about food. Even extended family accept him as he is now and are more accommodating.

Good luck

[VioletBumble]

Sympathies then OP, I have a fussy eater too and actually we end up doing more or less what SparklingMoon said re separate meals. It was just too stressful going through the battles at mealtimes and nobody enjoyed it. Eating shouldn't be a miserable experience imo.

Eating out is tricker, would he be happy just to have a limited portion of whatever he will eat, even if it's just a bread roll, just while he's out with the family, supplemented by something before/after at home?

[AsTimeGoesBy]

There is no question of moving him from this school, the food is the only tiny negative in a massive sea of positives and we are incredibly fortunate to have it on our doorstep, the alternatives are mainstream which cannot cater for his needs or boarding which would really exacerbate the food problem. He is loving it there so far. I will be asking them to accommodate his needs food-wise, but that misses the point somewhat, which is that both he and the rest of us are desperate to get him eating a more varied diet.

He is tired of having to be singled out for special treatment at Scout camps and parties and wants to eat a more normal diet. He does try things sometimes but usually doesn't like them, I really just want some help with tactics to get him to try things more often and with a more positive attitude, to reduce the fear which seems to hold him back. A lot of the time we do just go with it and make the accommodations, I have always maintained I would rather we all sat at the table eating different things but happy rather than having sad faces peering at meals they don't like, but it's just such a slog for me as the main cook, especially as we are usually rushed for time on weekdays, and I do worry about feeding him a balanced diet. It also rubs off on DD who feels her every whim should be accommodated if DS's is. Anyway, thanks for listening, it does help knowing there are others in the same boat, I know other people with DCs with ASD in real life, but none with these food issues.

[VioletBumble]

Ah I hadnt twigged that he is keen to try new things, sorry. In that case it might be worth trying a desensitisation CBT type approach? Very small amounts of new food at a time, with motivational rewards, gradually building up.

[TorianaTollywobbles]

Time, my dd is the same, she does want to change and try new foods, but it is that fear which is stopping her. Like you, i wanted some help with that which is why we went for the referral in the first place, but no one seems to want or be able to help. Again anything she does try, she doesn't like it most of the time. Its so difficult.

Ive decided that all i can do is try and not get stressed about it and see what happens, and just hope she'll get there herself. I'll have a look at that book, thanks polter.

[AsTimeGoesBy]

Violet he's keen in theory, and will try things he's never had before. but if he's tried something before and not liked it then that's it, never again. I probably did ought to work out some sort of motivational things though.

I'll have a look at that book Polter, thanks. He does eat at the table with us, usually with his nose in a book to avoid too much eye contact, but does engage if you chat with him.

JJXM - I'm with you on the embarrassing lunchbox thing, DS used to go in routinely with a dry/empty Warburtons thin, a handful of salty pretzels and a few raisins, the lunmchtime staff must have thought I was very strange. One good thing we did find was one of those thermal flasks which he liked filled with pasta and tomato sauce, that was used at least twice a week at primary school.

I feel quite humbled reading some of your posts, clearly some of you have more restrictions than we do, it is interesting how despite the restrictions they manage to stay healthy and well on a very limited menu of foods.

Tell me how does it affect sibling habits? My DD (NT, 9) is also somewhat fussy, but in a much more typical 9yo way, likes plainer foods and a far greater range of things generally than DS. In some ways they do influence each other to try things but I find the problem with making exceptions for DS is that DD (not unreasonably) expects the same treatment. I should add that DS's AS doesn't affect our home life too much (unlike school and his social life) so the DCs are treated equally in all other respects, same chores, same expectations WRT behaviour etc and he's fine out of the house too. I realise all this makes us very fortunate, but it is a double edged thing, it can be hard convincing anyone he's got SNs because the presentation is so subtle.

[AsTimeGoesBy]

Thank you. He does like calzone! Won't eat pastry in any form except cheese straws though, so that might be worth a try. However he doesn't like homemade pizza since he discovered frozen ones .

He likes

Pasta with tomato sauce - this is quite open to subversion with veg, meat etc, spag bol is ok.
Noodles but tends to pick out most of the "bits"
Couscous ditto
Curries - likes naan bread, we use a lot of naan bread. No rice.
Pizza - margerita or pepperoni only
Will tolerate salmon or tuna occasionally (expensive tastes!)
Some fruits, cakes, biscuits
Strong cheeses (feta, parmesan etc)
Hummus
A fair few types of biscuits and crackers
Some cereals and toast with marge for breakfast (won't touch butter)
Garlic bread

It really is a sensory thing, very little bland stuff on the likes list. Trouble is DD likes all the plain meat and two veg meals which he won't touch . So we can cook her favourite meal of sausage, mash and beans and you can't just substitute something for the sausages, he won't eat any of the meal at all. Christnmas dinner is a non-starter for him, won't eat a single element of it, he gets pasta and tomato sauce. And a cracker .

[AsTimeGoesBy]

You can see shy I get accused of stealth boasting on normal fussy eater threads can't you? But that is literally all he will eat.

[AsTimeGoesBy]

Haven't tried Orzo (not sure what it is!). He won't eat filled pasta or gnocchi at all. I'd forgotten about Mexican foods, he will eat enchiladas and pick at chilli (picking out the beans). He will also pick at Minestrone soup as it is tomato based too, variations on tomato-based are definitely the way to go for him. I've never really ventured into Caribbean food, my one personal strong dislike foodwise is fruit and meat combinations which I think Caribbean food is heavy in. Will have a look into it though, SIL is from the Caribbean, I should talk to her, thanks for the suggestions.

[Ineedmorepatience]

In my area there is a clinical psych who is very interested in eating issues with Asd! If you google ARFID you might be able to find some useful reading

[Babbafish]

Just let him eat what he eats.... We had a just milk boy. Aptamil in a bottle.... Then they changed the recipe.... Now has a gastrostomy. He will now eat toast.. (Cut in the right way, the right bread, the right butter) And Pom bears. Maybe once a week!

None of my kids like McDonalds !!! Don't stress it... My eldest was a fussy eater too ( we think he has HFA) we'd just take Tupperware with us wherever we went!!!!