Is there an organisation or someone ds can be referred to for his extreme fussy eating?

[whoingodsnameami]

I was'ny sure whether to put this here or in special needs, so will try here first.

DS has AS, he has never had a good varied diet, despite attempt after attempt, he only eats around 12 different foods, if that, he will not try new food at all, also food cant touch each other on the plate, he has a special plate with segmants.

It has always been hard especially meal times as I have to cook 2 seperate meals most times, however, now he has started refuses the food he normally eats, so his choice is becoming extremely limited, unfortunatly through desperation over the years his diet contains foods that are'nt great, for example, burgers and spaghetti hoops, the only veg he eats are raw carrots, fortunately he loves various cereals (no sugar) and a few fruits, and loves to drink milk and water and 1 bottle of actimel a day, however I am still getting increasingly worried about his health, more so now he has started refuses foods he would normally eat, spag bol being the latest.

His paediatrician has given him a good look over and thankfully there are no signs of any deficiencies, but I feel its onlt a matter of time before his health suffers especially in the long term. I have been told there is no specialists out there that deal in this area, has anyone had similair problems and can give me some tips on what to try.

Hi, not sure that I'm going to be that helpful because its a bit vague but I work in services for people with Learning Disabilities and I have heard our dietician talk about how important it is to establish good eating with people with Autistic Spectrum Disorder - I'm guessing it must be the same with AS. Unfortunately I dont know any more than that - no idea what you're meant to do but I wonder if you could get a referral from specialist services, a specialist AS dietician or an AS voluntary organisation. Perhaps the Special Needs board would no more about the specific difficulties rather than the remedies for more general fussy eaters.

CC - I hope you're right. DS2 talks about wanting to travel - he wants to be a natural historian - and I've pointed out that they won't have Hassled's Pasta Sauce there. We've laughed, but it's a genuine concern - as it stands, he won't ever be able to go to a proper restaurant, or travel independently, or all the things he wants to do.

The mad thing is, ds eats a hell of alot, he is always hungry and eats a huge amount, but the same old stuff all the time, he does seem to enjoy eating.

It is helpful SpringFlower, I am sure there must be someone out there trained in this area to help ds, however the paediatrician says, there are only specialists for AS/ASD as a whole, no specialists for the individual traits, the gp said pretty much the same thing

Oh, we have specialist LD dieticians in our teams but it must vary in different areas. Will ask our one if she has any advice as to where you could get info.

Thankyou SpringFlower, that would be good

Am sure you are right, if I lived in London or another big City there would be a help arounf every corner.

Hassled - yes travelling or just going out is so awful isn't it. We have been to Italy where you would think any DC could eat safely but DD can't find anything on the menu. They don't do garlic bread very often, think that is more 'french'. So we split and I go out with 3DCs and DH stays at home with DD or the other way round.

Who in Gods name - if the volume is ok (never mind the quality for a minute) is you DS underweight?

No, he is'nt underweight, they said last week his weight is perfect for his height, he is skinny but very very tall for his age, he eats a huge amount and seems to have a very fast metabolism like his dad

Now we're safe in Italy (thanks, pasta!) But we went to Greece last Summer - DS2 lived off air and apples. It was horrendous. Like whoingodsname...'s DS, DS2 eats a lot, is growing well, clearly healthy - just always the same things.

I sometimes wonder if it is perhaps a control thing with ds, as bless his heart he still is not toilet trained (anxiety related) so perhaps food is something he feels in control with, hmmm, but then, so many theries have ran through my mind over the years.

As springflower says, there are specialist LD dietitians but NHS provision varies horribly area by area. Have a look on the British Dietetic Association website and see if there are any near you.

Department of Health just stuck out a whole load of announcements about reforming the treatment of LDs in the NHS on Monday, btw, so in theory if you ask for support, your PCT or LD service HAS to act rather than just brush you off.

I don't know much about AS and nutrition but just to reassure you, my sister and I were both fussy eaters as children - my sister to the sort of extremes you are describing - and grew up just fine. It's amazing what children can (or can't) live on!

Thanks edam, I will have a google tomorrow and try to find some info, thanks for the chat and advice ladies, I need to sleep now, thanks again.

jellyhead, my 4.5 year old DS (also ASD) also eats a very limited range of foods and to my horror is still dropping certain foods rather than increasing them.

No-one seems to be much help.

He doesn't eat any hot food (other than toast), no vegetables, and no meat.

Sure is a worry.

Gosh -spoon feeding!

this is so difficult isn't it?

Do you feel that this difficulty reflects on you? I feel that I have done something wrong here and am at great pains to let people know that my other DCs are fairly normal and I am not indulging just one of them.

Yes, we have friends that DD can go to and they just don't major on it and bring out some toast.
DD is going away with school next week and I have had a word with her teacher to explain that she is extremely fussy. Teacher said that DD was to go to her if there was any food that she didn't like and she would sort her out but I am worried that DD will be milking this being a bit 'different' to her friends. I just wanted to the teacher not to fuss when all DD has is a plain baked potato or bread and butter.

Although I do know that this teacher has taken a microwave on these trips with her before as I think she prefers her own food. So hopefully it won't be a problem.

It is just a small part of their lives anyway but seems to turn into a huge issue doesn't it?

No, I don't feel it reflects on me. He used to eat normally - I have a photo of him at the teatable with his older brothers eating sausages, chips and peas - but his eating deteriorated as the same time as a lot of autistic behaviours developed.

Ds was like this, for a year he lived on quavers, yoghurt and anything with breadcrumbs on. Building up to that we were trying to get him to eat what we considered proper meals. His weight dropped frighteningly low ? made no differecnce to health or energy levels. The health visitor sent a phsycologist (spelling?) to monitor him and she said it was all about control.
She asked what would he eat calmly, hence the quavers, yoghurt and anything with breadcrumbs on which he then ate 3 times a day for at least a year. We had to get the situation back to total calmness, both for us and for him. It had got to the point that he would fling a plate of food across the room rather than eat it. He could go out to tea and be quite happy not eating, or we wnt on holiday and he ate nothing but bread and bannanas. I would get so upset, but think because I wasn't showing it he didn't know but of course he did.
After a year of quavers, yoghurt and anything with breadcrumbs, slowly things started to shift ? but on his terms, again control was key. For example, he heard a boy at school talk about pizza so he decided to try pizza, he went somewhere else for tea and tried broccolii and so on.
This has gone on and on and now he is fantastic and those vile dark days are totally gone. He will try anything we ask, loves coming out for a curry or chinese. So there is light at the end of the tunnel, but for us it has taken alot of time and heartache.
(especially when mil tells you how you are doing it all wrong, she of course can get him to eat. Imagine my glee when she rang when he was staying with her when I was in hospital, totally shocked and saying, he really won't eat will he!)

ds2 was like this until he started school! again, 2nd child of 4dc's. until he started school he would eat, spaghetti bolognaise, lasagne, fruit, most veg except peppers and mushrooms, toast, cereal, mashed potato, chips and gravy. now he is at school he is not so bad, he seems to eat more meat now, as before the only meat he would eat was mince and sausages. he has progressed now and will eat a roast dinner with meat, but he still wont eat burgers- taking dc's to mcdonalds and he has medium fries and strawberry milkshake.

DS has just announced they are having chinese food at school on Monday to celebrate chinese new year, he is so excited because he loves noodles, I am just hoping and praying they will be similair to the ones he like from the local take away.

I would be hoping for some prawn crackers!

has anyone suggested a diatician?
or does the referral need to come via a paediatrician?
school nurse or health visitor may be able to refer

ps,
have you had his iron checked?

that might be a pointer to have an iron supplement, and less worry for you regarding the fussy eating