Help advice wanted - ASD child who will eat at home but is playing up big time at school.C

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Could any mums with autism/adhd experience give me some advice please.

DSD aged 11 has adhd (diagnosed 6 plus years ago) and Autism (diagnosed 2 months ago)

We have constant battles with her lack of eating. I am fully aware her medication for ADHD is an appetite suppresant but she does still have to eat obviously. With VERY strict handling at home she will eat, often with lots of encouraging and/or threats of loss of computer time etc but at school she is leading the staff a song and dance.

She tells the lunchtime staff she hates what I put in her lunch box though it is always things she will and does eat at home, the school haven't always been supportive enough over this (I was told the other day it's because some of the dinner ladies feel sorry for her, to which I pointed out will they feel even more sorry when she is in hospital on a drip!) This week it has come to a head as I have again had to go into school because she came home with her yogurt and drink hardly touched, so all she had eaten was 3 small cheese sandwiches.

The school promised to be tougher with her, the head has this afternoon rang to say she is refusing to eat her sandwiches at all but is having a go with the yogurt, she has been rude to various members of staff and is still in the dinner hall at 1.30. Lunch finished at 1. I have agreed that for today they will leave her there all afternoon if necc which I feel awful doing but what else can we do. Any ideas???

Her adhd means she can be hugely stubborn and it does come to a battle of wills sometimes, as her stepmum I was way too soft when I met her (felt sorry for the fact Mum had left her) and it took me along time to get to the position I am in now. Do I just give in and not do what the hospital want and stretch her diet and just give her the junk she craves or do I hit this head on and keep pushing away until she accepts she has to eat, has to have a varied diet and that she cannot treat adults like she is doing?? Thanks.

I have similar problems with my DS - 7. He was refusing to stay for school lunch because of these problems and ended up coming home for a month.

Perhaps, just take a step back and let her choose her lunch box for now until the feeling of confrontation and stress subsides. I know it can feel like you're letting them win but the conflict is not good for anyone and it looks like this is heading one way.

Then restart on a positive footing with rewards for positive effort. Stickers on reward chart with a target of for something she really wants.

Don't know if that helps and it is just my personal opinion. But my son ends up with a packet of crisps for lunch most of the time. Not great but better than not being at school.

Does she eat a good breakfast? If not, could she be persuaded to before she takes her medication in the morning? So long as she has enough calories in a day, overall, she's not going to starve herself, even if her eating pattern is rather unorthodox.

If she is eating a small amount at lunchtime, then that's something and suggests that she really doesn't feel hungry at that time. DS1 often refuses food at school and at home and I'm wary of allowing it to become a battleground because it gives him an awful lot of power without actually solving the problem.

And I agree with Debs about allowing her to chose what she has for lunch. Give her the good stuff for breakfast and dinner and allow her to have a decent supper if you think her diet is still lacking, but allow her to have a couple of hundred calories worth of just plain fuel of her choice to keep her going through the afternoon. DS1 protests far less when he's involved in choosing or preparing his food.

Could she come home for lunch? We have had the same problem with dd1 in the past but she's now gone the other way (eats at school but not at home).

It could be a mix of sensory issues and anxiety so having lunch staff badgering her won't remedy anything and will make her more reluctant to eat.
Dd 7 (asd) finds lunch at school hugely stressful it's noisy, smelly and busy. Dd's school have offered dd a place to eat with just one friend but she prefers to stay with the class.
I feed dd a substantial breakfast eggs, sausages, beans, waffles, toast whatever she wants. She also has a decent meal when she gets home so if she chooses not to eat at school it isn't a problem.
Her lunchbox is full of tempting treats should she want them and lunch staff are aware that they are not to comment on whether or not she eats or what is in her lunchbox (pretty unhealthy tbh)
Once the pressure was off dd started to nibble on stuff at school and now eats a fair amount when she chooses.

Ds used to come home for lunch for exactly this problem - to ensure he eat, now he attends SS he gets supervised at lunch so is encouraged to eat. He eats well when he gets home so I let him have afternoon tea and evening dinner to catch up for the low food intake at school lunch. He does not recognise when he is hungry (unless ravenous)- although once eating his apetite seems to kick in.

when my Dd3 started school the dinner hall was a step too far for her, she couldn't stand the smell, the noise or the dinner ladies badgering her to eat. after a few weeks she was vomiting before she even got to the hall. The school were very good and allowed her a table in a hall way near the hall. They gradually moved the table closer to the door and eventually she rejoined her class. She still hates it in there and regularly has to put her fingers in her ears, but she copes and she does eat now. While she was getting used to it we put 3 things in her box and asked her to eat one or two of them, she ate the rest on the way home. It took the preassure off and gave her some choice.
Hope things get better for you.

Its def not the environment thats the problem.Its a small school, she is in year 6 knows everyone,loves the mixing in the dinner hall just is major stubborn over eating. If we give in to her (I know thats a horrible expression but thats what it would be) this we are sure would have a knock on effect at school.ie she didn't want her food, pushed enough so was let off eating, will then have the knock on effect of ok i got my way with that, I don't want to do work today, will push enough til I don't have to do what the staff ask me about that either. We have been there, done that about respect for ALL staff etc, as she behaves for teachers, but saw TA's as a different kettle of fish completely. So its all a matter of balance.

To answer about her intake of food over the day rather than eating more lunch...her whole day eating pattern is pretty much minimal without alot of encouragement/sanctions. Breakfast can be upto an hour and thats a small breakfast, no way we could make it any bigger. Afterschool she wouldn't want anything unless she heard my other children asking for a snack and drink and TBH we can't give her too much then or tea would be a major issue...as it is that can again be upto an hour!!

The school did get her to finish it today, by about 2.15 with "guidance" from the Head,he is going to also keep an eye tomorrow. Part of the problem is her mother, we work hard all week and then mummy has her at weekend and really does just let her do what she wants and eat what she wants, she can't be bothered with the time it takes to get her to eat a meal so just lets her eat what she wants and bins the rest. We therefore have the weekdays to do what we can.

She is scraping onto the bottom of the height/weight charts and cannot be allowed to drop any more calorie intake.

The thing is she will eat these things at home, don't get me wrong its again upto an hour (depending if she wants to get back to a computer/go out) then its finished in no time!!

I had thought of offering to go in and sit with her for a week to break the cycle. I know with me there she wouldn't mess me about and would eat it..maybe slowly but she would. But I don't want to undermine the staff and so as the Head suceeded today I think I will leave it with him for a few days. What fun eh!!!

I have a son (asd too) who also has huge difficulties with food quite probably because his brain doesn't recognise if he is hungry and so he has no desire to eat so I do understand your concerns.
I am probably a lot more laid beck anyway but don't get into battles with ds because there is usually only one winner and it's not me.
Ds has to be allowed some control because otherwise he just vomits to rid his body of anything he has been "persuaded" to eat.
So he doesn't have breakfast at home because he needs to be stress free to travel to school 30 miles away.
School feed him toast when he arrives that he has to eat within 15 minutes to get computer time.
Lunchtime is a selection of snacks kept at school that he chooses. There is usually plenty of chocolate ones because they have high calories and do tempt ds to eat. Again school negotiate the minimum he can eat in order to gain the reward.
Dinner is ready the minute he gets back from school, ds chooses the day before what he wants and he eats alone because he prefers it.
Ds is then allowed unlimited snacks if he chooses although in reality he may have some chocolate once in a while.
We take a look at what his calorie intake has been over the course of the week and if it's not been brilliant we offer a Mcdonalds a couple of times a week to supplement the calories.
Yes his diet isn't ideal but he is a healthy weight (still slim mind) if I went into battle though he would need a feeding tube because he can happily starve.
No advice just letting you see how it works here good luck.

Thanks for all the messages. I have taken all the advice on board.

asdx2 - You def have it harder, as with very strict enforcement dsd will eat, its just a real lot of nagging and constant pushing til she does. We couldn't use the pick what you want, have mcDonalds etc to top up as she would refuse all else until she got all that and would have nothing but that, with very strict handling she will eat, its so draining though being on her case all the time. When I first met her Dad I was very soft with her, 9 months down the line I had to toughen up as she was walking all over me despite being only 5!! It took a good 4 years to really get a grip of her, but now she does not mess me about. I don't find it easy to be that strict and feel really hard sometimes which is not me at all, but she has to be very firmly led or the whole house would be in uproar.

Thanks again, I will keep plodding on, and last night we sat down and I told her how disappointed I was that she spoke to teachers, ta's and the head like she did. Apparantly even the school cook got some grief and dsd doesn't even have school dinners!!She knows she did wrong (for now) I have also told her she will not have her computer at all in an evening if we have a repeat performance and she will go to bed at 8pm not 9pm if she continues to act in the way she has. She hates having an early night and cutting her computer use down is like chopping an arm off. Deep breaths and off to school.

my ASD/adhd child hates and detests the lunch hall. It's too socially and sensory overloading for him. If the staff start on at him to sit nicely, face the table, stop fidgeting etc, he simply doesn't eat. This could be contributing to your daughter's distress.

My ds has never been able to eat in school. He is 6. School have tried forcing him to eat and reprimanding him and making him sit at the side of the lunch hall on a bench.

All this has done has added to his anxieties, he began self injurious behaviour, ended up in hospital and has lost weight as a result and now requires weekly counselling session at CAMHS.

Be careful what you wish for.

You say that your child is dropping centiles, perhaps the forceful approach isnt working.

She is not dropping centiles, she is maintaining because I am forceful. Her Dad told me right at the begining she responds well to strict boundaries and infact works better and is happier with that as she knows where she stands, I tried various other methods along the way, but he is right, thats what works. She does not respond to sticker charts,points towards treats etc etc as she just isn't interested in them.

What would you suggest as an alternative to forceful approach?

This is not a child you can let make all the decisions, she will rule the roost, her eldest sister (not mine or dh's) is an absolute horror, aged 23, been in major trouble with police, will argue with anyone in authority or not, steals from anyone inc family and my dsd has traits of similar personality that we are adamant we will keep a lid on. Its not just an eating thing we have to deal with but a whole package and really not being forceful over food will be just opening a huge can of worms, and not in her best long term interests.

Its def not the social part or over sensory that is the problem, I've seen her in the dinner hall as I used to be a TA at the school. She loves that, she sits with her friends, chats, mixes well with the other children and she just doesn't want to eat, cant see the point of it I guess and so when asked to she will push to not do so.

Thankfully the school now seem to realise she needs to respect people in authority, and are instilling that the food is for her own good not just cos adults want her to eat it. I know her high school she is going to in Sept are strict on these things,both the eating which is on her IEP will be supported, and the respect she must show staff. I have a very good relationship with the high school as my other children go there, and I am sure we will be supported whole heartidly by them. As the head said yesterday there...when its a battle of wills dsd has to know who will win. Her Dad and I agree. If she doesn't learn she will have to respect authority asking her to do things (and maybe at times things she doesn't want to do)then she is really going to struggle in later life, I can't imagine many employers keeping her on if she tells them to get lost if they ask her to do something and on that particular day she doesn't want to.

I know some of you will read this and think we are unneccesarily hard, we should feel sorry for her more etc etc, but the world in general will not always make allowances for her (especially as physically she doesn't look handicapped) and we are doing the best we can to help her now ready for latter life, and so she doesn't go down her sisters path, but honestly we do want whats best for her.

Buttons, I definitely don't think that. I'm a hardass bitch with DS1 a lot of the time out of pure necessity.

And while I said I refuse to battle with him over eating food (I hadn't realised from your original post that your SD's eating problems covered more than at school lunchtimes, I'm afraid) I still refuse to take any bullshit about it. If he is refusing to eat his dinner, he is not allowed to sit at the table with the rest of the family and complain about it - he can only sit with us if he can be polite and reasonable, whether he eats his food or not. He's not allowed to prod, poke and otherwise play with his food - we're very strict about that.

Children like ours need the people they rely on to have high expectations of them. You're doing a good job.

Thanks ouryve - Its hard though isn't it having this high expectation But very neccesary.

You're message heartened me greatly. Thanks.

I am sure you know best what will work for dsd just the same as I know that it wouldn't work with ds to be forceful and persuasive because of his ability to effortlessly vomit.
Ds attends an autism unit so we work closely with school to ensure that ds gets enough calories in him weekly.
He doesn't spot the link between what he eats and Mc D's because we give it as a reward for something else like doing well at school or having a good night or even we decide we fancy a milkshake and offer ds something whilst we are going.
My only suggestion to modify your approach would be to give a time limit as to how long dsd has to eat as ds does at school.
Maybe if she eats sufficient in 45 minutes then she will get computer time. If she eats sufficient in 30 minutes she would get 30 minutes extra. After 45 she would lose her computer time.
Incentives and rewards seem to work better than sanctions here though. Good Luck

Buttons, apologises if i sounded harsh. There is no wrong or right way, just the way that works for you and im certainly in no position to judge!

Personally i give ds choices, but i control the choices, this works for us at home as in he is able to eat something at home, as oppose to the nothing he eats in school.

Good luck

Thanks. Thats along the path we use at home depending on the day, and her mood (and our patience)
Sometimes the temptation to hurry along so
she can get to the computer is enough and she will then get a move on, othertimes its a case of...if you don't get a move on its early to bed...her choice.

Her school have hot dinners inat 12 and packed lunches at 12.30. I have suggested she goes on the early sitting therefore they can hold over her the chance to go and play out after where as currently she plays out first and so the end of lunch marks return to lessons...so why hurry if you hate numeracy anyway!!!

It must be very hard for you, thankfully she doesn't make herself sick, but you should see the faces she can pull at the prospect of some foods put before her...I am sure my cooking can't be that bad

That reply was to asdx2. I need to learn to type faster!!

claw3 - Thanks, I think sometimes I struggle as she will eat something at home fairly easily and then sit in school and arque blacks white that she doesn't eat that at home, I then feel like people will think I am this evil stepmum who forces horrible food on her just cos I can, yet I always try to put in what I think is ok. Little madam!!

Button, being able to eat something one day and then not being able to eat the same thing the next day, was explained to me by OT as having difficulties with processing.

For example a sausage roll would actually taste like a sausage roll one day, the next day he would taste like something quite different and even quite repulsive. (i know sausage rolls are repulsive, probably not the best example!)

Sensory issues are extremely common in ASD and ADHD, has your dd been assessed for sensory difficulties?

You would be quite amazed as some of the things ds worries about with food. He is now refusing all cooked food because 'it has worms in it'. 'Worms' amount to any imperfection or discoloration in food.

You are certainly right about ASD children wanting to control everything in their life. But i suppose when you experience the world very differently to everyone else, the world must be a pretty scary, confusing place. Having a bit of control must make you feel more secure.

Although i certain agree too much control, is just as bad as having too little. Getting the balance right is extremely difficult.

That sounded a bit pompous, i should have added i havent managed to get that balance just right.

Ds has huge sensory issues too and is very rigid in his ways so something as simple as the packaging changing will stop him from being able to eat the contents.
We currently have to send in bottled water because the tap in the unit has been replaced and ds is adamant that the water tastes differently now.
Taxi driver now transports litres of water as well