7 year old refusing to eat or talk

(25 Posts)
notasnowploughoratiger Sat 15-Dec-18 08:21:12

I didn't know where to post this I have a thread in SN children about an EHCP but adding it to that it may have been missed.

Quick version 7 year old boy with suspected by HCP/GP/School but awaiting for official ASD diagnosis and won't be seen until at least Spring - refereed last July.

Started showing severe anxiety/self harming & outbursts last December- June referred to CAMHS seen once & discharged as they felt it was ASD in nature and referred to community ASD team -

Since July continued to be anxious, hit himself against objects, shout out etc, seek to control everything.

School is a whole other thread but yesterday he came home after a tricky day where he had hurt someone else.

Last night rightly or wrongly I said because you did X no minecraft time tomorrow -

About an hour later he stopped speaking, and signalled which I have little attention too but over the evening gave him a cuddle and said come on let's have a cuddle and move on. But remained silent declaring in actions/strange whisper/nodding to questions that he is not going to eat or speak until Monday.

This will be him trying to take back control or similar something I don't understand...

But what if anything do we do? Husband thinks just ignore it, I think phone GP to get some help & this May get him some help as think he needs CAMHS help while we wait for ASD or as well as.

I have said anytime you want to eat or stop this you can.

But any other tips very welcome? I am not worried yet for food as only a few hours but as the day goes on I will feel more stressed.

To not drip feed he has done this once before just the eating, as I would not buy him a magazine - and he would not eat for 8hrs.

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Stuckforthefourthtime Sat 15-Dec-18 08:26:26

That sounds really hard and he sounds very upset. However it's only a short time so far and a day without food - even if he sticks to it - will not harm him. Make sure he has fluids and maybe leave some bits out on the table and walk away so he has an option to eat it without having to be seen to give in?
If he does stick to it, it will be hard but at least give you more ammunition if you go back to the GP on Monday.
Is there any chance you could pay for an earlier private assessment? Maybe ask family to chip in in place of Xmas presents?

Penguinsandreindeer Sat 15-Dec-18 08:35:48

Mine is also awaiting diagnosis. I have always come down hard on any hitting etc so would just ignore his protest. I would leave food he likes around though and you may well find it disappears when you aren't looking. I would cuddle him and explain you love him, you just didn't like the behaviour but you know he made a mistake and won't do it again. Mine always agrees to that.

Mine has never done not eating at home but does it at school but does then eat double at home though still very thin.

littledinaco Sat 15-Dec-18 08:53:59

It sounds like you’re right about him wanting to take back control.

Saying he can’t have minecraft because he did X may not work. Many children with ASD don’t/can’t respond to ‘normal’ parenting techniques you would use with NT children.

Him hitting at school may not be his fault, it could be a reaction to sensory overload, like a flight or fight response so he may be angry and confused you punishing for something that he literally couldn’t help. Your aim is to teach him alternative coping strategies but punishing for the behaviour is unlikely to work. (Personally I would leave school to deal with any behaviour that happens there).

Look up PDA strategies for managing behaviour as these can help with children who feel the need to be in control.

Sensory intergration therapy can help massively. You will probably need to pay privately but if you can see an OT qualified in sensory intergration, they can do an assessment and give you a ‘sensory diet’ (not a good diet but activities) to follow at home and school so you would only pay for one session.

For lots of children with ASD games/tv can help them to regulate their system so the minecraft might be helping him more than you think.

hannahxxoxx Sat 15-Dec-18 09:00:58

I don't know very much about this however I am doing level 3 childcare at college, in our healthy eating class we learnt about how children will go through phases where they will refuse to eat ( not all children ) and our teacher said that it is best to ignore it! She said it will be very hard but children can go up to 6 weeks without food as long as they are hydrated. She also added that hunger will always win, it's in our nature.

hannahxxoxx Sat 15-Dec-18 09:02:34

Best thing to do is ignore it as he could possibly enjoy getting the attention ( may not be correct ) however it seems like he may be trying to manage a situation and getting his own way through not eating.

hannahxxoxx Sat 15-Dec-18 09:04:01

Also try not to show him that it is affecting you as he will try to keep it up.

hazeyjane Sat 15-Dec-18 09:08:21

Um, I think I would question their teaching qualification if they said it was ok for a child to go for 6 weeks without food!

Op - with regards the food thing now, I think make sure he is hydrated and as others have said, leave food out so he can get it, but with no involvement from you, if you see what I mean.

steppemum Sat 15-Dec-18 09:10:24

I agree with pp about minecraft.
For kids with ASD their screen time can be there time when they sort their head space out. It is great for them to calm down, to regain their balance, to help them process.

So after a bad day, contrary to normal NT techniques, the thing to do may be ot put him on mincraft for an hour, and then sit down and talk, by then he may be ready to process.

I would ignore the food thing. I might even verbalise it for him - you have had a bad day and feel out of control. You don't want to eat because you want to be in control of something. I understand.So I will leave this bottle of water and this plate with food/snacks here. Then YOU can decide if you are hungry and YOU can decide when to eat it, or not to eat it.

He may not understand that yet, but it is worth trying.

NotCitrus Sat 15-Dec-18 09:41:05

I agree with steppemum.
From his point of view, he got upset because there was stuff he couldn't cope with at school, he did his best to communicate his distress, and then for no apparent reason he isn't allowed Minecraft which he had looked forward to and felt he understood. My ds and dn in particular (both have ASD, dn more obviously), wouldn't be able to see the connection between 'bad day at school' and 'no Minecraft at home' until a lot older. I know when ds is worried as he restricts his diet further. Leaving some of his staple food near him for when he is ready is the best idea.

littledinaco Sat 15-Dec-18 09:47:20

Agree with steppemum about verbalising it for him. Then don’t mention it again. Don’t make it into a big deal when he does decide to eat either.

Give him other things he can control so he doesn’t feel he needs to use food/talking to take control.

If you can, I would think of a way to get minecraft back for him, either say you have had a think and feel you made a mistake saying he couldn’t go on or find something he has done really well ‘because you haven’t made any fuss and went to bed nicely without complaining you can go on it’.

notasnowploughoratiger Sat 15-Dec-18 09:55:33

Thanks all for all this excellent advice.

He has had some juice so that is good, I have hugged him we are all being normal (as normal as possible) praising for normal things etc - he is acting happy - just not speaking or eating.

After reading this I have backtracked on iPad and said you can go on MC if he wants - he has said no for now...but left that and juice out.

Shall I do routine GP Monday to see if we can access any help quicker?

We could go private but have been told a private diagnosis may not always be accepted & although that would give a diagnosis quicker I don't think it will get him help quicker.

We are awaiting an answer for EHCP we have seen the Ed Psych report that is excellent - describing his need to control everything and how he needs supervision and reduced timetable, so hopefully that will hold some weight.

I still think he needs CAMHS help but the two branches seem horribly separated.

Thanks again to all - good to read & hope this too shall pass.

Fingers crossed he eats and/or starts to speak over the weekend.

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notasnowploughoratiger Sat 15-Dec-18 10:02:45

Ok - amazing thank you all - within seconds of picking up the iPad he said something about villagers and looks more relaxed. Fingers crossed that was the straw that was needed. He is now talking about an update - phew!

I will read about consequences - and any tips welcome, as the iPad is the only thing he cares about so hence why we used it? But will look at other things.

Fingers crossed the food is as easy to come back.

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llangennith Sat 15-Dec-18 10:20:41

I've never believed in stopping a child from watching TV or taking gadgets off then as a way of getting them to behave appropriately. I'd feel a failure if I had to resort to those things, it's just lazy 'quick fix' parenting.
Children have so little control over their lives that they're bound to try to keep what little control they have.
That said, talk to your DS more. Talk about appropriate behaviour, find out what triggers his outbursts, how he feels, what are the likely consequences of undesirable behaviour. Ask him what he would do if he was the parent.

littledinaco Sat 15-Dec-18 10:38:53

If he needs to control everything then PDA strategies will definitely help, so basically removing any demands placed upon him and rewording how you say things, so rather than telling him to brush his teeth/put his shoes on, say ‘do you want to do your teeth upstairs or downstairs?’ ‘What shoes are you wearing?’ or just tell him it’s time to go and he should just put his shoes on without having the ‘demand’ placed on him.

In terms of consequences, many DC with ASD just can’t grasp them/are unable to alter their behaviour even if they do understand them. Some of his ‘bad’ behaviour will be out of his control. You need to work on giving him alternative strategies to use when he feels stressed/has sensory overload. That’s where the OT will come in. So it could be he uses an indoor swing/pull up bar/trampette/spinning toy,etc. It’s important to get him assessed though as DC need to regulate in different ways, so for some spinning, for example, is really good, for others it should be avoided.

A diagnosis private or otherwise won’t necessarily get you help, it should mean the school puts in stratergies but it’s mainly about how you and the school manage things which can be done without a diagnosis.

The sensory OT therapy is not usually available on the NHS so it is definitely worth going privately. It’s something you can actively do with him every day and it does make a massive difference.

Attending a local parent support group can be good as that’s where you will find out what’s available in your area (things you won’t know enen exist) and you can discuss parenting stratergies, etc. There are often ASD and other courses you can go on which can be really useful as usually understanding WHY he behaves in a certain way is they key to solving it.

If he has an iPad, can you set it up so he can text you on it when he doesn’t feel like talking.

notasnowploughoratiger Sat 15-Dec-18 10:51:15

@llangennith I certainly don't feel a failure for trying a consequence & certainly don't see trying a consequence as lazy quick fit parenting. My parenting of this boy is the opposite of lazy.

Your advise to talk to him more, we do talk, give him love and reassurance. In this circumstance it certainly is not as simple as talking more or asking him what the consequences should be or what he would if he was the adult. Yes these type of discussions work with his siblings, but he is completely different & needs completely different styles.

As I said in the OP rightly or wrongly I used the iPad this morning and admittedly it didn't work. I didn't state that is our regular go to for a consequence.

@littledinaco The PDA Society advise I go back to regularly and will look at one of their training days/family coaching. Our county doesn't recognise PDA (hopefully this is a yet) but doesn't mean we can't use the strategies which we try to and have shared with school.

We are awaiting OT, although long waiting list I will explore the private sensory OT therapy.

Thanks all for your help, no eating but now talking it is better.

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littledinaco Sat 15-Dec-18 11:20:59

OP, I agree about too many discussions/asking what he would do as the adult etc would be too much for most 7 year olds with ASD. They often find it incredibly hard/impossible to see things from other people’s perspective so asking him to put himself in the position of the parent and think of what he would/should do in that position would probably be incredibly confusing and stressful for him.

Have you read about selective mutism and stratergies to use for this.

If you’re looking for OTs, you need one with an additional ‘sensory intergration’ (SI) qualification. If you’re on any local ASD Facebook groups you should be able to get recommendations there.

In terms of the PDA diagnosis, if you feel it’s ‘just’ PDA and not ASD with PDA tendencies then it may be worth going privately. If you think it’s ASD too then it probably won’t matter as much as you can explain when needed that he’s got ASD and is demand avoidant, people usually understand and can adapt accordingly.

Remember Christmas can be very overwhelming/difficult for lots of DC with ASD so he could be having a harder time than usual, particularly at school. If possible, I would consider keeping him off for the last few days.

No parent should feel a failure for removing screen time as a consequence of bad behaviour. It’s so hard knowing what behaviour is ASD and what is being ‘naughty’ because he’s 7, DC with SN are badly behaved too just like NT DC! Removing screen time may work sometimes, it’s about figuring out what’s right for that particular situation and adjusting accordingly if you get it wrong.

YetAnotherBeckyMumsnet (MNHQ) Sat 15-Dec-18 13:16:56

Hello OP

At your request, we'll move this thread over to SN children.

MNHQ

steppemum Sat 15-Dec-18 16:04:02

Op - throw out all the strategies recommended for behaviour with NT kids.
The consequence based strategies just don't work, because of the lack of understanding between behaviour and consequence.

Also, often when a kid with ASD is being 'naughty' they are not doing it in the same way as a NT kid, so a NT kid gets cross and hits, and can be told that he cannot hiot when cross. But a kid with ASD gets overwhelemed and hits to get away/control/feel safe/move the other person away. In other words they aren't hitting becuase they are cross, but hitting because they are overwhelemed or frustrated etc.

A temper tantrum because you have been told no, is not an ASD tanturm, for a kid with ASD the tantrum is more like a panic attack becuase they can't cope with the input overload.

notasnowploughoratiger Sat 15-Dec-18 16:57:36

Thanks again to all for posting - bloody emotional day -

I feel like I fighting a fight I can't win & don't know where else to turn.

He looked pretty ill at about 3.30, had not been to a wee and had that ill smell about him, so while he was on the iPad in a low stakes way I managed to get him to take an Ella's pouch which he took, then he bounced back had another one then a crumpet and was back to normal. I asked him why he did it and he just he didn't know but he wanted to.

He is back to his usual self now - but pretty tough day. Hoping that is a rare strategy that does not come out often.

Going to push again for referral for CAMHS and see if GP can speed up Community Peads appointment.

He has PDA & Autism traits along with sensory and severe anxiety- but help seems like a door we are yet to unlock.

For the EHCP he had to see a doctor for the medical bit who was shocked that he was in between systems and not being picked up until 2019, but regardless of that we have been told he will only get help if he self harms so badly that he needs to visit A&E.

Maybe I should have gone today - but hindsight and all that...

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OneInEight Sun 16-Dec-18 07:24:49

The very hardest thing is not to reinforce the undesirable behaviour. We, and school, have fallen into this trap over and over again. ds2 can get extremely controlling over food and drink. The key we have found is to try and stay calm and relaxed, act as if it does not bother with us and give him sufficient time and space to try and explain the problem. The latter is really important. Basically, it's all about trying to reduce the anxiety rather than adding to it.

Sad as it is to say you are unlikely to get much help even if you finally get to see CAMHS and the community paediatrician so you really need to research and try strategies for yourself to find out what works for your son. Certainly, we have got more help from posting on this site than CAMHS were ever able to give us.

BlackeyedGruesome Sun 16-Dec-18 15:26:58

ds osmetimes gets banned from the computer or the phone, occasionally both, but he then canearn them back. he is older and understands more.

when he was younger (Y1) he stopped talking to me for a couple of months. he communicated in grunts, and gestures.

change of teacher and things improved. fuuny as it was not a teacher that I rated earlier, but he was more relaxed in her class.

BlackeyedGruesome Sun 16-Dec-18 15:28:19

screen time relaxes him, and so he has more than nt children.

Penguinsandreindeer Sun 16-Dec-18 16:31:30

Takes 2 years to get diagnosis where we are but school can put in lots of support without one. Think first £6k of support is from school anyway. We've had to argue for support at times as school budgets are cut to the bone but we have had help from specialist teaching service, TA support, no homework consequences, allowed to leave lessons when he's stressed, desk outside, teddies taken in for comfort etc.

Mine will starve at school but got primary to leave plate if biscuits out and they disappear but if someone asked him to eat would say no as can't back down.

notasnowploughoratiger Wed 02-Jan-19 08:37:08

Thanks everyone for their posts, the holidays have helped restore balance & I have read some books I have found useful with different strategies to help parent the defiance in a better way.

We have also decided to not send him back to the school he was at as the anxiety & stress he is under is very much (not 100%) but mostly school related.

We have made contact with a private counselling service to see if paying for some sessions makes a difference-& will await the NHS ship.

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