12 yr old DS 'unaware' of bodily needs

[BlogOnTheTyne]

Is this unusual in a child so old? DS1 aged 12 has always been out of touch with his basic bodily needs - ie he never knows he's feeling sick until he vomits all over; he doesn't tune in to needing a wee and will go all day at school without one, come home looking ill and feeling sick and only when prompted, realises he's desperate to wee and in pain.

He'll go a few days without a poo and feel v sick and get a migraine and again, only when I suggest he may need to 'go', does he realise he DID need to.

He doesn't realise he's hungry until he's ravenous and again this can trigger migraines. If he's too hot or too cold, he won't respond to this unless I tell him to take off a jumper or put one on.

Generally, he's always seemed out of touch with his body and this has led to problems, most recently a year ago on a school camp, when he didn't wee except twice in 2 days, walked a whole day's hike without socks on, ate virtually nothing, was hallucinating/dizzy through lack of sleep/food water.

So the implications for his future do worry me, as I'm not alwasy going to be there to 'tune in' to his needs myself. In RL people have said, "Oh he'll soon leanr if you just leave him to it" but he doesn't and he hasn't.

He has a non-ID twin with Asperger's and part of that condition is that his DT is able to withstand pain without reacting etc etc but DS1 is neurotypical and I thought that most children by the time they're 12 - or even by the time they're about 6 or 7 - will know in advance if they feel sick or if they need the loo etc.

Has anyone come across this before? Is it within the 'normal' range for 12 yr olds and is there anything I can do about it? It seems too 'trivial' to go and talk to the GP about it and this would hugely embarass DS1 anyway.

hmm, am not medically trained in any way so i recommend you visit your gp to discuss your concerns. it does seem odd to me. Maybe go and have a chat with GP without DS1 going - then you can decide another visit depending on what GP says?

Both my DC were able to know in advance of when they needed a wee/poo and also that they felt sick (and the difference between when they felt sick but didn't actually think they would be and when they felt sick and thought they would be IFSWIM)when they were about 3 tbh.

They are 5 and 6 now and definitely know when they are hot/cold/hungry/full/need toilet/going to be sick etc

Hopfully your GP will be able to give you some answers.

I noticed this thread because my ds2, who has Asperger's is exactly like that in some aspects and he is 11.
However, I see that it is an NT child in question.
I wonder whether it is a learnt response to a lot of situations; I know that for ds2 we have reminded him so often that even if he's apart from us for a few days he is still subconsciously expecting to be reminded. So, although you think he will never learn to manage, it is partly due to knowing deep down that you will pick up the pieces for him. Funnily enough, ds2 has been fine on camps, and we haven't had the same issues that sometimes ds1 has presented, like refusing to go to the loo in the night because he thought he wasn't allowed to leave the tent, that sort of thing, and being desperate. Whereas Ds2, with ASD will hang on for a while, and then just say I need the Loo, without caring what anyone thinks...

For example, we have a 13 year old who still expects us to tell him to have a shower. We would have to go cold turkey and just leave him to work out that after 5 days it really might be quite nice to have a wash, but just expecting him to notice he smells hasn't so far worked because we don't have the nerve...
Another NT child I know of 14 is one of those children who forgets to eat, has incredibly low blood sugar and crashes emotionally and physically, and his mother had to remind teachers on school trips (aged 14) to make him eat regular snacks. He would just forget, so absorbed would he be in the whole experience of travelling etc.

Ds1 (who incidentally is just in process of being diagnosed dyspraxic, though otherwise NT) loves structures, so I think, habits are very important to him, and adults reinforcing those habits. So maybe the answer is to get him used to reminding himself, ifysim. So he has an instinct to keep looking for snacks and loos in a timed sort of way, and sets up his own system, rather than just responding to needs as and when. What I am trying to say, in a rather longwinded way is that ds1 is never going to be someone who thinks in advance about his needs, but at the same time he is sufficiently aware of authority to be wary of putting his needs forward at the last minute, so it has to be something that he learns is a system: ie: lunch is my natural toilet break, I need a snack at 4pm, I drink water when I wake up, and I have an apple at bedtime. That works. He is fine now really. We haven't had any more of these desperate hanging on incidents! Loads of drinks at breakfast, and fruit and veg generally stop the hanging on tendency imho too!

From a pyschological point of view, I wonder whether ds1 is just trying to hold things together on a school trip and keeping control over his appetite and other physical needs is a sign of this - like a sort of "keeping strong" and "then he'll be alright" emotion. Maybe he just needs to relax before he goes on these trips and ones of the ways you could do that is to remind him you have every confidence that he will manage, and be able to look after himself, and that is not going to be a tremendous feat of endurance, but a relaxing time. I know I often tie myself in knots before my children go off on camping trips, and at the last minute say all sorts of stuff to them - like "don't forget x y and z" - maybe that doesn't help and they blank it all but get left with a sort of vague feeling of anxiety/stoical grit...

My son (NT brother to autistic little 'un) is a bit like this. Not to the same extent as your son, he's now nearly eleven and has mostly grown out of it except that toilet visits are still nearly always a matter of tearing urgency. I think of it as a little neurological "oddness" that comes with the territory but it must be upsetting if it's as pervasive as it seems to be with your son. I agree with the suggestion that he probably needs a programme to try and head off these problems as he may never be properly "in-touch" with his own body's promptings

Are you sure he's NT? having a twin with Aspergers would be a huge red flag for me. Has he been properly assessed? Most of my family are on the spectrum and I know how vast and varied it can be

Thanks for the feedback. DT1 has some cognitive processing difficulties and attentional issues - v miled - that are a bit like some children with Asperger's. So it is possible that he has a 'touch' of it too. He's always been so extremely socially skilled with his peers, compared to DT2 that I don't really think of him as anything other than NT by comparison.

I've talked to him now about doing things at certain times - and ensuring he gets at least one wee at school but he promises, promises - and then doesn't follow through and he's well past the age when I can get the school involved.

I had to stop him continuing with the school club that went on camping trips as he barely coped with 3 nights away and from then, they stared to do 10 nights away. The way it worked was they did expect the children to be extremely self-reliant and woulnd't in any way be keeping an eye on who hadn't eaten or drunk anything, who hadn't used the hole in the gound that served as loo etc etc and I just felt he'd really not manage for even longer periods, sadly.

Probably the worst thing is how he just never ever knows if he's heading towards a migraine or feels sick, even though I'm now obsessively tuned in myslef to behavioural and physical sygnals from him and can mostly predict this. However, 99% of the time when I ask if he feels ill or if he has a tiny headache, for his entire life, he deines it completely and utterly - only to throw up everywhere a few minutes later or to collapse in bed with a severe headache.

As he comits roughly once every 3 weeks for a variety of reasons anyway, including migraine, hasn't pooed, gets a virus, car sick, overeats at one meal, sees/hears something 'gross', this makes life very difficult.

Every single time, I'll draw his attention afterwards to how he was absolutely sure he was totally OK and then clearly wasn't and clearly - to me - was already showing signs of this - but it makes no difference to him. I feel as if I'm still having to monitor a non-verbal baby and have no idea how he'll cope when he goes to university.

At w/es I still constantly find myself saying to him, "You HAVE to get a wee before lunch even if you don't think you want one" or "are you hungry, you're getting really hyper and noisy now?" or "do you think you might need a poo, as you've not had one for 3 days and you look a bit sick?" I really shouldn't have to do this with a 12 yr old and I don't understand why his twin (non-identical by the way) with Asperger's, is better than him at knowing himself...although, now I think about it, his twin is far far more rarely sick anyway. So maybe it's just that he has a stronger physical constitution generally.

I think I'll just have to keep plugging away at instructing him to do certain things at certain times or to at least try to tune in to bodily symptoms so he can reach a loo before he throws up.

So is this most likely then to be a 'touch of Asperger's' rather than any other 'named' condition?

Have you re-posted this in Special Needs, you might get all sorts of interesting ideas there? TBH I would back off completely with the warnings and worryings when he's at home and start biting your tongue because it sounds as if he is beginning to rely on you in a rather negative way to give him cues for everything, and is possibly waiting till he gets home when the cues start again. And then he is to some extent using it a as a further reason to distance himself from the problem. I don't think it is necessarily Asperger's, it is just a mindset where he is controlling himself to the nth degree, and has forgotten what the physical sensations of needing to go the loo, or feeling hungry and thirsty are. You could have a non-confrontational talk with him and say you want to try a new routine, where you don't hassle him, but he has to use the loo every three hours, and have a drink and snack every two hours. Is the doctor who sees him for the migraines discuss this with him maybe?
I wonder whether these out of the blue cues are just confusing matters - he's resisting because he can tell you are getting increasingly exasperated, just because he wants to be in charge. He needs to be in charge, but in a positive way. When your body gets used to hanging on a for a long time, it's actually very bad for all the muscles that control appetites and urges, and it is possible that he is losing sensation for that reason. Read toilet training board on Mnsnet and it gives you some indication of the way things get out synch, albeit for much younger children. And mostly it is pyschological issues which turn into physical ones.

I wouldn't reason with him either, that just sets you up for arguments. I think at that age, you don't really want your mother fussing over you, just offering you simple solutions, like drink/food, loo break. No comment, just handing over the solution.
It is a bit of vicious circle if you keep asking him whether he needs things, because at that age the answer is always going to be no, just because they perceive it as "nagging". We don't even say to ds2 (the ASD one) whether he needs to go the loo, we just say, Go. And so far crossed fingers, things have improved there, when they were pretty bad for a while.