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Son with Autism - Carers UK Forum

Son with Autism

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Hi all,

I have a son with Autism who is 25 years old. He has in the last year moved into his own supported living flat, he is doing well there although there are some areas of concern which we are trying to address, but frustrating. The most difficult problem is that he doesn't go to bed at a good time, sometimes staying up all night. He looks terrible sometimes due to lack of sleep and has put on a lot of weight. We are working with the care providers in trying to address this issue and have come up with the solution of installing CCTV inside the flat (appropriately placed for privacy). Having spent quite a bit already on a system that doesn't work as the range is not far enough, we now feel we don't know what to do next. Just wondering whether anyone is able to advise on this. Look forward to being part of this group.
My son has SLD, now 38, in supported living. I'm having a battle over his weight too, he's put on 6 stone since leaving residential care. Staff have a "can't cook won't cook" attitude. Apparently it was optimistic of me to think they would know how to prepare veg, read a recipe, or even know what a casserole was!!!
Just to ask, but what time do you think would be a 'good' time for him to go to bed/sleep?

I ask this because you know, it's quite common for 25 year olds (ie, teens through twenties) to have a different body clock to 'oldies' (30+!). There was quite a lot of work done on how teenagers would be better off starting school at 10 in the morning, for example.

Body clock issues apart, I also suspect that what is keeping him up and awake is gaming! ie, computer gaming? Do you think this is so?

Again, it's all too common for late night gaming to keep that age group up - sometimes, I think, it's only when they HAVE to get in the morning (work, college) that they actually deign to go to bed by midnight!

Remember, gaming can be very addictive (it's designed to be!), and since late night is a very active time for online gaming, there will be lot of activity on the sites, and a lot of 'community' going on. Because it's addictive, it makes it very difficult to 'stop' (I'm sure we've all experienced the general 'addictiveness' even of the Internet in that we find it hard actually to turn our machinesoff and stop 'browsing')(I know I do!).

Add to that the behavioural patterns that autism may be introducing, and you may find it's just very, very ,very hard for your son to log off.

IF it is online gaming that is keeping him up and active, then you might decide the only way to stop it is by turning off the router - BUT, that may not stop him using his phone? Maybe the phone has to be 'handed in' at a certain time?

If none of the above applies, what do you think is keeping him awake?
Would the weight gain best be tackled by getting your son down to the gym! I appreciate that with autism team sports may not be appropriate, but 'personal exercise' (ie, working out) is very self-focussed, and might appeal to him?

It might be worth investing, if you can, in some sessions with a personal trainer (ideally someone who can tailor their approach to the autistic specialities), to 'set him up' and then generaly oversee progress.

The upside of regular exercise is that it has a two-fold benefit. It both makes you 'food conscious' (as in, you've worked out for an hour - why put the whole lot back on with a single bacon butty!), and also, of course actually burns a lot of calories in the first place (muscle burns more calories than fat does!). It would be a win win.

Food deprivation (especially of 'tasty' junk food) is never very motivating, alas, but exercise can be!
If social interaction is challenging for him, joining a dedicated swimming club might be an option. The downside is the hours are unsocial, because of access to pool times (tend to be early morning, and the evening), but for him the main benefit might be that once in the water you are basically left alone. You just are assigned your lane (according to your speed/ability) and off you go, lapping lengths with no one 'getting' at you!
Hi Mavoureen
Weight gain is a known side effect of many medications used in autism and mental health, is your son on any such thing?
As I understand it, being awake at night is common in those on the spectrum. I'm not sure why, it's usually because the noise distractions of the day aren't around or because they have got so into whatever interest is their pet project that they just dont notice the time.
It's also well known that something connected with autism gives them an everlasting craving for sweet fatty foods.
My relative with aspergers had 2 goes at independent supported living but didn't do so well, weight gain being a major problem. He's now in a communal home with a high staff ratio, seems calmer and keeps better hours but is still struggling with weight.
So no easy answers from me, just huge sympathy
Kr
MrsA
Hello everyone and thank you for your very helpful replies,
Son has a very good care package in place. We think we have all bases covered; he goes to the gym 3 times a week, one of those nights he swims instead of using gym equipment. He also has a trampoline in his garden, he has always liked bouncing and is very physically active overall. He does a lot of physical movements (stimming).
Son is on medication and has been since he was 17 for his challenging behaviour and OCD. Any weight gained was quickly lost once we got him eating more healthily and limiting his snacks etc whilst he was living at home with us. There is very little in his home that would be considered unhealthy food, I cook most of his meals which are then in his freezer to be cooked and served with vegetables, no junk food at all (he actually hates junk food and chips). We found out recently that he was stopping off in town at Greggs (buying cookies/muffins) before getting on his bus to his day centre, and also doing much the same on the journey back home. That is now stopped by simply limiting the money he has to take out for the day. He has a snack box which is kept away from his flat and he has to go and ask if he wants something from it (this is just diet coke = 1 a day, packet of low fat crisps, a couple of jaffa cakes).
The whole not sleeping thing is basically because he is used to being told to go to bed, he now has to decide for himself which is proving very difficult for him, hence staying up all night, going to bed for an hour and then getting up to go to his day centre. The weight gained happened before he knew he could go to Greggs on his own, so we put it down to the lack of sleep. Son doesn't do gaming, he does have a computer, iPod and iPad. We have put a timer on his computer and tv, he does however have an iPad and iPod, (care staff are now going to tell him these will be taken away from him at 11pm each night this week) OCD plays a big part in the nighttime behaviour, he will literally stand for hours straightening up things in his flat.
Son does have a complex learning disability, he likes order and routine. The care staff are very good, but it has taken a few months of this not going to bed to take hold of son and the staff feel powerless to do anything as it would be deemed an infringement of his rights. An MCA has been carried out with son with regards the use of CCTV in his home, so we are now okay to put this system in place, but frustratingly we have tried 3 systems and all have failed at the first hurdle.
So back to the drawing board to find a system which is fail safe, would really appreciate any advice on CCTV systems that are known to be good. The receiver will be approx 150 yards away from his flat, so no great distance.
Thanks again everyone and so sorry this post is so long.
Gosh, that is a very impressive set up! Looks like all the exercise and good diet aspects are well under control!

Yet still the weight gain. I do hope it is not entirely due to the meds, simply because it makes it harder to tackle.

That said, what next to do?

You mention CCTV. What would this be for (sorry to be ignorant). It would monitor him, yes, but can it interact with him? For example, would it be possible to use the system (or even, perhaps, a Skype session on his gizmos?) for YOU to talk to him 'directly' and simply say 'Time for bed now' ....and oversee it 'remotely'?

On the 'rights' issue, would it be possible for him to say, give some kind of 'legal assent' in whatever manner would hold water, to giving staff 'blanket instructions' to 'tell me when it's time for bed and make sure I do it'? That way it might not be an infringement of rights, any more than, say, asking a hotel to give you an early morning wake up call???

Sorry if none of this is either relevant or appropriate or doable - I'm just trying to 'think around' the situation. It sounds like 'everything else' has been so well set up, it seems a shame that there are just these two 'outstanding issues' - bed time and weight gain - to crack.

Wishing you all the very best with, and do hope than an effective solution can be found for this young man - KR Jenny
I think the 'infringement of rights' argument is a bit of a cop out. It could be used against the restricing of computer/tv, money etc and definitely on the cctcv issue. Seems they are picking and choosing when to use it.
Imho people with autism and/or learning disabilities need guidance from others in most areas of their lives, and like the rest of us, that help may decrease with time but some is usually always needed. Imho the infringement of rights can't be practically applied to them.

Have you checked if he is buying food on internet and having it delivered? That's a favourite pastime of my relative who can devour a extra large pizza and sides after supper because "I like it and its easy" :roll:
Quick thought.
Would a written timetable with bed time clearly marked help?
You could agree suitable time with him so he's involved, then all he needs do is follow it, or reminders on his iPad?