12 yr old DS Asps: sleep issues and sibling issues

[BlogOnTheTyne]

Two separate issues here really but wondering if anyone can help or share similar experiences? DS2 (one of non identical twins) - who has Asperger's traits - has never been a great sleeper. He didn't sleep through the night till he was about 6 yrs old and since then really only needs/gets 6 to 7 hrs sleep.

He's been in the current pattern now for some years - which is that he wakes regular as clockwork at 4.45am every single day - no matter what time he gets to bed/sleep. However, as he's entered puberty, he often now also wakes in the night around 2.30am and only gets back to sleep after an hour or so.

My room backs onto his and since I had my DCs, I've been acutely tuned in to hearing them/listening out for them at night (DT1 is often sick). So I also wake when he wakes but if this is at 2.30am, I rarely get back to sleep as I need to be up at 5.55am anyway.

At 12, he doesn't come out of his bedroom or anything anymore but just tries to go back to sleep in the middle of the night or regularly reads in bed from 4.45am. However, I worry both about his lack of sleep and my own. Will his sleeping ever get any better or is he never going to need much? He goes to bed around 8.30pm at night and to sleep between 9.15pm and 10.00pm.

A second issue is that his twin (DT1) is about to have a major operation shortly involving at least one day in hospital. Naturally, I'm worrying about this but DT2 is furious - and only that - no concern at all. He is very angry that his routine that day will change as I'll have to get him a taxi to school from the hospital (we need to be at the hospital for 6.45am). There will probably be no other changes to his routine that day and beyond, although this depends on DT1s recovery. However, DT2 is angry that his routine 'might' change and more than anything, that I'll need to give special attention to DT1 for a while as he recovers.

I've explained again and again to DT2 that I love both of them equally and that I'll do everything not to change his routine or neglect his needs. But he's still v angry and keeps going on repetitively about "remember, you have TWO children...don't neglect me". He's threatening to kick the wound that's left after DT1s operation and this makes me very upset and angry.

Whilst I understand that his Asperger's traits make him very self-focused and hating changes of any kind, I've found myself getting angry with him at times, as I'm worried about DT1 and would have wished that DT2 showed a modicum of concern himself, rather than all this anger.

Is it just going to be like this no matter what, because of his Asperger's? Is there anything I could do differently here? Have others experienced similar with their DCs with Asperger's focusing on their own needs even at times of major crisis?

Sometimes I think that if I collapsed myself, he'd be more angry that I wasn't doing everything as usual for him than about me being unconscious!

Thanks for any input.

Yes, ds1 (also non-identical twin) when I had to go into hospital unexpectedly whilst on chemotherapy just moaned about having to be woken up in the middle of the night and absolutely no sympathy for me!
I think actually he just struggles to express his anxiety except by becoming more and more rigid. I would love to know strategies too to improve this.

PolterGoose, he was assessed three times from age 3 I think and every time was deemed to fall just under the full criteria for Asperger's but to have lots of traits. His last assessment was around age 6. Since then, he and nis twin know about these assessments and know he has traits. So it's not a secret from him. As he's now becoming a teenager, lots of those traits are worse in a way and some have lessened. The worsening ones relate to his decrease in friendships with peers and the lessening ones are not having so many 'odd' fixed interests.

The sleep issue may be more my problem then than his. I had about 4.5 hrs sleep last night - which is not unusual as I wake when I hear him wake and if this is at 2am I don't get back to sleep in time before I need to be up anyway. I'm working today from 9am till 3pm, when I do school run and supper and from 6.30 to 7.30pm and I'm already exhausted and so I just wish DT2 didn't wake noisily in the night at all! His NT twin would sleep 10 to 11 hrs a night if he could. If only DT2 would do the same!

I know that DT2 does care about me and was actually in some ways more practically helpful than DT1 when I was last so ill I couldn't get out of bed. But he's very self centred and also in the midst of major negativity about his brother.

It helps to share this stuff on hereand know I'm not alone - so many thanks.

DS has always been a poor sleeper - as a result so am I as I have to have ears on elastic in case he decides to do something dangerous, so you have my sympathies. His paed prescribed melatonin which is good for helping him to get off to sleep but doesn't keep him asleep all night unfortunately.

I would second getting him assessed again, you may be able to access support that would help in future situations like the operation - eg a carer that he is familiar with to stay at home so his routine doesn't have to change

Side stepping the ASD issues, does DTS2 snore, cough in the night? Did he ever get reflux as a baby? If yes, then he may still be getting disturbed sleep due to reflux or obstruction.

Re. getting him assessed again, I think at his age now he'd find this very humiliating and instrusive and he talks about 'not' having Asperger's but 'just got traits', as 'we all have traits of something' - which is kind of what I've said to him since he was v young - ie none of us is without something or other - whether that's anxiety, attentional issues, low moods, ADHD traits etc etc.

At school, staff who don't really know him well will now sometimes refer to him as having Asperger's and so people are aware of his challenges. I think now, myself, that he would tip into the diagnostic range but I'm not sure how having this makred objectively would help him to live his life and in fact I think he'd feel more stigmatised than anything else.

Re. sleeping issues, when we co-slept (which I did with both DTs till they were actually 5) - DT2 did do that sleep apnoea type thing where he'd breathe - have a massive pause in breathing so that I'd worry he wouldn't breathe again - and then restart breathing. The last time we recently shared a room when away at relatives, I noiced that he tossed and turned the entire night every 10 minutes, quite wildly and noisily and I also know that he often sweats profusely at night.

I wonder if this 'adds up' to something? - or might it just be that he's a worrier that stresses about things generally and that this keeps him awake? DT1 has worried me more wiht physical illnesses/ vomiting and various hospital investigations etc - so that's probably distracted me.

DT2 also probably has undiagnosed IBS and used to suffer from stomach cramps at night when a baby/toddler which I think were related to wind and pain in his tummy.

Maybe I need to look into that more.

Blog, then I would get a referral to a respiratory specialist and get a sleep study organised. Does he get many chest infections? That can be an indicator of night time reflux, especially if he starts coughing in his sleep. The other thing to look for with sleep apnoea is moodiness. DD used to get hideous headaches that were caused by too much co2 in her bloodstream. She was also tired and very bad tempered. Of course she's still grumpy but then she's nearly 14! She's also a twin and her twin brother has Aspergers.

Sallybear, he is VERY moody but I thought this was just teenage hormones and he also has occasions when he gets a run of morning migraine headaches that always follow exactly the same pattern and start and end at the same time. Maybe this is sleep apnoea?

However, he doesn't often get ill at all compared to DT1 - and when he's ill, it's usually only for 24 hrs and clears up quickly and he's never had a chest infection - again unlike DT1 who's had his tonsils out, a biposy, regular unexplained vomiting, abdominal migraines, lots of viruses that can easily last for 10 days or more and also chest infections.

Maybe I've 'missed' seeing what's going on in DT2 as a result of worries about his twin. DT2 does need to poo v v regularly - like 3 to 5 times a day if he's at home and is v v 'windy' and used to have explosive diarrhoea in the days when he was young enough for me to monitor that kind of thing. So I assume he has some kind of food intolerance maybe but as his spaple diet is carbs and chocolate orientated foods, it'd be a nightmare to restrian his eating. I did this once wehn he was getting his migraines diagnosed and stopping cheese and choc did nothing at all to change anything.

Poltergoose, the thing about diagnosis is also that sometimes his NT twin has teased him about Asps. and so I've tried to play down the whole thing and talk about which other members of the wider family may also have Asps traits, who might have slight ADD, who's a bit moody etc etc and talked about things being on a continuum - so that some of DT2s old friends may have more of some aspects of Asps (as lots of his now ex-friends have) and others different aspects of it.

However, I know exactly what you mean then about the usefulness of diagnosis and how this could also help him in higher education and beyond. In fact that's the main reason why I have considered this at times.

He doesn't easily fit a typical Asps profile, although every child with asps is different and unique, I know - but his friends with Asps - or traits - were all genius level at matsh/science/engineering, loved lego, had fewere social skills than DT2 and were v introverted and DT2 is hopeless at maths/science stuff shines in verbal/literacy skills, is an opinionated and mouthy person (hence losing his quieter friends, sadly) and hates anything involving spatial/numerical thinking.

Now I know that's a v crude polarisation of things and loads and load sof children with Asperger's may be more similar to DT2 than to his friends. I think it's just that because of his greater social skills and the fact that his strengths were in the verbal/literacy side rather than matsh/science side, he didn't fit a usual Asps. profile exactly. But he did have loads of obsessions interests, Thomas the Tank Engine, model railway sets and magazines, drawing bridges/ cathedrals in detail (only when younger), preference for adult company and confusion about his NT peers, rigid thinking, obsessional behaviour and thoughts, little eye contact (whcihw as what prompted me to get his first assessment), speech issues (though he now does a lot of public debating....

TBH, I'd actually be v interested in getting him assessed again and much less afraid this time as the first 3 times, I was terrified he'd get a diagnosis and wonder if I unconsciously played down the parent questionnaire answers....I also have and had some odd family members, who retrospectively may have Asps or traits but I've never been sure how much is personality type and how much is Asperger's.

PolterGoose, that's really interesting. I've not met any other child who manifests Asperger's like DT2 but your son sounds v v similar. I've often wondered about the interaction between having inborn qualities of being articulate and literate - in the genetics of the family - and whether that then influences the way Asperger's might be expressed.

In the wider family, we don't really have mathematicians (although some family are stronger than others in that way) but we have lots of people doing 'people focused' careers and some doing 'factual' but not maths/science careers and lots of strengths in the arts.

You know how Asperger's can manifest somewhat differently in girls - well I wonder if there's a kind of similar process going on in children who come not from maths/science/engineering genetic pools but from arts/literacy/people focused genetics? Just thinking aloud here and of course my theory might be shot down immediately by others' experiences - but I've just tried to work out how DT2 can have Asperger's/traits and yet be as bad as I am at things like maths/ spatial skills.

If some biology strongly weights towards the arts and indeed towards 'people skills' then perhaps that shapes the way Asperger's then manifests in a child with that genetic background?

That would somewhat knock the idea that Asperger's is 'extreme male brain' as has been purported - because I can fully see all kinds of Asperger's traits in DT2 that in no way fit a caricature of 'extreme male' but are found across lots fo people with Asperger's...

Think I'm starting to ramble now and got to attend to DCs and may be talking complete nonsense. It's just interesting to speculate about all this and wonder then how best to help DT2.

So realistically you are looking at two issues. Sleep and ASD. The sleep and ASD are often linked, but I am leaning towards possible sleep apnoea. If you can see someone in Respiratory get a sleep study done, and then look at what the results point to. They may prescribe CPAP Nasal mask at night and you will see an improvement in mood and also headaches. This may in turn start to help him deal with his Aspie traits as he won't be as tired or overly sensitive. Though I do think that you need to get him assessed. The difference it's made to my DS having a diagnosis has been huge.

Really interesting discussion. Have met many parents of children with ASD who have sleep problems. Near us we have children's sleep clinic at St Thomas. V good, pays to be persistent. My own daughter helped by the CF/GF diet. We've followed since small ,initially to deal with her chronic diarrhea. But it has helped with sleep and behavior. Lapses lead to difficulty sleeping, and early waking with manic giggling. Luke Jackson, has written an insiders guide on how diet helped him and his 2 brothers. Really helpful to hear his voice as our daughter can't tell us about how she felt/ feels.

I agree with you Polter to a degree about the empathy. DS1 - Aspergers has fairly good empathy. DS4 - non verbal Autism doesn't get empathy.