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ASD and awful sleeping patterns - help!

(18 Posts)
Shugarlips Sun 14-Nov-10 12:42:11


We are currently going through the process of getting a diagnosis for my DS who we are sure is on the autistic spectrum.

He has never slept a full night in his life. He has no trouble falling asleep and will sleep for about 4 hours solid but then wakes on avergae 5-6 times a night. He comes through to us and we lead him back to his room with no talking, pop him in bed and go back to bed. Then an hour or two later we go through the whole thing again.

When he was younger he would tantrum and have night terrors as well as day terrors - so this is an improvement. He once woke 16 times in a night.

When we ask him why he is waking he says he is bored. He also says he is dreaming about Great Grandma (who he rarely sees) - he has a thing about her wrinkly skin which he asks about when we do see her blush

Is this common in children with ASD? I am worried that the diagnosing process will take a long time (even though we are getting a psycholigist to do observations etc privately)that we might crack up before we are able to access any support.

IndigoBell Sun 14-Nov-10 13:25:18

Sounds like he needs medicine to help with his sleep. I've heard Melatonin (?) recommended on here a lot.

Spinkle Sun 14-Nov-10 13:35:39

It's not unusual. It's not very well known about Autism, but many do not sleep very well. When you've got your diagnosis you can get some Melatonin from the paed. It might work.

It's a killer - we find we go to bed earlier and earlier.

Triggles Sun 14-Nov-10 13:54:13

It sounds rather like it, unfortunately. We have the same issues with DS2, and I don't have a clue the best way to deal with it. I've heard of the medicine to help with sleep, but am loathe to do that. Of course, too much more sleep deprivation and I may come to a different conclusion. grin

DS2 barely makes it to 6:30 most nights - if we try to put him to bed any later, he goes to the other extreme where he can't sleep at all - it's like he just goes past it.

He generally wakes a number of times during the night - sometimes crying and upset, but mostly just awake and unable to get back to sleep. He's usually awake by 5-5:30 am every day. If he wakes up after around 3:30-4:00, he is up for the day and can't get back to sleep (god knows we've tried!).

Last night, for example, he went to bed at 6pm, woke 3-4 times during the evening, then woke at 11pm and was awake until 1:45, then finally fell asleep and woke up at 5am. yawn So I'm living on coffee and diet coke today, as per my usual.

We put his bedtime cd on when he wakes up as sometimes that helps him settle back down to sleep. But not always. Will be watching to see what solutions others have come up with!

Shugarlips Sun 14-Nov-10 14:21:59

It's just good to hear some experiences (I know everyone says that!).

I have read about melatonin - am going to the GP next week about this and I am going to get a bit more assertive. The only involvement our GP has had so far is the referral - I feel so stupid as I have only just started to put all the pieces together about an ASD.

When he had his tonsils out we were given a sedative to help him sleep at night (we got very excited because we gave it to him because of his tonsils and so we felt OK about it iyswim) and it made no difference. I don't think anyone wants to drug their child but I have another child to consider and she is getting fed up with it all too.

We just need to sleep - it's torture sad

ArthurPewty Sun 14-Nov-10 17:00:46

Message withdrawn at poster's request.

sickofsocalledexperts Sun 14-Nov-10 17:10:53

Melatonin. DH and I would have gone raving insane some years ago without it (autistic and hyperactive DS) . We get relatives to bring it back from the US, where it's sold just like a vitamin over the counter.

ArthurPewty Sun 14-Nov-10 17:21:31

Message withdrawn at poster's request.

logi Sun 14-Nov-10 19:12:43

my son is 6 and dx with ASD and he has always been a poor sleeper...he was prescribed melatonin a few months ago and it does help him go to sleep but he still wakes in the night,just lately he has been particuarly bad going at 8pm until 11pm then staying awake until the next evening.

We are going to try and get an appointment with his nurse to see if there is anything else we can try as he is becoming anxious about not being able to sleep.

ommmward Sun 14-Nov-10 19:21:20

We have gone through periods of using melatonin. It has been good for our family.

It can make a big difference to all sleep in the same room - somehow, it's easier to lie quietly in the dark with a child's bed right next to yours rather than squeezing into a child's bed, or lying awake waiting for the next call (and no, it's not normal in the West to room-share with children over the age of six months, but we all lost our entry ticket to normal land some time ago, didn't we?). I can manage a lot more dozing with everyone in the same room.

We have also gone through periods where just one parent was on night duty and the other was in a different room with ear plugs if necessary. Sometimes one or other parent needs that so that someone is functioning the next day (and the exhausted parent grabs a nap?)

ArthurPewty Sun 14-Nov-10 19:46:48

Message withdrawn at poster's request.

ommmward Mon 15-Nov-10 09:23:22

ah yes, I forgot the crucial caveat: ymmv

Shugarlips Mon 15-Nov-10 22:37:42

Spoke to GP today and he told me he can't prescribe anything, only the paed can.

Phoned the paed's secretary and explained the effect that my sons behaviour/sleeping patterns are having on my family and said my 11 year old wants to leave home and is depressed because of her brothers behaviour and the fact he wakes her up every night (a lot) and a community nurse phoned me back this afternoon and is coming to see me on Thursday. (I was told by the paed's secretary this morning that an appointment to see the community nurse would take a few months). When the secretary told me this I said I would go on the cancellation list (thank you MN's) and I guess this is why I am getting seen in three days as opposed to 3 months.

I feel positive for the first time in ages - will report back.... smile

Spinkle Tue 16-Nov-10 07:05:22

Good news!!!grin

post Tue 16-Nov-10 11:56:31

We get sublingual (liquid) melatonin from the US; you can buy it in health food shops there and ds can't take tablets. might be worth thinking about, esp if you know anyoe who's going over there. And it's been very good for our family, esecially ds.

post Tue 16-Nov-10 11:58:46

Ah, just read Leonie's post, maybe not! Gosh, how awful for you, Leonie.
Hope it works out for you, Shugar.

cansu Tue 16-Nov-10 12:05:24

We use melatonin for ds1 and also use a v small amount of vallergan. I think whether the GP will prescribe is down to the individual GP. Ours is very understanding and we have always gone through him rather than paed for this medication. we find the melatonin helps him get to sleep, the vallergan helps him stay asleep until a reasonable time. You need however to be very careful with dose for the vallergan. we only need around 0.75ml for ds1 although on the label it suggests 5ml!

Shugarlips Tue 16-Nov-10 13:30:09

Cansu - that's useful to know about it being the individual choice of the GP. I think I will book an appointment with another GP at the surgery in that case

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