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DS1 (ASD) won't go to sleep and is keeping other DCs awake - any ideas please!!

(16 Posts)
Loueytb3 Tue 28-Jan-14 09:42:31

Hoping someone has some ideas as we're all out sad

We've been having tremendous problems getting DS1 who is 6 (ASD) to go to sleep. We've had this problem before and its usually been something do to with bad dreams and after a while it goes away. This time it's been going on for weeks. I can't get any sense out of him about what the problem is. He will get into bed fine but doesn't want you to leave him. When you do, he then screams the house down for several hours which has the effect of making either me or DH go up and down the stairs numerous times to calm him down. It is affecting the other DCs who are not able to get to sleep because of the noise. We have tried letting him go to sleep in our bed (which has worked in the past) but that's not working now. He seems to be afraid of clocks and has recently been fixated about a gro-clock in his room (which he's had for ages). Recently he was getting upset when the stars went and kept turning it off and on again to get the stars back.

Once he's asleep he's out for the night. He occasionally has nightmares but usually can get straight back to sleep again. It seems to be the initial getting to sleep that he is having trouble with.

School have written a social story for him which we've been reading but not yet to any effect. We've tried bribing him with his beloved skylanders and that hasn't worked either. We need to sort it out pronto, not least because on Thursday, DH is having an op on his foot which will mean he is in plaster and non-weight bearing for several weeks and he won't be able to get up and down stairs to deal with him. I am going to be doing everything as it is and I can't deal with this as well.

autumnsmum Tue 28-Jan-14 10:41:45

I don't know your views on medication but my dd2 has autism and she was prescribed melatonin to help her get off to sleep as like you she was disturbing her siblings and dp
And I were exhausted . I think a paediatrician has to describe it

boobybum Tue 28-Jan-14 13:57:04

Hi, I too was going to suggest melatonin. It is used to help children fall asleep rather than stay asleep which sounds like what you need.
Our DS took it for a while and it would knock him out within about 20 minutes.
Melatonin is naturally produced by us but there is evidence to suggest that in some people with autism this mechanism doesn't function correctly and therefore artificial melatonin can help.
We needed a paediatrician to prescribe it as I don't think GPs are allowed.

Loueytb3 Tue 28-Jan-14 15:12:22

I don't have any particular problem with medication although I would rather it was a temporary measure. I didn't realise melatonin was prescribed to help get to sleep – I had assumed it was used to stop children from waking up. Boobybum – how long did your ds take it for? Autumnsmum – I assume your DD is still taking it?

Is it in liquid form?

I'm not sure who we would need to see as DS1 has been discharged from the community paed. However he said I can go back if there are any problems – can he prescribe or would we need a referral to a general paed? GP doesn't always know who to refer to so its usually best if I go in and ask for a specific referral.

hope888 Tue 28-Jan-14 16:57:11

See here

It is fairly highly prescribed in US. Less so in UK, but still given.

Drs will want to know that a behavioural intervention plan has failed first really before giving it.

I would ask for referal to a specialist ASD paed, who will know; or ask for referal to sleep specialist.

Melatonin cycle is triggered by light / low light though is often atypical in asd.

Try making sure light levels are very low, from at around 1 to 2 hours before bed time, this might help trigger a natural response.

Think need to keep away from screens / ipad / tv which can produce enough light to ruin the trigger. If that doesn't work then would try melatonin. It is available OTC in US I think but if not confident best to go through paed.

YOu might want to try more behaviour modification first.

if he feels like he can sleep with you in room, try sitting in a chair a few metres away but close enough that he feels comfort (this might start from right by the bed). then slowly over the course of days / weeks move the chair further away until you are in the doorway and then out. This might not be practical at all, but ideas like it have been known to work, and sometimes can work in days. he learns it is safe and still gains the positive association, and the gradual moving away he learns it is OK.

Sorry if I haven't explained it well. Just trying to dash this off. Good luck.

autumnsmum Tue 28-Jan-14 16:59:22

Dd2 has had a break as I have to get her prescription renewed

boobybum Tue 28-Jan-14 18:08:38

Hello again,

We didn't give DS it for long time, maybe 3-4 months and not every night but only when we knew we were going to be in for a 'fun' night otherwise! He then seemed to outgrow his falling to sleep issue.
We were worried about him (us) becoming dependant on it but this wasn't a problem. Also we always gave him less than we were advised as we found that a smaller dose worked just as well.
We found the effect it had on him a bit scary as he would get really zonked out so quickly (15-20 mins). The paed was insistent that it couldn't work that fast (normally takes around 1 hour) but we are certain that it did.

SallyBear Wed 29-Jan-14 07:30:48

We have had this happen this week. I think that DS had seen a hideous trailer on YouTube or Cineworld about monsters under the bed sort of thing. We opened the curtains, left the door open, a night light and the hall light on. Sat with him and then he went to sleep. It's taken about five days of this. He seemed to be terrified of his striped wallpaper, so I put a Cars posted up and made a big thing about the characters. It seems to have done the trick.

autumnsmum Wed 29-Jan-14 09:53:33

Sally we had a horrid middle of the. Night waking last week with dd2 she said something about caterpillars . Last night she was quite hard to get off to sleep

zzzzz Wed 29-Jan-14 10:06:15

I feel your pain. Mine has been like this for about two weeks. It is making us all very grumpy.

As much daylight as possible during the day helps, as does the usual exercise and food. We medicate with Disney videos in bed when desperate. Sounds awful but better than feeling that desperate anger that he won't sleep.

SallyBear Wed 29-Jan-14 17:56:51

I haven't been back to the chiropractor yet about his sleep. It worked for several years, but the last 6 months - not so much.

Loueytb3 Sun 02-Feb-14 23:13:50

Sorry for the belated reply. We went back to basics and promised to come back up to see him after dinner. He also has a skylander watching over him (he has special magic!) This seems to have stopped the screaming. He's still coming downstairs a couple of times in the evening but its better than keeping everyone up. He then was ill at the end of the week which has helped bizarrely as he is incredibly compliant when he's ill. He is obviously still having nightmares as he came back downstairs tonight after being asleep for a couple of hours but he's gone straight back to sleep. I wish I knew what the nightmares were about because then we could tackle them but he can't explain.

Hope you are getting better nights. Its such a killer

Hellosquiffy Mon 03-Feb-14 10:58:34

Hows he doing at school Louey?

Ds hit a rough spot when he was 6 now nearly 9 (sleep had/has been an issue but not to the extreme as it was back then, very similar to your DS) he developed a fear of the dark, and also became obsessed with time to the point he would not look at a clock.

He had gone into a new class and the CT was telling wonderful scarey for DS stories as part of his English lessons. The CT was also using the clock in the class as a way to support DS to complete his work....this caused him some anxiety as he can't tell the time and was constantly asking the CT how long he had to CT's frustration resulting in him getting in trouble for not 'just using the clock'.

I started sitting with him we call it chat time so he can tell me anything he wants or I can use what he says to get an idea of his day (the majority of the time it will be something small which has confused him at school). We moved his clock from his room, and got him a desk lamp which you can adjust, he shines this towards the other side of the room and it's not too bright. We have never considered medication as we believe his sleepless nights are a result of confusion and anxiety from the day so I can't vouch for anything like that sorry.

FancyAnOlive Mon 03-Feb-14 11:22:00

Both my dds (one with a dx one without) take ages to go to sleep sometimes and they get massively bored and restless just lying there so we listen to some bedtime/mediation cds by Christiane Kerr which seem to help - tbh I often find myself starting to nod off while am listening to them too! We have her bedtime meditations one and the fairy one as dds are into fairies.

devilinside Mon 03-Feb-14 12:05:32

Mine are the same, one with dx one without, both come down multiple times and won't settle, DD eventually does and then DS goes into her room and wakes her. 11pm last night, DS finally went to sleep.

Loueytb3 Mon 03-Feb-14 22:13:15

Hellosquiffy - he's doing well at school. School thought that perhaps it was the step up to Yr2 which was causing anxiety but he is loving it at the moment and even doing his homework without too much of a fuss. (We used to have such battles over it).

I do wonder about the clocks though as that is definitely getting him anxious so I will ask them about that. He can't really tell the time properly yet and I think that may be contributing to his anxiety.

He is now going to sleep after I've been back up to see him, but he wants me to come up after I've eaten my dinner and that would be really late so I'm cheating a bit and telling him I've eaten already. Otherwise he would just stay awake for a lot longer.

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