4 year old ASD and sleep

[northernmamax]

Totally at the end of my tether now...

My boy is pathway for ASD, I know it'll be years before getting a proper diagnosis.

His sleep is getting worse, the past few months he's had everyone in the house awake all night and all morning including his baby sister who is only 2 and is struggling with her behaviour now as she is not getting enough sleep due to being woken up by meltdowns and noise throughout the night and early hours of the morning.

He goes to bed at 7, but has been waking up at 2:30 am and having the whole house up.

I know it is not his fault but I am only human and I'm so so so tired. I'm a student nurse and I go back on placement this week for my final year, I need to be rested and ready so I can get signed off as a competent nurse but atm I am like the walking dead.

He has had the same bedtime routine since he was 6 months old. Nothing has changed. The past few months have been hell.

Is it time I got in touch with doctors for help or will they not help us with him not having his diagnosis yet? He really does have such a strict bedtime routine that we have followed every night for years so I'm not sure what else I can do. It's making me feel physically ill 😭

Ours was a bit different in that DD would sleep but it took her hours to get there. Are you getting any support at all?

Not really :( feel like we're being passed from pillar to post between CAMHS and GP, daisy chain have been fab just waiting on a call back from them but their waiting list is long.

Me and dad both work shifts so it's just terrible atm. All our family works so it's hard to get that one day of reprieve for him to sleep out.

Feel exhausted with the whole situation at this point!

*I definitely know that feeling. It can be beyond frustrating can't it?"

I'd maybe try posting in the SN Children Section to see if any of the MNers in there can offer any suggestions. My DD uses Melatonin but I think that's just to get them to sleep and not keep them asleep. I could be wrong though

Please, has this gotten better since? My Asd 4 year old has always reliably slept 10/11 hours over night in his own bed and room. Suddenly over the last couple of weeks he’s waking all hours, coming in to our room multiple times, screaming and shouting wanting to go downstairs. I don’t understand it as he’s always loved his sleep and is a complete nightmare to wake for school, I fear he’s going to make himself and all of us ill.

@L0ts that's quite a change

Has anything changed for him recently, like starting school?

@SiouxsieSiouxStiletto Well it started about a month a go when he was poorly and throwing up. I went out to a concert and my partner let him come in to our bed for a few hours. That’s the only thing I can pin point it back to. But even after that he would still sleep through 9 times out of 10 and only wandered in to our room once maybe and then go back to sleep if you walked with him back to his bed, gave him a drink and tucked him in.

He has started school recently too, but he is only doing his usually 3 hours in the mornings as he would have done in nursery. So for him really, not a lot has changed in that respect as he’s luckily still got the exact same teacher too.

Last night was hell on earth honestly. He woke an hour after going to bed and you couldn’t really do anything for him, eventually after 30 mins he went back to sleep. Another hour went by and we’d gone to bed at this point as it was 10pm and he’d wandered in to our room but went back to sleep fine. Come 1am all hell broke loose and he was beside himself.

The only thing that works is to lay with him. You used to be able to lay with him and sneak off but now he realises almost immediately and loses it. Come 4am last night my partner ended up staying in there with him and thankfully the 8 month old slept until 7am and then he took him off me so I could get a couple of hours.

The 4 year old has gone to school but I can’t imagine he’s full of beans. He gets so much exercise 24/7 and oh my goodness do we play, we play all the time. We read books, we do activities etc. We book soft plays, sensory rooms, we see family all the time and go to the park etc. Yesterday we went to soft play for an hour and a half where he didn’t stop. I thought for sure he’d stay passed out last night!!!