To ask for advice about ASD teen sleep issues

[SleepyJim]

My DS is 14, has ASD and takes melatonin at night (prescribed by the paediatrician) to help him get to sleep. This has worked pretty well over the past few years, and getting to sleep is no longer an issue.

He has always also woken at night, maybe once or twice a week will get up once in the night to get me. However, over the last couple of months he has been waking frequently at night, and gets up out of bed to get me each time. At the moment it’s between 2-4 times per night, last night it was 5 times. It’s worse than when he was a baby!!

The reasons vary - too hot, too cold, bad dream, scared, worried about something, can’t get a bad thought out of his mind, can’t sleep etc etc. He is anxious anyway, so I think waking up in the night also makes him feel anxious.

We were in holiday last week and he was getting up so often I ended up sleeping in his room just to get some sleep (he was saying he felt scared being in the holiday villa).

I have asked him just to close his eyes and go back to sleep when he wakes up but this request seems to fall on deaf ears, or he just forgets, probably too caught up in his own anxiety to be able to remember what we have talked about.

Has anyone got any suggestions? Because he is a sensitive, autistic teen just telling him to stop doing it or use of threats won’t work with him, I think they will just make him more anxious. However I’m bloody knackered and I don’t know how much more of this I can take.

Hmm double beds sound a good idea - certainly more appealing than having to get the sofa cushions out onto the floor! We are trying to be stricter with what time screens go off and more exercise during the day. At home he has blackout curtains (but also feels scared when he wakes up so doesn’t like the room being too dark). We do have a weighted blanket but I thought they weren’t meant to sleep under them?

Hi
I have an older dd (asd, adhd) who has always had sleep issues. She used to be on melatonin from the camhs team with limited success but their consistent advice was to try and get her up and outside every morning, no sunglasses, to get the sunlight on her retinas. This helps the body make all the right hormones ( serotonin, tryptophan, melatonin ) to aid natural sleep. Easier said than done, the alternative is a sad lamp in the house to mimic natural light, good in winter.
They also advised Epsom salts in a bath at night, magnesium will help to relax.
Evening out blood glucose levels is another area you could look in to. My dd is a bugger for eating nothing but carbs but protein and good fats at every meal stops the sugar crashes and lessons anxiety I find.
It's got easier for me as she's got older as she doesn't wake me anymore but it's still something of an issue.
You might know all this already, I fully appreciate how hard it is.

Double beds are an absolute godsend, it made reading bedtimes stories, dealing with nightmares, illnesses and all the rest of it so much easier. We didn't set out to give them doubles but our eldest (ASD) was a terrible sleeper almost from the moment they were born and we found they slept much better on our spare futon than in the crib so we just kept them in a double and put middle in one too when she was old enough. Youngest will get one too but currently mainly sleeps with us or in his crib.
As far as I'm aware sleeping under a weighted blanket is fine unless you have breathing issues.
If he's scared of the dark when he wakes would a low level night light help? It would also enable him to load up audiobooks without turning a big light on.

Yes we have a low level night light but might need to move it as I think at the moment it's being hidden by the end of his bed and it doesn't give as much light as it could if we used a different socket.

Got woken up every 2 hours last night. Feel broken. Can’t imagine how he feels.

Oh dear OP this sounds tough and actually quite unusual. What dose and preparation of melatonin is he taking ? I also echo what PP said about getting out in the light (easier said that done at this time of year), I hadn't heard of epsom salts but they help me so might well help OP's son.

I’d go and speak to the GP, if the pead team haven’t been any help, perhaps they can refer you somewhere. It sounds exhausting OP so if you can get medical help that would be good

My ASD DD used to take melatonin but we have recently stopped as she was having very vivid scary dreams and waking up more frequently. Sleep is still a huge issue and I'm going to look at advice here, but without the melatonin medication, night times are a bit calmer.

He’s not taking the melatonin at the moment in a hope to improve sleep but alas that is not working.

We are trying to tire him out - yesterday we had a walk in the morning and he played a football match in the afternoon so he was outside for 3 hours.

He is anxious about school, prone to bad dreams, scared of the dark but we are struggling to find a decent night light because everything casts shadows that is making the anxiety worse!

He spends 50% of his time at his dad's house where according to his dad he sleeps better than here (although his dad is notorious for not be entirely honest, especially if it’s around comparisons of how he is at each house). So if he sleeps better there than here, it’s something about being here?

DS 16 asd, anxiety and sld, sleep has always been hit and miss but became horrific over summer holidays- couldn’t sleep and night time waking.
spoke with paediatrician and he suggested a week off the melatonin as a reset. When he went back on it, it worked for a few days and then didn’t
The next suggestion from paediatrician, which has been working for the last week, has been to give the melatonin 30-45 mins later than we were doing, and to be in bed within 10 mins of taking it,and so far success - asleep within an hour of taking it and sleeping through
hope something works you you and your son, as it’s something that effects the whole household

Thanks @SlipperySlope99 perhaps we will give the melatonin another try in the way you have described. What dose does your DS take and is it slow release?

Have called and left a message for community Paeds - apparently he is an open case (hooray - I thought he had been diagnosed and then discharged so that’s great that he’s still under their team) so they will see if someone can call me back.

It’s Slentyo 5mg- slow release

Thanks that’s helpful to know

Just re-reading this thread and it's reassuring to know that it's not just me that's going through this.
Sometimes I feel so utterly exhausted due to DD's sleep issues. She's on 2mg of melatonin but to be honest I struggle to see much difference whether she takes it or not.
She didn't like being on her own and is scared of the dark, we moved her into her sisters room into bunk beds which worked for awhile but now she is on a camp bed because she was scared because she couldn't see her sister.
Now that's stopped working largely and she's awake half the night which is impacting DD2 as she is scared and just screams and screams.
When it's especially bad we co sleep but I struggle with this as she wants to touch me all night and I hate to be touched when I'm asleep
She has a night lamp, a weighted blanket, access to lots of books, sleep mask. Nothing works!
I'm not sure how she manages to function tbh I feel like I'm barely surviving sometimes!

Oh gosh that sounds so hard, I’m sorry that you are struggling too. How old is your DD?

DS was up hourly last night between 2 and 7.

My DD is 9.
I'm sorry that hear you had a bad night last night. That's very similar to in my house. It's so difficult isn't it to keep going. I also find that I'm just so irritable with the lack of sleep.
I gave in last night and DD came into our bed. It was DH's turn to sleep with her whilst I went in the spare room so thankfully I am not feeling too bad today.