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.

We found with melatonin although it helped getting to sleep it greatly increase waking up in the night. Our paediatrician said this is the most common side effect.

Oh that’s interesting. Did you stop the melatonin?

If it were me and my son, same age and diagnosis, I’d either squeeze in his bed with him or set up a bed in his room. If there’s one thing that I can’t cope with its lack of sleep!

Have you tried weighted blanket?
Can you access CBT for insomnia? Perhaps ask paediatrician about this?
or just CBT for anxiety

I think the key is getting him to feel less anxious when he wakes. Are there things that help? My DS (now 17) used to listen ti audiobooks to get to sleep and if he woke he’d put them back on. He likes ASMR now. I’m convinced it’s a sensory thing as he is really affected by sound. Anything like that that could help?

My son (15 years) has similar sleep issues. He has ASD and OCD. We have found that Rescue Remedy sleep capsules and a weighted blanket help to some degree. The school holidays are the worst for him as he likes routine. I just give him the reassurance he needs. It’s tiring and frustrating but he has been very depressed in the past so I just do whatever I can to make life more bearable for him.

I often get him to read something funny and easy to read if he can’t sleep (like Asterix or TinTin). When he is anxious he can’t concentrate on a proper book but those comic type books can distract him and help
him relax.

I’m watching with interest as we are having the same problem after returning from a long haul destination last week. I have restarted melatonin a he has not needed it for a few months. As you say it is anxiety related but no amount of reassurance will help or removal of devices. It’s very frustrating. The reading of comics is a good idea and we have tried an audio book to settle but once he gets in the anxiety reassurance cycle it’s very hard to break.

I coslept

I did find reading to him tonight helped and I haven’t done that for a long time. He then wanted to continue questions when I finished, so I said I need to get ready for bed and will be back in 10. He’s now asleep so hopefully that will continue!!

It is understandable that his ability to settle would be disrupted by staying in a new place on holiday, new situations and transitions are hard. Now that he is back home try to implement a routine that helps him self-settle as much as possible. I find with my kids that if they get used to me being there to settle them it becomes something they need every time.

Lo-fi Girl

https://www.youtube.com/live/rUxyKA_-grg?si=h7tuVDeolzb22S3Y

Or Get Sleepy Stories are good

These work for my DD who is the same age and autistic. It helps to distract her brain from generating anxious thoughts (or so she tells me).

DS who is also autistic but younger has pre-recorded stories read by us that he likes on a Yoto player. He also reads funny comic type books to himself like the Treehouse Series or Captain Underpants. DD also still likes reading the Treehouse series sometimes.

With both of them I try not to engage in much conversation if they wake in the night or after bedtime as once they start talking it is hard to get them to re settle as it wakes them up too much. They also both have a brighter nightlight to reduce them getting scared on waking (the light in the bathroom/hallway is always on too).

I give DS an ice pack in a pillowcase (the refreezable ones for sports injuries) if it is a hot night or a hot water bottle if it is a cold night then he can move it around in his bed as he wishes at night.

All kids also all have non-spill water bottles so if they get thirsty they can drink without waking me at night.

It is hard.

In the end I found when we had this that dealing with it like a baby waking helped. Unconditional reassurance, sitting with him in the room until he was asleep. The waking then stopped within 6 weeks. Mine was not on melatonin but waking due to ASD related anxiety.

Definitely CBT (cognitive behavioral therapy) for the insomnia! Has a much higher success rate than melatonin (which does alleviate sleep onset but significantly increases nighttime awakenings).

Hi @SleepyJim ASD DS often has sleep trouble. One key is to get up at the same time everyday. DS also meditates daily and practices mindfulness. The little things add up.

@SleepyJim

Yes we decided that sleeping through was more important for us than getting to sleep earlier. We then moved onto a different sheep medication (phenergen) which works better for us.

What dosage of melatonin is he on?
It might need increasing if he has grown.

Thanks for all of the replies. I didn't know that melatonin caused an increase in night wakings so thanks for letting me know about that. He has been on it for a while though without things being this bad, but he has gone without it tonight so will give that a try for a few days and see if it makes a difference.

Also didn't think about dosage @TikTokCat - he is on 4mg which is the same dose he has always been on but he is now taller and heavier than me so I guess that might not be the right dose for him now anyway?

Thanks for the recommendations for audiobooks - for those that use this do they have headphones or just play it out loud in some way? I'll have a look into that too.

He likes the beano and has been known to occasionally read them on the odd occasion he has woken up really early (5am) and can't get back to sleep - I'll see if I can add some Tintin to the mix as I think he's read all his beano annuals loads of times by now.

I am trying to stay patient and reassure him - not sure I could sit up and wait for him to get back to sleep as it can take him ages, but I guess if it resolves the problem then it's short term pain for a longer term gain. Even when I was asleep next to him in the holiday villa he would wake me up when he woke up - it wasn't enough for me to just be next to him, he still wanted me to wake up and interact with him. At the moment he gets up and comes into my room (opposite his), I take him back into his room, tuck him back in, kiss him goodnight again and come back to bed myself. When he woke up the first time last night I think he was actually asleep when his head hit the pillow again as he didn't even respond to me! That's not the norm, though.

Re the CBT for anxiety, is this something that you have worked through at home with your child or got private counselling for?

Can you teach him to recreate his bedtime routine to resettle. My son has an audio book which he restarts if he wakes up. Its on alexa, so it gradually reduces volume over an hour. He has a smart light too, which if he says 'alexa, bedtime' starts the story and dims the light and he can sort his covers.

Oh that's very clever. My son doesn't trust Alexa at all and is forever turning the one in the kitchen off so wouldn't entertain one being in his room but I wonder if we can get something similar.

He has a nightlight already but a dimmer switch on his main light might be good as it's pretty bright in there right before bed.

My dd takes between 4 and 6mg.

Our DS is 17 and won't take his melatonin, so he is awake ALL night. Don't know what to suggest OP?

Oh gosh @fizzypop100 rhat sounds awful for you all. Does he sleep during the day?

My son is 12 and on 8mg modified release. The audio book and dimming light is a great idea.

I’ll try and email the Paeds team to ask about the dosage of melatonin. He didn’t take it last night and woke up twice. Perhaps a small improvement? It had been 3 times the night before. Sadly we all got rudely awakened by the fire alarm running out of battery this morning so we have all woken up in a slight grump!

A colleague of mine has an autistic 12 year old and she said when the night wakings increase she actually halves his melatonin dosage. No idea what the science is but she said it resets him and they build back up to 5mgs over the course of a few weeks.

I have a 9 year old with adhd and he's on melatonin too. He has an Alexa and listens to audiobooks. If he wakes up in the night he almost never goes back to sleep so at least with the audio books he's not bored.

Interesting! I'll see what happens with a few more nights of no melatonin and go from there I think.