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.

The CBT can be done at home

Thanks. Do you have any links please?

I'm not in the UK and know the healthcare requirements are different from country to country. Usually, you'll be able to get a referral from your regular doc OR do a search online for a CBT-I (cognitive behavioral therapy for insomnia) therapist who treats peds/kids. Here in the US, CBT is not covered for our healthcare so we would look for a private therapist (and I work in the Sleep Medicine department so it pains me that this is not covered under insurance).

I sympathise- we have this with my autistic 9 year old DD. Going to sleep isn't usually an issue (although it is tonight as she's cried herself to sleep about going back to school next week) but she is wakes up frequently which seems to be related to ASD anxiety.
No amount of asking her to read, watch I pad etc works. She either wants us to sit with her and it takes ages for her to go back to sleep only for her to wake up again a couple of hours later or to cosleep. She's Co slept with my 5 year old DD the last couple of weeks and that has worked well but is far from an ideal solution.
I'm interested to hear all the comments about melatonin actually increasing night wakings. To be honest I haven't really noticed a beneficial difference with it.

Well no melatonin for a few days now but no change in night wakings. In fact he has already woken up once tonight since going to bed (got hot and sweaty and needed sheets changing)

I asked him what happens when he wakes up and he said “I come to find you”. I asked him why he came to find me and what that gave him and he just said “comfort”. Bless him.

Am hoping that once back in the routine of school things will be a bit better?! Maybe wishful thinking!

Mine knows he can make a “bed nest” where he comes and sleeps on the floor next to my bed.

My doctor told me to stay away from melatonin as it can actually makes sleeping issues much worse. There’s no way to know what dose you need, and it’s been proven that the melatonin itself is never accurately dosed, so most of what’s out there is overdosing people.

I have sleep issues myself, and I use herbal remedies. That’s another mixed bag, so it’s up to you on what you feel comfortable researching and trying. White noise also helps. No screens for at least an hour before bed helps the brain settle down too. It could also be down to something else that’s bothering him, maybe something with friends or school.

Has he ever been assessed for ADHD?

He sounds very much like DC with ADHD and the sleep improved no end once on meds.

No, he hasn’t. It was just an ASD assessment he had when he was diagnosed with that. What sort of symptoms does your DC have with ADHD?

He's on the go a lot. Fidgets. Finds it difficult to sit still for any length of time. Sensory issues...cuts labels out of clothes or would rather not wear many. Complains he's never tired at bedtime and would stay up until the early hours. Restricted diet.

The main one is how forgetful he is. Literally in one ear and out the other. Loses stuff. Very disorganised. Struggles to concentrate and often doesn't take stuff in.

He's not autistic. But I believe a lot of people do get a dual diagnosis. The meds are a game changer for many.

Hmmm that doesn’t sound like my DS. His brother maybe…

Last night I ended up on the floor in his room as he was scared after a dream. I really hope this settles once school is back! If not then I don’t know where I go next? We are officially discharged from Paeds even though they prescribe his melatonin. It feels like it must be anxiety related due to its sudden worsening. We do have quite good sleep hygiene already re screens etc but maybe I’ll get the audiobook stuff as PP have suggested as a next step.

Last night when he woke up he asked if there was such a thing as a "sleep doctor" as he thinks he needs one. DP is away so he ended up in bed with me.

He's not great with explaining how he feels so I tried to get him to act it out with one of his soft toys. He basically said that when he wakes up he feels scared, so comes into me to be comforted and ease his anxiety. If he wakes up again, he will come in again. He said it's not as bad at his Dad's (where he is 50% of the time) and said it wasn't as dark in his room at his Dad's house, so we are going to try and get the same clock which has a sort of nightlight on the top. He said there wasn't anything else about his room that scares/worries him.

So, that's next to try. I don't know if the white noise etc would help if he is feeling scared and that's why he comes to get me?

DS is 10, ASD, been on melatonin for two months.

He wasn't going to sleep until 1am and needed me with him. If he was so exhausted he fell asleep before midnight he would wake in the early hours. So he is waking more often now but I think it's because he's going to sleep earlier.

I'm just happy to have something of an evening again atm.

Urgh this has been one of the biggest battles for years for my DS ASD. He has melatonin but wakes a few times a night for the loo. He hates being the only one awake but can manage if there is some noise so usuallly has the radio on low level or the fan all night.

Does he have a couple of nights off the Melatonin a week? Our Psychiatrist says this is needed for best effects. Mine is happy to potter about a bit, get some cereal etc if she wakes now but I co-slept for 14 years so I feel your pain!

We're an autistic family and we take sleep herbs. Most supermarkets and chemists sell them. There's also some sleep teas with the same ingredients, but I always wake up needing a pee because of the extra fluid intake.

Hot milk with Horlicks powder in causes a soporific effect too.

A few lavender drops on a cotton hankie placed on the pillow can help and will promote relaxation.

Try and get him off the melatonin. The more you take it, the less the body will produce it naturally.

Autistic adult here (46). All my life I've had sleep problems, and it's only recently that melatonin has helped - it's basically fixed everything that remained after I sorted the environmental issues.

I have nothing to suggest from an emotional/mental perspective, but...what's his sleep environment like? I have to basically have a room like a coffin - pitch black, no light, no noise...and cool, with exactly the right pair of pillows (one cold and thick, one "normal" but thin), and with a duvet that can stay cool but keep body heat in and the exact right weight for me. It's a right pain in the ass to get replacements, I'll admit, and I have to appreciate the forbearance of my ever-patient OH.

Anyway, the point is that without all of that sorted, I always had very broken sleep, but if everything's just right then I can usually sleep through only waking once around 3am. I have no idea if this will be useful information for you, but...if you've tried everything else then it might be worth experimenting a bit?

Can they be moved onto prolonged release melatonin. Could you ask for that instead. Appreciate this threads august but might help someone else on it.

He is already on the slow release ones

@SleepyJim can they have their dose adjusted?

I'll try and email paeds. Officially we are discharged from the service, the only thing they do is prescribe the medication, so I'm not actually sure what we do if the medication needs changing.

Following as same issues here with 11 year old ASD DD. On 4mg slow release melatonin on prescription but as pp said, wakes up in the night more on melatonin than off, even if it helps her get to sleep.

She's always slept badly so we have a lot of things in place already eg Alexa with lullabies, fan for white noise, weighted blanket, no light pollution etc etc.

The main problem is night waking which is killing me. Wakes 1-2 times a night and screams as she is afraid of the dark which obviously wakes me up. Then I have to get up, then she has some routines that she needs to do before she can go back to sleep. I usually resort to co sleeping when it's bad to avoid this.

Currently waiting for CBT from CAMHs for anxiety and OCD so really hoping it will help.

Does anyone know what medical options are available if melatonin doesn't work?

It's a different approach but CAMHS were happy with it, but my DD (12) relies on physical exhaustion to sleep well (and a weighted blanket). She has to have done 90 mins of real exercise (not walking or team things where she stands at the edge overwhelmed), if she hasn't then about 3x a week we have to run before bed (3-5km).

Running for half and hour takes less than the routine she used to have and she's now sleeping 10 hours straight and coping much better with life in general.

We just kept a log of days she was struggling to get to sleep, days she woke a lot and looked for patterns. It seemed glaringly obvious but not one specialist had suggested increasing exercise - I think they worry it'll put more pressure on us. It has honestly made life much easier, but obviously everyone is different.

Thanks @MyEyesMyThighs keeping a record is a really sensible thing to try. How close to bedtime do you run?

We are away at the moment and he is super anxious tonight (even though we have been to this same place about 5 times before).

I feel your pain OP. My ASD teen has been bad the last couple of months which paired with my youngest going through a sleep regression has been so hard for us.
Here it's related to anxiety so we've increased their anxiety medication temporarily and I'm really hoping we see an improvement soon.
Generally we find a weighted blanket, a decent amount of exercise daily, pitch black bedroom and audio books really help. We have double beds for all our children so if things get desperate we'll co-sleep.
Good luck dealing with it, it is really hard.