Autism and Sleeping - Children

[LennyBriscoe]

I have a 6-year-old boy who was diagnosed with Autism and Global Developmental Delay at 3 1/2. We’ve been very grateful for the fact that with the exception of full moons, he’s a very good sleeper however all that seems to have changed.

He settles down well with bedtime stories between 7.30/8.00 but he’s wakening up at various times, today being 1230am. We’ve tried keeping him up a bit longer but it hasn’t helped. His room is in darkness with a blackout blind and thick curtains. His room is warm but he won’t sleep under a quilt or weighted blanket. He’s non-verbal so he can’t tell us why he’s wakening up and unable to get to sleep again.

Our Paediatrician spoke about melatonin before so I’ve put an e-consult into the doctor to try that, however I thought it was good at getting them to sleep but not at keeping them asleep. Has anyone any experience of their wee ones on it?

It’s taking it’s toll on us all now, my husband and I both work and we’re all just exhausted. I’m a born worrier so I’m convinced after having 6 years of a good sleeper that’s it, he’ll never sleep all night again. Any tips would ge gratefully received, thank you.

 

[TinyDancer2602]

Hey, we use melatonin for our daughter. She is 6. We held off for a long time because I saw it as a failure to have to medicate her to get her to sleep. However, long story short, we started in October. Starting dose is 2ml, she takes 3ml. 30 mins before bed. Puts her out like a light. She has never woken through the night when she has had it. It has transformed our evenings. I think her behaviour at school has improved also from having a better nights sleep.

 

[LennyBriscoe]

Hey, we use melatonin for our daughter. She is 6. We held off for a long time because I saw it as a failure to have to medicate her to get her to sleep. However, long story short, we started in October. Starting dose is 2ml, she takes 3ml. 30 mins before bed. Puts her out like a light. She has never woken through the night when she has had it. It has transformed our evenings. I think her behaviour at school has improved also from having a better nights sleep.

Thanks so much for replying. I know how you feel, I never felt smug that he was a good sleeper compared to some of my friends kids but I feel like I’m letting him down now it’s changed.

It’s good to hear your daughter is getting on better at school too, I think just now he’s doing what he can to stay awake but he’s having a cat nap on the bus on the way home which obvs doesn’t help either.

Thanks again

 

[izakyboy]

Hi there. I have a 15year old son. He has been on melatonin since he was 4yrs old. He is non verbal, severe autism & ID. He takes 10ml plus 25ml of phenergen per night. Has done him.no harm. Sleep is essential when you can get it and so unpredictable with autism. Wishing you well x

 

[TwooTwooTwitTwitTwoo]

My son (12) started on Circadin and then swapped to Slenyto (5mg). He stopped taking them for ages due to sensory issues with tablet taking but has recently started taking again and I definitely notice a difference. Not just with his sleep but on his behaviour the next day. Without them he can be wide awake, roaming the house during the early hours which is no fun for anybody. We haven't noticed any side effects from the medication and he hasn't mentioned anything negative.

 

[LennyBriscoe]

Thank you for responding, apologies I’ve just seen them just now! We got the prescription for Melatonin on Thursday and coincidentally, he’s had a good spell of sleeping.

With it being a full moon last night, we snuck one into food (it said to take them on an empty stomach and that they can be dissolved in water but he wouldn’t take a tablet and doesn’t drink enough water to ensure he got it). He fell asleep pretty early for him (6.30) and slept right through to 6am.

He’s back to school after the holidays tomorrow so we can keep an eye on his sleeping pattern and it’s good to know we have it.

Thanks again for responding and apologies for not reading them sooner

 

[TinyDancer2602]

@LennyBriscoe disappointing that they didn’t give you the syrup. Our paediatrician said that they don’t like them to prescribe it as it’s very expensive but that she found it worked better for ASD patients than the stress of a tablet. Wonder could you push back and ask for the syrup?

 

[LennyBriscoe]

@LennyBriscoe disappointing that they didn’t give you the syrup. Our paediatrician said that they don’t like them to prescribe it as it’s very expensive but that she found it worked better for ASD patients than the stress of a tablet. Wonder could you push back and ask for the syrup?

We have a video call with the Paediatrician on May 3rd so I’ll ask her about the syrup. Thanks Tiny!

 

[Octopussle]

My daughter is Autistic & also non-verbal. Her sleeping is awful. I work and days are generally busy but I do try my best in between her attending school to keep her busy so she’s tired come bed time. I find settling her to bed & ‘making’ her sleep only makes it worse, she will wake a few times in the night etc. however if I stay downstairs with her until 8/9pm then give her her bath and have her in my bed she will fall asleep… then I put her in her own bed. I mean it’s HARD. I’m a single mum so I actually don’t worry if she’s happier in my bed whilst she’s small. Anything to keep her happy & for us to both get sleep. I also find she does sleep better in a double bed (the single bed just wasn’t roomy enough for her)… it’s soooo hard. I feel for you immensely. There are days you just cry & feel like giving up. But you will win mama. Try everything & anything. Good luck! X

 

[LennyBriscoe]

My daughter is Autistic & also non-verbal. Her sleeping is awful. I work and days are generally busy but I do try my best in between her attending school to keep her busy so she’s tired come bed time. I find settling her to bed & ‘making’ her sleep only makes it worse, she will wake a few times in the night etc. however if I stay downstairs with her until 8/9pm then give her her bath and have her in my bed she will fall asleep… then I put her in her own bed. I mean it’s HARD. I’m a single mum so I actually don’t worry if she’s happier in my bed whilst she’s small. Anything to keep her happy & for us to both get sleep. I also find she does sleep better in a double bed (the single bed just wasn’t roomy enough for her)… it’s soooo hard. I feel for you immensely. There are days you just cry & feel like giving up. But you will win mama. Try everything & anything. Good luck! X

That sounds so tough, you must struggle to get time for yourself. I think the sleep side of autism is interesting and really unfair - we know that they should be knackered from what they do! My friend’s little boy cab goes days without sleep, my heart breaks for them both.

We got Melatonin via the Paediatrician and it works quickly. I felt bad because my son was back to getting more better nights than worse but we have a video appointment with her on Tuesday and I’ll ask if we should give it to him everyone night.

If anyone’s kids are affected by a full moon - there’s a total lunar eclipse on the 16th.