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ASD and sleep

7 replies

purplerain44 · 22/07/2019 23:34

My DD6 has recently been referred for an ASD assessment, which I've been told will take at least 18 months to come through. She appears NT and we only realised the extent of her differences when she had a bout of extreme OCD and anxiety at Christmas. The school stepped in after we went to the GP and got a CAMHs referral, and they have helped with getting her into school/ playground/ assemblies etc. and she seems completely back to normal.

At home, it is different though, with emotional meltdowns, never listening to us, no concept of time so we're often late and mainly, her sleep. She won't let us go downstairs, so one of us has to sit outside her bedroom until she's asleep, which is usually 10.30pm. If we go downstairs, she follows us crying and screaming. She says she's scared - but cannot say of what. Sometimes she says zombies, but I think she's making it up. My DH says absolutely no medication, but I feel like I have no life - we have to eat our dinner on the stairs. We can't really go out. We don't see each other. In the middle of the night, she comes into our bed - we are both asleep and every single morning we wake up with her there. This part is manageable, but now she's being asked to go for sleepovers at her cousins and best friend, to which she can't go.

And we have had no practical help from CAMHs who haven't sent the referral questionnaire to the school yet (although the school now don't see any of this, so I fear it may skew the findings).

Does anyone have any experience of this? what can she be afraid of? She wants to stop being scared herself. how can we help her? We feel so stuck.

Thanks

OP posts:
Goonergirl14 · 23/07/2019 21:04

I don't have much advice sorry, my 8 year old ASD DS is terrible at going to sleep and needs me with him till he falls asleep. He sometimes says he is scared too, he used to call them "night time spookies" which was very original if a bit strange! 😃. My son was having a bad time at school but has settled better thanks partly to a wonderful teacher but his anxiety is all over the place at home. I am with your DH on the no medication, I just think once you start on it you then gradually have to increase the dosage to get it to work, I will probably be shot down in flames for saying that! I have 4 years experience of dealing and coping with an autism diagnosis so if I can help in any way please feel free to ask!

purplerain44 · 28/07/2019 10:27

Thanks very much for the reply. She’s falling asleep later and later..last night was 11pm..has anyone tried magnesium spray?

OP posts:
Goonergirl14 · 28/07/2019 21:20

Never heard of that will need to google it..Does your DD have anything she uses for comfort? For my DS it is his beanie boo cats though they don't really help him to sleep but he can't go to bed without them..

purplerain44 · 28/07/2019 22:02

Oh yes she has a cuddly toy she takes literally everywhere with her! Same as your DS it doesn’t help her sleep but it gives her some comfort.

OP posts:
borisisbonkers · 01/08/2019 20:51

I was wondering if you’d tried a weighted blanket? My 4 yo is a nightmare sleeper and I’m wondering as I find a weighty blanket makes me less prone to nighttime anxiety. We’ve got several important teddies

borisisbonkers · 01/08/2019 20:58

We use lavender oil - a bit on the temples, I don’t know how much it helps but it gives my elder dd a feeling of control. I’ve tried to get them into nighttime relax meditations but they don’t find it consistently helpful yet

K4THERINE · 02/08/2019 11:57

My son is adhd, odd and being assessed also for asd. We’ve decided (his dad and I) it’s for the best all around for him to try medication. He’s 10. The decision wasn’t taken lightly, but if it also gives HIM a better quality of life as well as us, isn’t it worth a shot?

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