Published on 12, July, 2020
Hi my name is Antonella, I am a product design student currently in year 13 doing my A levels.
I am currently working on a design project to help support families with children on the ASD spectrum specifically relating to their night time routines, such as being able to settle down to sleep independently and thereby the whole family can benefit from a product that can improve this routine. This is a project that is very personal to me and my home life as I have a younger sibling who has long been diagnosed with autism. I would really appreciate it if you could take the time out of your day to answer a few of my questions so that I can gather as much information to inform my decision on what I may want to develop throughout my project.
I would really appreciate if you could comment on what helps your child sleep or what problems you think your child tackles that causes them to not sleep.
Any feedback; support and help would be greatly appreciated.
Hi
My daughter was diagnosed age 4 with ASD, SPD and anxiety. Most often it is at bedtime that her anxieties come to forefront of her mind and prevent her from getting to, or staying asleep. Late nights or her being over tired make the situation far worse and cause nightmares on top.
We have a strict (as in, has to be the same every night) bed time routine, she uses a weighted toy across her (could not get on with weighted blanket), we use magnesium flakes in the bath and vettiver oils to help clam/relax her. Our main thing is the worry monster teddy who sits at the end of the bed. Anything she has on her mind preventing her from sleeping gets written down and 'fed' to the monster to worry about. It is a concept we worked hard at introducing, despite being skeptical ourselves and thankfully she has really bought into it and trusts that it will work - and so it does.
we have not yet found a cure for when she wakes with aching legs though!
I wish you well with your project and hope that your research can help your brother too
My 7 year old daughter (currently going through assessments so not diagnosed) never slept as a baby it was so bad I used to hallucinate through lack of sleep and they wanted to send her to a sleep clinic. The only way she slept was if we co-slept. She needed that physical presence near her, once she got a bit older (2.5) we put her in her own room, I had to stay in there while she fell asleep which could take hours and I had to have my hand on her.
She started to be able to go to sleep without me there when she was about 6, however it takes her sometimes up to 2hrs to get to sleep. She has a strict routine of story, brush teeth, into bed, cuddle and kiss and I have to say a very specific little rhyme which she responds to with her own return rhyme answer. She also has 48 (yes she’s counted!) teddies on her bed, she piles these over herself I think she likes the weight of them.
Night time is when her stress and worries about the day are likely to come out, she keeps a diary under her pillow which she writes in although she’s not really grasped that she should write her feelings it’s more a note of what she’s done during the day, sometimes with a happy or sad face. She also has worry dolls but they are largely unused as I think the idea behind them is too abstract for her. What’s most likely to happen is that she will lie in bed crying until I find her, I then have to calm her down (usually squeezing her feet helps) and the bedtime rhyme has to be said again and the teddies repositioned.
Hi Antonella I am only just being diagnosed as autistic, and I am in my late 50s, but I can tell you about my sleep struggles and solutions as a child.
In those days (1960s) we had sheets and blankets not duvets. My mum would tuck me into bed so tightly I could hardly breathe, but it helped me get to sleep. The bottom sheet on the bed had a seam down the middle which I flicked with my toes. The blanket had a satin edge which I stroked my face with. My mind was always racing thinking of lots of different things which was why I struggled to get to sleep.
My mother always sang the same lullaby every night. I can remember the words and tune now. I had a cuddle sheet which I stroked my nose with (I got very upset if it was ever washed - it was a blanket on a doll's bed before it became my comforter). I also sucked my left thumb until I was 14 years old. I only stopped because I was going on a geography field trip and had to sleep in a dormitory. I had to practise getting to sleep without sucking my thumb for a week. I managed it eventually.
When I got older (10+) I used to read under the bedclothes with a torch when I could not sleep. I had to do this because the neighbour opposite told my mum if she saw my bedroom light on in the night. Then, when I got a transistor radio one Christmas, I started listening to Radio 4 and the BBC World Service late at night. The Cold War was happening then, so some of the news stories made my insomnia and anxiety worse! I still love the theme from the shipping forecast which used to come on just before Radio 4 closed down for the night. Then I'd hear the theme for the BBC World Service which was totally brilliant and started: "This is London..." (I've just found it on YouTube and listened to it again!).
This is all ancient history - 50+ years ago now... These days when I can't sleep I still read or listen to the radio or turn on my iPad, which is fantastic.
Good luck with your project, it sounds really interesting!
Rose
That's fine sorry I couldn't be more help, but it is nice to know I'm not the only one having that issue
Thank you so much for telling me about what helps you sleep, especially when you wake up at the night as with my brother, I see that this is when its most difficult to go back to sleep.
Thank you so much for telling me an insight of your night routine with your daughter. My mum has the same problem with my brother, he refuses to sleep alone without my mum in the bed to cuddle with him.
You have helped me a lot on my journey with my project. Thank you again :)
Although I'm not a child I am an autistic adult and struggle to sleep. I take medication for this from my GP. On the odd occasion when I've woken up in the night due to stress I use this lavender roll on to help me nod back off - www.lavenderworld.co.uk/.../yorkshire-lavender-oil-rollerball-10ml
My daughter is 7 with undiagnosed asd, her sleep has always been a problem started at 2 with horrific night terrors thankfully she out grew these however she still only sleeps for 3-5 hours per night and not all at once. Unfortunately I can really give much insight into what works have lost count of the different things we have tried. The only thing that will make her stay still in bed and eventually fall asleep is laying in my bed curled up on me while I stroke her hair. As soon as I move she is awake again it has had a really negative impact on my family as her dad now has to sleep on sofa.
I wish you all the best with you project as sometimes the best ideas can come from things like this