As Archie has gotten older, his sleep patterns have gotten worse. We’re struggling on about four hours broken sleep a night with some nights far worse. For the most part he wakes up around ten times a time with a couple of days a week getting up around 4am. It’s hard work, for the whole family, but also for Archie. When he’s had a really bad night it affects him and his symptoms the following day. His Autistic traits really come out the following day, especially with his sensory issues, so it really impacts his progress.
We’ve worked really hard on his bedtime routine, he has a very strict routine, any tiny change makes a huge impact and his sleep worsens even more for around two weeks. He can’t stay at Grandma’s, even if they stick to the routine. Because it’s someone & somewhere different he won’t sleep and this makes it even worse for us when he comes home so we can’t even have a night off to catch up on sleep as it’s just not worth the extra issues.
The Health Visitor has seen the effort we’ve gone to in order to try and help Archie sleep so the next step for her was to refer us to a specialist. Luckily, she was able to refer an Autism specific Sleep Workshop, I say luckily as it’s the only Autism specific one in the country. I did have to make a 70 mile round trip but if it was going to help then the distance wasn’t an issue!
What I learnt
Children with Autism can have some very different issues with their sleep than children not on the Spectrum so the workshop was a real eye opener. I have done a lot of research myself around sleep issues connected to Autism but it was great to have a professional give real help & advice. Autism is such a wide spectrum so can affect children very differently, as the saying goes, if you’ve met one child with Autism, you’ve met one child with Autism.
A lot of children with Autism have communications issues, Archie is non verbal and has issues with responsiveness, for example at 30 months he still can’t follow simple instructions and he really struggles with eye contact and holding his attention. So understanding that it’s bedtime can be a real struggle for them, they need order, sequence and absolute consistency. In order to help Archie understand it’s bedtime I really need to think about things from his perspective.
The first part of looking at things through Archie’s perspective is in situational cues and linking them to the appropriate part of the bedtime routine. Simple things like putting on his PJ’s then taking him downstairs for a ‘quiet half hour’ can be very confusing, you’ve got them ready for bed them changed the scene from ‘bedtime’ to ‘time to wake up’ by taking them back to where the toys, tv etc is. We also need to think about the signals we are giving him in the morning too, as soon as we get up we must get him dressed. It was explained to us that only wearing his PJ’s when getting into bed will give him a clear cue that PJ’s equals sleep. If we were to leave his PJ’s on for breakfast then we are breaking the association. Everything needs to be clear & logical for children with Autism to understand, I never even thought of this being an issue, it just never occurred to us that something so simple could have such a big impact but it makes sense. My hubby forgot to brush his teeth one night and it took us almost three hours to settle him. It wasn’t until I was updating his sleep diary that we realised. We then had to go through the full routine again, including brushing his teeth then he settled almost straight away, if we had of just brushed his teeth then this would not have been enough for Archie to realise it was time for bed.
Social factors are something for us to think about too, we basically need to teach Archie about bedtime. The way we put him to bed will be the way he expects it every time, even when he wakes in the night. If you stay with them, stroking their face or rubbing their back then they’ll need to same thing to get them back to sleep in the night. The same goes for night lights, lullaby’s etc if they fall asleep with a light or music they’ll need that each time. We need to think about changing our behaviour and what we want to work for Archie. We’re also going to be moving him into a toddler bed so that we start to make all the changes together than having a routine that works then changing it again when we move him into a big boys bed.
There are also sensory factors to consider, there are so many small things that can have an impact on a child with Autism. For Archie, this is the bedroom temperature. He doesn’t feel the cold the same way we do so we can’t have the heating on during the evening or night as this really disrupts him. He tosses & turns, kicks the bedding about and constantly wakes up. Also because he has issues with textures we have had to completely change all his bedding & pillows for a softer cotton and lighter duvet. This also affects his PJ’s, he can’t sleep in onesies as he has issues with the feeing of the zips and will pull at them crying. He likes soft PJ’s without any seams or tags to irritate him. Even his sleeves or trouser legs rolling up in the night really distresses him but he can’t bear the feeling of tight cuffs on them, he’ll just scream & cry pulling at them.
Another factor that we need to consider for Archie is the stimulation he’s had that day. For most children, a busy day will wear them out and they will sleep soundly that night. This has the opposite effect on Archie, if he has a very busy day, or does too much later in the afternoon then he gets over tired and won’t sleep, instead he’ll get more & more distressed which leads to lot’s of screaming and crying through the night and barely any sleep at all. A few times I’ve picked him up from nursery and they’ve said, oh he’ll sleep tonight he’s exhausted. They can barely believe me when I drop him off in the morning saying it was gone midnight before he fell asleep and was up again at 4am!
The workshop lasted a total of five hours so I won’t go into every detail as without an understanding of Autism it’s hard to understand some of the sleep related issues & potential solutions, I’ve done the workshop & lot’s of research & I’m still not 100% clear! The simple way I’ve explained it to our family and friends is that we need to find the pieces of the jigsaw that work for Archie. This jigsaw needs to be put together the same way every night. If I miss a piece or put one in the wrong place then the jigsaw won’t be complete so just won’t work for us.
I’ll be writing another post on the specific changes we’ll be making and how that has impacted his sleep, I’m really hoping that we will see some improvement as it is really hard work for the whole family and impacts all of us, but especially for Archie. We can go without sleep but Archie needs his sleep in order to make progress with his learning and special needs. Keep your fingers crossed for me & I’ll let you know how we get on!