*PDA (Pathological Demand Avoidance) is a presentation of autism, please click the link for more information about PDA from the PDA society website: What is PDA?*
I can’t believe I haven’t blogged about sleep and PDA before as at one time it was a massive issue in our house and it is such a common thread in so many groups. Sleep can be a huge problem for many PDA children and a lot of parents end up at their wits end because, let’s face it, if they don’t sleep, we don’t sleep!
One of the biggest reasons for sleep problems in PDAers is anxiety. Everybody knows that if you have worries they will come and haunt you when the house is quiet, there are no distractions and you are just about to nod off, now imagine that you are a super anxious child, who finds many things in life extra scary and how much worse that must be. On top of that PDAers often have amazing imaginations which must be a real curse when your are alone in a dimly lit room wondering what the shadow on the wall is or what might be lurking under you bed. My son told me that in our old house he always thought something was living in the attic and might come down and get him in the night, he didn’t tell me until we moved into a house without an attic and he could finally relax.
As well as the anxiety there is the demands of bed time – getting washed, getting changed, brushing teeth, getting into bed, being quiet, going to sleep and a million and one other demands to avoid. Transitions like this can be difficult for many autistic children and adults but for the PDAer you have the transition and the demand of getting ready for bed and going to sleep as well.
Sensory issues, often made worse by anxiety, can add to the mix to make sleep difficult. Lumps and bumps in the bed, noises from downstairs or outside, the smell of a new brand of washing powder, the list goes on for the sensory challenges that may interfere with sleep.
So now a picture is building of a highly anxious child, who takes time to transition, is overwhelmed by demands and finding it hard to feel comfortable and I think it is clear why it can be so difficult for a PDA child to get to sleep or even stay asleep. So what can we do to help?
Well every child is different including every PDA child so different things will work for each one but here are some areas to look at;
- Reduce general anxiety – As with most difficulties a PDA child is having I would suggest looking at reducing anxiety during the day first and foremost. Plenty of down time, reduce clubs and activities, lift pressure such as chores or homework where possible.
- Let go of a strict bedtime routine. It’s ok to prioritise sleep over say, brushing teeth or wearing pyjamas for a bit. I would suggest you still offer a bath, opportunity to brush teeth or put on PJs but don’t insist. Instead either leave it to them to choose or make a compromise to say brush in the morning instead. Any arguments or pressures around bedtime are going to leave a PDA child anxious and wound up so try to leave these discussions until the morning.
- Where possible let your PDA child to create their own bedtime routine (and change it when they want to). – If this is accompanied with the parent imparting knowledge of why sleep is needed, reducing anxiety and demands and a relationship of trust this can work really well. My son decided on a bed time of 10 pm, teeth brushed, a glass of water and a glass of milk and a goodnight from me,10 mins hugging with his dog, into his pjs and half an hour on his iPad. He has stuck to this now for three years.
- Allow time to talk before bed. I don’t mean make them talk but for younger children who perhaps have a story hang around a bit for a chat, for an older child you could let them know you are available each night to talk if they wish to. Create a relationship of trust so they know they can speak without judgement or being dismissed. Even if worries seem trivial or fanciful to you never laugh or dismiss them as they are big genuine worries for them.
- Create a safe comfortable space. Buy the best bedding you can, a thick mattress topper can work wonders stick to fragrance free washing powder, make the bed daily (or if you have a rare PDAer who makes their own bed, check sheets are smooth, sheets are clean etc. Make sure the lighting isn’t too bright or at the wrong angle and don’t is at on having the light off, my son is thirteen now and still sleeps with a lamp on. As well of this my son had a sleeping pod for a couple of years which really helped him feel safe. details of this can be found in my blog about anxiety HERE
- Offer Reassurance and connection – this does not mean you need to co-sleep with your child all night every night but being present before sleep or until sleep comes is needed by some children. For others cuddly toys and or pets can help if they prefer their own space. Often just knowing you are willing to stay is enough and the more a child trust you to be there when they need you, the more safe they will feel and, the less likely they are to call on you.
- Don’t make blanket screen restrictions. Most sleep specialists would be horrified at me saying this but don’t make screens the source of arguments. Often children need these to de-stress or escape from anxiety. My son always has half an hour to an hour on his iPad before going to sleep and he sleeps really well. For some children settling with a tv on a timer or listening to some music works. What you have to understand is that when a PDAer is feeling really anxious it is impossible for them to switch off without help from something that will block out all the noise in their head.
- If you are able allow your child to find their own pattern of sleep. PDA children often have different sleep pattens, autistic people in general May have a less usual patten of sleep to neurotypical people, sometimes because there is less going on at night so it’s easier for them to be up and about. However it is so important for all children that they get enough sleep, If you home educate it may be an option to allow a child to find their own rhythm so they can get there required amount of sleep but not necessarily at the usual times. If used in conjunction with lowering demands and creating a sensory friendly environment then it may, given time, change into a more usual pattern. Obviously this will not be possible for many families however but is something that is useful if you have a child who is highly traumatised by school or anything else and needs to reset.
- Pets can help relax a child at bed time. The benefits of stroking a pet for anxiety are well known and having a pet in the room on the run up or sleep or even sleeping with your child can be great providing it is a calm, placid cat or dog. I would not recommend leaving a very young child alone with any dog however placid or any very young child with a dog for that matter!
- Ask your GP for help. He may be able to prescribe Melatonin which can be worth trying if all else fails. My son refused to take it and that is not uncommon with PDAers but if your child will take medicines it may help just to get them off particularly if they have to get up for school. I wouldn’t judge anyone for using it nor believe it should be ruled out. Remember though it only tells the brain it’s time for sleep, a child who still feels highly anxious will be able to resist those cues. There may be referrals GPs could make to an OT or sleep specialist but I would be a little wary of this as many of the usual sleep strategies require a lot of structure which may cause more problems than it solves for a PDAer.
One last thing if nothing seems to work and you are at your wits end with it all remember it is not for ever, things can and do change so do not dispair. If you have found anything that works well for your child do share your tips on the comment section below.