Sleep Deprivation and Autism

Unless you are C.

C’s life is an endless wave of transformation and I never know what’s coming next.

C has never been a long sleeper. 4 hours if I am lucky. But for nearly 6 months now when home he has not been sleeping AT ALL.

Apparently there is a connection between lack of sleep and the following characteristics in some autistic people. But I think this list explains me and my sleep deprivation! I can’t see any difference in C.

• aggression
• depression
• hyperactivity
• increased behavioural problems
• irritability
• poor learning and cognitive performance

I feel my brain has been kidnapped. I feel desperately tired, lonely and often totally emotionally overwhelmed, a loss of identity as he uses me as an object.
Not knowing which level of consciousness or planet I am on especially around the 3am void on the 3rd night
Like the universe I need some Duct tape to hold me together.

So for understanding (and C enlightenment!) I research. But sometimes I have to accept I won’t always find answers.
Here are some of the things I have looked into over the years and more recently..
Medication side effects
Health issues
White Noise
Black out blinds
Lots of exercise
Diet i.e. cut out any stimulants later in the day (but the logic of healthy eating for me when tired goes out the window!!)
Colour therapy = colour of his bedroom
Lighting
Good routine – established over years
Aromatherapy bath
Massage
Weighted blanket
Looked at his bed as he was throwing his mattress down the stairs
ie Beds for autism
Or Water beds!
Bed socks!
Personalised Hypnotherapy CD

I looked at Cs environment from both his and my point of view, to make his room safe for my peace of mind. Soft play walls, easy clean floor. Bullet proof windows.

I had to rethink.

So if none of this works and as all behaviour is for a reason….

It usually boils down to one of these
Attention
Escape from demand
Escape from attention
Tangible
Sensory

As not being able to speak does not mean C has nothing to say.
So what is he trying to tell me??

“If you want to change the other persons’ behaviour, a good beginning might be to start seeing things from their perspective”

C is 21. 21 year olds go out clubbing all night. OK so they then sleep all day and Cs not doing that.

It’s his choice!? Who am I to say he HAS to sleep?!

We often wrongly assume others needs are the same as ours.

So I have to put aside my own needs and expectations of my ultimate desire of a night’s sleep as I realise after months – this is not Cs goal.

Or another theory

When C’s away he’s worked hard at making sense of chaotic sensory experiences and then can’t switch off when he comes home. He needs the down time to process and doesn’t sleep instead he is engrossed in repetitive behaviour (which I won’t go into) lowering his stress levels and exerting control. This has now become a cycle – an unstoppable loop.

So I need to look at ways to change the routine and break the loop.

I bring him home by different routes. I change what and when he eats, what he is watching etc These things don’t work

I use Cs repetitive behaviour to ‘talk’ to him. I copy him so I’m not overloading him with my stuff, I am validating C as a person in his own right. I am trying to get him to engage with me and not just himself. I stim, sharing sensory sensations, I squeak, orienteering myself to our common language, I talk Shyriiwook (the neighbours must think there is a Wookiee convention!)
Every movement, flick, tap, hit, rhythm, sound is an expression of feeling, letting me glimpse into C’s inner world. Deepening trust, reducing anxiety and gaining self confidence. Relating.

This is the behaviour I changed – mine.
I stopped doing this in the evening. I stopped engaging – talking to him, looking at him. And its working – slowly (hope I’m not speaking too soon!). He’s stopped exerting his control over me by literally physically holding me hostage. He’s still not sleeping mind you but happily babbles to himself which I can sort of doze through. Only the odd thing flies down the stairs. And I can try and catch up on my sleep when he is not there!

You would then think I would sleep for England but I don’t. My mental Tardis is on over drive and I can’t turn my radar ears off. So I am now using all the alternative stuff I tried on C to help myself so I can stock up on sleep before the next round.

Well that’s my theory! That’s my Duct tape – and I’m ‘sticking’ to it for now (with copious amounts of coffee!)

What have you tried?
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Jen Shrek

Mum, advocate and #ActuallyAutistic challenging the system.