I haven’t gotten to sleep before midnight since my diagnosis.
I never used to struggle with sleep; in fact, when I was a child my sleeping skills used to be the butt of family jokes. If anything went wrong, embarrassed me, upset me, overwhelmed me I’d be found in bed, sleeping it off. But since around the age of 16 my sleep anxiety has been growing.
I know what it was: my youth pastor mentioned how people ‘need’ a minimum of 8 hours’ sleep to function well, and that sleep hours before midnight were worth ‘double’ those afterwards. It wasn’t an accusatory or guilt-tripping conversation – he was more musing on challenges for himself – but those sound bites have dogged my heels ever since.
I began counting my sleep hours. Began planning my sleep for the week. Began worrying if I fell behind my quota. I spend my spare time stealing naps rather than activities I enjoyed. I worked out a weighting system for nap sleep vs ‘proper’ night sleep. I started turning invitations down if they would keep me out too late or didn’t fit my sleep schedule.
None of this was really consciously done, I just kind of fell into it. And my fatigue levels became one of my main concerns.
Come my identification as autistic, I can give names to a lot of my struggles – meltdowns, anxiety, depression, sensory overload, executive dysfunction. This has been such a freeing process partly because I have come to know that I can have control over these challenges. Whereas before I was enslaved to my emotions, having no words to describe my experiences and no ways to prevent them; now I have reasons and I have solutions provided by the wealth of other autistic people figuring this out with me.
And I have come to see that, for me, one of the main ways I can reduce my anxiety, increase my tolerance toward sensory stimuli and stay alert to the strange social challenges of life, is to be well rested.
… Which brings me full circle back round into my sleep anxiety…
Now that I am more fully aware of how reliant I am on my sleep levels to withstand the challenges of everyday life, I am more afraid than ever to go out when I am running on anything less than peak-sleep.
I have no answers yet. Maybe I will write more if and when i find a better routine.
A Little Off the Mark 
Thanks for sharing Beth. You’re not alone on this one and what you describe is very similar to my experience. One solution I came across quite by accident works more often than not (but isn’t totally reliable).
I deliver a speech regularly (on mental health as it happens). And when I decided that it would come across better if I had no script I decided to learn it. All 6000 words of it – a 47 minute speech.
To keep it fresh in my head I would give the speech (in my head!) every night as I put head to pillow and found that most of the time I was asleep fairly swiftly.
I’ve no idea whether this would work for anyone else. It seems that my anxious thoughts and challenges were much more muted by my determination to memorise the speech.
I do wonder if this would work for others. Perhaps memorising a poem, play, story.
Wishing you well.
Jonathan
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Thanks Jonathan, that is a great idea. I guess it’s a more sophisticated version of counting sheep! I often try to count my breaths to try to calm my brain but if I am particularly anxious this doesn’t always work. Something like you suggest, which would be more engaging, is definitely worth a try.
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