January 17, 2021

Autistic people and sleeping

By rosieweldon

Disclaimer: As always this is based on my own experiences and my autistic brother (age 9). It is not a catch all for all autistic people. Just some insight and guidance.

Sleeping has always been a big deal for me. I guess for most you just go to bed and sleep? Like it’s a thing your body needs so you just do it? That isn’t, and never has been, the case for me.

As a child I spent more nights on my parent’s floor than in my own bed. I was terrified to sleep alone. I would need to know they were right there while I slept. As an adult the opposite became true. I became unable to sleep with anyone in the room, even someone I was in a relationship with.

As you can imagine both situations weren’t ideal. I live alone now and so my environment is designed for my specific needs. I sleep in silence, almost darkness and alone. I can share a bed with one person and that is a little dude that’s been sharing it since a newborn. Anyone else I just can’t sleep. I try. I really try. But I can’t sleep.

I often wonder why sleep is such a big deal to me. Why can’t I just sleep? I think it comes down to feeling vulnerable. As an autistic adult I fight through so much in my life. It’s almost impossible for me to get across in these blogs how much of my life is a fight. My guard is up and I try to push through everything. So, to let my guard down when anyone is anywhere near me, to have no defences and try to drift off to sleep – it’s just impossible.

When my anxiety levels are bad they become heightened in the moments before sleep. I have had countless panic attacks as I try to fall asleep. For a few months of bad health anxiety I had to sleep sat upright for fear of not being able to breathe. I have spent weeks sleeping to music because I would rather be awake because I can’t sleep with noise, than in silence with my own thoughts. Ultimately given a choice between heightened anxiety and a sleepless night, I’d choose the latter. If staying up an hour later to watch something and help me drift off saves me from the anxiety and panic attacks, then that’s what I’ll do.

The hard part then comes from all the parents wanting their children to get a nights sleep. Personally, if they need a distraction, I’d give them one. If they struggle with anxiety when trying to sleep maybe a calm Disney movie or episode of children’s bedtime tv to distract their mind. Especially those who may be worrying about school, as I often do about work.

From a vulnerability side I remember so clearly how scared I was to sleep alone as a child. Lucky for me I had a miracle mum who would never let me be afraid. She knew it was genuine fear and she never made me feel guilty for sleeping on her floor. Jenson is nine and still sleeps in my bed and his parents at home. He’s fighting so hard at school at the moment and can’t calm down enough to sleep without knowing we are there. Honestly? If a child that has difficulties in the day needs to co-sleep at night, or sleep to a movie, then what does it matter? I would say to work with your child and find what works. Forget the norms.

I don’t think I will ever truly understand why sleeping is such a complicated and big deal for me. But I promise you it genuinely is. I have no reason to attention seek or make a big deal of it.

If you don’t know why a child can’t sleep I would try ways to comfort. I often hold a teddy that’s really soft while I sleep because the sensory input on my hand is calming. I play puzzle games before bed to calm down sometimes. Little man can’t sleep without soft piano music playing. Ensure lighting is what they want. If they can’t sleep in the dark, then soft lighting. All the aspects need to come together to provide an environment they feel safe in. Falling asleep for an autistic person, especially one with anxiety, comes down to needing to feel safe.

I can’t sleep with people in the room because it makes me feel unsafe. Jenson can’t sleep in silence because it makes him feel uneasy and unsafe.

I would advise to pick apart the sleeping arrangements as much as possible and see what parts could be making them feel unsafe, or what you could add to help make them feel safe and comfortable enough to let their guard down and fall asleep. As soon as we start to feel frustrated and anxious it’s very hard to get out of that.

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