Autism And Sleep – How Do You Sleep?

As it is Sleep Awareness Week I thought I would do a blog post about my sleep habits as an autistic individual and what changes there have been to my sleep habits over the years. If you are autistic I would be curious to see what your sleep habits are in the comments below. Sleep problems, especially not sleeping seems to be something many autistic people experience, so I would be curious to read the experiences of others.

I have always struggled with falling asleep. For much of my childhood, teenage years, twenties and into my thirties I would rarely feel tired. I have been fortunate that I am not a worrier, I have never struggled to sleep due to worrying, but my thinking can keep me awake. So, there are two issues in relation to my sleep, one is not feeling tired and the other is my thinking.

As a child and teenager it was common for everyone to be in bed and asleep and me to be in bed or in my room but awake. I wouldn’t feel tired so I would watch TV in my bedroom. I remember frequently watching films and TV programmes late into the night until the TV channels would go to the no service screen (who is old enough here to remember when it would get late at night and programmes would stop showing!). Fortunately there used to be the Open University and educational programmes  on shortly after this. As a young child and teenager I used to like watching these programmes, initially I couldn’t understand why they were being shown so late at night. I thought nearly everyone is asleep and missing these programmes, if they put them on at a better time, like replaced the soaps and sports programmes etc with these programmes people would love it because these teach you so much. I thought if people knew that they were missing these programmes they would be so upset that all they have available to watch is soaps and sports programmes and other programmes which teach very little. I now realise that I am probably in the minority of people who would rather watch these programmes, but for years I thought everyone would rather watch these programmes than what is normally on evening TV.

Just because I didn’t feel tired and so went to bed late didn’t mean I woke up late. Most of my childhood and teenage years I woke up early like most other children, watching morning children’s cartoons from 6am on most days as a child and being up by 7am daily as a teenager. The only exception to this was when I was about 17. When I was 17 I still didn’t feel tired at night and so would still go to bed at perhaps 2am-4am, but I went through a short phase of perhaps a few months where I struggled to get up at about 5am-6am. At the time I had started working in a holiday camp. My shift was often 7am-11pm six days per week. I would set off from home at about 6:30am to make the 25 minute 8 mile cycle ride to work and would make the same journey home at the end of the day. I would set my alarm for about 5:30am but went through a stage where I often found I would turn the alarm off and then end up waking up about 7am and realising I was already late for work, so I would rush out of the door and cycle to work ending up about 45 minutes late and then getting in trouble for this. I had no excuse other than “I woke up late”.

My solution to this which worked when I remembered it was to place my alarm across the other side of the room so that I would have to walk across the room to turn it off and would hopefully by then be awake enough not to just fall straight back asleep.

Fortunately, this phase didn’t last too long and possibly unfortunately I also took up drinking as I was trying to socialise and drinking helped me to do this, but that is for another blog post if people are interested… I also moved to the town I worked in, so I only had a ten minute walk to work instead of a 25 minute cycle.

After a few months my sleep patterns seemed to go back to normal. I went back to not feeling tired and waking up feeling fine and awake. Much of my later teens and early twenties I would go for up to six days without sleeping. At the end of this time period I would decide to go to bed at some point, I would close my eyes and instantly fall asleep waking up about 8 hours later feeling fully refreshed and alert ready for another six days or so of being awake.

It was during this phase where I realised that what I was doing wasn’t ‘normal’ because others weren’t and seemingly couldn’t do the same. It is an unusual but addictive thing to stay awake for that length of time. The first 48 hours or so I wouldn’t realise how long I had been awake, I wouldn’t feel tired. Then during the next 24 hours or so I would have moments of feeling tired, but not feeling so tired I want to go to sleep, just yawning occasionally like it is perhaps approaching bedtime, then after that I would stop feeling tired at all and would instead feel hyper, feel full of energy, I would be very lucid, the world would become incredibly vivid, even more vivid than normal and I would have periods of time where I would dream while wide awake, I would see hallucinate things I knew weren’t real but they looked very real. I felt I like was accessing a greater capacity of my brain and able to think about things in a way I normally couldn’t. For example, normally I struggle to create vivid mental imagery, but in this state it was like I had opened the door on my dreaming brain and was able to easily access it. I could think about something and see it almost as real as real life. There were skills I had up to my young teens that I had lost, or at least had significantly reduced by the time I reached 20 and in this state I seemed to have access, even better than I did as a teen, to these skills, things like being able to do synaesthesia, to see auras around people which represented their emotional state, to see lines on Pool or Snooker tables from the white ball to the object ball, showing the paths of balls etc, seeing sounds as flashes of coloured light which was handy when playing games like Manhunt at night-time.

Through my twenties I reduced how much I stayed awake for. It became rarer for me to stay awake for days at a time. This was mainly because the rest of the World it seems doesn’t fit this pattern of living life. It became more frequent for me to go to bed about 2m-4am again. During my early to mid twenties I worked in residential children’s homes doing 24 hour shifts. So it was handy when the children/teens didn’t settle and there was a lot of paperwork to do that I had no problem being awake all night long and then on my day off I didn’t waste it by going to bed, I would finish work at 8:30am and would get on with my day like normal going to bed like normal at about 2am-4am that night ready for getting to work for 8am the next morning.

As I progressed into my thirties I found it strange that I started to feel tired and needing to sleep due to tiredness rather than ‘because it is time to sleep now’. I am now forty and although I frequently go to sleep later than my wife I rarely go to sleep at 3am-4am unless I am working on something or have lost track of time. It is more common that I go to bed at a more usual time of about 12am-2am and I have times where I start to feel tired approaching midnight, although if I don’t go to bed during the 20 minutes or so of feeling tired then I will usually not feel tired again for many hours. I also find myself feeling tired when I wake up. I don’t turn off the alarm and fall asleep like I did when I was 17, but when I feel tired I do turn the alarm off and think that I could so easily sleep for a little longer.

The other issue I mentioned was my thinking. As mentioned, I don’t worry, but I do over-think. I can go to bed and while I am trying to fall asleep I will get an idea for a book or invention or way of doing something, or theory on something like gravity and how it perhaps could connect with the other forces. I constantly have ideas going through my mind and will want to explore them further. I will want to get up and start doing research or going and finding something in a book, or writing ideas down etc. This happens all day and all night, like a constant stream of information and ideas. I have written on napkins and filled many notepads writing down what comes to mind. I can lie in bed for hours wide awake, not able to fall asleep because my mind is constantly saying ‘and another idea, and here is an idea about how we could live on Mars/find planet nine/create larger and safer space stations/create more detailed computer games characters/etc’…

What I have to do to shut this off is to listen to something like relaxing instrumental music which I can build rapport with that contains long flowing notes to help slow my breathing and other rhythms to focus my attention, or guided meditations or sleep stories like the kind I make on my YouTube channel (in fact the first sleep stories I made for those other than children were for myself to help me sleep).

So, over the years from early childhood to forty years old I have usually required very little sleep, probably around four hours per night. I have had times when I have struggled with waking up, which is a common stage for all teenagers to go through as their brain goes through pruning, and over the last few years I have had times I wake up feeling tired although this is actually more common if I sleep for over four hours rather than under four hours. Something which has happened over the last few years when I sleep for under four hours and occasionally when I have slept longer is waking up with a headache, so I now try to go to bed once I start to feel tired to reduce the headaches. I don’t necessarily wake up feeling tired, I just wake up with a headache which can take many hours to pass.

I have always wanted to be a participant in a sleep study where they isolate you so that I can find out what kind of pattern I would fall into if I didn’t have to fit with others routines etc.

Other areas which impact on my sleep are sensory things like the feeling of items of clothing or bed sheets or temperature of the room and light levels in the room. I like to have a heavier soft duvet so that I can feel the weight of it, I like low pillows, I can’t be doing with having two pillows etc and getting a bad neck. I don’t like clothes that can get twisted on me or cut off circulation to my feet etc. I like the room to be completely dark and slightly cooler, but be able to warm up with the duvet. I sleep fine on hard surfaces with minimal cushioning, like when camping and find it incredibly relaxing to be able to hear nature while I sleep, so even when it is freezing cold and I have barely slept when camping I still feel deeply relaxed. I feel I sleep better when I have cool air as I find this helps to keep my breathing clear and I can feel the temperature of the air I am breathing in and out, whereas I find warm air feels like I’m not breathing at all and feels restrictive.

So if you are autistic, what are your sleep experiences and what do you find helps you sleep?

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