Sleep! Or why I can’t seem to zzz

Like many neurodivergent adults, I’ve had a long and challenging relationship with sleep. This critical part of good health, that contributes to well-being, a long life and good memory/executive functioning has been something that it has been difficult to build a steady relationship with. Instead it blows into town periodically, for a few good dates followed by behaving badly, making me feel terrible, anxious and slightly afraid of what it will do next, before blowing shit up and leaving me in pieces. But it has got better. Just lately I am getting to know how to manage it, what tames it and what to do when things go wrong. So where did my troubles start, and where am I now? Read on for my experiences around sleep and my lessons to other insomniacs, and the parents of would-be insomniacs around the world.

The early years: 4-10 years old

My memories of troubled sleep start when I was 4 years old. It was around this age that my parents (Dad probably), growing tired of my nightly awakenings and – for the expediency of getting back to sleep – my bedfellowship from about 3 am onwards, set new rules about where I ought to be at night; i.e. in my own bed. When I wasn’t waking in the middle of the night, I would rise with or before the sun. That summer it was fine, and I could trot myself from my dark room, down the dim hallway and creep in. Though a stop was put to this when, being discovered once again in the middle of the bed my Dad instituted a new rule: stay in your own bed until the actual morning.

Hmm… The sun was up. It was morning to me. Well, like most adults, the morning started around 7 am on a weekday and an unbearable 9 am, or sometimes later at the weekend. My internal clock was set for 5 am at the latest leaving me hours stretching ahead of lying in my bed waiting. Waiting being a theme of my childhood and an activity that my ADHD brain could hardly bear. Trying to stay regulated whilst waiting wound me up for the day ahead. It tends to feel like a tightrope act for me. So I failed at this task over and over and would sneak into their room. Sometimes just to the doorway or the foot of the bed, like a small devoted dog. On discovering this, and under further questioning, a new concession was added: I could ask the time so I would have a sense of how long I would have to wait. This is when I learned clock time and was bought a watch. A Snoopy watch with a red strap and Snoopy’s arms as the hour and minute hands. This was my prized possession – more on that another time. In the run up to getting confident with clock time (although I think I knew it but wanted to test the boundary of whether I could get up and have company) I would call out “What time is it Mr Wolf?”1 At the begining of this game, Dad would tell me the time. I would shut up for a while, pleased that I knew the time, had some contact and I could sort of busy myself in my own room. Eventually Dad got to the point when he might more frequently tersly answer “Too early!” The hours would again stretch ahead. I might call again, asking “Is it time to get up yet?” like some sort of living snooze button. But since the answer was almost always “No” at some point, in the now dark winter mornings, I decided to brave the hallway and sneak down to the living room where I could read a book or play without getting into trouble for making noise/turning on a light.

Because of the struggles of waking up in the dark, or – even more likely – having nightmares, I started to get very clingy at bedtime. I wouldn’t want to go to bed. I’d be panicking and doing everything I could to stay up later, to defer the time when I had to go to sleep and risk the vivid dreams that had begun to haunt me. Looking back, I employed the incredibly sophistocated PDA-like processes to avoid doing the thing that I didn’t want to do. I’d become slippery, either physically or psychologically and be out of reach of my parent’s demand that I go to sleep. Eventually lying awake for hours. How could they be so easily fooled?! But in failing to notice this, my parents inadvertently allowed me to be so wound up by the time it night closed in that I was resolutely unable to sleep.

Periodically I would succumb to exhaustion and sleep fitfully, the nightmares made worse by the anticipation of having nightmares and the constant bid to escape from sleep. The only times I felt safe to sleep was when someone was physically near me as I closed my eyes. But this was not always possible and certainly not as I got bigger. I learned that this demand was “too much” and could not be met. I would just have to put up with feeling all these feelings. No one could see how big they were, even though I kept showing them. I should just manage them alone – a recurrent theme of my early life. Sound familiar to anyone?

Stage 1 of my insomnia pattern became embedded: falling asleep is frightening, so stay awake.

Me, aged 10 years
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Pre- and early teen: 11-15 years old

I was now a chronically exhausted child. Adding to the stress of sleep was the stress of school and social life. I was growing and changing (though I wasn’t growing very much to be honest – in a family of beanstalks I am the smallest and I often wonder if my lack of sleep had anything to do with it). I would frequently stay awake too late, terrified of the dark and hoping for the relief of sleep, even with frequent nightmares. I would micro-nap on my desk, or just slump at it with my head resting on the cool hard wood until a teacher noticed. One even noticed the dark circles under my eyes and asked about them. I covered my tiredness with a lie – it was just a one off. They didn’t ask again and I took care not to be noticably flagging in their line of sight. I got good at hiding it, since I learned the lesson at home that no one was particularly interested in my sleep problem.

Stage 2: I need to keep pushing myself through the day and not show people that I’m tired.

Me, aged 15 years

Youth & Young Adult: 16 – 22 years

Having perfected staying up late, I now began to sleep in. The physiological need for sleep overcame my fear of it and at last, I began to sleep a bit. Trouble was, I would struggle to wake up. Being wrenched from sleep began to be associated with a deep, heavy nausea. As if sleep was like gravity and my stomach was subject to its pull, even though my reticular activating system (wakefulness system) was not. I didn’t want to be awake now. I needed sleep. But, hard lines, it was time to get up and get on with the day. Dancing to the beat of someone else’s drum was soon to be embedded when I started work.

University offered an escape from the draconian timetable of school. I was my own boss now, and this boss was going to nap! I became more or less nocturnal. Even though I went to university to study medicine, the requirements weren’t that high. We had a very limited number of lectures or tutorials and I would only just about make the minimum requirement, avoiding the rest. This tactic did not lead to the best marks. I only eventually got through by doing what I do so well: cramming. This was to the chagrin of many of my peers who, having enjoyed the schadenfreude of having seen my lack of attendance met with sub-par test scores, were surprised that I could recover my marks not by attending more of the course, but just by learning the books and practicing the tests. Ah, autistic brain, sometimes you are a marvel! But this blissful period of retreating into sleep, and actually being able to fall asleep, was soon to be cut short by the demands of work. And critically, shift work.

Shift work (or dancing to an unnatural beat)

Stage 3: waking up before I’m ready feels awful. So awful that the idea of it keeps me up at night.

Me, aged 22 years

The period of my life that involved working in hospitals really reactivated and brought together all aspects of my insomnia into their most perfect supervillan form. They were like the ultimate transformer – broken survival skills that combined together to make a mega-broken survival skill that were ultimately worse than the sum of their parts. That lurching sensation in my teens of having to get up for school came back with a vengence. My honed skill at forcing myself awake came into play and the anxiety of both falling asleep, staying asleep and… well all of it was never so active as these 10 years of my life.

I started working in hospitals in the early 2000s. (The very early 2000s). As a House Officer we did 24 hour on-calls. This meant that, when on-call, you were at work from 8 am in the morning until 5 pm the following day. Officially, we had “protected rest” periods from midnight to 7 am, but from my experience, this protection was about as robust as wearing a bin bag to keep yourself dry in the midst of a wet Glastonbury, i.e. laughably irrelevant. Weekend on-calls were brutal. Working from 8 am on Friday morning all the way through to 5 pm on Monday with snatched sleep holding my bleep in my hand , awaiting it’s piercing knell to someone else’s wants or needs really embedded where I stood in the grand scheme of things. I felt constantly sick and the stress of it meant that any time I wasn’t in work, I’d pour a load of booze on my stressed out nervous system which had moved itself into a constant state of “alert!” in order to survive.

You’d think, then, that I’d be happy when we moved to shifts. Especially as I had a proclivity for nocturnal living. Not so. I found staying awake all night under duress was like living on a live wire, I was constantly jangled by this demand. Not only that, I was not creeping about in the quiet and dim light of night, I was in the full glare of fluorescent lighting. It was all hard surfaces, bouncing light and noise, plus people. Don’t forget the constant people-ing of working in a hospital. I got whiplash from switching between days and nights, my ony socially acceptable tool to manage this was alcohol.

Suffice to say I got burned out in that first year of working. I had no idea why I couldn’t cope. I had heard the messages loud and clear all my life that I should just push on through and fit in with the ordinary demands of life. I felt broken that I couldn’t. That I wasn’t strong enough, that my will wasn’t powerful enough. I concluded that I must hate my job. I’ve discovered since that, OK, I didn’t love my job, but what I hated was the absolute mind bendingly chronic exhaustion that I was suffering combined with the constant message that my needs didn’t matter.

Remember where this started? With some innocent little nightmares, being told, “They’re just dreams…”

After crashing out of the first year of what is now called foundation training, I managed to go back to work after a break of 18 months. A break where I did nothing to heal my problems – heck I didn’t really know what they were apart from being useless. Rather, in true “you-couldn’t-make-it-up” idiot-style, I cashed in my pension contributions, took occasional hospitality/tourism jobs and generally bummed around for 18 months. When funds got really low, I’d go and do an odd shift here or there. Sometimes even a week of being a locum doctor. I surprised myself when on these returns to medicine: the job was easy. The locum agency passed back positive feedback from delighted teams who were happy to have someone competent catch stuff. I filed this away in the “Imposter” drawer, with the caveates of ‘everyone else they get must be dreadful,’ ‘look how I fooled them’ and ‘they don’t really know me.’ A product of how my self-worth was chewed up by the consultants responsible for me in that first year of work.

Eventually, on discovering that being a doctor paid better than being a barmaid (at the time), and with a whopping overdraft (did I mention that I cashed in my pension contributions – wise financial choices not my forte!) I went back to working as a doctor. I carried on in medicine, doing all that I could to manage the dreadful exhaustion and chronic insomina that had all but disappeared when I wasn’t working and spent another 5 years in hospital practice until I caved. I couldn’t take any more shifts and, with talk of a consultant-led service, all I could see in my future was a looming lifetime of shift work. I couldn’t take it. So instead of applying for the registrar training programme I’d have wanted, I applied to General Practice – where I could at least choose if I wanted to work nights, evenings and weekends.

Rebuilding a relationship with sleep

Working more regular hours, I started to get myself into more of a pattern. I’d still periodically wind myself into a frenzy of insomnia, not be able to sleep, get burned out or need to take days off to recover, or need a night or two of sedatives to get back to “normal”. Like many people, I’ve had repeated short courses of sedatives. Some autistic folks I know take things like nytol every night – not good! I didn’t really get into a healthy(ish) relationship with sleep until fairly recently. Even then, it’s easily disrupted – like it was last night.

My father died in 2019. I know, not your typical ‘hooray, and now I can sleep’ story. Dad was a mere 68 years old. He was an ox. But he was not the world’s best sleeper either. Like me, he often had vivid dreams and, after living in hot countries for more than 20 years, he tended to wake early to do things – like go for a run, or, you know, walking up a mountain in the cool part of the day before it got too hot. Visiting him, the tables turned. He’d be nagging me to get up. His house being one of the places I could sleep. One of the places I felt safe near his physical presence.

Dad fell ill suddenly – from being robust giant he was felled by a catastrophic stroke. He spent 3 weeks on ICU. In that time, my sleep went seriously to pot. I had to employ every strategy I had to grab any sleep at all. I had to latch my mind onto a distraction to tire it out and wind it down – like throwing a heavy blanket on a frenzied animal then wrapping yourself around it until it stops struggling. The moment I woke I’d be shocked back into the knowledge, with its accompanying adrenaline rush of panic. That three week rollercoaster of fear, hope and hope dashed led me back to the GP and another script for Xanax this time. I knew I was falling apart and without them I wouldn’t be able to hold anything together, let alone myself.

When Dad died the ground fell from under me. Now I was just falling and the pieces of me were just plumetting. Sleep was a dull relief, mostly. I was so exhausted in my grief that I would fall dully into a heavy, dreamless sleep, solidly for months. After the initial months, I returned to work. With that return came the return of insomnia. Even if I could fall asleep – which generally I could – I woke at 3 am, or 5 am on a good day. Sleep was not really restful and I was back to chronic, depressed, exhaustion. News began to arrive about the virus in China. With months of this, and coinciding with the anniversary of Dad’s death, 3 am wake ups became the norm.

You may be wondering when we are getting to the part about developing a healthy sleep habit. I’ll get there. But in order to rebuild, I had to realise all the things I did that made my sleep habit utterly dreadful. How a totally wonky relationship with what I must do, how I must be coupled with the slings and arrows of daily life – some unavoidable – led to a completely dysregulated nervous system. Along with unawareness of how I got there, I only had a limited range of strategies to calm down. The ultimate “pull cord in emergency” of pour on alcohol became a daily habit by autumn 2020. Who knew that my “rock bottom” would be slicing the very end off my thumb whilst slicing a lime and that quitting drinking, though sadly not the revalatory experience I had hoped for, would be followed some months later by making changes that would help me end the worst two years of sleep of my life.

I still don’t sleep great, but stopping drinking, and being in the midst of this weird time has led me to several realisations about what helps me to have a better relationship with, and access to, sleep.

What I’ve learned and what I would do differently

Lesson 1: Sleep is a habit. Just like any habit, it is easy to build bad ones but takes a bit more attention (and discipline!) to build good ones.

Lesson 2: A good night’s sleep depends on how you spend your day. This is probably the most important one: there is a direct correlation between me living in a happy tolerance zone of nervous system regulation in the day and sleeping at night. This means I have to be ruthless about how I spend my days. This includes noticing what the boundaries of my window of tolerance (see image below) are, getting support to re-regulate, learning to stretch into my red zone, and practicing how to come back to green. Now remember how I cannot tolerate being bored, or waiting. How I overshoot from grey straight into red? That is how distressing hypoarousal is. This is the crux of my ADHD, why I run towards danger and chaos, but why it is ultimately absolutely terrible for me. I’m even learning to stretch into the grey. To notice when I’m dropping there and find things that lift me back to the green. Calm activities like embroidery, or drawing.

Of course life can’t always be in the green zone. But with growing awareness and observations of how y follows x I can begin to make choices that are better for me.

Window of Tolerance

Lesson 3: Meditation helps. This is the motherhood and apple pie lesson. Tell me something I don’t know, right? Of course we all know this is the case. But maybe I can take the opportunity to reinforce why it matters and how it works for me.

Meditation helps me to slow down. Together with therapy this allows me to stand a little to one side and observe my choices. To be less attached to the thoughts that lead to behaviours, and to question whether it truly “must” be this or that way. To notice where the space is to take a different path. To actually see the forks in the road instead of rushing down to my habitual destination. Other people use exercise to do this, but for me, a daily pranayama (breathwork) practice and the support of therapy has helped me develop the skills to do this. Perhaps this is something neurotypicals intuitively do. I suspect not. But I wonder if my autisticness kept me rigidly attached to ideas about how things “must” be for too long. All those internal rules, deals and strategies built when I was a very small child, but which are too tight a fit for an independent, autonomous, mature adult anymore. Therapy is the job of putting different scaffolding in place so the old strategies can be retired, and replaced with new stuff. It’s supporting you to rebuild the house you’re living in whilst you’re still living in it.

Lesson 4: Sleep likes routine. The easiest way to achieve this for me is to have a set wake up time. Mine is 05:58 am (!!) This is because I’ve stopped the boozing and get up to meditate, breathe and stretch.

Sleep is a barometer of how much time I spent in the green zone. I am cultivating an awarenss of what sends me into the red or the grey, and developing daily habits and practices to rescue myself, and help me to gently broaden my window of tolerance.

Me, aged 44 years and 1 month

Advice for my parents

I’ve thought a lot about what my parents could have done differently for me. I was in part prompted to write this after a consultation with a parent about melatonin with a parent. So what can parents do….?

I’m not a parent. I am an auntie. I have the utmost respect for parents and know it is a really difficult job. All I can say is that your lovely kiddies learn from you, and digest all the emotions and messages that you give them about sleep, both consciously, subconsciously and unconsciously. So, what would I do? Here’s my advice:

  • Sleep is an important a habit. Your job is to help your child know it is safe and nourishing to fall asleep. Nothing is as powerful as what we role model and how we relate to things like sleep ourselves. Being well rested helps your child have access to better emotional regulation in the day, which means they are more receptive to learn and develop.
  • Building a good sleep habit is totally dependent on how you spend your days. This means co-regulating with your child through the day, noticing when they are going off kilter and finding ways back to safe, mirroring connection is probably the best thing you can do for them.
  • Be mindful of how patterning of behaviours might be happening. Are you helping them learn how to feel empowered to move back into the green? To learn how to self-soothe? Or are they subject to the demands of others all day long (get up now, go to bed now, do this, do that, be this way, don’t be that way).
  • Routines are great, but if the routine isn’t working, don’t get exasperated. Kids aren’t stupid, they can see what’s coming. You can’t just depend on bedtime routine to get them there. You know what I’m talking about… “one more story” or won’t get out of the bath. Kids know how to drag their heels if they don’t want to sleep. Don’t let it become a battle ground.

Nightmares. How to address nightmares with a child? Probably the first thing we should all understand (if you agree), since dreams are a place where we process our experiences, nightmares mean that something alarming or frightening is trying to get processed 2 . It isn’t helpful to say things like, “They’re just dreams they can’t hurt you.” This invalidates what it is like to have nightmares and be frightened. Maybe ask them more about the nightmares themselves. See if you can pick up on any of the symbology and can help them process how it might be similar to something in their waking life. Then ask them about how they might want to dream that dream differently if it happened again. Writing a different ending where they turn and face the monster, asking it what it wants, can help anyone feel better, and safer, in returning to sleep after a nightmare.

And so to bed

Sometimes sleep still eludes me. I still have nightmares from time-to-time. The quality and reliability of my sleep has improved though. This hasn’t been easy to achieve but it feels less fragile now. As do I. Knowing now what I didn’t know back then, I feel much less at fault for being broken. No. The world is a challenge for me and I didn’t inherit the very best toolkit to survive it. But sleep is so critical for health and well-being. It’s my number one target of something to improve in daily life. And it’s by improving daily life that I get there. I hope you will too.

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Tell me what you think of all this in the comments below or via twitter @autisticgpshh

Footnotes

  1. What time is it Mr Wolf? I have no idea where this came from, but think it must have been some story that we read when I was little.
  2. To learn more about the meaning of dream themes and symbology, I’d recommend This Jungian Life Podcast.

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