I do my best work between the sheets: An Autism sleep tale

I know how the title of this article sounds. But can you blame me? I’m half asleep. Again! That’s despite me turning the lights out just after nine because I was so tired from the night, and day, before. I fell asleep quickly, like I always do. But, as is often the case, my bladder (the scourge), woke me a few hours later.

When I returned to bed I lay there. And I lay there. And…I lay there. From 11:15 until almost 3:00am my mind did a’churn. Running through all the stories I want to write for this blog but, as of yet, haven’t done so, the lunch I was going to cook the next day, the walk I would go on, the appointment scheduled with my psychologist for the afternoon, and the six-week online Autism group session I was starting that night.

This is, typically, how my nights play out. My bladder rouses me, and my mind kicks in and won’t quit. As a consequence, I often wake later than I plan to, I’m groggy, and by early evening I’m already thinking about bed again.

Last year, besides learning that I’m Autistic, I learned that I have sleep apnoea. This means that in bed I now resemble something of a fighter pilot. And between flossing, brushing, sticking in ear plugs, and strapping myself in with the sleep apnoea machine, have added about 30 minutes to my bedtime routine.

Once tucked away beneath the covers, the constant airflow the machine provides makes no difference to my ability to stay, and then return, to sleep. And, sadly, there is no noticeable difference to the way I feel in the morning, despite being told I could expect to be more alert and better rested.

The reason, at least as far as I’m able to discern from my own research (this is nothing any doctor has told me, not even the very expensive sleep physician who billed me thousands for the privilege of strapping a mask to my face), is Autism.

Poor sleep is a core Autistic trait, not a side effect

Difficulty in social situations, repetitive behaviours, sensory issues, and restricted interests, are all well-known features of Autism. And while it might not be as well publicised, the understanding that Autistic people suffer sleep problems, is growing.

In 2009, Goldman et al. discovered that Autistic children with sleep problems are more hyperactive and more easily distracted than kids who sleep well.

A 2017 study found significant sleep issues in up to 86 percent of Autistic children.  

One of the largest studies into sleep problems in Autistic people took place in 2019. The results concluded that almost 80 percent of Autistic children between 2 and 5 years old have disrupted sleep, while the chance of experiencing sleep issues is double in Autistic children compared to non-Autistic children or kids with other developmental conditions.

In a 2021 study, researchers found that fruit flies with a mutation in a gene known as ISWI, have poorly formed sleep circuits in their brains. ISWI happens to be the ‘fly version’ of the human genes SMARCA1 and SMARCA5, which regulate other genes by changing the structure of something called ‘chromatin’, a mixture of DNA and proteins that form the chromosomes found in human cells. And many of the genes that alter chromatin structure have – that’s right – strong ties to Autism.

Basically, researchers found that flies with low amounts of ISWI slept less than typical flies, and that the sleep they did get was fragmented. Just like my own sleep is.

So why do I feel tired even after a supposed ‘good night’s sleep’?

This one has always done my head in. I asked my sister recently if she wakes up feeling rested, and she told me that, most times, she does. Then she asked me the same question. “Never,” I told her. “Not even after I’ve had what feels like a good, uninterrupted sleep.”

Yes, I have sleep apnoea, and my bladder rouses me (even if I don’t get up, it’ll still be there, kicking me for periods during the night), and in my thirties I was diagnosed with Hashimoto’s disease. But I take a daily tablet for that, and I use my CPAP machine for the sleep apnoea, so surely I should feel better than I do when I actually manage to get some sleep!

Desperation, and what my wife described as “shaking” in my sleep drove me to my GP, who sent me for a bunch of tests, which landed me with a neurologist, who said I could take something called Pramipexole, which doctors use to treat Parkinson’s disease and restless legs syndrome (neither of which I have), and comes with some nasty side effects, so I passed. Or, he said, I could try slow release Melatonin, which would help with my anxiety and associated parasomnias (I do call out in my sleep when the night terrors start – usually spiders descending from the ceiling on a long line of thin webbing to do goodness knows what on my face).

I took the neurologist’s advice and tried the Melatonin, and while it helped me sleep more soundly, I always woke up feeling like I’d been beaten round the head with a stick. So it didn’t last.

Still desperate then, my also-now-desperate (probably to be rid of this issue)-and-out-of-ideas GP (who is actually very good, by the way) referred me to a sleep specialist, whom I grew to hate. (Well, not ‘hate’. That isn’t good for anyone. But I wouldn’t recommend this guy to anyone anywhere anytime. Why he’s able to even practice is beyond me. I did tell my GP and she promptly removed him from her referral list.)

When I saw the very expensive, very important sleep doctor (his name in large gold lettering behind the reception counter screamed at me his absolute importance – the first massive red flag that I ignored despite a voice inside me saying “What the hell is up with those BIG GOLD LETTERS?” – that and the fact I never once saw him stand up, in three visits – he would have his reception staff walk patients to and from him as he buzzed them in and out of his office instead – and, believe me, at the risk of sounding incredible rude here, he needed the exercise), he made it clear to me that despite my slender stature and his keenness to “understand what was happening with my sleep”, he thought it would almost definitely be sleep apnoea. (The words coming out of his mouth, along with the masks affixed to a series of dummy heads all lined up like decapitated mask models on oak furniture showing off the various mask styles screamed dollar signs, and should have acted as my second red flag and confirmed that I was already up to, and well and truly over, my own – firmly attached – head here.)

At the time I was going through this process, I had self-diagnosed rather than undergone any formal diagnosis for Autism. But that didn’t stop me telling the sleep specialist that I was Autistic – a revelation that caused him to not even bat a single one of his inordinately meaty eyelids.

In fact, even after I had undertaken two separate overnight sleep studies at the very prominent hospital in my State (and it wasn’t the Mater Hospital, or the Royal Brisbane, or the Princess Alexandra, or Greenslopes, or St Andrews) where the ‘fat cat’ (in all meanings of the expression) doctor works, all sorts of wires strapped to me by the ‘overnight sleep technician’ (not the specialist himself, he was snuggly tucked up in his own bed) so that they could monitor my every breath and movement and brain flutter, he made not a single reference to Autism and what I now know to be its significant association to sleep issues.

Instead, true to his word, he diagnosed me in line with how I assume he diagnoses most, if not all, of his patients. And then peddled me his very expensive machinery.

And I, poor little dysregulated Glenn, dumbstruck by the sheer breadth of his intellect as he opened his mail and took phone calls in front of me, said nothing to challenge him.

He handed me on to his minions, the salesforce at work in offices that occupy the very rooms in which the sleep studies take place (a marvel of functional design principles, I tell you), and they fitted me and made adjustments and took me through the steps to cycle the CPAP machine on.

And at the end of it all, haggard from lack of sleep, a hospital feed of corn flakes and jam on toast, and desperate for the familiar surroundings and silent sanctuary of home, they effortlessly and skillfully cajoled me into signing on the dotted line.

Now I’m not trying to suggest here that I don’t actually have sleep apnoea; I do, I’ve seen the charts. But it’s mild to moderate at worst and the sleep specialist didn’t take into account my Autism in any of his deliberations, including any sensory issues I might have when it comes to using the CPAP machine, which does make a noise, or how I would cope with having a mask strapped to my face all night – something that is incredibly difficult to get used to, even for non-Autistic people. I know because I’ve asked some.

In my humble opinion, this particular doctor was operating on autopilot, not considering the specific situation of the patient in front of him, nor my inherent differences. And that attitude towards patient care inappropriately places the burden on Autistic people like me to be on top of their treatment when many, if any at all, are truly able to sufficiently do so.

What’s more, I now know from having looked at the research that even a seemingly good night’s sleep may be less restorative for Autistic people than it is for the mainstream population because we spend approximately 15 percent of our sleeping time in the REM stage, while for non-Autistic people that figure increases to 25 percent.

Surely that’s information an esteemed, expensive sleep specialist like my big-gold-letter-loving friend should know.

So what are researchers doing to understand the relationship between Autism and poor sleep?

Treating sleeplessness in Autistic people has always proven challenging because it’s difficult to disentangle the effects of Autism on sleep and because it has often taken a back seat to other types of Autism research.

But, thanks to sleep now being seen as less of a side effect and more as a key trait of Autism, researchers are finding new ways to study sleep’s connection, which should in turn bring benefits.

Rather than the invasive ‘EEG helmet’ (like the one I had attached to me) traditionally used in hospital-based sleep studies, work is underway to deploy minimally invasive sleep-tracking devices.

While these new devices won’t be able to collect the same level of data as polysomnography (the EEG helmet that remains the ‘gold standard’ for conducting a sleep study and retrieving the most accurate, real-time information from a patient), they will still track sleep stages and certain aspects of a sleeper’s physiology and brain activity, providing an excellent alternative for Autistic people, who usually have specific sensory sensitivities and, therefore, different needs from non-Autistics.  

Recent scientific endeavours have even focused on tracking a person’s sleep without the device itself needing to touch the body of the patient, which would obviously hold great advantages for Autistic people, who generally have trouble adjusting to wearing monitoring equipment throughout the night.

It’s hoped that this new research will result in better overall day-time outcomes for Autistic people, too, including increased concentration and social skills, and fewer repetitive behaviours, all of which poor sleep can exacerbate.

But Glenn, none of this explains why you say you do your “best work between the sheets”

The only benefit I have so far been able to take from my inability to sleep, is that once my mind starts thumping, I get all sorts of crazy ideas, many that I believe would make great stories for this here blog. Of course by morning, I usually realise that less than a quarter of them are actually worth anything. But still, that’s more than I’d ever come up with when I’m awake.

Fact is, I have been sleeping a little better lately. And that, it appears, is down to having started taking antihistamines to try and combat what I suspect to be histamine intolerance. [More on that in an upcoming piece soon!]

If the antihistamines are what’s helping me sleep better, and I’m pretty confident they are because they work in a way that reduces the incidence of nocturnal histamine peaks, and they’re helping me in other ways when I’m awake [again, more on that soon], then that’s a win as far as I’m concerned.

I’ve also read that many Autistic people have a mutation within the ‘clock’ gene, which impacts “normal” circadian rhythm. Therefore, taking something like slow-release melatonin (which I mentioned above that I’ve tried before) might also help some Autistic people improve their quality of sleep.

Following traditional sleep advice, including getting some exercise during the day, limiting access to screens and electronic devices before bed, and going to sleep and getting up at the same time, will also help many Autistic people.

It’s important to remember that getting a good night sleep isn’t going to “cure” anyone’s Autism, because Autism is a permanent neurodevelopmental condition, not an illness.

But boy, getting some good-quality, uninterrupted shuteye sure can make a difference to the way you feel, and potentially react, in situations and to sensory input. So it’s got to be worth investigating further if, like me, you’re Autistic and struggle to get a decent night’s sleep.

Please note that although everything on this website is well-researched or based on personal experience, I am not a health professional (in case you hadn’t already guessed!). Always contact a qualified, registered health professional for medical advice.

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