Do all of us neurodiverse folks have sleep issues?
Do all of us neurodiverse folks have sleep issues?
I'm not great with details, but I remember reading that many of us in the neurodiverse community struggle with sleep or energy levels.
Back in my early 20s, I went through the whole sleep clinic process. I was diagnosed with sleep apnea and mild narcolepsy. They prescribed me a full-face CPAP mask because my mouth doesn't stay closed at night. That didn’t last long I dumped it after 2 months. I’m not a still sleeper — more like a rotisserie chicken — and the full mask just made me choke on my own drool. The doctors were frustrated and not very helpful. It felt like they expected me to control my body even while unconscious.
Now, over 10 years later, I’m going through the process again. Apparently, my body still isn’t getting enough oxygen during sleep, and it’s causing problems.
Still, I can’t help but wonder if the doctors are missing something — like autism as a potential root cause of sleep issues. In my neurodiverse friend group (both autistic and ADHD), I’m the only one not sleeping 12 or more hours a day. So now I’m left wondering what’s really going on — with me, and with them.
I'm AuDHD and have had pretty bad sleep issues my whole life. My doctors have told me it's common for people with these diagnoses.
May I ask what kind of sleep issues? Have your doctor said anything like apnea, or narcolepsy, or did they just say it's a mental health thing?
Mainly problem falling asleep, which I've struggled with my whole life. Can't turn my brain off, can't really fall asleep easily unmedicated. Has always taken forever to actually fall asleep. Lately I've been struggling with poor sleep quality too, with increasing severity over the past 7 years or so. Keep waking up multiple times at night and have trouble getting any deep sleep.
Not sleep apnea as far as I know, or narcolepsy. Probably just a mental health thing.
I'm a polyphasic sleeper. Which means for me, my body doesn't want to sleep more than six hours at a time, and wants to take a hard nap in the afternoon. Sometimes it can be scary how hard my body will try to fall asleep in the afternoon.
I wish the working world would let us all live to our sleep styles. Some days I am at work from home office staring at my bed.
There is a high comorbidity of sleep issues with Autism, 60-80% vs 20-30% of neurotypical pop that has sleep disturbances
Melatonin system differences is the main neurological causal factor. Tends to be lower production overall and abnormal secretion schedule. Supplementation with melatonin is cheap, relatively safe, and easy place to start. Consult a doctor if you have an autoimmune disorder or are epileptic as melatonin can mess with immune activity and lower seizure threshold. like all things it is possible to be allergic to it but that’s astoundingly rare. Can also interact with other meds like SSRIs and birth control to increase melatonin levels more than you’d want or meds like warfarin to increase bleeding. Basically if you’re healthy it’s very safe but if you’re already taking a bunch of meds, diabetic, etc just ask a doctor. It’s probably fine but never hurts to be sure
Other potential causal factors are what you’d expect: sensory issues, anxiety, etc. managing these ranges from not that bad to extremely difficult. Sleep masks, ear plugs, medications, white noise, etc
Apneas are also more common in autism and are more difficult to treat. CPAPs are poorly tolerated by everyone. there’s a reason insurance companies have pushed to have metrics built into them. You last had one a decade ago so it was potentially before this but modern ones snitch on you: they take usage statistics and if you don’t use them the required amount the insurance co demands you return it or they stop paying for it (this may have been the case 10 years ago even, definitely how it works now).
Outside of CPAP your options for treating apneas are fairly limited and depend on how the apnea presents. If you’re overweight losing weight is the biggest factor in management of an apnea. If your tonsils or adenoids are enlarged surgeries to reduce or remove them can reduce or fix the apnea. If you have narrow jaw issues that can be similarly corrected and reduce apnea. Steroids and such can be used if you have bad allergies but this generally is only an intervention for fairly mild apneas and then you have to deal with side effects of steroids
Otherwise it’s best to find a way to desensitize yourself to the mask if possible. I know it sounds impossible but I’ve worked with many people on doing this and it can be quite a significant positive impact on quality of life. Apnea ultimately means that while you are sleeping and even sleeping excessively you likely aren’t getting much restorative sleep. There’s unfortunately not much to do for that aside from getting oxygen into you while you sleep (or correcting the issues that prevent your airway from becoming obstructed)
I like your reply more than the 5g conspiracy theory one.
This is the most academic answer I have seen so far. Any source on those stats? My doctors may listen if I can give them something.
They should be aware, it’s not a new or poorly explored correlation. It’s been pretty well substantiated. That said it would not be the first time a doctor was ignorant about issues for people with autism, of course
From a quick search:
https://journals.sagepub.com/doi/10.1177/27546330241238668 - 80% of adults and adolescents with asd experience sleep disruption
https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2020.00273/full - 50-80% of asd populations in western countries experience sleep disruption relative to 20-50% of neurotypical peers
https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2019.00366/full - rates reported higher, as high as 65-93%
i take melatonin and it helps a little. the CPAP thing is freaking hard. I have a mouth guard for teeth grinding so it helps me keep my mouth closed and I got the least invasive mask IMO, a nasal pillow. Putting it on sucks but I have conditioned myself to want the air badly enough that it's like actually a relief to put on
I got Inspire surgery. So there’s that.
Ugh little rant bc I got my hopes up: when multiple counter indications apply (for me here: autoimmune disease, antidepressants, birth control), doctors tend to be so unhelpful. They'll give you the ok for the issue they're trained for, like a psych would potentially give the ok for the SSRIs. But even if you get the separate OKs for all the separate issues, there might be some intersectional issues that only occur for those who have a combination of the counter indications. If you ask a doctor about that, all of them will say they honestly don't know because it doesn't fall within their discipline. Can't even blame them, but it's so frustrating.
Autoimmune disease throws everything off, generally
Advice with a big caveat: you can consider seeing a multisystem doctor. In some hospital systems this is a called care coordinator, multisystem doctor, etc. the big caveat is there is also what are called integrative or functional medicine doctors. These are not inherently bad but you have to do your homework as some will move into pseudoscience bullshit. But there are many that stay to evidence based practice.
The point of all these practitioners though is to counteract the issue you mentioned. They are supposed to have a holistic view and coordinate care for complex cases. You may want to ask for a referral at rheumatology, in my experience they tend to know these doctors the most (bc again autoimmune is the worst)
Autistic people either sleep like clockwork, or like they're being constantly prodded with heroin and chloroform at random and there's no in between
My AuDHD kid (in their 20s) sleeps like a brick and always has. That kid has perfect sleep regulation and always has. I'm so envious.
I am also envious. That's a super power I'd take over the ability to fly.
Sleep issues can occur for many different reasons. More so when they're combined.
There's digestive issues, trauma - mental or physical, bad posture formed through years of bad habits, weak muscles, irregular hormonal activity, inflammation of the circulatory system, obstructive nodules, esophageal cancer, that thing where the valve between the esophagus and stomach isn't closing right, so acid or gas is flowing through it. Many reasons.
Anyway, sleeping patterns are easily disturbed when there is turmoil. A stable environment and a peaceful mind are both needed to build and maintain restfulness.
Funny enough, when I first got diagnosed, I was also seeing a dietitian. They suspected my sleep issues might be caused by a food allergy that was making my intestines swell. According to a blood test, the culprit was beef. So I cut it out completely.
Years later, I found out the test results were wrong and I’m not actually allergic to beef. But since removing it from my diet had improved my sleep so much, I just decided to keep avoiding it. Then, after a cholesterol issue, I took it a step further and went fully vegan about a year ago. Since then, falling asleep has become even easier.
That said, while I don’t struggle as much with falling asleep anymore, my sleep quality is still apparently pretty poor.
Yeah, know that feeling. Think you found the cause, but it turns out to have been masking something else.
I won't say it's the case for you, it's an addition to my first post. Someone I know had calcium deposits in their arteries due to poor hydration or consumed water quality over the years, or so they understood from their doctor and shared forward with the rest of us. Increasingly poor sleep quality was one of the symptoms.
I'm mentioning this due to the high cholesterol and not enough oxygen bits. Adding more worries to the ones you already have is a side effect of me looking to share that either fat or calcium deposits obstructing the blood flow through your arteries might have been decreasing the overall sleep quality over the years. This as something contributing to it rather than the initial cause.
FWIW, after I got diagnosed with light apnea, I got a sleep mouthguard, similar to one of these:
I hated the CPAP. The mouthguards don't work for everyone, but they helped me a bunch, and I can wear them more consistantly than the CPAP.
Oh that's actually a huge help. I already use a mouthguard for grinding. Last time I got the CPAP the doctors kept insisting I ask my dentist for something to keep my mouth closed. But they would never tell me what it was, and my dentist had no idea. Perhaps it was this?
Probably! I have the same issue of keeping my mouth closed, and this helped a lot
Can you link to where to get this?
I didn't get it online, so I can't really link it. I had it done at a local dentist, who molded it for me.
FWIW, my dentist did tell me that most local dentists could make them, but it's gotta be from a mold for your mouth.
My sleep has been all over the place over the years. There have been times when I couldn't fall asleep and even now I tend not to go to bed until like 2-3 AM. I also tend to wake up pretty early relative to how much sleep I end up with. In school I'd have an alarm set so that I could get up for class and I'd regularly wake up before the alarm even when I definitely didn't get enough sleep.
I actually had doctors suggest a sleep study to investigate causes of my depression, but I couldn't complete the study because the equipment they make you wear to go to sleep is so uncomfortable to me that I couldn't actually fall asleep while wearing it. So we gave up on that.
I never particularly feel well rested, but it's a chicken and egg situation. Am I tired because I'm depressed or am I depressed because I'm tired?
Then later I learned about the autism and lately I've suspected that I might also be ADHD, but still waiting on my appointment to actually figure that out.
I never particularly feel well rested, but it's a chicken and egg situation. Am I tired because I'm depressed or am I depressed because I'm tired?
Very relatable comment in general, but the above was the most relatable.
I wish you the best with getting your diagnosis. I absolutely dreaded the sleep studies. They were always scheduled on work nights, and I’d get almost no sleep. Then they'd kick me out at 6 a.m., and I’d end up stumbling back to my office since it was closer than going home.
Thankfully, my next one is on a weekend, so at least I can go straight home afterward.
When I get those strong, sudden urges to sleep and can’t actually fall asleep, I feel awful. Even worse, I can get irritable with the people around me. So, at least in my experience, the sleep issues came first. And the more I’ve done to address them, the better I’ve felt overall.
Who has time to sleep 12+ hrs a night!? That's something I haven't done since I was an early teen. I think by late teens I was probably sleeping 4-7hrs or so. Now my sleep is much worse and I get somewhere between 2-6hrs depending on the weather (I need a cool room or my sleep is basically the worst), and weekdays vs weekends.
I also have sleep apnea and will wake up with headaches/migraines if I don't use my CPAP which also leads to nights of me feeling like I'm drowning. Yay!
My friends have their reasons, but most of them are either unemployed or working part-time. I was in a similar situation when I was younger.
Now that I’m working full-time in a 9-to-5 kind of job, I’ve realized I just can’t do what I used to. I try to resist taking naps, but sometimes the urge to sleep comes on so suddenly and strongly that fighting it actually gives me migraines and causes mental distress. I think that’s the narcolepsy at play.
Im an AuDHD. Sleep like a rose, almost always. Whenever I am very stressed or overstimulated, things get weird. Sleepwalking, sleeptalking or just my body being awake but my brain being asleep.
I sadly have zero advice or tips. Sorry. Wish everyone who struggled a good night sleep tho.
I generally don't have sleep issues and sleep 7-8h during weekdays and up to 9h during weekends (though mostly also 7-8h), unless something external messes that up like stress from work (very rare) or kids (more frequent). Bad diet and lack of exercise was the primary driver for my bad sleep, low energy levels and mood swings...I know that's pretty much the biggest cliché ever, but it still works (for me at least), the key was just consistency over time, not just for a few weeks.
12+ hours per day is very excessive though and as much cause for concern as too little sleep.
Thank you for the concern it's my friends sleeping that long not me, but they each doing things about it with their doctors.
No real tips from my side. Just my experience.
Yes I have been snoring since childhood. tried CPAP because not feeling well rested after a full night of sleep. Helped against the snoring, not so much against the fatigue (maybe a bit).
Sleeping too long (8h+) makes the fatigue worse.
CPAP and movement during sleep: I postioned the device above the bed's head end so that the hose doesn't get in the way and attached the mask a bit tighter so it doesn't make noises or come lose when moving. Works okish.
Coffee + routine + sports make me go. Sometimes...
Thank you for sharing.
Physical activity like sports would definitely help I think. Me and my friends are all the same in our struggles to do the bare minimum of exercise. We're all in the loop of being too tired to do anything because we are too tired to do anything. I'm hoping the CPAP can help break that cycle. Though I have started seeing someone who is into long walks. So I am improving there, slowly.
I had to give up coffee awhile back since the addiction was a little too much for me. I still enjoy a cup on special occasions when I won't need to sleep well that night. I've noticed it's effects are stronger the older I get.
I've had insomnia my entire life. Can't sleep more than 4-5 hours at a time because of horrible/strange dreams/nightmares. Falling asleep is the worst of it, and the tiniest of disturbances (a noise, sensory issue like with the bedding) can dysregulate me to the point of distress making it hard to relax and pass out. I only slept well during times of heavy thc use, but those days are long gone. I need white noise, total darkness, and clean bedding to fall asleep these days and it's never a guarantee.
Do you have a heightened sensitivity to noise and touch when trying to sleep? I noticed I get that, lot of nightmares regarding bugs and my skin will crawl all night after one. I become every hair on my body and they all terrify me somehow.
Yep, allllll the time. I can't sleep without white noise because I'll fixate on things like cars passing or the a/c kicking on. I swear I can feel every hair on my head some nights and they're somehow twisted the wrong direction. I have sensitive skin too, so I'll randomly get hives/red itchy splotches that are maddening when trying to sleep. If I get actual bug bites I have to put bandaids over them so I don't feel them rubbing against any fabric because I'll scratch them bloody even when unconscious. Fun times.
Do you live near a 5g tower?
I’ve been pretty good at sleeping most of my life until the past few years. Now I have bipolar. Lithium helps but sleep is the most important thing. I spent 6 nights away from the city in May and all of them I slept solidly.
have you tried a nasal pillow mask? I recommend the Philips dream wear or the resmed airfit n30i which is what I rock. I'm an active sleeper and it moves with me pretty well. I have heard mouth taping can work if you can't keep it shut. Hard to handle though for sure
Weighted blanket and exercising have done wonders for my sleep