I used to regularly get good sleep for a while pre-pandemic, but ever since then my sleep has become so dysregulated and I've basically become dependent on weed to fall asleep. It's gotten to the point where I get nerve pain and restless legs (that in itself contributes to insomnia) if I don't get high before bed, no idea if this is a shared experience with other NDers. On top of the fact that this makes weed less fun and it makes my tolerance out of control, I also don't like relying on a substance to fall asleep as it seems to just make it more difficult to try and go without the longer I continue this pattern. I am trying to refrain from using weed to fall asleep for the next short little while but the first night I'm unable to fall asleep at all. Anyone have any advice or experience with a similar situation or just for regulating sleep in general? I know sleep difficulties are part and parcel of the autistic, ADHD, ND experience generally. I can't function if I don't get good sleep and I'm desperate.
Start with the same sleep hygiene recommendations as for everyone else: consistent bedtime, no caffeine after 6pm, no alcohol for a couple of hours before bed, no screens for an hour before bed, dark room. Then add things that especially help. For me, melatonin helps a lot, but can leave me groggy in the morning. I need a cool room to fall asleep, and in particular it needs to get cooler just before I sleep. In the winter this happens naturally, but in the summer I set the AC a little warmer than I want in the afternoon and early evening, and turn it down before bed. I like to listen to dark ambient music while going to sleep, your mileage may vary, and you may prefer nature sounds or white noise. These recommendations work for both me and my child, so might have more general AuDHD applicability.
Also, you might sub out CBD for the weed for a while to get the nerve pain, restless legs, and tolerance under control? I don't know if this part will work.
No caffeine in the afternoon was unbelievably huge for me. I have always felt that I had a high tolerance for caffeine, but realized that this doesn’t necessarily mean all parts of the body processing it are equally tolerant. It turns out that no matter how much I consume, it takes my body AT LEAST 9 hours to fully process it. I’ve experimented with it over the past year while trying to get my sleep under control, and it turns out that if I want to be asleep by 11, I can’t have a drop of caffeine after 2pm, not even with something like green tea. I may still even feel tired when 11 rolls around, but my body just won’t let me sleep. But in the mornings? I can have cold brew after cold brew until about noon with zero impact to me later in the day. After I figured this out, I spent a while despairing about how much sleep I must have lost in my life just because I wanted an afternoon coffee or tea lmao
A few years ago my body decided to start processing caffeine as if I were a corpse in need of revitalization lol also had to learn the hard way how my body was handling it and that it could keep me up late if I wasn't careful
I personally take melatonin, 0,5mg at least two hours before I need to fall asleep. It helps a lot, but only in this small dose and if I take it early enough.
I also divert my brain by listening to stories from these cheap bluetooth face mask headphones. This has saved my life when it comes to working or any kind of participation where I have to stress about falling asleep/getting up early. If I wake up in the night I just turn it back on and it distracts me enough so I don't start "thinking about all the things". The stories are typically something I am interested in, but not too much. Familiar loved books work, I have done three rounds of Discworld in the last few years.
My partner got tremendous help from a weighted blanket, for restless legs especially.
Can't reply to all the comments so I'll just respond here. I truly appreciate the advice everyone is giving me!
I guess I was hoping there was some secret easy fix or something but I guess the truth is I'm gonna have to put some hard intentional work into addressing the issue. I think I'm still in the midst of a 3+ year long burnout that I need to address as well to figure out my sleep issues. I will try slowly weaning off weed instead of quitting cold turkey so that I can still get sleep and don't dysregulate myself even more. I'll start introducing some better sleep hygiene, turning off screens, going to bed at a consistent time etc. and trying some melatonin. I definitely need to be better about my diet and physical shape as well. Unfortunately the extended daylight hours during the summer do not help so I will also try to find ways to simulate night time earlier to help as well.
Thanks for giving me a space to talk about this stuff and get suggestions. I've been so heavily masking for so long that I think I'm genuinely learning for the first time what it means to take care of myself.
You'll get there.
For what it's worth I have only ever done the stuff I posted about, I still drink my coffee (has never made me wired), still have my night owl rhythm at weekends and all that, I stay on my screens until I go to sleep. I think I mostly just accepted I am wired different like this and love nights and just leaned into the few things that helps me spesifically to do what I must to survive this wage labor hell. But I don't like it that I have to do this. Figuring out the low dose melatonin took 3 years and I don't take it on weekends because I allow myself to be myself for these two nights a week. So mostly I am trying not to stress about making my sleep perfect or hygienic or whatever.
This is my complicated way of saying I hope you are kind to yourself and embrace the way you are just as you are. There's a reason neurodiverse folks like us can be called and become perfect neoliberal subjects and all of these ways we try to "fix ourselves to fit in" can in themselves turn into a bit of a burnout inducing mask/performance. At the end of the day we are probably never going to have an easy time with sleep in the neurotypical sense of "easy" if we have to do it on their terms, because there are no habits.
I also have diagnosed audhd and have had sleep problems for as long as I can remember until literally around this time last year. It sucked when I was younger because nobody took me seriously when I told them I was having serious sleep issues. I have always had problems falling asleep and staying asleep. To make it worse, it felt like no matter how much sleep I got, I woke up feeling tired and poorly rested anyway.
To fix my problem, first I started limiting ANY drug usage (which includes caffeine and weed) to early afternoon at the latest. When it comes down to it, making these a part of a schedule makes anybody potentially mentally and physically reliant on them, and seeing as audhd predisposes people to extra vulnerability to becoming reliant on them, it’s no wonder I ended up becoming so dependent on them to stay awake/fall asleep. Second, I started taking vitamin D immediately when I wake up in the morning. I’ve also tried to limit phone usage, especially within an hour of trying to go to sleep. There are admittedly some nights that I just can’t put the damn thing down, and on those nights I inevitably end up sleeping worse. I don’t have the science to back it up, but I assume it’s the fact that while I would like to sleep, my chronically dopamine/serotonin deficient body is screaming at me to pick the dopamine/serotonin machine back up and scroll through my phone again. To help with this, the nights I feel I can’t put the phone away I try to do something that is more chill and has a set end, like doing all of the daily NYT puzzle games.
This combination of things has literally changed my life. Not only do I sleep through the night, which has been incredible, but I wake up most days feeling well rested. I am seldom tired during the daytime and very rarely feel the need to nap. Most shockingly, I never realized how overstimulated I was getting in everyday life just from being poorly rested. My tolerance for being in uncomfortable situations/environments is so much higher that I feel burnt out about 10% of the time I used to. It’s such an incredible difference that I thought I’d never experience after having lived my entire life simply believing I was bad at sleeping.
I think that sleep hygiene is different for auDHDers, but this is anecdotal and based on me extrapolating so don't presume that most of this comment is backed up by hard evidence.
One key factor that gets overlooked is your so-called "sensory diet".
If you tend to be higher masking or you suppress your stims, you may find that you really struggle to centre yourself and to settle enough to get to sleep because your nervous system is dysregulated. I know this definitely affects my sleep onset. It might be worth literally scheduling in some defined stim-time as a wind down exercise for sleep.
With regards to stimming, there's a real gap I've noticed in peer knowledge on the topic. Some forms of stimming are stimulating or "arousing" in the sense of being energising or filling a sensory gap, sorta like when people jump up and shake themselves off to fire up. Then there are stims that are soothing or calming, that help you relax. Things like rocking and humming are often experienced as soothing stims.
When it comes to getting to sleep, I think it's worthwhile identifying which stims you find soothing and focusing on using some of them before bed.
In short, stims come in the following dimensions:
Visual, touch, taste, smell, hearing, your head's orientation, sensations from your body that determine its orientation in space and which feel pressure, and your internal feelings in your body
(Visual, tactile, gustatory, olfactory, auditory, vestibular, proprioceptive, & interoceptive)Do you find swirling or flowing patterns calming? Maybe make a playlist of things like waterfalls, waves on the beach, this fabulous sand wheel art performance, footage of how ink is made, or if it's within your budget perhaps consider getting a ceiling projector that creates moving illuminated patterns. That sort of thing.
I think touch is pretty easy - find textures that feel soothing on your skin, maybe run a fan in your room if you like the feeling of airflow over your skin, wear comfortable clothing to bed or don't wear anything at all, etc.
I'm very sensory-seeking with taste so there aren't any gustatory sensory inputs that I can think of which are calming but you might be able to for your own experience.
Smell is a really, really good one. It also tends to be extremely specific personally. But your olfactory system links really deeply into your memory so you can leverage this for sleep hygiene and associate a particular smell you find calming with a bedtime routine and you'll find that over time that connection will get very strong and the smell will cue your brain to get ready for sleep very rapidly. My suggestion would be to opt for a particular scent, whether it is artificial or it's an essential oil or a blend, which is replaceable - it's easier to find a different source for the smell of lavender or sandalwood than it is to find a replacement for a particular scented candle which is now suddenly a discontinued line at a retail outlet.
Hearing is a good one too - I'd explore different "colour" noises. White noise is the classic example but a lot of autistic and ADHD folks tends to prefer pink noise or the unfortunately-named brown noise. The sound of rainfall or flowing water can also be really soothing, and there are plenty of noise generator apps available. Crysknife007 on YouTube has a whole lot of different colour noises that are worth exploring too. Deep layered brown noise is a personal fav but you need good headphones or speakers to actually hear it. Fans also produce white noise so that can be soothing too.
With regards to vestibular sensory input, certain types of rocking can be particularly good. Swaying in a hammock, rocking in a rocking chair, and other ways of rocking your body are good options.
With regards to proprioceptive sensory input, the classic option is a weighted blanket. There's also different types of binding or making cocoons that might work for you. Obviously with the more intense examples, remember to be safe with it but sometimes, for example, having a little gentle pressure on your head from a beanie might be what works for you.
Interoceptive sensory input is usually one of the most difficult to connect with for autistic people. Imo eliminating the negative interoceptive sensory experiences are probably the important parts - can you feel if you are hungry, thirsty, sore, tense, emotionally dysregulated, etc? If so, try to address what's going on so that discomfort can be eliminated or reduced. Doing a sort of short interoceptive-focused body scan might be really helpful here.
Last thought on sensory processing for insomnia which is pretty important to auDHDers specifically: there's a minimum level of stimulation that most ADHDers require or otherwise it's borderline physically painful. Yes, a calming environment works well for most sleep hygiene but note that this is specific advice for allistic people. Autistic people, ADHDers, and especially auDHDers tend to require a higher minimum level of (pleasant) sensory input to feel at ease. Do not assume that playing Sigur Ros at bedtime is going to be what's right for you just because it feels like it's supposed to be soothing since it fits our cultural concept of calming because it is slow tempo music which is uncluttered. The heavy-hitting double bass drumming at a rapid tempo from some metal might be what hits the spot for you, and I'm not being hyperbolic in the slightest with this example. Be open-minded and observe how your body responds, do not comfine yourself to the boundaries of cultural norms or expectations.
Moving on, melatonin is good but it's worth understanding how it works from a sleep cycle perspective. Don't take it at midnight, unless your sleep is really out of whack. Try to take it 30-90 mins before your ideal sleep onset time, or even less, depending on if you're trying to shift your sleep onset from late in the night to earlier or if you're content with when you are getting to sleep. Note that some people are just night night owls and perhaps embracing this might be easier than attempting to enforce a typical sleep schedule that is expected by society, especially in the more extreme cases.
Lastly, sleep masks appear to improve quality of sleep based on research. Autistic people are generally very sensitive to light. I feel like sleep masks are probably even more effective for autistic people than neurotypical people because of this fact. No I will not back this claim up with scientific evidence.
(If none of this advice is helpful then as a last resort you could always try reading one of my comments - they go on for fucking eternity, they are drier than Noam Chomsky's throat, and they are boring as hell so maybe this could be a good alternative before reaching for the horse tranquillisers?)
·22 days agothey are drier than Noam Chomsky's throat
The very line this is on proves it wrong, actually laughing.
My quip didn't age too well - it was less than 72 hours later that news broke that Chomsky has lost his ability to speak 😬
In unrelated news: gee whiz, Joe Biden and Donald Trump are both looking pretty spry and I think they'll be in good shape to survive up until the the election. Also Keir Starmer and Rishi Sunak seem to be completely safe from the risk of getting Shinzo Abed. Erh-herm I said...
I appreciate all the recommendations! I've been stuck in a stressful period so I haven't really been stimming as much lately which is also contributing. Im still learning a lot about my stimming behaviors so I will try out your advice. Ive already incorporated a lot of yours and others suggestions (weighted blanket, eye mask, noise cancelling headphones, blackout curtains, oscillating fan) which I guess just underscores how much work I need to put in on just general sleep hygiene but I think finding better sensory inputs and engaging in more stimming behavior can go a long way to regulate myself better.
Yeah boiiiii, let's fucking go!! 💪
Well done. You should be proud of yourself, I'm genuinely elated to hear about these positive changes that you have already made in your life.
This might sound goofy but one thing that I allowed myself the time and space to do early on after I realised that I was autistic was to really explore my sensory experience, (a lot like a toddler would lol); for example I would touch a certain fabric and attend to my body's reaction to it, then I would touch another one and see if my response was different. Or I would smell different things. That sort of thing. I also took note of the subtle ways that I would already stim which were very concealed, even from myself, and then I would make more of a conscious effort to engage with these behaviours, especially if I instinctively started doing any of them.
This is pretty autistic of me but I also started to create a categorised list of things that I noticed that I really liked on a sensory level, the stuff that gave me sensory joy. This also helped me to understand the commonalities better, it gave me a chance to identify the core traits of certain sensory experiences, and it helped my ADHD arse remember what I liked.
I haven't even thought about this list in forever, until just now. That's because it provided me with the scaffold to (re)develop my connection to my sensory experience and since I have done that, these days I can tell you with a high degree of confidence what I'm going to really enjoy on a sensory level and what I'm going to be really averse to just by looking at it; I don't need that structure anymore.
Of course it's usually easier to identify the things that you find repellent on a sensory level so if you're not sure where to start, you can always start with the negatives and sometimes they'll provide you with indication of what you will probably like since it's often on the opposite end where you'll find those things. Not always but commonly enough.
It might be something to think about.
I've been stuck in a stressful period so I haven't really been stimming as much lately which is also contributing.
I am not diagnosing you here and I don't mean to cause any panic but this gives me a pretty strong sign that you might be in the early stages of burnout.
This is not a certain thing, especially not without knowing more, but this + sleep disturbances does point in that direction imo.
The most important thing that I want to impress upon you is that you're already doing the right things.
The second most important thing I want to impress upon you is if it's in the early stages of burnout then you can mitigate its severity/duration, or potentially even prevent it, if you allow yourself enough time to recover, to get your sleep back in order, to reengage with stimming, to really focus on things that give you energy and inspiration and a sense of calm, and to reduce your levels of stress and some of your committments and demands where possible.
The third thing is that I could be completely wrong about this so if the idea of autistic burnout doesn't actually fit your situation then ignore this advice.
Lastly, you're doing great and I genuinely mean it.
Oh I'm already a couple years deep in burnout already
I appreciate all the kind words and encouragement, I do think I have been neglecting self-care to address some life stuff that can wait a bit so that I am ready to address them without worsening my burnout. I'm moving in the right direction now though! Thanks again and to everyone else as well
You're welcome!
Oh I'm already a couple years deep in burnout already
Well, shit. Sometimes I genuinely hate being right about things. Autistic pattern recognition can be a hell of a thing.
There was one person I worked with who showed all these signs of sudden onset MS but spent months struggling with this "mystery illness", where all I wanted to do was to scream out that it was MS but I couldn't so I held my tongue. Of course, she eventually told me of her new diagnosis and it turns out that it actually was MS. The full story is actually kind of a wild and I don't think I've ever told anyone about it before. Sometimes I wish I could turn the pattern recognition off because it's stressful as fuck and it requires extra masking.
Idk where I'm going with this. I guess parting advice would be to strongly encourage you to keep at it with self-care as your primary focus; if there's one thing that life has taught me it's that autistic burnout is similar to addiction in the sense that you will think you have hit rock-bottom but if you don't do something about this, it will surprise you and show that the lows can get even lower still.
I don't mean to come off like I'm some doomsday prophet trying to terrify everyone but it's too important to not warn people about this. So yeah, keep on prioritising your wellbeing and recovery and you will be okay.
Id suggest melatonin. My kid (also AuDHD) gets it most nights because they get restless and struggle to get to sleep without it, to the point they get frustrated with theirself.
Ill also use it when I have a something important the next day. I'll normally toss and turn and lay in bed for hours restless but a kids dose of melatonin and I'm off to sleepy land without fuss.
I definitely suggest starting with a kids dose if you're gonna try it. Personally, I find sleep aids get less effective as the dose increases as I get kinda trippy and loopy which makes me restless.___
Heavy lifting. Get you a big heavy bag, pick it up, carry it around. Cardio I do not belive will help you in this. It is good for you though. Lift big, eat big, sleep big. I don't know how accurate it is but I always liked the pop evopsych explanation that adhd peoples evolved to be back up and warriors. I don't know if it is accurate but it feels right that my body is waiting for something big to pop off so I can jump in. The delayed sleep phase would be useful so that someone in the meadow was watching the settlement when other people were less awake you know? So doing some heavy lifting is close enough to a cattle raid that my body is pleased and I can go to bed.
The other comments pretty much cover everything. No caffeine or alcohol, take a low dose of melatonin (I take one that also includes zinc and a couple of other things), and try to keep a steady bedtime. That last one is the hardest of all. I set an alarm to take melatonin and get ready for bed so I don't accidentally stay up too late.
I also smoke weed every day and have had great success with taking CBD for sleeping during breaks. You can even get CBD/melatonin combos, but I've never tried one.
When I need to reset my sleep schedule I'll make myself as physically busy as possible for a day and hope that I'm exhausted enough to fall asleep.
A couple things I haven't seen mentioned.
Get a smart watch that tracks your sleep. I like the Samsung Galaxy, but there are much cheaper options, like those from amazefit. This will give you a baseline of how much sleep you're actually getting and an idea of the quality as well. Being able to quantify it has helped me get substantially more regular sleep, and showed me how much I actually need. Plus the vibrating alarm is better for actually waking me up, and I can set an alarm to remind me to get ready for bed.
Use a meditation app with some comfortable Bluetooth headphones. I like insight timer. I hate meditation, and particularly those 'body focus' ones. I'm already hyper aware of my body, but there are plenty of options and they do really help you get to sleep.
