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.
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?)
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 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!
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.
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…