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What's so bad about bedtime??

Apparently some people just go to bed and fall asleep. I’ve also heard that there are parents who just tuck their kids into bed and go have a couple hours to themselves because their kids are, like, fine with that. And they even sleep through the night! 🤯

But if you or your child are autistic/ADHD, there’s a good chance this sounds like some sort of fantasy world to you. You’re probably at least a little jealous, too. Because it’s a well known thing that neurodivergent people struggle with sleep, whether it’s the sleep itself that’s the problem or something bedtime-adjacent.

So here is a non-exhaustive list of possible reasons why bedtime is so hard, along with some things that might help.

An infographic entitled “What’s So Bad About Bedtime? (Part One)” by Autball. Sixteen white boxes with black text contain the following:  I don’t feel safe alone; I don’t want to face what’s coming tomorrow; I wasn’t done with my day, there’s so much else I’d rather do!; No really. I wasn’t active enough and I have a bunch of energy left!; I’m scared of my dreams; I didn’t spend enough time with you today; Something/someone is missing; I’m mad that my body even needs sleep; You told me/asked me/expect me to go to bed, so no; I hate lying here awake while everyone else is asleep; I can’t turn my brain off; Problem w/something in the routine (bath/brushing/changing clothes/etc); There’s a physiological reason why I can’t sleep; I’ve been holding stuff in all day and now it’s allllll coming out; I can’t get comfortable (sensory hyper/hypo-sensitivity); I don’t like my room. It’s: too dark/too bright; too loud/too quiet; too lonely/too crowded; too busy/too plain; too warm/too cold; too sparse/too cluttered; too smelly/not smelly enough; just not comfy.
An infographic entitled “Things That Might Help With Bedtime (Part Two)” by Autball. Sixteen white boxes with black text contain the following:  Room share (with you or sibling), allow to sleep with pet; Empathize, talk about ways to make it easier, reconsider their schedule; Empathize, talk about all the things they can do tomorrow; Do something quick to burn off leftover energy; Talk about good things to dream about/ways to defeat bad dreams; Do more bonding things during the day, spend the time now; Find missing item/do missing action/call missing person if possible; Empathize with frustration, research what happens without sleep; Collaborate, compromise, model instead of tell, wait until ready; Stay with them until they fall asleep; Reading, sleep meditation, relaxing app, listening to podcast/music; Troubleshoot specific thing in bedtime routine that is hard/unhelpful; Consult a physician about sleep aids/treatment for underling ailment; Be a safe space, co-regulate, listen, empathize, talk about it; Troubleshoot sleep environment: different sheets (softer, less wrinkly, more slide-y, warmer/cooler); more pillows for comfy positioning; weighted blanker/stretchy sheet; try different pajamas, or not pajamas, or nothing at all; change lighting (blackout curtains, night light, colored lights, projector); redecorate/declutter; white noise/soft music/reduce noise; room share/give own room or space; remove bad smells/add good smells.

A few additional notes, if you don’t mind:

It’s highly likely that you or your child will struggle with more than one thing on this list, so don’t stop investigating after the first thing you hit upon. Also keep in mind that new things can pop up at any time.

The sensory aspect is HUGE. It could’ve made a whole ‘nother graphic. It also doesn’t go away. I still have the same sensory challenges around sleep that I’ve had since childhood. The only difference now is that I have more understanding of myself and more tools to help. So really pay attention to this part and be prepared to accommodate.

Really look at your bedtime routine. I know they say routine is key for autistic/ADHD folks, but that doesn't mean any old routine will do. Your kid/person might need more say about what's in it or in what order things go. You also might have some "traditional" things in there that really aren't helping you out. For example, trying to have a "soothing bath" right before bed really just riled my kids up. Which shouldn't have surprised me, because showering right before bed is sure to keep me awake, too.

“Physiological reasons” include underlying illnesses that cause pain and discomfort as well as neurobiological differences that affect our natural sleep patterns, and they may need medical intervention. For example, digestive issues are very common for us, along with all kinds of chronic pain conditions (fibromyalgia, CFS/ME, EDS, migraines, etc). Common neurobiological differences include Delayed Sleep Phase Syndrome, Non-24, low levels of melatonin, and other diagnosable sleep disorders. Racing thoughts and rumination are often part of our wiring and can’t always be overcome by redirection alone. And let’s not forget that some medications mess with sleep as a side effect.

No one WANTS to have to rely on meds to go to sleep, but sometimes your choices are that or chronic sleep deprivation. If a doctor thinks medical treatment is justified for you or your child, you might at least wanna try it. “Good sleep hygiene” isn’t enough for some issues.

If nighttime meltdowns and dysregulation are chronic, it may be worth looking at how much stress they/you are under every day and reconsidering their/your whole schedule (ie school/work situation may need changing, homework/housework may need lessening, fewer activities and obligations, etc).

I did not include sleep disturbances like night terrors and sleepwalking because they’re not things the person is generally conscious of, and I don’t think there’s much you can do problem-solving-wise besides reduce stress and keep them safe when it happens. I will say that I can remember coming out of night terrors just to go into meltdown mode, and that seemed to happen for one of my children as well.

What that felt like was waking up to my mom sitting on my bed, my body flailing and in some weird position I didn’t fall asleep in, and feeling super disoriented and full of bad energy that I couldn’t calm down from until I got it all out. What that looked like from the other end was my child being initially unresponsive to my presence, then seeming to realize I was there but still being inconsolable. Offering food seemed to help them come around quite often, YMMV.

Lastly, for all you caregivers out there: I know it’s hard, but you may have to accept that your child needs you at night more than you thought they would. Several of the things on this list are best resolved by taking more time at bedtime and staying with them until they fall asleep (or maybe longer). It sucks to give up that nighttime me-time that we’re all led to believe we have coming to us if we just “sleep train” them right (and that we probably desperately need). But again, sometimes your choices are that or continued sleep disturbances and meltdowns and the daytime dysregulation that comes with it. 

I’m not saying you need to give up all your boundaries and needs to help your child. For example, I can’t sleep in the same bed with my super squirmy children, but room-sharing was a workable compromise when we were in that phase. I currently stay with my kids until they fall asleep, but there are time limits on how long I’ll read to them or be able to stay awake. You can usually find a balance that meets both your needs if you are flexible and connected enough. Just remember that more sleep for them = more sleep for you.

And if the only thing stopping you from giving your child more of your time and presence at bedtime is someone else’s opinion about it - well, I have some ideas about what they can do with said opinion.

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