Sleeping on the Spectrum: Helping Kids Rest, Recharge & Regulate

🎙️ In this episode of Neurolicious, we are pulling back the covers on one of the most common yet complex challenges faced by families of children on the autism spectrum: sleep.

We’re diving into:

• Why sleep can be tricky for neurodivergent kids
• The role of melatonin and when it might help (or not)
• How to build bedtime routines that work
• Signs your child may be overtired—and how that shows up in their behaviour
• When it’s time to reach out to professionals for a sleep plan that actually sticks

Whether your little one is wide awake at midnight or struggling with early morning meltdowns, this episode is packed with relatable insights, gentle guidance, and practical tools to support better sleep—for your child and your whole family.

So grab a warm drink, get comfy, and let’s talk bedtime without the burnout. 🛏️💤

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Mummel Road Community Programs is a registered charity offering adolescents on the autism spectrum the opportunity to engage with their community in a meaningful way. To learn more about our charity or donate please read more here

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If you are wanting to share your story with the Neurolicious Community, please reach out to us at info@mummelroad.com.au

Transcript

SPEAKER_00: 0:01

Hello friends, welcome to the Neuralicious podcast. This is a space where we can talk openly about parenting neurodiverse kids. I'm Emily, founder and director of Mammal Road, an NDIS registered autism specific service. I'm also the mum of three kids and my eldest has a ton of neuro spice. And I'm Kylie, I'm a paediatric occupational therapist who has a special interest in ADHD, autism and building connection with kids who don't really seem to like anyone. We are the Brains Trust Neuralicious you need. And we hope the Neuralicious podcast helps you learn a few things and feel not so alone. So settle in for another episode on Neuralicious. Hi, I'm Emily. And I'm Kylie. And together we are the Neuralicious podcast. And today we're talking about sleep. Did you know that sleep deprivation has been used as an interrogation tactic? It doesn't surprise me. Yeah. So yeah. it will mess with you on a psychological level. Why is sleep difficult for kids on the spectrum? Great question. So we've got some really great research that indicates that kids on the spectrum don't actually make enough melatonin to support that natural sleepy feeling at the end of the day. So the research also states that there can be a link between the severity of autism and the sleep difficulties that kids face. So there's a really interesting combination of things going on there. So how does Charlie B sleep? look he is a great sleeper and I don't think it's anything necessarily that we've done I mean I'll take full credit yeah absolutely absolutely no he's he's got a great routine but we have always been quite into routine I guess from the really early stages that was helpful and whether that was a horse and a cart thing um but he might just also make the normal amount of that sleepy hormone so i think that's a buzzword but too right routine because even with my kids i find that there's a window like if you can get that window of where they're ready for the wind down to bed yes sleep seems to be more achievable than if you push them past it yeah you mentioned melatonin What is melatonin? It is a word that we hear often. So the University of Adelaide have released some research and they've worked together with the Sleep Foundation. And the definition that they release is that melatonin is a hormone that's produced by the penile gland in the brain. And I... Pretty sure I'm saying that right. Can you just fact check me there? Yeah, I will. Yes, correct. You're saying it right. The melatonin levels in our bodies vary in a 24-hour cycle. And what we notice is that its production in the body is reduced by being exposed to light. And then the level is increased at night when we have less light available to our eyes and our brain. So this is why it's often referred to as the hormone of darkness. Oh, I like that name. Yeah, me too. Yeah. So there is a bit of a fun fact about the word melatonin. So the word itself means skin whitening, and this is due to how it affects the skin in some animals, but this does not have the same impact on humans. We also noticed that some plants have small amounts of melatonin in them as well. So I did a bit of a deep dive on this, Kylie. Yes. I'm pleased to hear. Yes. And I found out that pumpkin actually has some Oh, I can eat pumpkin. I can come at that. Like if I get to eat pumpkin for dinner and tick the box of getting a little bit of extra melatonin, that's awesome. A hundred percent. Like it's tasty. Yeah. Do you roast it or do you? I love roast pumpkin. So melatonin shouldn't be confused with melanin, right? Because melanin is what leads to the skin darkening. Yes. Yes. The words sound similar, don't they? But that's a great point to raise. They're very different. Yes. Yeah. So that's, yeah, that's really important. It's interesting they're similar though. They sound similar. Yeah. But yeah, definitely melatonin is a topic that I hear a lot of people discussing at the moment. It seems to be really, is it in the zeitgeist? Look, I would agree with you on that. Yes, I mean, I don't know if it's something that we're just hearing a lot ourselves right now or if it's always been spoken about, but I feel like I hear it in conversations at school, in our world, in our clinical world, in my friend group. So it's great that we're kind of exploring it today. Yeah, absolutely. It's really interesting with the impact of sleep and kids on the autism spectrum because we know also that some kids may not be getting sleep enough sleep and actually in the day they present with really hyperactive symptoms rather than looking tired yeah right so that's the other thing we need to explore that sometimes when you look at somebody their presentation might be all over the place like they're jumping off the walls but they're actually exhausted and they need support to slow their bodies down so this would be a good example of when a medical practitioner listening to parents should actually consider the child's problems with sleep could be related to a physiological issue and not just the environment. 100%. Yeah, definitely considering that link with the lack of melatonin production, really important to explore that. But it's not, as we'll discuss, it's not just about them putting them on supplements either. I think that medical practitioners do need to be really conscious about listening to families' concerns about sleep because, yes, it could be something within the child's body as well as environmental factors, but we need to always consider that link between melatonin production and the diagnosis of autism spectrum disorder. Yeah. I think it always just comes down to that holistic approach when ticking so many boxes, I guess, just to make sure. Exactly. The ideal environment for good sleep. That's right. Yeah. Exactly. Yes. So Kylie, we do support in our work families all shapes and sizes and you are a beautiful mum yourself of three beautiful kids. Oh, thank you. Yeah, I know. Can you give us a rundown on your experience with sleep or lack thereof? Yes. What's your life like in that capacity? Well, like you, in the beginning I was very rigid on my routines and I had this quirky little thing of three days created a new routine so when the kids were young I was probably a little bit well a lot strict on my kids go to bed at this time no I'm not breaking that I'm not going out for dinner after this time so love boring oh I know but I was like they're gonna be cranky you're not gonna get the best of me I'm gonna have to pay for meals exactly no one's gonna eat no like so and I was like I want my kids to be asleep. Again, I don't know if I was just fortunate, but sleep really hasn't been that big of an issue in our house besides my youngest always wanting to be near me. So we inadvertently co-slept for a lot of her life just because she She'll go to sleep a lot quicker if I'm there and we're both very noisy sleepers. Yeah, right. So I kind of went, well, instead of Matt always complaining about me talking, walking, drooling or whatever, then I'll just sleep with Penny. Yeah. you can have a night but i did want to talk about i went to the dietician earlier this week oh interesting yes um and she really discussed like how diet choices and sleep quality really impact each other interesting yeah and how it can be a a slope i guess that like if you don't have good diet choices then your sleep sleep quality is impacted which then rolls on to making more diet choices that are instant gratification and it sort of cascades on um and yeah you know even it's been like four days and i've really changed what i've been eating and amazing i feel like i'm waking up easier and that's more of my problem like i can go to sleep quite quickly but it's always the waking up of dragging myself out of bed yes to then perform for my kids yeah yes what I need to in the morning and that's the hardest thing because if I'm dragging myself out of bed it sort of is a flow-on effect yeah so just with that food going back to the food thing so was it things like at the end of the day maybe looking at is it heavy or like protein dense food or carbohydrate foods that we look at at the end of the day versus high sugary foods? Yeah, well, it's for me, it was more the structure of food. I've never been great with breakfast. Oh, right. And because I'm out and about, I wasn't great with lunch. So I was really... You were starving. No, I'm just going to have to make a confession. Oh, dear. Here we go. Right. Listen in. Grab a cup of tea. For the last 12 months, I've probably, my lunch has consisted of a twirl and a bottle of Coke. Kylie. I know. No wonder you're not sleeping. I know. I know. I'm not even like in this area of dieticians. And as I got older. further and further into this habit my body started to crave sugar more and more so I was adding in an extra sugar into the coffee in the morning or putting sugar on my cereal and okay that's so it was so bad and you know what's happening but when you're in survival yeah it's really hard to hit reset So I went to the dietician. She gave me some great tips, just ideas on foods that I can sort of eat. And I've started to meal prep. So I've definitely had lunch like on the road, but a warm lunch with rice in it and chicken because I'm also a celiac as well. So it makes it a little bit more difficult with the sandwiches. Yeah, I think we need to do another pod about food because I This is a huge thing. I mean, picky eaters. Definitely get a specialist in to discuss it with it. I feel like there's a lot of things that we don't want to hear, though, about it as well. Like in your case, you've really fessed up and faced it. Yeah. But when you're in a habit, it's tricky, but it's important to really unpack the impact of your food choices on sleep. And as a lady with ADHD, I hate sleep. routine because it's boring, but I thrive in routine. Like if I can have the routine, I just function better as a human. Although it's nauseatingly boring. Yes, I know. We could spice it up a little bit, I guess somehow, but I guess, you know, it's, Maybe that's a reward. Like if you have the morning routine, then you've like done your day. Oh no, I can't reward myself. Like it's just, you just have to accept it, have the routine. Because if I let, this is what, like the twirl and coke thing was patting myself on the back. But I don't know. doing one of the things that I'm just meant to do as a human yeah and it just devolved into a habit going back to sleep if I'm well rested and feeling really positive it's so much easier than tired worn out exactly yeah so it's again that holistic thing oh yeah I think sleep is our core yeah like if we've got the sleep thing everything else is more manageable yes so just with back to some of the research that we did find. So the Children's Hospital in Colorado state the impacts of lack of sleep on kids can impact physical outcomes, including obesity, neurocognitive outcomes, like memory, attention, and intelligence, and sometimes academic performance, and emotional and behavioral outcomes, including externalizing behaviors or internalizing, which means quite feeling sad and withdrawn. So that list is just pretty significant, especially in our work but also in our families. So Kylie, in our field of work, which is occupational therapy and behaviour support, we work alongside children who can be already presenting with some of these behaviours and symptoms and then adding the lack of sleep or sleep quality can really exacerbate some of those existing behaviours and habits. Yeah. Because like sleeping... helps you cope. Yes. Like it's like the foundation. It is. And you just cannot cope with little things that change the plan. Yes, exactly. Like little things that usually wouldn't affect you at all can really send you off the deep end. Yeah, yes. When you're really struggling with sleep. Yes, agreed. And I don't think that it's really addressed enough for new parents. I agree with that wholeheartedly. I can remember sitting there thinking– It's like letting me on the road. Like I've had no sleep. Yeah. Yeah. This baby has cried all night and it's just completely appropriate now for me to hop in the car and drop my toddler. at preschool but that's on me yeah but nobody like there's no village here no one's coming and helping me through the night or you know what I mean absolutely it's really scary and I guess that leads into the fact that early childhood providers like preschools and play groups maybe they should be really well equipped with support about sleep and information about sleep because of that flow on effect and just the well-being of parents my goodness but also I don't know about you but when I'm sleep deprived I find it really hard to take advice Like it's just like I've tried that. I've tried that. I've tried that. Well, we get a lot of that with our work, don't we? Yeah, it's just definitely one of those pushbacks of like I'm doing the best that I can. Yes. And when you're stressed, your kids pick up on your stress and then they don't know what they're feeling but their sleep's affected because your sleep's– and it's just it can be quite– a hard time. Yeah, yeah, definitely. When people aren't sleeping. Yeah. So then again, back to some of the strategies, I guess it would be really great to think about some things that we know and research that can be recommended for parents to include in that evening routine to support kids getting to sleep. Look, my husband has bought this, all I could categorize it as is a novelty, but it actually works really well. He has the lights that dim. But it's controlled on his phone. Yes. So at a certain time of the night after we've had dinner, he just dims all of the lights. Awesome. In our living room. Yes. To just like a much more subtle light. Brilliant. And that seems to work. As much as I hate it and I didn't want to be the one to bring it to the pod, social media and screens, like those lights are just too much. Yeah. And it's giving us that artificial it's still daylight. Yes, it is. And it is also making our brain race much more than what we think it is. Yes. So, yeah, I reckon like reducing the light for two hours before bedtime, this is a major factor in all research studies related to sleep. The brain responds to the decrease in light and it signals the body that sleep time is approaching. Okay. Even if your body isn't making enough melatonin, this process can help the brain to have the prompt that sleep is coming soon. I think that's really important you brace that because even if someone is not making enough melatonin themselves, this process prompts the brain in the same way. Yes. That's exactly what we're doing. And it makes that routine, like the brain is predicting the routine of sleep. Reduce movement and excessive physical activity two hours before bedtime because this helps the body to feel calm and settled. I can see the parents of kids with ADHD eye-rolling at me at this idea, but it does have the research to back it up. Something to be mindful of is that you can do excessive movement and exercise all afternoon if you want to to wear the kids out, but this needs to be reduced two hours before bedtime. that's interesting isn't it so that the fact as you you know you are a active person yourself you like so does your family you're just quite active I guess and you would do sport and movement in the day yeah that's fine but they definitely those last two hours is that time to reduce that body bodily movements where we can and that's really interesting I mean I think that that is something that we need to explore because I think kids sometimes use it as an excuse to do things like to avoid yeah the routine and going to bed they want they jumping around they're thirsty and all that sort of thing but again we can be really mindful that we need to reduce that yeah I even notice in my 13 year old the days where he goes swimming in the afternoon, he's ready for sleep and will go to sleep and be calmer, where the last few weeks or months really we haven't been doing swimming and he has had that difficulty with falling asleep and he has the stress then of I'm only going to get seven hours of sleep, I'm only going to get six hours of sleep, which then makes your mind race. Yes. So although I'm here for it, I know that routines are frustrating, having a nighttime routine is so important. Like having dinner, having your bath or your shower, getting into your pajamas, screens away. And then like sitting with the family. Yes. Or reading a book or something before bed. Yes. But definitely slowing down as you get closer to bedtime. Yes. Yeah. I think that's really interesting. I, Really great thing to raise. I also feel like sometimes we think about the evening routine and people might think that it's a 30 minute thing. But when you actually talk to parents that are doing this, they actually, it's like a, it's quite a long process. So they might start slowing down almost three hours before actual sleep is expected. So that's things like meals, showers, books, no screen. So they do all of that over quite a long period of time. And that's been really effective. And we, we know that. So just, I just wanted to go back onto the screen thing because we've chatted before about your Revenge procrastination. Yes. So with your home, are screens out or you try to put them away? How does it work in your home? Like how do you interact with that? And are you in your screen watching that at night? Yes. And look, we are unfortunately for my children about to make a big change. But what I've been finishing. Are you having another baby? Oh, God, no, no, no, no. Three is great. No, the big change will be that the screens are going to become more limited in regards to going to bed in the mornings. I have really been in survival mode probably for the last 18 months. So a lot of the routines that I had instilled in my kids have gone by the wayside because they do when you're just surviving or coping. Yes. And I have really let the screens... get out of hand. So my kids will watch their screens right up until I'm like, okay, it's lights out, it's time for bed. My eldest is really the only one that it affects and he's old enough now to acknowledge that. So he sort of moderates himself, I guess. Is moderate the right word? I think it's the right word. Where the other two are similar to me and can fall asleep quite quickly, it's the other end. of waking up that they struggle with. And also screens first thing in the morning aren't great. They're not a great thing. Like you should be doing other things that get your brain moving and those chemicals flowing as opposed to that passive dopamine hit that you get when you're watching the screen. Yes. But back to your question with me and my revenge procrastination, again, I think it's a habit of– Everyone demands so much of me that I'll lay down and TikTok demands nothing of me except my attention. Like I want to get off it. I really would like to eradicate social media from my life if possible, but I know it's not because I'm a social being and it's my passive connection to the outside world. Yeah. I think moderation is smart. We can do moderation. Well, yeah. I can't. True, true. No, but like it's a very slippery slope and there's times where I've deleted it off my phone and I've done quite well. Yeah. And then I just download it again and I'm back into that. I mean it could be like a treat. I guess eventually we might get to a point where it's a treat for you and you can be like it's a Friday night treat or something like, you know. I definitely just think I need to move away from just before bed. Yes. Like if I can sort of. bring it back old school and have an alarm clock in my room and my phone in the kitchen, that would be a great compromise. Like my hopes and dreams for my family would be that everybody's device is outside of their bedrooms. Definitely. Oh, look, I would agree with that. I think that's a healthy practice and we definitely recommend that in our clinical practice as well. Yes, yeah. Yeah, so my son asked for a PS4, whatever, PlayStation 4. And for his birthday. So we're looking at that next year. And he said, I'll set it up in my room. And I just, we just have no screens in room. policy now they don't have phones yet but that will be coming eventually yes but we just set that and i said no no we'll have a nice space we'll do that outside of the room but it's not in your room so and he was fine with that because he wants it but that was a really good conversation i think one that we have with lots of our families that it's this is a sleep space like rooms are a sleep space so well and i definitely like when i'm giving recommendations i'm giving you the best possible scenario yes by no means am i telling my people and yeah clients that this is how i do it like i know yeah my shortcomings yeah we all have them and there are ideal times and there are times where you are just coping 100 and let us help you through the coping times yeah that's great and the circle of change like the process of change you need to be ready yeah are you ready with just back to the twirl and the coke I haven't had yet. No, I've been so good. That's a great way. Circle of change, right? Yes. As you come off the sugar, it's not as appealing. Yeah, well, it's really interesting talking about the sugar because we notice that sleep quality is better when there's less sugar in your blood. Yes. That's, you know, reasonable. And then also those hormones. carbohydrate and high protein foods can support longer sleep and quality sleep and the other thing that I wanted to just jump in on and state is about that morning time yes about the importance of being getting up with the sunrise so we've chatted about melatonin we spoke about the fact that our body will produce less of it when it sees light. So in the morning, ideally, the sun comes up and the melatonin is decreased and we're ready to wake up. That's what should happen. So I just wanted to sort of touch on that, the fact that in the morning, how we interact with getting up has just about as big an impact on sleep as what we do at the end of the day. So we really need to get that circadian rhythm going. under control which is go to sleep without light and wake up with light so yeah that's just an interesting thing and that's why i brought up that your situation with your revenge procrastination and scrolling because goodness me there must be lots of people out there that do scroll themselves to sleep for lack of a better term absolutely and especially my adhd adults out there yes yeah i know i listen to mama mia out loud and mia friedman she has adhd and she says oh i love to scroll so much that my phone usually hits me in the head as i go to sleep yeah and i can totally relate with that yeah we can we need to unpack dopamine i think oh i love talking about dopamine and serotonin yes i love it yeah i think that's a lot because i do love the I love listening and exploring them and having the impact that they have on our habits. Oh, my goodness. What a thing. Yeah. So just going back around to the nighttime routine and before starting dinner and bath and all of that, just being active with your kids outside, a game of soccer, a game of touch football, even a game of tag. is really fun. I think play for adults is just as important as play for kids. Going for a walk or a bike ride or a skate is also good. Yeah, I agree with that. I think that afternoon time, that connection is wonderful. Yeah. And also that it might have to be a step thing. So some kids might not overly be interacting things yet but it could be like a step for example let's go check the mail or let's walk just to our street to see if there are any cars there or how about we just go and blow some bubbles out in the backyard bubbles are great because before you know it you just start jumping around trying to pop those bubbles and you get into it even if as a parent you're just like I am in survival I do not want to do anything yes bubbles oh my gosh how fun how fun are bubbles I know We need to be sponsored by like a bubble company. That would be so good. It's a dream. My kids at the moment are really liking jumping on the trampoline with the sprinkler. Oh, yes, yes. And like, you know, I've got a 13-year-old, a nearly 12-year-old and an 8-year-old, and they have a blast out there just getting wet. I do think on that, though, if you model what you want to see, so, for example, you take a ball out, I reckon there's a huge chance that your child or kids or whoever's there will actually follow you. Yes, definitely. Because we're designed to be with people. If you make it look fun, that can be the best way rather than saying, I want you to come out here and kick a ball. Or I want you to go outside and kick a ball. Like if you're not going with them, sometimes that's a barrier as well. A hundred percent. My kids would never do that. And if I started, everyone's out there. No. Yeah. Yeah. Awesome in setting up for that nighttime routine where we slow our bodies down. And I'm going to put in a disclaimer here because I know people will flood the comments saying, well, that's all right for you. I'm off here doing this with this kid and this with that kid. So our recommendations are in a perfect situation and we understand that. Yeah. But definitely planning around, planning your dinners for those nights where it might be a bit later that you're getting home. Yes. Will definitely help. assist you in getting to bed. Yes. The other thing, you know, some of our parents that we work with actually have things that limit their mobility. And we always do like inside games, for example, crawling races up the hallway. No adult has to move. Keepy-uppy. Thank you, Bluey. Thanks, Bluey. Which is just a balloon that you have to keep up off the ground. It is so fun and it is so contagious in the fun. Musical statues, you just need a phone that has music so there's a whole bunch we'll pop some recommendations floor is lava floor is great oh so much fun but you have to really be accepting that they're going to climb on your lounge yeah yeah true all right sleep well that's i feel like we've wrapped that up like i think that's a great topic and we've explored that but maybe not quite unfinished maybe yeah i reckon jump into the comment section on our posts on our socials and if Like delve more into this. Like if you have other questions or if you want to challenge us. Oh, that's good. Yes. If you've got a scenario. Yeah, definitely. Yeah, I love that. Yeah, we're good. We're great problem solvers. And if you're sleep deprived and you just want to be cranky at someone, jump in. Yeah, yeah. Be cranky at us. Like we totally understand these days. Yeah, yeah, exactly. We're good with that. So feel free to pile on. It's good for us anyway. Isn't it good for the algorithm? Yes. Absolutely. Absolutely, yeah. But I know I'm not even on TikTok. So rage, rage interact with us. We don't care. We'll get the midnight scrollers going and commenting. Okay, that's fine. Absolutely. We're here for you anytime. Okay, keep on laughing, peeps. Have a great one.