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PDA and Sleep Challenges
861 Plays1 month ago
In this episode, Sarah Stewart from the PDA Society is joined by Laura Hellfeld, an independent nurse, sleep consultant and PDA adult, to explore why sleep difficulties are so common for PDA children and adults, and what can help.
Laura brings both professional and lived experience to the conversation. She works extensively with families around daily living skills, including sleep, eating, hygiene and transitions, and she is also a parent to PDA children herself. Together, Sarah and Laura discuss how sleep challenges are often one of the most persistent and exhausting difficulties faced by PDA families.
The conversation looks at why sleep can feel so hard, including the role of anxiety, nervous system regulation, demand sensitivity and sensory differences. Laura explains how traditional sleep advice often does not work for PDAers, and why approaches that rely on control, routine or external pressure can increase distress rather than improve rest.
Part 1 focuses on understanding the underlying reasons behind sleep difficulties in PDA, and reframing sleep not as a behaviour problem, but as a nervous system issue that requires safety, flexibility and compassion.
Key Themes
- Why sleep difficulties are so common for PDA children and adults
- The link between anxiety, nervous system regulation and sleep
- Why traditional sleep strategies often do not work for PDAers
- Reframing sleep challenges as a need for safety rather than compliance
- The impact of poor sleep on the whole family
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, is available through our Training Hub.
You can access it here:
https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
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Transcript
Introduction to PDA Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So, whether you're a PDA yourself, family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
Exploring Sleep Issues with Laura Helfeld
00:00:39
Speaker
Hello everybody and welcome to this podcast on the topic of sleep, which I know will be massively important to many of you. I'm delighted to be joined by our guest speaker today, Laura Helfeld. Laura, would you like to introduce yourself and say a few words about your background and how it is that you're here today? How did I come to all of this? Absolutely. So yes, I'm Laura. It's so nice to meet all of you. I'm an independent nurse and sleep consultant. I came to this work originally into healthcare care to... figure out myself, to be honest with you. There's a few different areas that I found, I've had self-care that I found really difficult growing up, including sleep. And I thought maybe i can figure this out if I study it, learn about it, chat to other people.
00:01:21
Speaker
And then I have a couple of kiddos that are like me. One in particular is my mini me. So I've really had to do a lot of learning and unlearning. So most of my work is in those self-care areas or activities of daily living, which I love talking and helping around sleep.
00:01:36
Speaker
food and eating, hygiene, toileting, puberty, and then a lot around PDA. I'm a PDA autistic ADHD-er, so this group, this charity, these are my people, and so I feel really privileged to get to be here today, so thank you so much.
00:01:50
Speaker
Brilliant. So we've got a double whammy, not only a PDA, but somebody who's interested in sleep. So that's absolutely perfect. Thank you.
Why are Sleep Problems Prevalent in Autism?
00:01:56
Speaker
So I guess it would be helpful if we start off thinking about how big a problem sleep is. and If we start off just in the autism community in general, how how big an issue is it?
00:02:07
Speaker
It seems to be incredibly pervasive, and affecting I feel like almost every single family, of course, like we don't know everyone because not everyone is always counted and what surveys go out there. But know you and I before this were saying there's some number out there on some survey that shows it to be around 83%. And I would say that sounds probably pretty close to what I hear from workshops, webinars, where it's not every single family, but it it's most of the families that come in. So this is this is a very needed area of more research and more affirming research and more affirming particularly on PDA-ers.
00:02:44
Speaker
Yeah, absolutely. And I mean, you know, as as new parents, you know, the first thing people struggle with is the sleep deprivation of having a new baby. you know And then if you factor onto that, the fact that it doesn't resolve itself after three months when babies are meant to settle and sleep through the night, then you know it has a massive impact really sleep deprivation on everybody in the family and the knock on effects with with everything really on a day to day basis. So absolutely so, so important. So what are some of the general factors which can affect sleep?
00:03:16
Speaker
It's such a layered experience, isn't it? um Being a nurse, I always think of, I wonder what co-occurring healthcare care conditions might be underlying here. I talk often of, again, i have not put out formal surveys or formal research on this, but I work with so many PDA-ers and I start to realize, I don't know if I've ever worked with an aide that don't have an underlying medical condition. So it's something that might be there, something that maybe it's been unassessed up until that point, but there tends to be something that's there behind the scenes that maybe is keeping this person up because maybe their blood sugar levels are more unstable, maybe they're in some more pain than we realize. And in particular, if they've been in pain since the beginning, this was actually a true one for me. I didn't realize how much pain I was in until I was older and realized that that that wasn't typical of everyone. I just thought everyone felt that way throughout the night.
00:04:13
Speaker
um Just extra fatigue and going to bed when you're extra tired. i imagine everyone listening to this knows there's those days where you think, I cannot go on anymore. I'm so tired. I cannot believe how tired I am. And then you get in bed, you're like, what? How come I'm not sleeping? Unfortunately, that extra fatigue is also true for our young people where it can actually really impact them not getting into that deep sleep that they're looking for. So that's always on my mind is wondering if there's something we can tease out there to help them or even dental pain.
00:04:47
Speaker
Dental pain is a big one for people because that also impacts that TMJ, that big joint that's near the ears. So we got a lot of ear pain and ear discomfort. And so moving around on a pillow can be really uncomfortable. um Sensory
How Do Daily Demands Affect Sleep in PDA-ers?
00:05:01
Speaker
needs. I mean, I think we can't really underscore how much, how important that is and what we all need in order to feel like we feel safe and comfortable to now sleep. And that's always so personal.
00:05:13
Speaker
The stress and worry, I think that gets brought up so much by families of the young person, their mind is like racing before bedtime. It tends to be a time for most people, particularly it seems like PDA-ers where So much of our day comes to a head, like at this time, that's maybe finally a little bit quiet that the demands go away.
00:05:34
Speaker
so all of a sudden it's a, I have to process everything. And now that is keeping us vigilant, awake, trying to process information to where we're struggling to access that sleep. um communication differences if someone needs some some community communication supports. So we're talking about AAC, the alternative and augmented communication. So anything other than mouth words. And this is something that actually I bring it to everyone because i there's non-speakers and are unreliable speakers. But at the same time, those of us that speak, I have found for myself that actually by a late afternoon evening time,
00:06:12
Speaker
I really need to not speak. And I have learned that I needed to actually bring in some different communication supports at that time. Because if I push through, that's, for me, that time goes up until about 7 p.m. unless I'm working at night and then i somehow manage my day um to do that.
00:06:29
Speaker
I end up kind of over activating my nervous system to where then I'm, i'm i'm my I've made my stress hormones really increased to get through that time versus having that more low key, that chilling time before when I'd be expecting to go to bed. So I want to bring up that one. What else is there, Sarah? There's such a list, isn't there? Yeah, I mean, i mean the thing about PDA and and autism in general is that there can be so many co-occurring conditions So, um you know, and I'm not talking about neurodevelopmental, you know, there could be, as you've said, pain from maybe hypermobility.
00:07:06
Speaker
could be that some children are tube fed, for example, or need a fan going. So there's the noise element, all that sort of stuff that goes along with it. So I think really you've covered most of them, um but it's, yeah, a really. It's a big list. And actually maybe the one, the more, sometimes that like the obvious one, that one, that elephant in the room, I forgot to say is the demand of it. super tired I almost forgot to say it. um Going to bed is a massive transition. i mean, a huge transition for any person, but particularly this community of where we like to be in charge. I talk often that it was such a light bulb moment for me of realizing how much I...
00:07:50
Speaker
I just like, I find the self-care areas is so boring and annoying. They get in the way of everything that I like to do. i like to be busy. i like to learn. I like the work I do. i like spending time with kids. I like being the garden. The idea that I have to stop what I'm doing to like go to the bathroom or have stop what I'm doing to eat, or now I have to go to bed because I need a function tomorrow, but I really want to do this thing instead.
00:08:13
Speaker
i find that really irritating. Yeah. Yes, yes. Self care things like as as soon as you do it, it's like the the clock is literally ticking to the next time. And I and I have felt that for years. um So I very much relate to this issue of this idea of the bedtime kind of looming in the background by the afternoon of having this feeling.
00:08:33
Speaker
I actually realized i have this feeling on my shoulders and kind of down the tops of my arms of this like weight of like, I'm going to have to do that later. It's going to hard. It's going be annoying. Like going to be finally in a place where maybe it's not expected that I answer my emails or that most of my kids needs are met. Besides maybe now we're chilling with,
00:08:53
Speaker
And I just have this feeling of like, can't believe this really big last demand is here for me waiting for me. So I know other PDA is bringing that up too. It's a massive transition to go from I'm active, I'm enjoying things, I'm doing things to nothing. but Yeah. i mean, I suppose I can liken it to Sunday evening for me around seven o'clock. I start thinking about work on a Monday morning. and but um yeah absolutely. so yeah, I can remember people used to say, as soon as you hear that songs of praise, which was a program that was on BBC one at six o'clock evening, as soon as you hear that theme tune, it's like, Oh, you can feel the weight on your shoulders for work the next day. So if, if we stay on the topic of PDA specifically, we know PDA is in general struggle with transition so moving from one activity to another and what other reasons might there be for PDA is really struggling at bedtime?
Reimagining Bedtime Routines for PDA
00:09:47
Speaker
um I think there can be since the first thing that popped to my head but some of the social expectations around it and then stuff that we as parents um hear that we need to be doing and i find this so interesting because through my years I realized I was going to be able to access sleep easier if I dropped a lot of those expectations having like a bedtime routine.
00:10:10
Speaker
i talk about this a lot, like in the hygiene work I do of, I find it really irritating to have to do blocks of self-care, to have to do like toilet, wash my face, brush my teeth, blah, blah, blah, change my clothes. How annoying. I'm super irritated. And actually for me, that makes me more and more activated and more and more irritated. It's also a block of sensory input, just everything like back to back to back to back. So I found that my parents would say, you're pretty easy going. Then by the evening time, I just couldn't engage with it. Or I was then running around the house to try to avoid it, you know, kind of, oh yes, I already did that. um And they're like, we're very confused by it. And I realized as an adult, when I was more in charge of myself, I realized that I naturally broke those pieces apart from each other and just try to break up those blocks of demands where I say to people, i am literally wearing the clothes I'll probably sleep in. I will wear them all day. I'll probably wear them tonight. So most of my clothes are like that leisure wear. I can't. possibly fall asleep at any time. um I don't really wear makeup, so i don't have to wash my face. It's just like those things I brought in for myself and I might brush my teeth at some point where then maybe I might still have a snack later because I have some health issues and that gets connected to the food I eat and when I can eat it, eat it.
00:11:25
Speaker
I might not again need her. Like it's kind of this idea of letting this idea of having a bedtime routine kind of move away from that. We're really interesting because so I have my two kids, my oldest is autistic, but not PDA loves a bedtime routine. Like he finds that, like that social expectation of your kids to have this flow through. So they know what to expect and go, he finds that very comforting And he finds that to feel just like he doesn't even have to think about it. He kind of knows he gets this stuff done for himself. And then he has this reading time, hangout time. He does some stretches and then he just kind of naturally dress off. And I'm like, how do you do that? And actually as a parent supporting him, I found it really irritating.
00:12:05
Speaker
Like, are we still doing this when he was younger? And then my younger kid, who's like me, I had tried to slot him into this routine thinking, well, that's what people say you do and realizing, oh my gosh. I mean, you know, boom, you know, this doesn't work whatsoever. And it's so funny because I don't do that for myself. Like, why am I imposing these rules and expectations? And it really took sitting back going, I hate this. It makes sense that one of my kids would hate this too. So i' really been having this idea of we can move away. from those expectations. It doesn't have to be a bedtime routine. It's just stuff you do during this time of day. Yeah. Meet your needs.
00:12:47
Speaker
And i think I think you've raised a couple of really great points there that, you know, bedtime for a neurotypical family is just one activity. It's one seamless transition to getting actually into bed. But if you think about it for a PDA, that going to bed is made up of so many individual demands. Like you said, cleaning teeth, brushing my hair, taking my makeup off. and And even within those demands of just brushing your teeth, that's made up of lots of micro demands as well. How much toothpaste do i put on? do I wet the toothbrush first how long do I brush my teeth for so you can see how oh my goodness it's so overwhelming but have to take all of those individual activities which within them have so many micro activities and micro steps as well so think you know that's that's a really good illustration of why there are so many demands around bedtime um yeah awful
00:13:41
Speaker
It's making me anxious. Can I mention on that a little bit? Because you reminded me of something to reflect back on. it When we're talking about all those steps, it's so much executive function pressure too. So it's it's asking people to be really engaged in activities and critical thinking and taking in instruction from other people, having to process that instruction and having to make decisions about to do. for a long block of time. And there's a word often used in sleep that that vigilance. So people are having to be vigilant in expecting information coming in. So again, I'm asking then people to be on this part of their nervous system that's activated. That's much more on that. Their sympathetic nervous systems having to be like, oh, your parents probably going to tell you something again, you know, or, oh, you have to remember all these steps and actually sequencing takes a lot of energy and capacity.
00:14:35
Speaker
And then we're expecting them to fall asleep right after. And you go, but but actually we need to be the opposite of vigilant. So it really can help support people to recognize those blocks of care for many reasons actually impede that person being in that that part of that safe, comfortable, able to just now kind of flow into sleep.
How Can Individualized Routines Improve Sleep?
00:14:56
Speaker
Yeah. And I think the other great point you made was around that mindset shift that, Yes, traditional parenting is about having a routine and going to bed. um However, that's OK if that doesn't work for you and your child. You do whatever works for you as a family and that might look completely different. It might involve screens, which to most families are an absolute no-no. But actually, let's think about what's the outcome that we're looking for here. And it's that everybody in the family can get some sleep.
00:15:26
Speaker
And does it matter if that looks different to what other families do? No, it doesn't. So exactly. I'm right there with you with that. Absolutely. Screens can be such a great regulation tool.
00:15:39
Speaker
yeah Regulation tool, something that I can just chill out with and help my nervous system relax down and therefore I can access sleep. Yeah, absolutely. Yeah. And I know um on our support service, we get lots of questions about screens. And I think, you know, the societal pressure is that screens are bad after, you know, there should be ah ah a time limit on them. And you can see from a PDA's perspective that, well, first of all, it's a demand. You're telling me to turn them off at a certain time. But secondly, that might be the thing that actually is the exact thing that I need. So, yeah.
00:16:13
Speaker
Okay. Absolutely. Yeah. And again, or thinking about other reasons why PDA children may struggle with sleep. I think you you mentioned, you know, about um parents really putting that pressure on that this has to be done in this way. OK, anything else, Laura, that you can think of that might be a reason why PDAs may struggle with sleep?
00:16:35
Speaker
So I think it really needs to be said, PTAs tend to be discussed as having that more sensitive neuroception, where the idea that our nervous system makes it is making the decision that we don't feel as safe and comfortable as maybe our peers do. And what that really then means is we more heavily rely on our safe people and our safe people to be nearby where our nervous system can borrow or mirror my safe persons. So whether that is a parent, whether that's a partner, whether that's a sibling, whether or not that's a pet, but we tend to need our safe people nearby to feel more regulated. Regulation is a skill. It's not something that we're like born with and it's not something that people just naturally build in a silo and on their own. We learn to emotionally regulate. We learn that through co-regulation. And we just know that the the research coming out, and I would say adult PDAers talk about this quite a bit, is it turns out we just need more co-regulation than other people. And that doesn't go away overnight. So that looks really different for different people. I still bed share with my younger kiddo. And I just view it again, you you said it earlier, is if a priority is sleep,
00:17:49
Speaker
that we get the best sleep that we can, whatever however that looks, that means we don't tend to put in these other goalposts around it. We don't say, well, we're gonna sleep, but everyone has to be in these separate rooms. We're gonna sleep and everyone has to wear these certain PJs. It's that idea of actually this co-regulation overnight could be exactly what they need. If I remove what makes them feel safe and comfortable, that actually means I'm removing their ability to sleep. So we just give them what we
Do Traditional Sleep Strategies Work for PDA?
00:18:17
Speaker
need. And we kind of think about it as a long game, you know, that I'm building the skill for them. And also with that idea of like any other skill, it builds over time, but also that skill, our ability to access that skill,
00:18:29
Speaker
like anything else, like riding a bike or what else am I thinking of, like computer skills, any other skill you learn, that also ebbs and flows our capacity to where families will say, but they were sleeping on their own and now they seem to want me back again. And you go, well, that again, it's a skill set to where maybe something else changed in their life. Maybe there was another transition. Maybe they aren't feeling quite as well. Maybe there's just some worry and they're going to need a bit of that support for that skill today. And that's okay.
00:18:56
Speaker
Yeah, and I remember hearing a really great phrase. There was some parents who were really worried that their children were still co-sleeping with them. And um the ah the person giving the talk said, it's only an issue if it becomes an issue.
00:19:11
Speaker
So, you know, if it's not causing you a problem, don't worry about it. Everybody's getting the best sleep that they can. So it like oh that again, it's that societal pressure. oh they're still sleeping in your bed at that age. It doesn't really. know I know. And I tend to reflect back to parents and on the flip side, are we really wanting kiddos particularly? So we're thinking of neurodivergent kiddos, right?
00:19:32
Speaker
Do we want those kids by themselves in their room in the dark awake? And like, we tend to have more ruminating thoughts. We tend to get more worries. And we think those aren't people we want to be just laying there worrying by themselves, actually. So we're really, really doing them right by them, by and being with them.
00:19:54
Speaker
Yeah. OK, I'm sure many of our families who are listening to this have been advised by maybe health care professionals to attend a traditional sort of sleep strategy training course where they talk about things like rapid return, gradual retreat or body clock shift back. Are you able to just give us a headline about what each of those strategies looks like? And then we can perhaps talk about why they wouldn't work for a PDA. yeah So i'll have to I'll have to try to um go back into my memory. So my my training had stuff like that in there. um
00:20:31
Speaker
And during of which I just more disengaged and kind of rolled my eyes quietly. I think right away for me, knowing this would be the exact opposite of what I would need and could would support me And I know the people that I'm wanting to support, this is not for us. So there's things like, so you mentioned the gradual retreat, that would be the idea of maybe I come into the room,
00:20:56
Speaker
and to where I'm saying my young person needs to sleep by themselves. And i come into the room and maybe I sit on the edge of the bed and you're not, and it's often suggested like you don't talk to them and don't even face them. And then maybe a few minutes later, you then sit on the ground. And then a few minutes later, you like sit in the middle of the room and you get further and further and further out of the room. And to me right away, I was like, oh my gosh, it's just so arbitrary. It's so arbitrary. And when I think about like, if I was not feeling well or if I was scared and if my partner behave that way, i would be furious. And i'd be thinking, I needed support. What was that all about?
00:21:32
Speaker
Yeah, me. um And then you mentioned the shifting body clock one. So that has to do with the idea of, let's say somebody, somehow the family has kept track.
00:21:44
Speaker
And a young person has always fallen asleep, let's say 1130 night. The idea is that whatever you did for that bedtime routine, um you do that exactly the same at the exact same timing. So you go through all those steps at exact same timings to have that kid fall asleep what seems consistently at 1130.
00:22:06
Speaker
And then you would move all those steps to have them shift to falling asleep at 1115. So let's say you started whatever the first start of your routine was, maybe that was going to a shower or bath. Maybe that was brushing teeth. Let's say that was at 10. You would now switch it to 945 to get the person to go to bed 15 minutes earlier. And you would consistently do that um until it seemed like that was a pattern of sleep for that person. would bring it earlier and earlier and earlier. okay Immediately you might hear hear the issues with this is the idea of everything has to be like exactly the same.
00:22:41
Speaker
Everything has to be in the same order, the same timing. i kind of go, I don't know, because even if I think about myself, I go, well, my every day is different.
00:22:52
Speaker
And sometimes I don't get to access rest until two hours later than the day before. And I need that time for my nervous system to come down, relax. And actually, I might not be able to access food because I was maybe more activated. Now it's later than the day before, but that's just reflecting my needs today. so I think particularly for PDA families, the idea of Right away, you might have heard, well, how do I know that they fell asleep at this time, exact time, every time? Immediately you go, this this this doesn't really work with us, does it? And again, it really asks the young person to go through a very specific routine in the same order at the exact same timings every single night ongoing. you go, it doesn't really reflect their day what they need. It doesn't take into account, like what we were talking about before, all the reasons why sleep might be so challenging. It doesn't take in the fact that they might partway through your routine go, yeah my legs are hurting so bad. And you can, you know, where I would want to say, oh let's stop for, you know, let's let, let me help you massage those legs a bit and see if that helps you before going to bed, or maybe actually we need to put a heat pack on them. What do you think we need for just a pain relief. So that way you'll be able to to drift off. It doesn't take those needs into account. So I don't,
00:24:15
Speaker
and yeah um um we know as well that that fixed rigid routine doesn't work um pda is have that anxiety driven need to be in control so therefore there needs to be negotiation there needs to be collaboration they need to be given choice they need to be given autonomy over what that routine looks like and that may change on a day-to-day basis depending on anxiety levels depending on sensory input. So there there's just the needs to be that flexibility. And then the final one, one was that rapid return.
00:24:49
Speaker
ah I think that one has to do, that was the idea. You can tell how I'm like, oh yeah, let me try to remember what that is because of how much I've never suggested it. Yes. um That has to do with the idea of how long you take to return back to your, your young person who is communicating distress.
00:25:07
Speaker
That immediately makes me feel so uncomfortable because it's it. So let's say your young person is in their room and they yell out for you or throw something or use their AAC device to make some sound to have you come to them. And it's the idea that you would go to them. And often it's suggested that you only have certain lines that you say like, it's bedtime, it's bedtime, it's bedtime. And then you only say that and you try not to engage and you shut the door and you leave. And let's say the first time you then don't respond to them for three minutes. And then you would go in and do the same thing. Then becomes five minutes, then eight or 10, or I don't know. It gets longer, longer and longer. And what you might be hearing as you're listening is, doesn't that just teach the young person that you're not going to respond to their needs? So that's why they get quiet.
00:25:54
Speaker
Yeah. Again, when you're thinking of this community who has these intersections with mental health, and physical needs, the last thing I want, what if my kid threw up and they need me? Like, what if my kid is in really big pain again? Like this happens to us and my older one gets nosebleeds. Like I don't want them by themselves. Like that's, and it's also, I try to really also think long-term of, I don't know what they're ever going to do or who they're ever going to be with where they're gonna live or with me or not. But if they ever did, if they ever were not with me, what would I want them to be doing
00:26:27
Speaker
to take care of themselves. Like what would be this life skill here? Or if they ever did have a partner, would I want them not responding to my kid or not responding to someone they care about? It doesn't make sense to me when when you think about it that way.
00:26:40
Speaker
Yeah, and it doesn't really address the fundamental principle that all behaviour is a form of communication. So, you know, we talk a lot on our training courses about the iceberg where only 10% of the iceberg sits above the water and that's the behaviour that you're seeing. Really what we need to be doing is taking a step back and looking below the waterline saying, what is it that's actually driving this behaviour? And address that rather than trying to tackle the behaviour. i.e. the child shouting out for its parents, there'll be some reason why they're doing that. but and it's um It's our job to to discover what that is and and sort that out. so Absolutely.
Balancing Screen Use Before Sleep
00:27:17
Speaker
100%. Yeah. So um if we do touch on screens and sleep in a bit more detail, okay is there sort of any that you're aware of, any research and that shows perhaps, that well, how useful they are for the neurodiverse community?
00:27:34
Speaker
I think there's more coming out to support the idea that I don't know what year it was, but the research that was, that's older now, that was like, all screens should be shut off, you know a couple hours before bedtime, because then you don't make any melatonin. therefore the blue light.
00:27:50
Speaker
And what I ended reflecting to parents is I think, I think from my position coming from experience with research and healthcare care and understanding that there's there's research that comes out that makes for really good headlines and really good quick social media posts. But those are the ones that you really then need to go investigate because we often can't reduce research down to a two word clickbait thing. And it became really easy for people just to say no screens.
00:28:22
Speaker
blue light mat versus having a more layered conversation of, however, we need to consider that there's people who, who really need support for their nervous system in those hours before bed. And actually it's always about balance. It's always about balance. And we also know there's so many adults, this includes like me, where I'm like, well, I use a screen up until very quickly before I go to bed. So I know it can't be true. You know, when you go, I guess I'm, but am I the one outlier here? No, I know that's not true. yeah um So it's always about balance.
00:28:55
Speaker
And talking with families of, and maybe sometimes what the screen is might need to shift during that evening time. Sometimes for some kids when ah families will say, can they play Fortnite up until falling asleep? And I go, well, let's think about it. If they really enjoy whatever game they're playing, that's great. We want them to to feel good. We want them to be enjoying themselves at these different times of day and evening. But if it's something that maybe they're having to be very highly engaged in and decision-making, sometimes that can keep us in more of that vigilant state. So then it's about thinking of, well, for some people then, so not everyone, but some people, it might just need to shift. So maybe then...
00:29:34
Speaker
and They can, there's certain games where you it's more of like a walkthrough, where it's just kind of like chill, kind of go through that. And then you can maybe shift it over to like listening to a podcast.
00:29:46
Speaker
So that way you can still be meeting all those needs. And so many of our young people also socialize in yeah using these games. And like that shouldn't be taken away. And I always think when I hear those broad statements about the screens, I always think these are people who are kind of showing to me that they are not like in it, in our community and don't sit with us and hear our families over what their needs are and how they can access their peers. So I was just, again, everything is about balance. um Making it really strict in her rules around screens often backfires in a way, because if it's something they need, they're going to seek it out and search for it and kind of fixate on it. So then it might be just, again, shifting to, a
00:30:30
Speaker
after however long they want really shifting into a different type of screen a different type of interaction just so it can kind of gradually let them drift off. Fascinating. Okay and so I think we've probably got time for one more um one more not question but chat um and that is really what support is available for families who are struggling with their children's sleep or or adults themselves who do you go to in the first instance?
Where to Find Support for Sleep Issues?
00:30:59
Speaker
That is such a good question because I think it's always changing there's not a lot. And I find it quite frustrating actually, because there's lots of families who I think would really benefit from a sleep study or if they need medication, it can be really hard to access that. But usually first protocol is going to GP and mentioning that there's sleep concerns and then asking for pediatrician advice.
00:31:27
Speaker
If you're going to a GP for any reason, I highly suggest writing, like trying to, um collate or bring together all the information that you possibly can beforehand because I think we all know so I've been here in North Yorkshire is it 11 or 12 years now something like that so I am and I know my experience is represented by lots of other people too where we'll bring up kind of a general issue and because it's generalized it's easier for someone to reflect back well let's just wait and see let's give it another six months and you kind of leave going
00:31:59
Speaker
I didn't get anything here, not sure what to do. It can be really helpful to bring together as much information as you can of, again, how long has this been going on? maybe keeping a bit of a journal around like some, some of the days and nights, or maybe a week or so of of how, how that sleep has been going. What did they need at all these different times, kind of a systems review. If you know the kids in a bit of pain, or if you notice maybe the number of foods they have, you don't, you're not sure if they're meeting nutritional needs, because there's also nutritional reasons why that can impact sleep. So bringing together as much information as possible to kind of try to
00:32:40
Speaker
gently nudge them into the direction of, yes, we do need this pediatrician. i have been trying all these things, bringing it together. I often will, for myself and my kids, make a bigger document and then and then a one sheet one that kind of bullets the things. Cause I think sometimes too, they're like, oh my gosh.
00:32:56
Speaker
you know But want me to be like, no, I have done all these things. I have looked at all this stuff. We do need this pediatrician appointment. And maybe even family history, if you can access that, I know that's different for every family of what information you have or feel comfortable contacting someone. But often there's family information. um, history that can be really helpful for you to know as well, even stuff that's unrelated to sleep, just even some of their other healthcare care issues, because that might lead someone to go, oh I wonder if this is also, you mentioned hypermobility. That's so common. Um, so knowing if there's a family member with like chronic fatigue syndrome, um, or knowing that they are, they have Ehlers-Danlos or hypermobility can also be informing of maybe that's a struggle in the evening time. Cause that's when growth hormone comes out. And sometimes we get more of that joint pain, So all of those pieces coming together can be really, really helpful.
00:33:48
Speaker
Brilliant. Are there any charities or support groups nationally as well that people can access? Yeah, I think the Cerebra team, sleep team does a lovely job. They have some online trainings as well. it's a very small team. I went in and did some training for them on PDA. So some of their work isn't necessarily for PDA-ers, but would work for some other neurodivergent people. And then they are bringing in more around PDA.
00:34:11
Speaker
It's a small team, but again, they put on webinars and I i i believe they're all free. I've attended some of those too. And those have been really lovely. Hmm, nice. Excellent. All right. Well, Laura, thank you so much for your time. It's been absolutely fascinating. um For our subscribers, we will be continuing this discussion on our Learning Hub in a second Deeper Dive podcast, where we'll be looking more at sensory issues and some answering some of your questions that you fed into us as well.
00:34:40
Speaker
So again, Laura, thank you so much. It's been absolutely brilliant. oh Thank you so much for having me on. So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub.
00:34:53
Speaker
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00:35:07
Speaker
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