In our latest podcast episode, we chat to two NHS sleep experts, Debbie Spain and Tasos Galanopoulos. They have a conversation with our host, Cat, to help us better understand the science of sleep and how it might impact autistic people.
In our latest podcast episode, we chat to two NHS sleep experts, Debbie Spain and Tasos Galanopoulos. They have a conversation with our host, Cat, to help us better understand the science of sleep and how it might impact autistic people.
Welcome to the Middle-Town Podcast. I'm Kat Hughes, I'm a research officer at Middle-Town and I'm also autistic. In this episode, we're talking about sleep. It's something that we all need, but some of us, myself included, find it very hard to get a good night's sleep. I'm a two-sleep expert, Debbie Spain, a cognitive behavioural therapist and consultant nurse who works with autistic people and people with ADHD, and, as a scalonopolis, a consultant psychiatrist at National Adult ADHD and ASD Services for St London and Modely NHS Foundation. They both have lots of experience in supporting autistic people to find sleep routines that work for them, so I was very keen to pick their brains. Thank you both, tassels and Debbie, for joining me on the podcast. I'd love to start by finding out a little bit more about the relationship between autism and sleep.
Speaker 2:We tend to refer to sleep and the autistic spectrum as well. Let's start with the autistic spectrum. We say, we mention quite often. It's a condition which is not good or bad or anything like that. It is a different way of perceiving the world around us, a different way of processing information sensory information as well and responding to all of these stimuli in the environment, internal and external. And it's just like sleep. It starts from day one and it's an integral part of who we are. And I guess one common thread between the autistic spectrum and sleep is exactly that.
Speaker 2:Sleep is something we all experience. We tend not to think about it until we have a problem with it, otherwise we just take it for granted. But I often say to, let's say, junior psychiatrists, who are not very familiar with the autistic spectrum if you ask an individual on the spectrum how they feel about the spectrum or how they perceive it, they will probably respond to you in a very similar way as someone else will respond about sleep, and they will tell you well, that's how I've always been. It's always been there. So I don't really understand what you want me to tell you about it, and I think that's quite fundamental to keep in mind None of that.
Speaker 2:Neither the autistic spectrum nor sleep are problematic or problematic as per say. They can create difficulties in our lives depending on, let's say, our circumstances, the demands from the environment or from ourselves, and I guess that's probably a more holistic and a better approach comparing to the very clinical, old-fashioned approach, which we don't like that very much and I think we moved quite a lot from that point. But they're definitely from clinical experience, but also from research and studies that have been conducted so far. There are quite a lot of, let's say, indicators that somehow individuals on the autistic spectrum, their sleep-awake patterns and the overall quality and quantity of sleep is significantly different compared to the non-autistic individuals, and I guess we will talk a little bit more about that later.
Speaker 1:Yeah, it makes sense because I almost naturally think of sleep as a yes-no, binary approach, but it's so personal and so individual, and how it might change or impact you is so personal and I'd never really thought of it in that way before. So that's really interesting. What are some common sleep challenges or difficulties that autistic people might experience?
Speaker 3:So I mainly meet adults in my kind of clinical work, but I'd say some of the really common things that people describe are difficulties getting off to sleep. So going to bed and then finding that as the room is quiet and hopefully outside is quiet, their mind is quite busy, either thinking about things that might have happened in the day that perhaps were a bit more stressful or a bit more anxiety-provoking, or maybe worries about things that might happen the next day or that are coming up and there's almost a loop of thinking of it kind of starts, kind of you know, the what-if questions or the worst case scenario scenarios that come to mind, and I think that can make it really difficult for people to get off to sleep because their mind is so busy and it's almost hard to be distracted from that. I meet quite a lot of women, actually I mean, I'd say men as well actually but people who have kind of difficulty sleeping. So you know they might fall asleep but might wake up quite early, three or four in the morning, and their mind is quite busy at that point. So maybe they've noticed that they're worrying, kind of when they wake up and then find themselves in a dilemma kind of what do I do now? Do I stay awake? Do I go back to sleep? And some people, we all do it sometimes, but we end up kind of scrolling on phones or tablets and then that's really engaging. And so people end up having this long period in the middle of the night where they're not sleeping and not feeling refreshed in the morning.
Speaker 3:And then I guess a last thing that seems quite common is when I meet people who feel quite down in their mood, so depressed or low in mood. People have difficulties kind of getting up in the morning, so they might be awake but not feeling massively kind of alert and refreshed, but might spend quite some time in bed, like a couple of hours, even longer maybe, where they're almost kind of thinking about the things that need to be done in the day. But when our mood is low, everything feels quite effortful, doesn't it? So people?
Speaker 3:I think sometimes people describe feeling a bit stuck, that they know that staying in bed is not massively helping them, it's not making them feel better, but that hurdle of like throwing the duvet off and climbing out of bed and starting the day feels really like too much mood-wise and maybe anxiety-wise. So again, that can sometimes put people off, like going to bed. They feel like if they go to bed later they might wake up later and they lose less of the day. So I think to summarise that I think people have difficulties getting off to sleep, staying asleep and knowing what to do when inevitably people wake up because we all do sometimes. But then that morning, like starting the day, can be quite tough.
Speaker 1:And would you find that they're specific to autistic people or maybe more common in autistic people or just across the board? They're the issues that you see people struggling with.
Speaker 3:I mean, I don't know what Tassel thinks I would say on average so not every autistic person who I've met but I think people are less likely to mention sleep difficulties to someone else. So whereas if I haven't like a lot of us probably haven't slept very well this week because it's been so hot I might text someone and moan about it I think maybe an autistic person might be less inclined to share something about their sleep with someone else, because this, as Tassel said earlier, it's the thing that we just do every day. Hopefully it feels so kind of innate that we don't think to mention it. So I think people are kind of stuck with that and that gives less of a way out. So if someone's kind of ruminating or reflecting when they go to sleep, they might have fewer strategies to draw from. That might be useful and they might mention it less to other people. So have fewer strategies suggested to them. They're my initial thoughts, tassel. I don't know if you want to kind of add something there, not to put you on the spot.
Speaker 2:Just to expand a little bit on the world Derby. Third, I completely agree with that. So that kind of links very well with this idea of how do we approach sleep and what do we think about sleep. Because you see, one of the things that we sometimes think that sleep is a very inactive kind of part of the 24-hour society, but actually it's not, for the brain it's so active and therefore so crucial for our well-being and all of that, and sometimes so the difficulties getting to sleep or the frequent awakenings or difficulties going back to sleep, is probably something people can because it's more tangible, so they can actually describe it as communicated easier.
Speaker 2:The last part, which is actually linked to the architecture of sleep and, as we talk about the artistic spectrum being a spectrum, similarly sleep is. You know, it goes in cycles and in different stages and everything, and we may very well clip up for, let's say, eight hours, but if what we call a restorative sleep is not enough, then we end up waking up the next day feeling quite groggy, I guess, not very refreshed and generally not ready, as Debbie said, to start the day, and that kind of has a knock on effect on things like how we perform the next day, how we communicate with our friends and our colleagues and our peers at school and everything, and how much we can take on and how our executive functioning, meaning our attention and concentration, and all of that. So these are kind of knock on effects and they actually originate from this lack of restorative sleep, which is, I guess, a little bit more difficult to describe, simply because it's more abstract, less tangible. But I wanted to add, while listening to Debbie, I couldn't help but to think, just like the autistic spectrum, right, one of the reasons and that's an assumption, but this actually feedback from loads of service users, they say that one of the reasons they don't raise these kind of concerns or they don't communicate these issues to family or their friends and partners and everything is simply because sleep, let's say sleep away patterns or sleep difficulties linked to the autistic spectrum are in most cases, lifelong conditions.
Speaker 2:So they and when something happens regularly and over a long period of time, individuals tend to forget that. Wait a second, maybe this is not how things should be, maybe there is another way and they take it as a given that this is how it is and unless someone kind of provides them with a tool or encourage them to open up and talk about it, then it kind of remains a little bit, you know, it fades in the background a little bit, and I guess that's why we keep pointing out that it's. It goes both sides. You can only expect the other person to open up and tell you about and explain to you everything you need to somehow be aware and create this environment and to enable people to kind of articulate any kind of difficulties they may have.
Speaker 1:Definitely. And that's so interesting because I think being autistic is sort of like an endless list of sort of going oh, everyone doesn't think like that, and constantly learning it. And for me it was the same with sleep, like the two sleep patterns that you mentioned, that we have sort of the 3am scrolling and then also the sort of the mind sort of worrying over anxiety. Both of those things. I only relatively recently realized that everyone doesn't do that. So, yeah, it makes perfect sense.
Speaker 3:I thought of two other challenges, if that's right, going back to your question about perhaps specific or more specific for autistic people. The first is I was thinking that some people live somewhere very quiet, very rural. There isn't really a lot of sound, there's not kind of new sounds. You've got the kind of the wind or the rain, but you have lorries going past or buses or people walking home after a pub at half 11. So I think some people do describe like sensory or not necessarily a heightened sensory state at that time. But actually when we go to bed and we're quiet in our rooms, we're just much more likely to notice the sounds around us. So for people who are married and share a bedroom or people who live in a house with other people, I've met lots of people who find that quite difficult because they've decided to go to bed to sleep, but actually someone's next door listening to music and other persons on the phone, the bathroom's quite noisy, so someone's decided to have a shower. The washing machine's going in the background because someone in the house needs a shirt for the next day. So all of those like the sensory kind of yeah, there's just a lot of sensory stuff going on and the person doesn't have a lot of control over those things. It's not like they can make the house kind of quieter in that moment. And so I think that can be quite challenging, because then people again either try to distract themselves Most of us will go on our phones, won't we? So we're scrolling on our phones, and then that's obviously alert, you know, making us feel more alert, even if it's not designed to do that.
Speaker 3:And then the last thing I think that could be more relevant for autistic people but is a bit on a tangent is sometimes people go to the doctor. They might have a diagnosis of anxiety or depression. They might be prescribed an antidepressant medicine or maybe an anti-anxiety medicine or a sleeping tablet. I mean, I'm not definitely not pushing any of these things, but what you might find is that maybe the health professional hasn't fully explained like all of the effects of the medicine or the possible side effects. Like some tablets make people feel quite fatigued, like quite exhausted at the beginning. Actually, the same would be true of medicines for, like, blood pressure or high cholesterol.
Speaker 3:So there is some research that says that some autistic people might be more sensitive to the effects of medicines. Certainly, clinically people do describe that sometimes. But I think if people, if the health professional hasn't fully described what it might be like, then people start to take medicines who are really really like physically knackered for some days and that can quite understandably be worrying for the person who thought the medicine was going to help them feel better. And so I think that sensitivity to like starting a medicine or dose changes can then contribute to either feeling just asleep, really knackered all the time and maybe having a sleep in the day and that really impacts on sleep at night time, or it might be just feeling really incredibly groggy in the morning and wanting more, you know, sleeping for 10 hours or 12 hours and then that again also disrupts that sleep like cycle that Tasos mentioned before.
Speaker 3:So I'm supposed I'm moving into more strategies, but I think that can be problematic and if people don't have all the information about medicines and how it might be relevant for them, I think people don't always make the connection between I started a medicine for my blood pressure and actually I feel really kind of knackered since then, or feel really alerted. Some medicines make people feel actually almost quite alerted and the doctors hasn't said always take it in the morning, for example. You know, don't take it in the afternoon because it might kind of keep you a bit awake. So that might be relevant for some people.
Speaker 1:And then Tasos, you sort of already mentioned a bit about the sort of the impact that inadequate or disruptive sleep can have, but I'd love to hear more about whether there's like short term or long term impact of that from either of you.
Speaker 2:So when we talk about you know our daily functioning and and that's something very dynamic, right, you know it really depends on, let's say, if someone who is in primary school or secondary school or when we move on to you, know higher education and everything, demands a very different life and the same applies you know, jobs and everything. So I guess we always need to keep that in mind, that it's not a blanket approach, right? Yeah, it doesn't mean that the expectations I mean be cognitive or, if you like, academic expectations will be the same throughout someone's life. But it makes sense that when the demands are higher, any kind of difficulties we may have with sleep and especially, as we said, with the restorative part of sleep which then affects how we you know very, very basic functions of our brain, let's say our ability to remember information and recollect them very quickly in a conversation, our ability to filter incoming information or internal thoughts, we may have our ability to kind of filter sensory stimuli and keep them in the background it's compromised, not necessarily because someone is autistic, but simply because the lack of restorative sleep we know that, we know that from research, it's been improved actually does affect how efficiently, let's say, our brain will kind of carry out these tasks and they do sound very simple, but they're so complex because our brain constantly engages in this kind of process. It's not like right now I need to filter and prioritize where I need to focus on and then I don't need to do it later. It comes to me. We do all the time and that's why we don't actively think about it. But it is there so you can see that the moment something starts, let's say, going a little bit wrong, the impact will be.
Speaker 2:Very often people say is it because I'm autistic that my sleep is not okay? And actually the answer is no, not necessarily. So, as Debbie said, the three main factors that people tend to kind of ignore or maybe not take into consideration is any side effects from medication, the sensory processing and also the different kind of habitual patterns which may or may not be linked to the autistic spectrum. So some people are naturally, let's say, morning types, some people are more evening types and the problem can be so, for example, I am not very much of a morning type. But if you, this society is not very flexible with these things and they try to push you to adjust in a very specific kind of timeframe and everything. The pressure to abide to this timeframe which is intrinsically different from your personal, let's say, time clock, body clock and timeframe will create a long term issue, regardless if you are on the spectrum or you're not.
Speaker 2:So and I'm saying that because I don't want, because I've had it so often in the past, and I don't want people to necessarily think of the autistic spectrum, as you know, as it goes from the sleep problems. There are links and there's quite a lot of research around that, but by no means but a kind of translate that if you're autistic, you will definitely the sleep problems you may or may not have are because of the, the diagnosis of the autistic spectrum. So I think that's quite significant to remember when we talk about I don't know if you wanted to add more about the effects of the lack of restorative sleep. You know, late in the day and everything.
Speaker 3:I mean I could have, you can do that. I was just also thinking that sometimes there's an assumption that if someone has like a, they're always a morning person. They have made an assumption other people around them they will always be a morning person, or that if they have problems getting off to sleep now, it's with them for life. And I think the difficulties that people experience with their sleep we all do from time to time. They can change. So depending on the person. You know where the person is living and what they're doing with their day and how they're kind of feeling in themselves. You know they're having a good time or they're having a more difficult kind of period in life. So I think, like if we put into Google like sleep problems, like lots of things come up in it but in a way it can feel quite flat and I think people don't always give themselves the like credit's the wrong word, I can't think of a different word but like the option, like the kindness I suppose the self kindness that this might be difficult now, it might hopefully all get better in time, but actually if another thing happens, that that is kind of normal, that's the normal variation of sleep and for all of these challenges that come with not having enough sleep or the right type of sleep or, you know, restorative sleep, there will always be, like different things that people can try, because I think part one of the challenges possibly as well going back to Cap's point, and then I'll come back and Tassel's point is that it feels quite hopeless, doesn't it? Like everyone I'm sure listening to the podcast will have had times in their life where they just couldn't sleep for a few nights. And you get into this cycle. You think like this is it now, like this is going to be it for like the next 90 years, like I'm never, ever going to be able to get to sleep at like and have six hours or eight hours before I go to work, and that feels, I think, like quite. It just feels like quite real and quite vivid, and I think that also contributes to challenges. And whereas one person might let a friend know or someone else know, I think sometimes an autistic person might feel more shy to contact another person to tell them like this is really bleak. Now, you know it's been like a week. You know, for example, in London at the moment it's really been hot. So I think most people have had disruptive sleep this week, but I think some people may not feel confident or comfortable to let another person know or to ask, like, what are you doing about it? Or just to say this is a bit rubbish and sometimes even that on its own is like a really important thing. But Tassel was asking about like the.
Speaker 3:I suppose the downsides of not having enough restorative sleep I mean things that come to my mind is it is just harder to function. I think like in the day, like practically like most of us have like a short window, especially for not morning people. It's not like two hours to get ready, although I did once live with someone who allowed herself two hours in the morning. I'm more of a like you can get out of the door in 20 minutes and you can drink coffee and you could probably breakfast and have a shower and do all these things. So I think those everyday things that we have to do going to work, doing the effortful things at work, talking to people, answering emails, making decisions quite quickly I think all of that just becomes like biologically it's more difficult to do that because the body's just saying I haven't got enough, kind of I haven't got enough energy here I haven't got enough kind of oomph to do these things I think it can have like a negative impact on mood and anxiety.
Speaker 3:So if somebody already has some anxiety symptoms or is not having, doesn't feel great in themselves, mood wise, I think when we're tired it is much more difficult to make To think through all the options in a situation, decide which is the right option for me. Here I think we're much more likely to jump to a conclusion or kind of go down the worst case scenario in a way like that. Our brain is kind of somehow wired to do that. It's like using the information I have right now like what seems the best option. But we can't go through all those options sequentially when we're more anxious or more down. So I think it can reinforce anxiety, the sense of anxiety and also low mood.
Speaker 3:I think the other thing well, the two other things I think, are one I think it reduces people's like interest in doing things that they might ordinarily enjoy, because suddenly needing to get sleep, needing to get the right sleep, needing to get the right amount of sleep, does just naturally become more of a priority. And so if someone says, oh, would you like to come for a drink or go for dinner or can I come around and watch a video. Actually, even if that would be ordinarily like a really nice thing to do, it's a bit like well, if they come at seven, then they might not leave till 10. And I will have a few things to before I go to bed and then I won't be in bed till 11. And so I think it can almost indirectly like reduce down the options that people have to do things that they like doing and actually Tasks, and I would always say, want people to do more of the things that they enjoy doing more of the time.
Speaker 3:And the last thing that I was going to say is just that I think it can contribute like a sense of hopelessness and like feeling slightly defeated, that actually, when we're really tired, if the day feels more effortful, we're feeling a bit more anxious. We're not feeling kind of that inclined to meet people and do like social things, whether that's, you know, kind of online or with people in person. I think that becomes a bit of a like reinforcing negative cycle of it's never going to get better. It's always going to be like this, and all of us take thoughts like that to bed from time to time, but that having those kinds of thoughts most nights of the week, I think that will have a knock on effect on poorer sleep, so less restorative sleep, and I think it kind of all goes round in a loop where the less sleep we have, the more worried about it we are. The more effortful and fatigue we feel, the less sleep we have. That was a long answer to a question that was perfect.
Speaker 1:I think that will resonate with an awful lot of people, this thing, and I think it's really heartening, though, to sort of think of how it's not sort of that we're predestined to have terrible sleep at the same time. I think that's so important for people to remember if they're listening and they're in that sort of cycle or they're feeling quite challenged by their sleep. It's not something that we're sort of sentenced to at all, and are there some sort of strategies that people can maybe use to sort of help them with their sleep regulation?
Speaker 2:Debbie is really excellent in kind of going through these different kind of strategies and all of that. But the one thing I wanted to kind of emphasize, one suggestion, is there is an excellent article or study I think it's back from 2019. And it talks about the speaking about sensory processing profile and everything. The article is about the sensory over reactivity and how that affects sleep and in simple terms, that means that some people, or some individuals, if you like, who are on the spectrum, may respond to specific textures and sounds and smells or temperature of the room in a much more intense, if you like, amount of comparing to others, and I guess it's the two layers of, if you like, struggle there.
Speaker 2:The first one is when they try to explain, even if they try to kind of communicate that to others. If other people are not familiar or they're not kind of aware of it, they will probably, they're more likely to dismiss it and say well, I think you're overreacting, I think you know you can, you can, you can cope with that.
Speaker 2:And actually they're not overreacting at all. Basically it's it's directly linked to the sensory profile and remembering that and I think it's really important because then it takes away some of this kind of guilt People may feel. As Jeff said, it can prevent them actually from sharing these issues they may have with others, how to feel that they will be bullied or ridiculed or whatever. And someone can start with very simple things If you create a map of the things that provide comfort, I guess, and they help you to calm down and kind of relax and switch off. And these are things that vary significantly from one person to another. So it's a very individualized approach. It's a very individualized approach even when it comes down to how much is enough. Not everyone needs eight hours of sleep, not everyone needs six hours of sleep. The problem is when you you were sleeping, let's say, x amount of hours and that was fine and your performance was okay and you didn't feel that you didn't have any difficulties and everything, and then suddenly something happens and then things are not okay anymore. But that's not necessarily how someone else may feel. So it's very individualized. But things like, as I said, you have to create a map to try to want to say a map. I don't literally mean a map, but I mean at least of things that are wrong.
Speaker 2:I as a person let's say I as a tassels find really calming and relaxing. I will never forget when someone kept telling me look, if you hear I think it was down to the rain or something like this it will literally help you. It will help you immensely to sweet up and go to sleep. Well, I can tell you it didn't help at all. It was making me more actually agitated and I kept thinking well, if this person said it, who knows really well, they are right, but they were wrong. Right, because for me it just didn't work. Something else did work. So that's what I mean when I say to kind of create a list of what works for you as a person and then see how you can, I guess, integrate these kind of things to implement strategies which will then be more tailored to our profile and I guess, if they are more relevant to us, they're more likely to be effective.
Speaker 2:But this and I'm happy to send you the link I got this paper about the sensory over reactivity and the impact in the architecture of sleep. It's a great example of how individualized and how tailored needs to be, meaning the support and the overall management if we want to really kind of help others. There are things we'll talk about diet as well, things about exercise, to avoid intense exercise just before going to bed. Debbie did mention the exposure to blue light especially, but again and I know Debbie probably will kind of tell me off because of that it's very easy to say to someone stop doing this, stop doing that, stop doing that, stop doing that. Well, and we forget that.
Speaker 2:Well, people do not actually behave like this. There's no point coming up with a whole list of don'ts, because then it's less likely that the other person will engage with what you say, because they will think well, you, you almost don't understand where I'm coming from, because you're telling me every single thing I enjoy doing. Let's say, before going to sleep, you tell me don't do that, and so it's not do nothing or do all of that. I guess if someone, if you, if you engage more and stick to them in a little bit more detail, you will find the kind of middle ground where think they already do, you may be able to modify and adjust so they, they have a lens of an impact in, let's say, someone's sleep, but they you retain this sense of reward and pleasure. Plus you help them to kind of develop the skills to be their own managers of their, of their sleep in the long run.
Speaker 3:I think also it is quite important to understand what people mean when they say they have problems with their sleep. And I think, even like a step back from any strategies is when someone describes or you notice that someone has sleep problems, just to find out what that means so for them. Because actually somebody might not think that spending two hours to get to sleep is an issue for them. They're not bothered by that. What they are bothered about is when they wake up in the morning for college or for work, that they just they don't feel refreshed. Or it might be the other way around people don't mind what time they wake up in the morning, but that initial bit of getting into bed and the mind kind of racing, that is just really uncomfortable. So I think finding out what people mean by problems with sleep is like important. Because the more we kind of when I say we like the person, people around them, maybe health professionals, the more we understand about it, the broader the range of strategies. Because, going back to your idea, you know your thought earlier about well, am I just going to be you know, is bad sleep just going to be destiny? It is, I think, really important for people to know that probably everybody in their life term will have periods where their sleep is much better and periods where their sleep is more vulnerable, because our sleep is one of the first things to get affected if we're having a more difficult time and more busy time and more fatiguing time. People kind of now might have COVID and then just be taking longer to kind of feel more kind of back to their usual selves. They might need kind of more sleep than has been usual. But the more we understand about what the problems are and also people's expectations for their sleep, the more targeted interventions or strategies can be. So I think knowing what people mean by sleep problems is the first bit and knowing what people would like their sleep to be like is important because some people sometimes I'm thinking of people who might have a period of depression so typically they've been able to sleep six or seven or eight hours without any disruption They've had. They're now having a difficult time in there struggling to get to sleep but also struggling to get up in the morning. It's like where would that person like their sleep to go? Is it that they hope that next week they will be able to sleep eight hours uninterrupted, or is there a kind of more graded kind of approach to that. But I think another thing to think about in terms of strategies that was part of the question is strategies kind of have to be outside of the bedroom and bed as well as within that space, so they kind of start from the beginning of the day really. That actually if someone's going to be able to get themselves into a better routine with their sleep as much as they can, it does involve trying to get up at the same time most days of the week. In fact actually I think the hardcore sleep researchers would say same time every day of the week.
Speaker 3:It always feels a bit harsh to say that to kind of people I work with. Like on a Saturday and a Sunday you must get up at quarter past seven because that's when you're getting up Monday to Friday. But the more that we can show our bodies that there is this rhythm to our day, the more beneficial that is for our sleep weight cycle. But being able to get up at approximately the same time, staggering meal times through the day, I think sometimes people kind of stave off. They don't have breakfast and they wait a few hours, but already the body's going to struggle a bit more and we're going to have lulls and then it's easier to go for an apple lie down, kind of towards the end of the day and that disrupts the night. So, thinking about what people do in the day and when the activity is some people really like to do stuff in the evening. Some people might find that over alerting or just a bit much. So actually doing the social things earlier on in the day might be helpful.
Speaker 3:I am really not a fan of blue light. I am one of those people that really I don't say don't because that seems harsh, but strongly suggest trying what it's like without blue light at night. That, as Tassel says, if we can't tell people what they mustn't do, it's much more useful to think with people what works for you. So there are dimmest I don't know what they're called, like the technical term, but there you can turn the vividity of the screen off, can't you? You can turn the brightness down on it like a mobile phone or a tablet. So all of those kinds of things are helpful, as well as maybe identifying like what's an activity that I could do after the blue light is gone off but before I go to bed. So something that's engaging but not giving my brain the sense that I need to be awake, I need to be alert.
Speaker 3:I was thinking that if an autistic person is living with other people in a shared space and I know, some people will be able to have open conversations with their like housemates or family, and some people that might be difficult. But actually, if somebody's really sensitive to noise and it is driving them bananas when the washing machine goes on at like 11, 15 at night, having a conversation with people about why that's like really not an optimal time for them might be helpful. Sometimes it's about swapping bedrooms. A person might have the bedroom next to the bathroom, but actually every time someone goes for a shower or to the toilet it's kind of wakes them up. So could they do swapsies with someone else, just so that they're in a room that's maybe a bit quieter.
Speaker 3:And I guess I'm going to go back to this idea of like kindness, like being kind to oneself. But I think also there is a whole range of strategies like we can test and I can send resources rather than just like just listing them. But I think if one thing doesn't work now, that's okay because there will be other things to try. But I also think if something doesn't work like for me this evening, I shouldn't discount that as like that's never going to work for me ever again, because it might work for me at a different point in my life. So there are lots of things that we can do that can be small changes.
Speaker 3:I guess that's the last thing that I will say is changing lots of things all at the same time is really difficult for any of us, but it's also too big an ask, I think, for a person. So having a list of what might be some of the things that I could kind of tweak, just to see does it make a difference, and try that out for three or four or five nights and then move on to something else or add something else in. I think it gives people a better chance now to have a better sleep cycle, but also for the future. Then they've got a much better idea about well, there's just no point trying X, because that definitely didn't work for me, but some of these other things seemed to work, so they might be more inclined to try those again.
Speaker 1:Well then, I love that idea of sort of extending kindness to yourself and, from the start of the day, thinking about how you can be kind to yourself in a way that will impact you later on. It's lovely, it's really nice.
Speaker 1:And then you sort of talked about the things that people around the autistic person can do so in terms of sort of understanding their specific sensory sensitivities? I mean, I as a child always refer to you as the princess on the pee because anything would upset my sleep Any sort of sensory difference? Are there other things that potentially family members could do to support sleep?
Speaker 3:I mean, I don't know if a lot of families with autistic people or families with people without who are not autistic Do a lot of people talk about sleep, maybe just starting to talk about it. We make assumptions, all of us make assumptions about what another person's experiences in their life are like, but we don't necessarily talk about these things that are quite kind of implicit. So I wonder if having a conversation just to find out about what different people in the family find really unhelpful, what they find useful, there's something, I think, validating about that, but also kind of normalising. So a family might be going through a difficult time together. Maybe if somebody has passed away and everyone in the family is bereaved and trying to kind of cope with that and cope with everyday life, people might learn different things that are useful to them. I also think I'm going to go back to this idea of kindness. But if somebody's not sleeping well, they're probably not going to be feeling like 100% on top form the next day, and so I'm not suggesting that a parent or a teacher or someone should massively change their expectations of a person, but I think the expectations of the person should be proportionate to how that person is feeling.
Speaker 3:So if someone's going through a period where they're not sleeping more than a couple of hours a night, they are going to be a bit more grumpy, a bit more tired.
Speaker 3:So asking them to do something that's really challenging for them, like going to a social thing that they like, a Christmas that's a good example. Schools ended, the like normal routine has like changed. There's this build up to doing this like whole big Christmas thing with lots of people that the person just want to do. One has to kind of manage one's expectations about what's fair and proportionate if that person is running on like half a tank of sleep rather than like completely tucked up. So I think that's useful. But I also think it is helpful to work together to think about like what's going to be helpful for this person. So if they need more downtime of an evening, like not carting them around like this is a bit of an extreme example, but going shopping like eight o'clock in the night or something like that or having people around for a late evening meal when you know that person needs a bit of time to decompress before they go to bed. So I think small things like that can be helpful.
Speaker 2:Just to add, while Debbie was talking about expectations and everything I wanted to say and of course you know if someone's, let's say, performance or the way they respond to either in a family setting or at school, and everything changes at some point because we do talk about how the environment can actually support the individual I think it is really really helpful to be aware.
Speaker 2:But sometimes these kinds of changes, as Debbie said, may be because of, you know, sleep problems and again going back to the misconceptions and misunderstandings, to have this kind of link or association in our minds that wait a second. Maybe he's or she or they are grumpy today, maybe it's because they don't sleep very well or, and for whatever reason, we haven't had the chance to talk about it. A supportive environment or accommodating environment is an environment, but, as Debbie said, it's not to provide excuses for everything, but it is an environment that kind of takes into consideration all the different reasons why someone may not perform or may not behave as you would expect, and I think it's really important, both for parents or teachers and everything, to remember that it's not the one that sleep is in a different planet, and then the different factor, more than the individual, lives in another planet? They don't. It's not like that. They're so interconnected.
Speaker 1:Thanks so much to Debbie and Tasos for chatting with me and sharing their expertise. Remember, the podcast is not a substitute for medical advice, so if you're having any difficulties or any of the issues discussed, please reach out directly to a qualified professional. I hope we all get a good night's sleep. Mind yourself Thanks for the best night.