All Things Autism – Dr. Dagmara Dimitriou & Leo Andrade, Sleep And Autism

Hello, this is Anna Kennedy. We're talking all things autism. We're live, we're in Covent Garden and I'm joined today by two lovely ladies, Dr. Dagmara Dimitriu and Leo Andrade. But before I go over to them, I just would like to let you know and remind you about Autism Anglia. Not long to go now, 1st of March. I'm so excited about comparing with one of my charity ambassadors, Aston Avery. And I just want to thank the Avery family because on Saturday I was at an event in Essex where they were raising funds on for our charity and for St. Luke's Hospice. They raised £3,100. Wow, that's fantastic. Thank you so much. I had such a lovely evening. So it's going to be shared between both charities so that we are able to support more families. So just to remind you again, Autism Anglia, it's going to be the first of March at the Westcliffe Theatre, Clacton. We are going to be showcasing some fantastic performers. So singers, dancers, musicians, please come along and support our performers. So welcome ladies. Thank you. Thank you. Thanks for inviting us. That's okay. So, Dr. Dagmar, just to give a little bit background to everyone listening in, so you are a director of the Lifespan Learning and Sleep Lab at the University College London. You've published over 50 articles on sleep and related issues across different developmental disorders. Currently working, focusing on sleep related experiences by autistic individuals across the lifespan. And Leo was here about two years ago. Can't believe it was two years ago. Where has that time gone? Your son Stephen was in his early 20s at the time and you were talking about him being detained in an assessment and treatment unit in Clacton on Sydney. So how is your son doing now? Obviously, I know I've come along to your house and we celebrated his birthday, but can you just remind people of what happened and how are your sons doing now? Well, since our last meeting here on this very studio, Stephen finally came home. He's finally living independently on his own home, supported by 24,7 staff. And for the first year, it's been now, it's almost now 14 months since he came home. And since he's been back for a year, it was really, really difficult. But in the last, say, four months, he came alive, so to speak. He came back to the old Stephen. Absolutely. I can see my son coming back to me with the jokes, with the laughter. And this all due to two of his antipsychotic meds being reduced. So he's getting there slowly. Absolutely. So he's Doing really well and we are so pleased. Okay, so, Dagmara, I know that you're doing a lot of stuff on research and autism and sleep, which I'm always talking about on social media because I don't get enough. So talk to me a little bit about what you're doing and what is the Lila Centre, what exactly happens there? Okay, thank you. So what we do in our laboratory is we are looking across different developmental disorders and autism is one of the main focus of our research nowadays. So we are not only looking at children, how they sleep, but also at adults. Autistic adults came forward and they really would like us to have a look at their sleep as well. But we are looking at holistically at sleep. So looking at moms, whether they sleep as well, fathers and whole environment, immediate environment, so the whole family, siblings also will live in society. Therefore we need to look at sleep holistically. Okay, so why do we need to sleep? What's so important about sleep for individuals? And is there a recommended. Because I've read so many articles about, oh, you need to have eight hours or you need to have six hours or whatever hours it is. And I'm thinking, and if you don't, you know, it has a detriment, detrimental effect on your health. And I just think 28 years, probably I haven't slept very well at all. I thought I keeled over by now. So what is the recommended? Is there such a thing as a recommended? How many hours you should have? So you are doing amazingly well. I have to say that we talked about it in detail. So you are doing fantastic. So there are recommendations. NHS has also website and they recommend particular specific number of hours for individuals. So children should be sleeping between nine to 10 hours, adolescents between also between eight and 10, and then young adults about nine hours and then eight hours, adults. However, we are all individuals and we have busy lives and why we sleep. We ought to take a step back. It is so important for us. There's plenty of research nowadays coming from adult work right to the children, that sleep is important for our daytime functioning to function well, to reduce our anxieties as well. Sometimes our anxieties, depression states are driven by lack of sleep. We also know from data and the space, plenty of our research showing that sleep is important for cognition. So if we have good night's sleep, what I mean by that is quality and quantity. So it's not only how many hours, and this is very important to remember, it is our quality of sleep, if we have good night's sleep, Even if it is shorter, but quality of it is good. We don't wake up frequently. That is important for our memory consolidation. So what I mean by that is we are able to put everything in long term memory. We are learning and it is important for children and for adults. Okay. So Leo, what's sleep like for you with two young men on the spectrum? How old are your boys now? Both of them. So Stephen is 25 and Josh is 12. Okay. And both have a diagnosis of autism. Yes. So Stephen barely sleeps at all. He probably sleeps about two hours at night and not every night. And. And that is now. But before, when he was home up until the age of 16, he would go three weeks alert all night with no sleep whatsoever. And me would sleep about five minutes in between him lying on top of me. And I would just have those five minutes that you desperately needed. That I desperately needed. I do not know, as you just said earlier, how we survived. Are we still alive? I have no idea. And so no sleep whatsoever. And my sleep from those times, still very difficult. I go sometimes seven days with no sleep whatsoever. Not because of Stephen, obviously, because he is living now in his own home. But it's my overactive brain. Yes. And I just cannot get to sleep. So I'm up and constantly. And when I do sleep, I'm thinking that I slept within minutes. Say I fall asleep at 1 in the morning. Within 5, 10 minutes I'm awake thinking that I slept for hours. And my, my heart rate is really racing. Racing. But going back to autism and sleeping patterns with my kids is that Josh also won't sleep. So he's up until one maxima until two in the morning and he won't sleep. And so we all have this and it impacts on our day. And when you, obviously some people are going out to work, you know, you're tired, you're not functioning properly. Can I just ask Dr. Jagmara, why is it that our children don't need a lot of sleep? What is it about their brain patterns that stop them from having a relaxed sleep? Have we done any research into that? So what we know at the moment about sleeping autism, we know that is very common. There are common problems for about 80% of autistic children and adults. They do suffer from sleep problems, but they vary. And we know that from our research and our colleagues who are doing research in autism that it can be from frequent night wakings to insomnia. So many children and adults, they wake up at night and they just don't sleep to problems such as Sleep disordered breathing, so they will have respiratory problems and to melatonin receptor issues. So you can see huge range of different issues. Okay. My son Patrick, he used to have sleep apnea for quite a few years. And he had to sleep on a mattress and it would stop. The bell would start ringing when he would stop breathing. And I, at first, when they put the mattress down, I just couldn't go to sleep myself because I just kept waiting for it to go ding, ding, ding, ding, ding. And what they told me I had to do was nip his side of his ear to sort of help him go. So I did that for, oh, I think it was quite a few months that we did that. But then his sleep pattern sort of regulated and we didn't have to use the mattress anymore. But it was very, very stressful. So, yeah, I'm with angelo now. At 27, I can't believe, like my boys are, Angelo still only needs a few hours sleep. Quite hyper. I've tried. The other thing is that I get a lot of parents say to me, oh, how should we set up their bedrooms? And then you read a lot of stuff where it says, oh, don't have cluttered. But I just think everyone's so different from each other. What's working with Angelo at the moment is he used to like watching DVDs, but I've just taken those away now, so there's nothing like that in there. And he seems to be. Not that he's sleeping, but he's more settled. So he's like not squealing or bouncing or jumping. So I just have one of those little salt lamps. And I'm not saying that's gonna work for everyone. It's just trial and error. And sometimes it'll work for a little while and then all of a sudden it just doesn't work anymore. So I've tried weighted blankets. No, I just think those are really expensive for what they are. I make them. Oh, do you? Yes, but they're just for him. He likes them for a little while, but then he'll just throw it off. I don't want it anymore. So I just think it's very, very complex. And I just think if it's non invasive, try different things, and then it might work, as I say, once, and then it might not work. He likes to have the fan on, and I think that blanks out white noise for him. And also my eldest son, Patrick, likes to have the fan on. So for me, I couldn't think of anything worse. Putting the fan on at night. Time. Because I, for me, it has to be pitch black, no noise, and then I can fall asleep. Same here. Yeah, but Josh loves, he will sleep with music. Oh, does he? What kind of music? Classical music. So he'll ask me, mum, put me Beethoven. Okay, so we're going to talk a little bit more in the next quarter about sleep, about autism, about the research that's going on. If you'd like to be one of my speakers on all things autism, please contact me on the charity website. It's www.annakenakennedyonline.com. or you can contact me via social Anna Kennedy one on Twitter, Anna Kennedy Online on Facebook and Anna Kennedy OBE on Instagram. You can also give us a call in the office if you want to have a chat. The number is 01895-54-0187. Thank you. Welcome to women's radio station. Hello and welcome to future classic Women awards with me, Stefania Passamonte on women's radio station. Hello and welcome to Julie Mae is listening. Hi, this is Anna Kennedy and we're at women's radio station supporting women's well being and we're talking all things autism women. The possibilities are endless. That's what makes us different. Hi, I'm Meg Matthews. And I'm Carolyn Van Beers. Join us for a brand new show on women's radio station. It's the Meg's Menopause Show. It's yes. For the first time on radio there's an entire show dedicated to the menopause. A fresh new approach where we inform you of all the choices and treatments that are out there, supportive and empowering. This is your show, so join us every week with a host of celebrity guests. Our very own resident doctor where we talk about everything menopause. Hi, I'm Lauren Mishkon. I'm a birth doula and mum of three and I'm passionate about supporting women to have empowering and positive birth experiences. Please join me for my brand new show From Tummy to Mummy here on women's radio Station. Every week I'll be here with an expert guest talking about women's reproductive health, everything, fertility, pregnancy, birth and baby related, right through to the menopause and beyond. Please join us for an informative and fun hour. My name is Ingrid Marsh and I host the radical wellbeing show supporting women's wellbeing. On my show I bring you ordinary women like me and you who are sharing their unique stories. Women who have refused to be defined by their pains, to be silenced by stigma or crushed by stereotypes and who are taking back their power. And together our mission is a simple one. And that's to inspire you to kick away the roadblocks too, to don your wings and be the person that you were born to be. Hi, I'm Hazel Butterfield, a blogger, book lover and mental health advocate. And you can listen to my show get booked here at Women's Radio station daily at 5am and 5pm throughout my shows, we'll talk about the books I've read, new releases, chat to authors, publishers and book enthusiasts, all with a theme and aim of supporting women's emotional well being. If you have a book to tell us about, get in touch@presentersomensradiostation.com join me on my show and share my love of books and writing. You're listening to women's radio stations supporting women's well being. Women's Radio Station is creating a global network for the empowerment of women and we want you to be involved. Join us on Instagram and Twitter. Women's radio station, that's Women's Radio STN or Facebook. Women's radio station to keep up to date with all our exciting programs. Hello, this is Anna Kennedy. We're talking all things autism. We're live, we're in Covent Garden and we're talking about autism and, and sleep. And before we go over to my guests Dr. Dagmara and Leo, I just want to remind you about the Neurodiversity Youth Summit that's been organized by Jeanette Arland Arnold. Sorry, not Arnold Arnold, obe, chair of the London assembly, and Sienna Castellon, one of my charity ambassadors. It's going to be on Monday, 16th March between 4 and 6:30. Tickets are free. It's going to be at City Hall. The going to be various speakers and I'm going to be speaking and showcasing some of our Autism's Got Talent performance. How exciting is that for our performers? So we're allowed to show five. So they're going to be performing at City Hall. So again, what we're trying to do is showcasing what our children and adults can do, not what they can't do. And they are amazing. And talking about performing arts. Lisa and I are going through all of the auditions for Autumn's Got Talent in June, two days. We've still got more to go through and the talent is outstanding. I don't know how we're going to choose 20. It's going to be so difficult. And we've got performers from Mexico, Nigeria, we've got them from Canada, from America, it's just like Lisa and I are thinking, how are we going to choose the performers? They're just like, outside outstanding. I'm excited, but also stressed that we can only choose 20. So, yeah, it's going to be quite a stressful time sending out the information. But again, if you'd like to come and see them all, it's going to be at the Mermaid Theater on June 13th. I'm also going to Cheshire as well in May, where we're going to be showcasing our performers and we're celebrating with chaps. And I'm so proud to be their ambassador for the last few years. So that, again, is going to be happening in Cheshire. So let's go back to sleep and autism. So, Dagmara, we were talking about setting up the room and obviously all the children and adults are so different from each other and what works for one child, there isn't one thing that works for everybody. So what research have you done in setting up rooms or any tips you can give listeners that are listening in? Absolutely. So, vasfa, if you have a look at any website, autism charities, they or nhs, they would show sleep hygiene and sleep hygiene. Hygiene is basically driven by a notion of being typical adult or typical child, that the bedroom should be at certain temperature, it's supposed to be dark, no DVDs, no music, no other external things that could disrupt our sleep. And what we looked at is that all the studies so far in autism were taken, data were taken from parents who were observing sleep problems of their children or professionals. But what we wanted to know exactly was what you were both saying. We wanted to know about individuals, we wanted to know about sleep, from autistic adults and to youngsters, what makes you to fall asleep, what doesn't? What are the specific things that will make you fall asleep? And you have both shown exactly what. We have gathered evidence from huge number of children that books make them, most of them, they will make them awake. Whereas DVDs and videos and certain films or certain music doesn't necessarily mean that what I like is going to. To make my child fall asleep. It is very much driven by that particular child individualized sleep routine. And this is very, very important for the parents to think that if you cannot follow sleep hygiene that the professionals are telling us or what you are reading, please don't worry, because your child has autism, has very, very unique issues. Maybe sensory, maybe something that we are not going to know, but they can tell us what makes them fall asleep. We can observe it sometimes, sometimes they cannot tell us. So Think what will make them fall asleep. Something different that Angelo's doing at the minute. He's sleeping at the opposite end of the bed and it changes with time. I have done that before. I'm just thinking what's changed to make you want to sleep at the other end of the bed. What about you, Leo? What about your sons? What type of things have worked for you in the past? So funnily enough, one of the things that works for Stephen, doesn't work for Josh, but works for Stephen is long walks in the evening. Okay, so take him out in the evening. Long, long walk, say a three mile walk. And you will feel and he will sleep. Bit of a stress buster, I suppose. Yes. And that fresh air, I think fresh air is a great thing. I mean, the doctor will tell us if you know. But even I, when I go out in the evening for fresh air, for a long walk, I feel relaxed and then I will stay. But if I am my mind constantly going about this and that and it's not fresh, then I want sleep. So that works for Stephen, but currently he doesn't have that routine yet because of due to the situation with Josh, that does not work. So as we just say, what works for one does not work for the other. And the routine may change sometimes. Yeah, definitely. Yeah. So let's talk about medication, because I am asked many, many times and people even suggest to me, anna, why don't you give Angelo melatonin? Now I have tried various different medications in the past. Chloral hydrate, Vallan and Melatonin. I did ask my gp, but for some reason he wouldn't give it to me. But I'm not sure one of them made Angelo very, very hyper. I can't remember if it was chloral hydrate or the Valan and I thought it had the opposite effect. And then the other made him very, very drowsy during the day. And I thought, I don't want my son to be walking around like zombies, like. So I just didn't use anything. So what sort of research is there out there with reference to medication and sleep? This is rather complex because we all know that autism is a huge, you've got huge variability within the population. And I am not medical doctor. No, but what I can say, say from the data we have seen that and also from previous research, sleep problems in autism are huge and they vary from one person to another. So we cannot treat different sleep issues with one treatment. And what I would always suggest that sleep management should be varied and at the same time There are many behavioral forms that you could put possibly try cognitive therapy for insomnia, maybe for, for adults or something very much tailored towards the individual. And at the same time, have a look at your child's sleep routine yourself because as I said it, it may not work. And I've heard from many parents that actually melatonin doesn't work. And it may be for different reasons, maybe when melatonin is not given as supposed to be of different dosage or wrong times. So it's very, very complex. What about diet? Is there anything out there that you shouldn't be giving your son or daughter? Or does it, again, is it very individualized? I think it is the second. And we all know that diet in autism is quite complex and there's no data to actually suggest that to link sleep and diet in autism at the moment. Okay, so sleep's universal across different countries and cultures. Can you share a little bit more information about that? So the data that come from sleep are mostly driven by Western countries, but we know even that in Europe we have different cultural ways that we are actually dealing with sleep. In certain countries, for example, in southern countries, people will be napping. In China, children will be sleeping. In many parts of China, children will be sleeping during the day to gain some sort of, they will say power during the day for learning, so power naps, etc. So their recommendations here may not be working in another country. So that's why we really need to look at the sleep as holistically as possible and appreciate that in certain cultures may be driven through different cultural and norms as well. Would you agree with that? Definitely agree with that. I mean, Portugal, for instance, children, regardless of a learning disability or autism, they go to bed 7 o', clock, 8 o' clock is the latest they have to go to bed. Whereas here in the UK with our children, doesn't work like that. My children, and I am from that culture. Yet I could never impose that timing. Even for my older daughter who does not have autism, she was really a bad sleeper. And I heard you, Dagmar, earlier on mention when we were outside about it can be genetic. Genetic. You know, I think it is genetic. I was never asleep myself, me and my brothers. And so my daughter, up until her early 20s, she couldn't sleep. She was always up with the same time as her older brother, as younger brother. So I think it's something within ourselves, within our genetics. Yes. Yeah. My dad, thinking about it, he suffers from insomnia. He's very, very poor sleeper. So it could be that it's been past down to my son Angelo Patrick. For the first six or seven years. He was quite a poor sleeper and he wouldn't sleep in his own room. He wanted to sleep in our room. So we used to have to put a mattress on the floor. But then eventually, because I used to sleep alongside them on the floor in their room, then it was a little bit more of a comfort thing. And then gradually I was able to move out of the room and then obviously we moved house. So they both had their own separate bedrooms. So that's the bit that Patrick finds difficult because obviously he's got to go to work every day. And he says sometimes ang too noisy drives me mad. But he says the fan masks the sound. So if someone wanted to have a look at your website and look at some of the research and some of the results that have come out there, where would they find it? It would be a UCL website and we've got specific website for Lila's lab. Okay, how do you spell that? L I, L, A S Lila's Lab. And the is Lifespan, Learning and Sleep Laboratory. Okay. And most of our publications are there. And what I would like to mention one more thing. What you were talking about Twitter. Yes, not Twitter. Sorry. About the siblings, it's really important to consider sibling sleep as well. Most definitely. Because obviously they've got to go to school, they've got to go to work and it has an impact on them and sometimes they don't say anything. They suffer in silence because they know that you're suffering yourself or you're trying to support your family and they don't want to put too much of a burden on the family. So again, we're going to be talking more about autism research and sleep. If you'd like to be one of my speakers on the radio, please contact me on www.annakennedyonline.com or anakeny1, Twitter Anna Kennedy Online, Facebook and Anna Kennedy OBE Instagram. Welcome to women's radio station. Hello and welcome to future classic women awards with me, Stefania Passamonte on women's radio station. Hello and welcome to Julie Mae is listening. Hi, this is Anna Kennedy and we're at women's radio station supporting women's well being and we're talking all things autism women. The possibilities are endless. That's what makes us different. Hi, I'm Meg Matthews. And I'm Carolyn Van Beers. Join us for a brand new show on women's radio station. It's the Meg's Menopause show. Yes, for the first time on radio, there's an entire show dedicated to the menopause. A fresh new approach where we inform you of all the choices and treatments that are out there, supportive and empowering. This is your show, so join us every week with a host of celebrity guests. Our very own resident doctor where we talk about everything menopause. Hi, I'm Lauren Mishkon. I'm a birth doula and mum of three and I'm passionate about supporting women to have empowering and positive birth experiences. Please join me for my brand new show From Tummy to Mummy here on Women's radio station. Every week I'll be here with an expert guest talking about women's reproductive health, everything, fertility, pregnancy, birth and baby related, right through to the menopause and beyond. Please join us for an informative and fun hour. My name is Ingrid Marsh and I host the radical Wellbeing show supporting women's well being. On my show, I bring you ordinary women like me and you, who are sharing their unique stories. Women who have refused to be defined by their pains to be so silenced by stigma or crushed by stereotypes and who are taking back their power. And together, our mission is a simple one. And that's to inspire you to kick away the roadblocks too. To don your wings and be the person that you were born to be. Hi, I'm Hazel Butterfield, a blogger, book lover and mental health advocate. And you can listen to my show get booked here at Women's Radio station daily at 5am and 5pm throughout my shows, we'll talk about the books I've read, new releases, chapter authors, publishers and book enthusiasts, all with a theme and aim of supporting women's emotional well being. If you have a book to tell us about, get in touch@presentersomensradiostation.com join me on my show and share my love of books and writing. You're listening to women's radio stations supporting women's well being. Women's Radio Station is creating a global network for the empowerment of women and we want you to be involved. Join us on Instagram and Twitter imminsradio station, that's Womens Radio STN or Facebook Women's radio station to keep up to date with all our exciting programs. Hello, this is Anna Kennedy. We're talking all things autism. We're live, we're in Covent Garden. It's quite a cold day today and my guests today are Dagmara Dimitriu and we have Leo Andrade. Before I go over to them, just to remind you about our Autism Expo where one of our speakers is going to be Dagmara, and she's going to be talking about sleep. We've got Dr. Carol Stott, who's going to be talking about the criminal justice system and autism. We've got Matthew and Callum, which is their father and son. Matthew has autism and Callum has dyslexia. And they're going to talk about how creativity has seen serve their life. We've got Juliana, we're going to be talking about her son and her special therapy. And we have Lori Morgan, who has been diagnosed with autism and talks about how it's changed her life. And the last speaker is Jolie Williams and she's talking about thriving autistic adult gaslighting, which is a lot in the media at the moment, and autism acceptance. We've got exhibition stands. So people like the autism reality experience where you can experience what it's like to have a sensory overload. Nano chocolates, optic kinetics. We've got so many different stands. We have free clinics as well where people can get advice. So if you want to book 20 minutes with Paul Isaacs, talk about behavior or autism, we have creative counselor Jane Fieldsome. So anything to do with counseling and autism, you can talk to Jane, a lovely lady. Nikki Payne is going to be talking about occupational therapy. So if there's anything that you would like to talk to Nikki about with reference to your son or, or daughter, and then my husband Sean and Mandy, they can give you some free legal advice. So, Dagmara, we're always talking about children and lack of sleep. What about our adults? Because obviously the children grow up to be adults. So can we talk a little bit about adults, sleep and autism? Absolutely. Adults tend to be, in terms of research, put on the side and our autistic advocates in Ukraine are really strongly pushing us towards thinking about sleep and research for adults. And we listen to them. And I'm really privileged to work with two autistic advocates who are actually helping us a lot and are advising on our research, how we're supposed to drive our research towards getting as meaningful data as possible. And so we are at the moment running adult sleep research. And this is basically looking. First of all, our phase one was a survey across the whole country and we are very grateful to receive huge number of responses. And second stage is to characterize sleep in autistic adults. And these questions were driven by autistic community in the uk, not researchers, but the autistic community. And the second, then the last part is looking at sleep management. So we are working together with autistic population to design a sleep management program. Okay, so how is that panning out at the moment? Have you got any ideas of how you think it might work? So at the moment, the second stage, we are going to have the focus groups. Then we are going to identify a characterized sleep in autistic adults. And the last stage, when we have all the data gathered, we are going to have groups of autistic adults who are going to go through the sleep management program. And it's based on cognitive behavioral therapy for insomnia and also individual input by autistic community. So if somebody who's listening in might be an autistic adult and they're thinking, how do I find out about these surveys? Where do I look for them? How can I participate? Where would they find them? So we advertise all our research and we promote that through Twitter. Okay. Using Lila's website as well, and through different outputs such as Instagram as well and Facebook. Okay. So if you have an adult like I have Angelo, who's got minimal verbal skills and obviously I would like to help him and he's not going to be able to fill out one of those forms. So can I do it for him? Is that okay? You could, but then it would be marked as a parent doing that. And it's absolutely right. What you're asking. The first stage, what we are doing is with variable adults. And once we collect and we have platform for us to work on, then we are going to go towards individuals who are nonverbal as well. As we all said, huge variability within the community. The other reason I'm asking as well is because I speak to so many parents where you watch programs on television and they say they always focus on the adults that are more able, if you like. And what about our children that are on the opposite end of the spectrum that you know, we need to see more about? I think Louis Thoreau did a fantastic program. He's. I love him. I love the way he puts his documentaries together. So just moving slightly away from sleep at the moment. Leo, you've got a campaign called Stripped of human rights, is that correct? Yes. Could you tell us a little bit about that so our listeners can strip of human rights? If anyone would like to follow it, go on Twitter stripped of. And Facebook Stripped of human rights. And it's about the rights of our autistic people in institutions. So when did this start? So I started it last year. Okay. Where I did a protest. Okay. A five day protest across country. I remember that. And we got about 2,000 people went on the protest. And so, yes, so we did really well. We had a lot of responses from NHS England and the media, obviously, and from the government. You know, so can you just go back? Because some people might be listening in and thinking, institution, what's that? Because obviously we've got parents that are listening in that their children or adults might have just been diagnosed, or you might be an adult that just had a diagnosis of autism. So could you just go back a little bit of why you put this together? So due to my own son and my friend children being in an assessment treatment unit, which is now called for short he use, they, you know, they spend years and years in these institutions and being under the Mental Health Act. Right. And because of it, because they are under section and under the Mental Health act, they are totally and parent stripped of the human rights. So can you give us an example of. Without using names. Yeah. So an example would be a person that is institutionalized into the assessment treatment unit are given, say, 8 to 10 antipsychotic drugs in one go, a total cocktail of drugs, including a depo injection, which is usually given on the back of your neck, that paralyzes that person for about three days. Okay. And that is. So this is a story about some. Something that's happened, right? Okay. Yes. Including my son. Okay. And so they are also put in straight jackets up to 12, 14 hours a day. But not just that. And obviously with dough. That being said is. And why I did the campaign stripped of human rights, because those rights are being taken away from them, but also from us as parents, because the psychiatrist responsible for that young person and that institution at the time have every legal right to do all that. And so we have no rights. And even if a person has capacity, my son didn't have capacity, but even a person who has capacity that can say, I don't want these drugs to be given to me, or I don't want to be injected, they will still be injected. And that's why they are being stripped. And so I decided to do that and to bring to the attention of the government what's happening to our children is a human right. So one case that highlighted was Beth, obviously, and yes, Bethany was a big case. It was, you know, it was all over the social media and it was all over the media and newspapers and radio. Absolutely, you know, her rights were absolutely stripped. You know, she was locked in a room in almost a cell, sort of with just a mattress, I think. Yes. Now, another friend whose son I will not name but he was also in one of those cells for about 10 years where he didn't even have a toilet. Now again that's a human rights issue and so that's why I did it. And I am doing another campaign in the summer. Okay. You know, I haven't come up with. There's quite a few ideas. Okay. So you're trying to think of different ways, thinking out of the box how you can get people's attention and just say absolutely. This is just not, it's just like you can't even get your head around it really, can you? Yes, there's currently and there's another situation is UK have different laws from you, from Scotland for instance. And so Scotland right now has the power to take a person away from the parents and put it in a private, in a government run institution, almost like a Broadmoor kind of prison. And there's a mom currently fighting to get her son home for after 11 years but she can't all of it. He is being locked up by the government and mum has no rights. How can they think that that's okay to do and how do they think that that's gonna, it's beneficial for their well being? Like even if you don't know anything about the system, just listening to what you've said, how can they think that that's okay? Absolutely. And there's a, the mum been trying to get, the mum been trying to get the Scottish government to intervene and they for years now and they absolutely point blank refused to speak to her. Now again that's a human rights issue that they are not listening to the mum. We can talk a little bit more about that if you don't mind. Leo and I know you're going to be meeting with Matt Hancock on Friday. Yes. So hopefully you can share a little bit more about that. And obviously I wish you the best of luck. And you're a fighting mom, which is, you know, there's a lot of mums out there, a lot of dads out there that are fighting hard for their children and for their adults that are growing up. And it's obviously it's a worry at the back of our minds. We're always worrying about who is going to look out for our children when we're dead and gone. I know it's a morbid thought but it's something that we think about and it's at the back of our minds all the time. It doesn't matter how old your son or your daughter is. I am also constantly worrying, especially now, you know as I'm getting older, I'm thinking, what's going to happen again? Scary thoughts, but keep fighting. Whoever you are, whatever you're fighting for, if you don't speak up for your children, who is going to do it for you? Welcome to the Women's Radio Station Supporting Women's well Being Women's Radio Station is all about diversity from opinions, career, ethnicity, education and most importantly, women's well being. We aim to celebrate the individuality of every woman everywhere, providing opportunities and the platform for your voice. Visit our website, womensradiostation.com for more information. Hi everyone and welcome to the Femaling Show. I am your host, Nicole Goodman and I am a woman's identity expert and coach. As women, we fall into different phases of identity throughout adult life and during these, our challenges can look pretty similar. Here at wrs, I will be talking to you about the real issues we all face and even the ones we can silently struggle with. Through honest, heartfelt conversation here at Femaling, you will learn how to accept yourself, understand yourself and be yourself. Hi, I'm Carolyn Van Beers. Please join me for a brand new show here on Women's Radio station, Its Mother's Hour. If, like me, you're a mum, juggling far too many balls and dropping most of them, this is definitely the show for you. We'll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories. It will be refreshing, honest and funny. Look at being a mum. I'm Tamina Zaman, founder of Empower and Enrich. When it comes to money, do you clam up or get confused? Do you wish you could save more money or are you hoping you have enough for retirement? You are not alone. Many women want to be smarter with their cash, but just don't know where to start. @empowerandenrich.org you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy, affordable way. Get in touch with me@empowerandenriched.org and let's change your future to Together. Are you struggling with money? Turn to us as a national charity helping people struggling to make ends meet. Job loss, illness or bereavement can cause a real financial crisis. We give practical help to get people back on track. Whether you're thinking of having a baby, trying to get out of an unhappy relationship, or just unsure what benefits you may be entitled to we can help, visit turntous.org.uk welcome to the Women's Radio Station supporting women's well being. Women's Radio Station can give voice to your brand. With a wide range of sponsorship opportunities, including individual programs, we can tailor your experience for you. For more information on how you can sponsor a Show, go to womensradiostation.com Women's radio station supporting women's well being. Hello, this is Anna Kennedy. We're talking all things autism. I can't believe how quickly this show has flown by today. We're already in the last quarter. Just to remind you about the Autism Hero Awards. We're in our fifth year now and it's going to be happening at the Chelsea Harbour Hotel. We've got one of our winners here today, which is Leo and she was given the special recognition award. So if you know someone that goes the extra, extra mile, like these two ladies in this studio, please nominate them. There's 12 different categories and then I choose a special recognition award. That's the only one that I choose, plus Charity Volunteer of the Year. The others, the headache goes to the seven judges that they have got to read through every nomination. They always ask for extra time because they find it so difficult just to choose three finalists from each category. So if you want to check it out, it's the Autism Hero Awards. Check out the charity website, www.annakenakennedyonline.com. all the events are on there. So, Dagmar, we were talking again about sleep, mums, children and depression. So could you share a little bit more? Is this something that you're researching on at the moment or have done in the past? Sure. So we've completed recently a research study looking at sleep patterns of mothers and their children. So we characterized sleep of a mum and a child at the same time and we also looked at the mother's cortisol level and we asked them to feel sleep questionnaires and at the same time, depression questionnaires and what often happens. And the data show that moms who have children who see sleep really, really poorly, they also sleep poorly. So you can see exactly the same sleep patterns. Mothers don't sleep if their children don't sleep. But also they show very high scores on depression questionnaires and the anxiety levels are really, really high. So I would say that they should actually speak out, they should talk about it with AGPs as well and how to manage their sleep and their children's sleep. And there's another part where children often have huge anxieties at schools and they bring those anxieties home and that will trigger huge sleep problems as well. So it's not only at home, it's not only their autism, but anxiety is brought from schools because sometimes they find that they don't show their anxieties. They hold it in or they mask it at school. And then obviously when they come home because it's a safe place to able to whatever it is that, you know, they've got to de stress. Mums usually get it or siblings. So that's where it's, it's very, very difficult. So do you associate with any of what Dagmar is talking about? I totally compare myself. I put myself on that place and with Josh as well. He masks so well at school and, and then the moment I pick him up, he's holding on to me with such, you know, he's so anxious, he leaves me bruised, you know, and all the way home till home he is in a very bad state of anxiety and to the point where I just, oh, you know. And I, you know, yesterday was a day that I end up crying for about two hours. It can be very detrimental. Not just the lack of sleep, but also my child's anxiety. And I think every parent I know says the same thing. I think it's a big factor, depression and lack of sleep. What about your daughter? Is any of this would you feel is impacted on her? I know she works. Does she work in the special needs world? Yes, yes, I met her for the first time. Lovely young woman. Thank you. Very attractive as well. Thank you. Yes. Actually I think it affected her terribly. Not that she will admit because she's such a strong willed person. But a few years ago after Stephen left home, she realized how difficult it was for her and we did go counseling and she admitted so many things that actually giving me goosebumps because I haven't spoken about it since. But she. This is probably something you hear about the sibling getting divorced in many ways and she was doing self harming, she was cutting herself and I didn't know and, and she was incredibly depressed and she took the, the role of a young carer. So. Yes. So why do you think she's gone in the special needs? Well, because I find that sometimes like obviously she's experienced it throughout the years, but then she's still gone into the world of special educational needs. I would have thought sometimes some of the siblings might think, oh, I don't want to, I don't want to be part of that anymore. I want to do something for me yes, well, actually she wanted to be a psychologist for people with, I've heard that so many times, autism. But she didn't have the full grades in maths and so she couldn't when she tried, was too late for her to do it. So this is why she's doing it. And I think no one better to do it than her because or any other. I'm so proud of her for doing that because she cares so much and she will not put anybody forwards to a school or a career into the care system if she knows that that person only there for different intentions. She's well known, she understands autism so well and learning disability and I think she's the perfect choice to do it. I remember our expo, I can't remember if it was two or three years ago. We had a speech and language therapist who was a sister of a quite profoundly affected adult on the spectrum and she was, I just found her amazing. I could have listened to her speak for hours and she just totally got it and had so many different strategies of working and she was talking about her experiences and I, and I found her to be an amazing young woman and I thought if I was her mother I'd be so proud of her. And she's always like stuck in my mind and I do say to Lisa sometimes, oh, I'd really like that young lady to come back. She was just so good at her job. So again, if people want to, because what I'm trying to do is push here. So if people want to take part in your studies, what type of studies have you got on your website? And is it for children and adults, is it for parents, is it for a mixture? So where can they look? Because I want as many people to participate as problem because obviously a mum who suffers from lack of sleep, we need some support. So currently we are looking at the study that we're in progress is adult sleep, but we also look at mental health and mental health in students as well. But what I would like to go back to is the fact that maybe mums could talk to also teachers when the child doesn't sleep well and very often I'm sure you hear, oh, maybe the child was naughty, is not listening and maybe has ADHD and et cetera, all this hyper activities, maybe talk to the teachers, maybe facilitate napping, sleep few minutes, 20, 30 minutes, that may change the child's daytime functioning and that would improve. One of our studies showed that when we looked at ADHD and we had controls typically developing children, strangely what we noticed, those children who were Typically developing but they had poor sleep, they showed ADHD like behaviors. So you can see what sometimes happens. If sleep is not there then the daytime functioning will be negatively impacted and the teachers possibly could facilitate certain things or maybe just change their mind. And we cannot blame them for not knowing but is just they are not going to know if we don't tell them. It's the same with gp if we don't tell them, they are not going to know. That's the thing with I think teachers, teaching assistants, that we should have that two way communication. Whether it's via text, whether it's via email, whether it's via a booklet that's going from mum to teacher. They need to know what type of night you've had or what type of night your son or your daughter's had because then it's going to impact on their day. And you also need to know what kind of a day they had end at the school, what have they been doing. Because sometimes your son or daughter might come home and you'll say how was today for you? You'll get a shrug or you'll just get nothing because they don't want to talk about it. So then if you, if they've got that two way communication, it's almost like having a 24 hour curriculum if you like because you're just talking about what kind of a day and it. Then if everyone's singing from the same hymn sheet as I always say, then hopefully it will have a better outcome for your son or for your daughter. How was school for your boys earlier? Stephen loved school and Josh hates school. So anxiety is very high. Every day for him to go to school he is, he gets into a panic attack. He has panic attacks, severe panic attacks actually to the point where he passes out. Oh dear. And the, you know, when you just ask you, they shrug. Well, his first, when I asked how's school today, darling? Indy says terrible, was just horrible. I hate school. I hate, you know, Andy so full of anxiety. But I have to say his school is very good at understanding him. Okay. And so when they know he cannot cope in a classroom, they take him out into an area where there is no other children. So what I discovered is that when my son came out of school it's like don't ask him how his day was, give him time just to calm down, you know, because obviously he's had to socialize during the day. He's had to try and communicate with friends or whatever it is that he's been trying to do. And if he's had a tough day. I think the best thing to do is don't ask them straight away. Give them time to come down, give them time to come home, have something to eat, whatever it is. Then ask them when they're in their own comfortable environment. I can't believe the time has flown already. We're near towards the end of the program. I just want to remind everybody that if you would like to be one of my speakers, whether you're a mum, whether you're a dad, whether you're a carer, whether you're a grandparent, whether you're an autistic adult or a professional, please contact me. I have got speakers right up till the end of May, but if you'd like to be one of my speakers, please contact me via the charity website www.annakenakenadyonline.com. ladies, it's been a great interview today. I've enjoyed it and it's gone by too quickly, too much to say. So if people want to contact you, it's Lilas is the website ucl and then for you it's stripped off on Twitter. On Twitter. Thank you so much, ladies. I really appreciate you coming along today and hopefully maybe we can talk again later on and we can update everyone how the research is going, how you're stripped of human rights is going. And I wish you the best of luck with Matt Hancock. Give it to him on Friday. Speak up for everybody. So just to remind everyone, if you want to be on social media to Contact me, Anna Kennedy, 1, Twitter Anna Kennedy Online on Facebook where you can find out about what the charity does. And Anna Kennedy, OBE Instagram. Bye everyone. Thank you. Welcome to the women's radio station supporting women's well being. Women's Radio Station is all about diversity from opinions, career, ethnicity, education and most importantly, women's well being. We aim to celebrate the individuality of every woman everywhere, providing opportunities and the platform for your voice. Visit our website, womensradiostation.com for more information. Hi everyone and welcome to the Femaling Show. I am your host, Nicole Goodman and I am a woman's identity expert and coach. As women, we fall into different phases of identity through our adult life and during these, our challenges can look pretty similar. Here at wrs, I will be talking to you about the real issues we all face and even the ones we can silently struggle with. Through honest, heartfelt conversation here at Femaling, you will learn how to accept yourself, understand yourself and be yourself. Hi, I'm Carolyn Van Beers. Please join me for a brand new show here on women's radio station. It's Mother's Hour. If, like me, you're a mum juggling far too many balls and dropping most of them, this is definitely the show for you. We'll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories. It will be refreshing, honest and funny. Look at being a mum. I'm Tamina Zaman, founder of Empower and Enrich. When it comes to money, do you clam up or get confused? Do you wish you could save more money or are you hoping you have enough for retirement? You are not alone. Many women want to be smarter with their cash, but just don't know where to start. @empowerandenrich.org you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy, affordable way. Get in touch with me@empowerandenrich.org and let's change your future together. Are you struggling with money? Turn to us as a national charity, helping people struggling to make ends meet. Job loss, illness or bereavement can cause a real financial crisis. We give practical help to get people back on track. Whether you're thinking of having a baby, trying to get out of an unhappy relationship, or just unsure what benefits you may be entitled to, we can help. Visit turntous.org.uk welcome to the women's radio station supporting women's well being. Women's radio station can give voice to your brand. With a wide range of sponsorship opportunities, including individual programs. We can tailor your experience for you. For more information on how you can see sponsor a show, go to womensradiostation. Com Women's Radio station supporting women's well being.