 Hello, and welcome to the 466 clinicians who have joined us for tonight's webinar. The title of the webinar is Working Together to Support a Child with Autism Spectrum Disorder Experiencing Sleep Disturbance, and this webinar is hosted by the Mental Health Professionals Network. My name is Professor Shanta Rajaratnam and I'll be facilitating tonight's session. I'm a psychologist who's based in Melbourne at Monash University, and my interest is particularly in the neuroscience of sleep and circadian rhythms, and also circadian rhythm sleep disorders and treatment approaches for circadian rhythm sleep disorders. I'm the immediate past president of the Australasian Sleep Association, which is the peak body representing researchers and clinicians working in the area of sleep in Australia and New Zealand, and I'm delighted that a number of our panel members are active members of the association also. So I'd like to start by firstly introducing the panel. We have Alex Bartle with us from New Zealand. Alex is a GP who now works exclusively in his sleep well clinic, which was designed to offer assessment and treatment for children and adults suffering from sleep disorders such as problematic snoring, sleep apnea, insomnia and parasomnias. Alex, can you tell us a little bit about how your interest in sleep disorders first came about? Well Shanta, it's interesting that I started about 15 years ago and realizing that so many of my patients had sleep disorders in my general practice and wanting to explore that further and went on a course in Sydney and it just blew me away. That's everything that I was doing in my general practice. There was some aspect of sleep that could be applied to that. So it really grew from there and my interest has not waned since that time. It's a fascinating subject and so important for us all. Well great to have you again on the panel with us tonight, Alex. So joining us also is Dr. Margo Davy who's a pediatric sleep physician who's based in Victoria. She's the director of the Melbourne Children's Sleep Centre at Monash Medical Centre. She's well known across the country and internationally for a broad expertise in pediatric sleep medicine. Margo, welcome. It's great to have you with us. Can you just tell us a little bit about your centre? How many children does your centre see per year and what are the most common sleep problems that you see? Well, our centre sees all children in terms of anything to do with sleep too much, too little or interrupted. In terms of the sleep laboratory, we study about a thousand children a year. In terms of coming in for a clinical appointment, we probably see between three and four thousand children and I think probably half parents would have concerns about children's breathing and then the other half would be difficulties with sleep onset or waking or difficulties with unusual waking or rhythm problems. Great, well welcome Margo. We're delighted to have also with us Amanda Richdell who's a psychologist and a leading researcher in autism spectrum disorders, learning difficulties in developmental disorders and children's sleep. Welcome Amanda. Is it the Olga Tennyson Autism Research Centre? Could you tell us a little bit about your centre and its main goals? The autism research centre here at Leathrobe University was founded by private donations from Mrs Olga Tennyson initially in 2008 which was matched by the university and our goals are to provide training and research related to autism spectrum disorders to facilitate that in information going out into the community to practitioners. We have an early assessment clinic where we only see children under the age of three years with Victorian site for the federally funded autism specific early learning and care centre where we're investigating early invention programs using the early start Denver model and we're also involved in the autism CRC and I myself am involved in the autism CRC in the adult area and so we've grown astronomically in the five years since I've been here and I have particular interest and have had for over 20 years in sleep problems that we see in children with autism. Well it's great to have your input tonight Amanda and you can see from the number of registrants tonight that clearly clinically there's a great need for education and information about autism and sleep disturbance. We also have last but not least on the panel tonight Sue McCabe. Sue has over 30 years of clinical experience as an occupational therapist working with people of all ages with neurodevelopmental disorders. Over the past 10 years she's developed a sleep solutions service at the centre of a cerebral palsy in Western Australia. Welcome Sue, as an occupational therapist how did you become interested in sleep and choose to practice or focus your practice in sleep? I think it's a similar story to Alex in that I was working with people of all ages with cerebral palsy and it became more and more apparent that their sleep difficulties and their daytime sleepiness was having a huge impact on their function and their well-being and also in fact that of their caregivers that was particularly evident. Often caregivers this is not coping with day-to-day life because they had such little sleep so that got me interested. Our services now initially I was just looking at people with cerebral palsy but our services now funded by the state government so we see people of all ages with all conditions so probably about 50% of the people we see have autism spectrum disorder but we still see people with conditions such as acquired brain injury, cerebral palsy, other conditions like that as well. Great to have you Sue. So a few ground rules about the webinar tonight before we commence so we ask all participants to be respectful of other participants and panelists and we ask you all to behave as though it is a face-to-face activity. Post your comments and questions to the panelists in the general chat box that you'll have in front of you and for help with technical issues post in the technical help chat box. Your feedback is very important to us and we ask that you complete the short exit survey which will appear as a pop-up when you exit the webinar. Now the learning objectives for the webinar are presented on the slide that you have before you and I remind you that the materials relating to the webinar can be found at the bottom right hand corner of your screen if you click on documents you'll find a case study and supporting materials for the webinar tonight. So the objectives are through this interdisciplinary panel discussion about the case study Georgie. The webinar will provide you with an opportunity to identify key principles of the featured disciplines approach in screening, diagnosing and treating children with autism spectrum disorder experiencing sleep disturbance to recognize the mental health risks for both the children with ASD and their families in the context of sleep disturbance. I think that particular objective is very clear in the case study when we look at the impact of the sleep disturbance both on the child Georgie and her family and also to explore tips and strategies for interdisciplinary collaboration with relation to supporting families of children with autism spectrum disorder experiencing sleep disturbance. So a few words about the case study. We're going to be talking about Georgie, a young girl with autism spectrum disorder who sleep disturbance is really impacting the whole family particularly her mother. The discussion will explore how we can work together to better support children like Georgie and also importantly her whole family. Now it's a complex case study that raises a number of issues which clearly lend themselves to multidisciplinary collaborative care models and just out of interest to all of you the panel and I logged on just a few minutes ago. We immediately started talking about Georgie as a case study and we got so engrossed in our discussion we almost forgot to let the rest of you join as well. So it's going to be an exciting discussion tonight and we're looking forward to it. So I'm going to ask each of the panel members to begin by presenting a perspective or a response to the case study really from their discipline's perspective and so the format is going to be we're going to have five minutes hearing from each of the panel members that really gives us an overview of how they would respond professionally and clinically to this case study and then what we're going to do is take some time to have a conversation among the clinicians here tonight and also take the opportunity to answer some of the questions that are coming through from all of you as participants tonight. So Alex I'd like to start by handing over to you to hear about your perspective on Georgie. Thank you Shanta. I guess my perspective as a GP is looking at the family in a relatively holistic manner and clearly the first person who presents here is mum who is at the end of her tether. As you can see on the slide I really perceive the key figure in this case as being mother. In lots of ways there is many supports for Georgie herself and I'm going to leave this the more specialist side of things in terms of the autism and the ASDs autistic spectrum disorders to those who are more specialized but look more at the general case of how we can support mother and the rest of the family as well as Georgie in getting through this particularly this early stage and particularly with sleep. So my feeling really is that we need to see that autistic spectrum disorders do affect as do other neurodevelopmental problems they affect the whole family. Clearly mother in this case is the key figure and support for her is absolute paramount and if mother doesn't function then the family won't function and especially Georgie won't be able to undertake all the things that are necessary and as you can see mum is totally exhausted. There are many reasons for this I start with perhaps dad being away three-quarters of the time he's away much of the time so the whole of the burden falls on mother. Now when dad comes home he could be helpful maybe he'd take the other two children out and let mum have a bit of quiet time to herself or he may just be in just another person the mother has to look after so we're not quite sure how far this fits into this pattern. Two other children so often don't we see when there's one child with the disability in the family that they seem to get understandably most of the attention and other children tend to get left out. I'm sure mum tries very hard for this not to happen but to some degree it's inevitable. The key carer overnight is the mother again whilst Georgie gets lots of support at school and immediately after school for that two-thirds of the time when Georgie's either at home or it's night time mother is clearly the key carer and factor in Georgie's life and it's really leading to a great deal of stress on mum's part. So in addition finally of course when Georgie's at school and the sibling's at school instead of taking time out she's actually going to work and I guess that's probably as much a financial imperative as it is that she wants to just do something outside the house. So basically the first thing is listen to what mother has to say I think this is the most important thing so often when people come in to talk to me about insomnia and this is adults as well as children that they're so relieved to be able to find someone who actually is prepared to listen who has a little bit of understanding about sleep and the traumas that they're going through. So sympathetic ears almost one of the most important things to be able to offer. There are many support groups in the area if they know where to look. I know certainly I'm in New Zealand and there are certainly many support areas for ASD groups in both for the children but also for family members as well. If the GP feels comfortable about offering some behavioral strategies to try and help the child which I'm sure we'll be hearing about in the next few presentations then by all means do so. But be make sure that you're confident about what you're telling the child because so often misinformation gets promulgated by people who are not quite sure or maybe they've had advice from their own mother or parents and it may not be totally accurate advice so if you're confident to do so bio wins are offered advice. But primarily obviously as far as Georgie is concerned referring to a pediatrician particularly one with a special interest in ASDs and sleep would be ideal but in of course in Georgie's case she seems to be getting lots of support anyway. One of the key factors I go on about in terms of seeing talking to GPs is that this question about just asking about sleep, asking about snoring. So often I hear oh well Johnny snores but so does dad so that's okay isn't it? No it's not if children are snoring it needs to be dealt with and I know that's one of Georgie's problems that will be discussed. Restless Leagues. People tend to think it's just older women who get Restless Leagues syndrome if you ask around. It happens in children up to two percent of children have Restless Leagues syndrome so and often misdiagnosed or diagnosed as growing pains. Offering finding some respite care for mother really important to try and give them some break in this never-ending cycle of care. And finally just to exclude depression we know that mothers who are significantly sleep deprived with babies or with children and of course in Georgie's case are very much more likely to be susceptible to depressive disorders and whilst I wouldn't immediately want to keep on handing out medication here that support again is going to be vitally important for her. So basically all the support that Georgie may be getting we need there needs to be communicated back to mum and this is where these other specialists that we'll be talking with will always I would hope refer back to the GP but also to particularly to mother so that she understands the strategies that are supposed to be helpful and particularly things like resolution of this constipation help with advice with the snoring and what should be done there. So basically I'm just keen on supporting mother and asking making sure that we ask about sleep and not to shy away from sleep which I might come back to later in the presentation and particularly of course ask about snoring. Thanks Shacinta. Thanks so much Alex clearly there's a critical role for the GP in the management of Georgie's sleep complaints and you mentioned that in a complex case you would refer on to a pediatric sleep physician and so we're delighted to have Margo Davy on the panel as well so Margo I think perhaps at this time I'll hand over to you to give us your response as a pediatric sleep physician on the management of Georgie's sleep complaints and also the complex issues that are presented to the family as well. Thank you Shanta. I certainly agree with everything Alex has said and I think in terms of a clinical approach on this slide I've talked about the things I go through but time and time again I find people are very threatened by sleep problems and don't quite know how to tackle them so one of the things I prefer to focus on is just giving you a framework for actually taking your history because I feel that if you don't understand how to take a history then three have to help and this mnemonic which is called the Bears mnemonic just helps you go through a sleep history during the day and the night finding out exactly the times the routines what happened what are the main issues in terms of falling asleep waking up during the night and helping to get an idea of the regularity of patterns different caregivers different times whether it's a school day or whether it's a weekend or whether it's a holiday and then S for the snoring and I think the other thing about sleep history is it's over 24 hours it's really important to make sure particularly with children who have increasing developmental disabilities it's very easy for them to sometimes be on long journeys to and from school and that can be an extra hour in the morning an extra hour in the afternoon coming home from school falling asleep so finding out exactly how much sleep is happening and what time George is a bit like a pandora's box in terms of problems that could be happening and really with my medical hat on just reading through this and getting the history from the parents and the mum certainly there are lots of things that could be contributing to frequent wakeings during the night and difficulty settling during the night any child with epilepsy you want to make sure that it's well controlled and that's unrecognised seizures aren't happening similarly a medication sometimes can cause significant insomnia and the lamotrigin is certainly a medication that can really disrupt sleep onset similarly the aneurysis and having a bed that's wet each night disturbed sleep and similarly mum alluded to the constipation and she seems to have more pain so exploring that further it's not normal for the children to snore and trying to tease out children who have significant snoring which is representative of obstructive sleep apnea finding out whether or not a child breathes with their mouth open or shut whether or not parents actually witness apnea episodes or choking or gasping and unfortunately some of this is in the eye of the beholder what one parent calls snoring and other parents there's all noisy breathing or they actually don't notice as significant so finding out and exploring that a bit more is important Alex has alluded to the restless legs but one of the things I also make sure is finding out a dietary history often children with autism are very fixed with what they're going to eat in terms of color or texture and oftentimes they have very limited diet and certainly low iron stores is related to restless legs or periodic limb movements overnight and also can be related to poor sleep. I mentioned autism here I think there are some definite neurobiological differences in this group it's not the same for everyone but I think that is another medical problem contributing to these sleep patterns and then anxiety certainly with older children you can see more pervasive anxiety contributing. The other thing then is exploring the sleep and I talked about how to take this history finding out what's happened in the past and how mum has approached this and really reiterating a lot of the things that Alex has said and not that there's anything magic that we do sometimes it's more individualizing the approach so that this family are happy with it have enough support around that they can be consistent with it to then introduce changes that are able to be sustained and I think the other thing is also making sure that the family are united in what they want before I set in place any treatment plan it's no point having one parent want one thing and another parent want another because I think that's doomed for failure and then the other thing is finding out if the parents do want a child to sleep with them or not sleep with them we call this reactive co-sleeping when the parents end up doing it out of desperation rather than because they want to. So I think the treatment strategies really I would divide into addressing all the medical problems I think just a couple of things I'd like to point out a lot of times children with significant developmental disabilities families feel that this is just part and parcel of the disability the sleep problems and there's nothing they can do and a lot of the behavioral strategies that work with children without disabilities certainly work in this group and it's really important to address that anxiety sometimes quite tricky to tease out and then the other thing is medications sometimes people feel medications won't work or they've got too many side effects or they're going to be on it for life so therefore they don't want to start so there are two things I'd just like to highlight. Great thanks so much Margo so a couple of questions coming through from the registrants that I just wanted to point out firstly all of the documents the materials for the webinar tonight including the slides are available in the documents tab on the right hand corner of your screen if you click that you'll see the materials including the case study and don't worry about trying to write down I think a number of you would have been very interested in that framework that Margo presented for taking the case history of course all of that is available on the slide pack that's available. Amanda I'd like to hand over to you next to get a perspective from you as a psychologist. I think I'm going to end up reiterating much of what Alex and Margo have also said Shanta but I started off with my slides in just when I read through what was my what were my first sets of responses and and like Alex it was really this is a complex case and with Georgie having multiple problems that are likely to be somewhat interrelated so difficult behaviors related to sleep problems for example daytime napping at school or sleepiness school related to the night time sleep but most particularly the fact that mothers tired her husband isn't there to support her most of the time and she's got these other children to support in the family conflict that may be arising as a result of that and certainly our research and clinical experience the others point out is that mothers of children with developmental disorders or typically developing children with significant sleep problems are at high risk. There's sleep problems and cells and anxiety and depression so that's a real consideration for mum and helping mum. So in terms of the background when I was going through the background as a psychologist these were a couple of things that crossed my mind that I'd like to know about particularly how Georgie communicates and her level of functioning because they're going to be important things for how we decide to implement any sort of behavioural intervention if we if we do do so we really need to know a little bit more about Georgie from that perspective. I thought it was interesting that she gets ear infections that because they can contribute to sleep problems and I thought it'd be important to also know a bit more about her support team she does seem to have good support but her support team may actually be able to be used in some way to help with supporting mother and helping with aspects of the sleep intervention because one of the things we'd like to probably stop is napping on the way home and this potential for napping and so on at school because that's going to interfere with night time sleep excuse me. In terms of then Georgie's sleep I've gone to get a history of sleeping problems and the bears that Margot outlined is really excellent for that and Georgie's been to sleep school so I'd be interested to know what advice she got there and why mum got there and why it didn't work or why it might have worked and isn't working now because that might have some bearing on what we want to do in the future and then these were the things I thought that we knew that may in some way relate to her sleep problem and you'll see there's a range of things that we already know and a number of them potentially might have some sort of medical background to them whereas others may be behavioural and related to the sleep problem. In terms of the psychologist's perspective because there are multiple problems there one can really say well where do I start do I start with the family do I start with the child's behaviour and sleep do I start with the medical issues so the first thing that one really would want to do I think is to take a full history about Georgie and and the presenting issues so we'd want some background as well as what's going on with the current sleep problem and I always think of sleep diaries useful to get a handle on the current sleep problem getting parents to keep a sleep diary for one to two weeks if possible noting noting things that might go wrong that might have affected sleep on particular days and I think it's important that we actually deal with those medical issues first I think it's important that psychologists and other non-medical professionals recognise that medical problems can contribute significantly to children's sleep issues and that they probably should be checked out and be being dealt with before one gets into behavioral interventions if the medical problems appear to be here and others have highlighted the constipation and the bed wetting the snoring she's sweating at night I'm not sure whether that may also have have some sort of medical background and she's waking screaming she's got epilepsy so as Margot said the epilepsy well controlled so those are things the psychologist needs to refer for and to get checked out so what can the psychologist do I think the families need to be need to be prioritised you need to start where the family family wants to start and two fairly simple and important things that one can do with the family is help them to develop some good daytime and bedtime routines for Georgie that are consistent because that's going to really help with this help with the sleep and help with any sleep intervention that's going to be put in place to look at Georgie's bedtime environment for example um iPads some sort of very very um flavor of the month with children with autism and research is coming out now including some work that we've done that children with autism in particular who use screens in the bedroom um actually have poorer sleep they sleep less than other children do there's the enuresis so helping with toilet training may may be useful before we even get to the actual sleep issues themselves and dealing with some of those things may already start to deal with the sleep issues and then we need to determine a behavioral strategy and there are a number of to choose from and that really should be done in relation to the case and also what the family feels they they can actually handle to facilitate the bedtime routine to deal with the night waking and the co-sleeping if they want to and to eliminate daytime naps and sleeping significant sleeping in and assisting parents deal with daytime behavior and most importantly finding some way of um supporting mum because mum is key to this and she's at the end end of the road thanks thanks Amanda we're going to come back I think uh to explore the behavioral strategies more I think a number of the the registrants tonight are very interested in non-pharmacological treatment approaches I think we might come back in our conversation to that but but let's move on to hear from from Sue to get an occupational therapist perspective thank you Sue hi thanks Shanta and I guess it's a good sign really isn't it that that's everything that the speakers before me have said I feel like I'm repeating but I guess in a way it's a good thing because we're on the same page really um from an OT perspective we would try to do our assessment in a family home is possible probably the only reason we wouldn't is if the family chose to not have us in their home and also I imagine it would be somewhat successful and effective if we could have close parents at that meeting um the way I work is that I always we usually get referrals from the child's therapy or intervention support team so I think if I was doing an assessment I would love to have a key person from that team participating so someone who already knows Georgie knows her family and already knows what kinds of supports and interventions are in place so in from an OT perspective they're the people who'll be following up and doing a lot of follow-up and carry over um I'd also be asking the team just some background information about their family strengths and their challenges, their culture, health, what existing supports are in place um just the nature of the household and also housing some of the people we see sometimes housing itself is a challenge and that can have an impact on on their resources in terms of just you know how many bedrooms are there what kind of space they have who are they sharing the space with um so definitely just that context for the assessment I'd go even further than that with assessment so we I would probably spend maybe an hour to an hour and a half with a semi-structured interview to try and get a whole picture about what's happening with Georgie some background about her general sleep um and then focusing on issues that are more common to children with conditions like autism so asking about as others have mentioned asking about you know restless legs um what's happening with her snoring and her breathing daytime sleepiness to get that picture that has been guide me as an OT in terms of where I need to refer to and in terms of GPs pediatricians ask whether or not we should be asking for ENT refills etc um we definitely provide opportunity for parents to talk about what their concerns are what their goals are what they expect what they believe is is good sleep in their family and I find we often have to ask the same question a few ways you can't just ask one question get a straight answer often parents need to hear the same question a few ways so we really get the picture clearly um further to the assessment I find as Amanda mentioned sleep diaries can be a fantastic tool I find activity logs are also really useful I know all other three presenters have talked about the fact that daytime activity what what Georgie does and when she does it could be having a big impact on her sleep but we'll be we write to an activity level we can get family to write down different things she does during the day does she do something on a certain day does she have time spent out in the park or playground and what's her sleep like in relation to daytime activities we might offer um the use of an overnight video if we wanted to get more information about her her evening and settling behaviors about the sleep environment and also to get a picture of what's actually happening during the night in the home setting sometimes the video can show us things that perhaps even the parents haven't seen or noticed and that's quality is true um then in terms of intervention to Georgie I guess we'd be talking as the others have mentioned about general health even though medication etc is not something that I'd be prescribing I'd certainly be asking about what her timing and dosages of medication um how that seems to be having an impact on her daytime sleepiness and certainly she in Georgie's case she is seeing her GP but if she wasn't seeing a GP or her pediatrician I'd be certainly saying look you need to let your doctor know about this talk to your doctor equally asking about anything that might suggest restless legs in your own periodic leg movement disorder other parasomias such as night terrors etc to rule those out and particularly sleep disorder breathing we just ask questions around that that could guide us in terms of referring back to the medical specialist um we talk a lot about her daily and evening routines what she likes to do when she likes to do them what happens at school in particular I think it was Margot who mentioned weekends what happens on the weekends as she's sleeping longer how does that affect her rhythms and her routine we also look at the household bedroom environment daytime activities morning sunlight I find is a really interesting one often when we go into people's homes we notice that people tend to keep their house very dark just like guess it's to keep the heat out and I often surprise at how little sunlight the children might be getting and we know that that can have an impact on melatonin and that and pretenses to sleep in the evening so we look at all those things and in particular I'd be asking about what her team already doing in the school setting around things like her behavior her communication sensory regulation what kind of support is already in place for her participation in her everyday activities what do we already know makes her come what with her up and how can we build that into her evening routine and strategy um in terms of intervention I would let me try and take the opportunity to talk to Georgie's mum and dad about what happens with typical sleep so make sure that they're aware of aspects of circadian rhythms the need for routines and um the timing of the routine of activities etc and we also start talking about ways and how important it is to teach Georgie to actually fall asleep in her own bed so that whole importance of that sleep on set association so we take a lot of time looking at ways to help that happening in a way that works for the family and again bringing the team as much as possible there's possibly already strategies in place around her behavior communication social stories things like that so we look at that and see if the team can offer social work or psychosocial support for mum who sounds like she's getting quite burnt out yes um finally some specific strategies from an IT point of view lots of things around helping to manage the environment or set it up so that it's as safe and comfortable as it needs to be for Georgie so talk about things like what's happening in the evening is the tv on is it loud what kind of alternatives might there be to help create a calming setting environment we look at the bedroom environment what's happening with the light and dark do we need dimming light lights are there fans or heaters that can make a difference we'd focus on specifically on bed comfort as well with Georgie's got issues with her continents and enuresis what kind of moisture proof bedding at a family order using if they're using you know a plastic sheet from Bunning what kind of impact is that having on her comfort and her the thermal regulation we might be able to lend her special airflow underlay of a thermal regulation bedding and finally from an IT perspective we'd look at sensory tools that could make a difference with her self-regulation in terms of being able to become more calm and more settled both before sleep and during sleep and there's lots of lots of different sensory strategies that might be really relevant for Georgie thanks thanks Sue that's that's terrific to get that perspective and I think a number of questions have come up about the environment as well look I would now like to really invite the panel that's with us tonight to begin a conversation that really draws upon some of the themes that comes from from their presentations and also this is an opportunity for all of you who are listening as well to join in the conversation as well we can't see you but we can read your comments and we welcome you to make comments in the general chat box but I thought I'd start there's a few comments that have already come through on on melatonin and so I thought I might start by asking Alex Alex I understand you had a question that you wanted to pose to Margo and it was on the use of melatonin in a in in this sort of a case would you like to go ahead and ask Margo that that well melatonin has become a very popular treatment of course for children with ASD and ADHD and I'm aware that melatonin really works in two ways either as a sedative soporific but also as a chronobiotic in altering sleep cycles and I'm just wondering whether there's any evidence that there is actually melatonin deficiency in either ASD or ADHD I'm aware that there might be in either of those but how robust is the evidence that there's actually or is it mainly just as a sedative that the melatonin works in this case look there are certainly several small studies around that are looking at the evidence for melatonin some have shown that there's an abnormal platelet serotonin serotonin C sort of precursor of melatonin and certainly that's a sort of biochemical finding in children we've also there've been a couple of papers that have looked at melatonin receptors and they've been sort of genetic abnormalities shown with those and there's also been a couple of papers looking at one of the enzymes that is responsible for the synthesis of melatonin from serotonin and showing mutations in that particular enzyme as well so I think there is a suggestion that there is an abnormality I suppose the concern that I have is that melatonin isn't necessarily the answer and also if you have significant sleep association children can sort of override the effect of melatonin they may be sedated at the beginning and then I can go to sleep but you're still going to have frequent night time waking if children if you're not using the medication in conjunction with addressing some of the issues that will relate to night time waking thanks Margot so you mentioned there or Alex I think in his question was talking about these different actions of melatonin chronobiotic refers to this action of melatonin on the biological clock and that suggests that there is some biological clock or circadian rhythm disturbance that that melatonin could potentially correct or treat Margot do you see circadian rhythm disturbances often in autism children with autism spectrum disorders there is a suggestion I guess in the case study that Georgie has this tendency to sleep late would that in your mind as a clinician suggest to you that there could be a circadian rhythm disturbance um I think probably in this case having read it I think by the time you went into the nitty gritty Georgie isn't falling asleep till very late and then if she has her normal sleep requirement that's why she sleeps in and then she's cut short on school days because she has to get up and go to school and then she catches up and then you have a nap in the week in the evening that's been contributing to difficulties with sleep onset the children that I see with autism who I think there are problems and this is I see it a lot and even children before they're given a diagnosis they're dividing the night up into two and having this prolonged waking for anywhere between two to four hours they don't want any interaction they don't want to see it apparent they just wait they entertain themselves and it's gone for hours and so I see that too often to not feel that there is something in terms of the way the neuro-anatomy neurobiology neurochemicals are working in this group and and just quickly Margot there's a question also that one of the participants has asked is there an age limit you know for prescribing melatonin what what age would you would you give melatonin look I must say I see people prescribing it for babies I personally do not I would be addressing a lot of the behavioral and schedule strategies first but then certainly in sort of three and four year olds if you were doing all that and you have a family coming to you with very good patterns and routines and there's not a lot else you can work on then I'm certainly happy prescribing melatonin the other thing I think we do really badly is we give very high doses and I think that there's not a lot of evidence for that people try a little bit and then they build it up and up and up and then I think there's actually a lot of work out there that you tend to dull a receptors to it and so you actually have to stop it so I think using small doses and addressing other issues the way I would go and Shantha I had a couple of comments that I have to add from a from a research perspective certainly with the the other thing that people have suggested may be abnormal in a subgroup of children with autism that there's a very small amount of evidence for is the clock genes that control circadian rhythms and there and including melatonin rhythm so I suggest in off the space to ladrism or or a dampened rhythm but and some people have a couple of papers have shown reduced melatonin but as we were discussing earlier um just a paper just being published from best mellows group in the United States with nine three to eight year olds and they've shown who have responded to low dose melatonin um for settling and and getting to sleep more quickly and that's our no no abnormality in the melatonin rhythm in those nine children so I think there's likely to be variation and as Margo says um perhaps for some children there is a problem but for others there probably isn't can I just add a little bit to that saying my real feeling about melatonin is that possibly the more important aspect of the circadian rhythm is going to be is getting out into the light during the morning I mean I think morning light is probably more powerful than any melatonin that can be used and how you feel about that shantha but I think that getting the children outside particularly in that morning light is much much better at regulating their circadian cycle so morning light and and and light and the light dark cycle of course is is is the the primary cue for circadian rhythms and if you suspect a circadian rhythm disturbance and and amanda has just talked about some work that points to you know an underlying mechanism that could explain this circadian rhythm disturbance that at least observed in you know a subset of children with autism spectrum disorder so alex absolutely right that that light therapy and just strengthening the light dark cycle could be a very important and effective treatment approach now morning light has the effect of advancing or bringing earlier in time circadian rhythms and evening or late night exposure has the opposite effect and amanda mentioned in her presentation this increasing trend for on you know use of devices electronic devices and so on that emit light and so that's another thing to look for is that the use of those devices late in the night can exacerbate this delayed sleep problem because light exposure at that time can actually delay circadian rhythms so so alex that's a really valuable comment in terms of a of another treatment approach so can i add to that from a a therapist's perspective i think that's a great point where it's a really good way to to use the child therapy team to see if there's a way that of building that into the support that they can provide so on a number of occasions we've had the child therapists who are already going into the school working with the teachers they're able to talk to the teachers about can the school provide opportunities for morning outdoor activities we stress it with the families and we talk about you know there's a chance that the child could eat their breakfast out on the background or whatever but often families feel that they're very rushed if the child is difficult to wake in the morning it's hard to get that opportunity they can't get the child to walk to school so it's really nice way of linking in with the school get the teachers to explain to the school how important it is to have that morning light and often they're more than willing to build in it that outdoor activity at the start of the day which is a really nice way of doing it i think thanks sue so sue maybe i wanted to put another question to you that's uh that's coming from some of the uh registrants as well you mentioned a number of different ways of investigating georgie's sleep disturb and sleep diary actigraphy and amanda and the others also talked about these one of the questions is when you have uh in in this case georgie's mother who's as you pointed out you know really burnt out how successful are you in getting the family to engage in completing things like a sleep diary uh and getting i mean an actigraphy there was actually a question from one of the registrants just to clarify actigraphy is a wrist-borne device that has an accelerometer in it that measures activity levels and allows a clinician to be able to you know measure the rest activity cycle have an objective measure of the rest activity cycle so sue how do you get someone like georgie's mum to engage and really participate in this kind of documentation process that's a fantastic question and and it's exactly right when families have already got a huge burden of care often sleep diaries and logs are the hardest thing to ask people to do and that's in fact where we find actigraphy to be very useful because often depending on the child's behaviors some children who don't tolerate wearing a little device around their wrist but we find that most children do it's just like a little plastic withstand really and sometimes we say to parents look this is a really good way for us to get a good picture of what the patterns are at the moment in terms of the time she does go to sleep and what time she wakes up the really good way of seeing weapons on weekends and weekend naps and sleeping in and you get a lovely visual overview of those sleep and wake patterns with perhaps minimal burden on the family i find some families really want to write everything down it's kind of such a big deal they they want to tell you everything others it's like they'll start and by the second day they've dribbled out and it's just too hard so in terms of diaries and activity locks it varies from one family to the other so another question that's coming up from the audience is about diet and i understand you want to ask Amanda a question about the role of diet and dietary factors do you want to go ahead and ask Amanda that question yeah sure um Landi we've talked about this in the past i know um you mentioned to me a couple of years ago about a study that you've been involved in looking at groups of children who one group who had a um a diet that was free of preservatives and additives and i know that this whole conversation about what children need and its impact on their behavior has come and gone has been a difficult conversation over the years but i i find what you told me to be really interesting particularly because i find a lot of children with ASD and in particular ADHD seem to have a an obsession with really strong favorite foods such as you know migraine noodles and things that are high in those artificial flavors and i'm just wondering you know what your comment is based on your previous studies that you've done um yeah that's a great question so diet's a big issue in children with autism spectrum disorder and i really don't think there's any good evidence for a gluten and casein problem in these children so i want to dispense with that one but what Sue's referring to actually is a phd project which sadly this phd student has presented at conferences but never quite got to the publication stage but she can compare the behavioral interventions versus the what's essentially the fail safe diet which is used um at the ropenselford hospital um allergy clinic and i think all those seem to be the one that the food den gate uses and she compared that for children with severe behavior problems so they didn't necessarily have a clinical diagnosis of anything else and they were screened into it and we did have a pediatrician as her second food supervisor so we tried to be very controlled with it and some of the five of the children happened to have a diagnosis of asperger syndrome basically what we found was these children uh responded very well to a diet that was um and it surprised us how many of them did because it was virtually all of them responded very well to the diet that was free of preservatives and additives and solicitates and amines now that doesn't mean that the children would necessarily have responded negatively to all of those compounds but rather that they were probably responding to some of them and the research needs um certainly needs to be repeated so their behavior improved but we also had some sleep questionnaires in there and we found that their sleep improved along with their behavior on these diets so i think it's an interesting question for a subgroup of children it's not autism specific and it requires um some some added um certainly requires more research but if you were suspicious that this was going on you should really go to a dietician and test this out properly parents shouldn't be rushing off and non-qualified people shouldn't be rushing off and altering children's diet great thank you Amanda that addresses another comment that one of the participants made tonight is the role of the dietician and soon i'm going to be coming back to each of the um the panel members to ask them a little bit about how they uh interact with other clinicians in in cases such as georgies because you know we want to understand how to uh how to collaborate in in the care of a complex case like this so we'll we'll hear again from the panel members on that issue uh margo i understand you had a question for alex um on how a gp alex had some wonderful perspectives about you know really listening to to georgie's mum uh you had a question about the issues the practical issues facing gps do you want to go ahead and ask alex that question um well i suppose looking at my first slide that i did and not being able to go through it and i have a lot more time with patients than a gp does and i found as alex said a sympathetic ear but trying to obtain a history is a very time-consuming exercise and i'm sure that's why there's a lot more prescriptions out there um because it's much easier to write a script and take an extensive history in your practice um do you how do you sort of categorize what you take in the time that you have and do you have any short cuts or flags that you could share with us yeah i think that's a really important question because um now i'm running more sleep techniques i'm i actually have an hour with a patient which is absolutely luxury for anybody who's been involved in general practice um one of the strategies i suggest that to start with don't fear asking about sleep one of the worries is you ask about sleep and suddenly you open uh you know pandora's box of all the problems that have come out and the people are a bit fearful of that um so what i often do is ask uh suggest ask about sleep if they do come up with some sort of sleep problem that they're worried about or just sleep in general then i'd suggest that you make a a separate consultation for that so and in the interim there are one or two uh sleep questionnaires which would be very interesting there are once read else and the also the sleep questionnaires that are useful for children as well uh and so these can be accessed i'm sure uh through your um your gp they would be able to find those and indeed most of them are on the internet anyway um so for the gp to give uh or the primary health care are really i mean whether it's a pharmacist or a psychologist who's seeing the patient for the first time and they're coming up with this sleep and you don't know how you're going to deal with it in the time you've got um make a special appointment to see them get them to do a sleep diary get them to do a sleep questionnaire specifically and then they can come back with this information and you sort of already started the conversation going at that stage because as you say you can't take a full sleep history in in 10 minutes and often people come up at the last minute and say oh by the way my child's not sleeping very well at the end of the consultation which you know uh you haven't got time to go into that so setting up a special time i think is probably the key and using some of those sleep questionnaires great thank you alex so uh there's a few questions coming up uh sue that i might direct to you uh sue and in fact margo also was interested in in getting this perspective from you can you tell us a little bit about your experience with weighted blankets are they effective uh and which patients would you choose to use them with sure um yes i've certainly found them to be effective with many of the children that we've worked with it's i find it very hard to but certainly not all i think any therapist who are working with children from a sensory regulation point of view will will say that it's a very individual thing and so first of all we do it we would ask the questions about well what what kind of sensory experiences does the child seem to find more calming and soothing how does the child respond to a deep pressure that weighted blankets provide often we find that the children get as much benefit from weighted blankets before sleep time as they do during sleep time so often children might actually have a weighted toy or weighted blanket over their shoulders on their lap while they're eating their dinner or while they're doing a calming activity having a story with that deep pressure seems to help bring them down make them calmer more felt more regulated um and then in terms of how they use during sleep very individualized we always recommend that the parents observe and monitor in the first instance get a feel for how it's working for the child in Australia we find children often get very hot using weighted blankets so we've had some lovely success by using a blanket in conjunction with thermal regulation bedding but i have to say every child is different and you have to really take each child you know as an individual and and let them trial it a little bit at first okay thanks thanks Sue well uh we have lots of questions coming in and we have uh you know lots of questions i know you'd like to ask each other as well margo quick quick question for you there's a couple of uh audience members have asked the question about ritalin and the use for potential for use of ritalin in a case like this do you want to just comment on that um i personally wouldn't be using ritalin in a case like this when children get into sufficient sleep often uh you know their behavior um their difficult behaviors and uh are exacerbated the next day and i suppose you can go down that pathway poor concentration in attentiveness and hyperactivity but my concern is that due to sleep deprivation and so rather than thinking about ritalin i would be really working hard on consolidating and maximizing this child's sleep yes okay margo you had a question there was a few comments from the audience as well about um about communication issues you had a question for uh amanda about uh about communication in a case like this do you want to just ask Amanda that question yeah i think um certainly in the higher functioning children with um autism anxiety is well recognized as being a co-morbid condition and i think sometimes it's very hard to tease uh that out particularly children ask that verbal and i suppose i wanted to ask you if you had a particular way that you approached that clinically any particular questions or behaviors that you noted that might flag at anxiety um a significant component of this sleep problem yes um in terms of anxiety in in children with autism you're right it's it's a very big issue and in the high functioning children there's a lot of evidence that their settling problems in particular are likely to be related to anxiety for many of them in low functioning children it's a question we're in particularly younger ones it's a question that we ask ourselves here at the auger tennis and autism research center it isn't it isn't easily done but some of the things i'd look for would be separation anxiety for example so how does the child behave when mum leaves the room i've seen some young children with autism becomes very distressed when when when mum leaves the room for example very highly distressed um i'd look also at extreme avoidance behaviors so are they very avoidant of things that's uh in in the environment particular things in the environment i'd also look for increases in in repetitive behaviors because there's certainly evidence that repetitive behaviors are related to increased risk the sleep problems in these children so um under certain circumstances they're increasing these stereotypes and repetitive behaviors and the other one is um response to changes in the environment many children with autism don't like change in the environment and some children with autism are extremely sensitive to changes in the environment and these this may also be an indicator of anxiety and given the high level of anxiety in the higher functioning children who can tell us about it and it does seem to be characteristic to disorder i think we'd be reasonable and suspecting that it's also a problem for lower functioning many lower functioning children thanks amanda well i'm sorry to say everyone we have so many questions still to address in a case like this but unfortunately we're rapidly running out of time and i want to hand back to each of the panelists to really come back to the heart of the mental health professionals network and that is how do we get clinicians working more closely together uh to address complex cases like this so i'd like uh to just let each of the panel members now just give one or two concluding sentiments particularly focused around the problems that they see and the opportunities they see in collaboration in a case study like george so i might start with you alex for your perspective um i think so many uh gps obviously deal with and and primary health people generally deal with so many disorders uh generally for adults and children that they're certainly not deemed to be experts in these particular fields so knowing and referring to people who you know have special interest and expertise in these particular disorders almost whatever it is i think that's most important the reverse of course as i mentioned in my initial presentation is that it's really important for those people to refer back to the the primary health care obviously my case to the gp um i think the final word to say from my perspective is that you know children's sleep issues are common even in the general public in the general population what you see with these neurodevelopmental disorders is that the sleep disorders are just that little uh a little bit more severe a little bit more prevalent um but the behavioral strategies that are used the routines the uh the strategies that are used for children in general uh are very effective in all the children that we see so just because you've got a very special child with a special um particular uh cluster of disorders it doesn't mean to say that these ordinary behavioral strategies that work for your ordinary for your children that you've had otherwise aren't going to work they very frequently will and there's lots of evidence to say that it's much more effective to do those than start prescribing medication and uh even melatonin thanks alex uh margo could i hand over to you and margo one of the things that we haven't touched on is you know where to access specialist care particularly in the public system so if you could just include that in your reflection as well as the you know in terms of public services that might be available in complex cases like this uh thanks margo um i think when you're assessing a case like this part of the role i suppose of being a medical doctor is sometimes um uh reassuring parents that there isn't anything medical or anything that they're missing that's contributing to the um sleep problems and so reassuring a little bit what alex said people sometimes think about sleep and coming and seeing me and think oh i must have a sleep study but it's an actual fact the majority of kids don't need a sleep study but i think one of the things that we can do is examine the child and go through all the medical complaints and then reassure parents that their child is healthy and then help hopefully move forward so that then they can enact uh upon some of the behavioral strategies that are suggested in terms of accessing services i mean sleep studies that are a limited resource in children they're very labor intensive equipment intensive and um most capital cities have access to a sleep lab but they have very long waiting times and Tasmania doesn't have a dedicated lab, Northern Territory doesn't but i think a sleep study isn't magic and sometimes people think oh you have to have a sleep study to proceed whereas an actual fact i don't think you do um in terms of the um things like restless legs you know i'll take a dietary history i'll start children on iron in terms of snoring if i feel it's obstructive sleep happening and then sometimes i start treating with intranasal steroids or i'll get an ent assessment i'll sort of start treatment while setting in place a supportive behavioural program and i think that's the only other thing i'd like to raise is that particularly with children with developmental disabilities you know sleep out there's got this reputation of sleep problem equals control crying and it's really hard to spell that and i think you can set in place more supportive gradual programs that actually change behaviour um and we're not very good with conveying that so that would be one thing i'd really emphasize thanks margo amanda such a crucial role in uh in in non-pharmacological approaches to the management of a case like uh of georgies do you want to comment on the perspective of the psychologist and how a psychologist may uh become involved and collaborate effectively with other clinicians in management well i i think as i i outlined you the psychologist really needs to be aware of potential medical contribution to children's sleep problems and and to they also they they don't think there's a medical issue happening from their history they may start with a behavioural intervention in conjunction with a family and there are a number of approaches and interestingly whilst many parents don't like extinction or or control crying we have actually found that many parents of children on the autism spectrum do use this successfully because they're very used to using the behavioural type interventions with their children because it forms as part of the intervention that the child's generally having during the day and they can do a good job of it but you need to provide them with a lot of support if they are going to and if they don't like to do that there are a lot of other kinds of gradual approaches and more gentle approaches so that the psychologist that we don't have time to talk to about the psychologist can use to to do that um so if the psychologist finds though that they didn't think it was a medical problem and but their behavioural interventions aren't working they also need to be aware that maybe there's something else going on that they've missed and they do need to consider um writing to the keeping the GP informed and and sending a pair of facts to the GP with um with a message with a report and asking for a referral to someone like Marco yes I think that's really important to know that you really should think about the fact that you can't handle it all yourself yes thank you so much Amanda and Sue from an OT perspective Sue so just final concluding remarks yeah well from the point of view of collaboration I think that two-way street is crucial so certainly often we find ourselves saying to the families speak to your doctor have you told your doctor about this to pediatrician neurologist your GP that's one point but equally I think it's really important for all of us if we're looking at interventions particularly around behaviour communication those kind of strategies find out what's already happening with the child therapy team there may be some really specific, sophisticated, really targeted strategies in place already for the child through schools through the therapy team it would be kind of productive in fact to not communicate with those teams find out what they're doing and how they're doing it if we can harness those teams they can in fact be a big part of the sleep picture maybe they don't realise it but they can so I would really stress make sure we link in with services that the child's already receiving across all their environments. Thanks so much Sue so I really I want to thank all of the panelists tonight for I mean we have an absolutely stellar group of clinicians in the panel tonight that have given us a shared you know fascinating perspectives on this really complex case study so I really thank you all for your contributions so we've seen tonight that this is indeed the case of Georgie raises a number of complex issues that really need a multidisciplinary approach both in you know diagnosis and in management. Amanda put it very nicely that the clinicians really need to understand that you know that the two-way street in this referral process the critical role that the GP plays and understanding where another discipline another health professional needs to come in. We see clearly in this example of Georgie that sleep is of fundamental importance and it can have a significant impact both on in the child in terms of their nighttime behaviours their daytime behaviours as well as a significant impact on the family and so I think that this case study tonight has highlighted the critical role that sleep plays in normal functioning in a child. I want to remind you all to complete the exit survey before you log out it'll appear on the screen as the session closes and certificates for attendance to this webinar will be issued in four to five weeks. Each participant will be sent a link to online resources associated with this webinar. We have great resources available and I thank the panel members for drawing attention to some wonderful recent resources that have come out so you're going to get a set of rich resources to really support the discussion tonight. A reminder about the next webinar that's coming as well and I'm asked to really encourage you all to consider setting up your own special interest network exploring autism and sleep disturbance. Clearly there was a lot of interest in the webinar tonight I can see from your comments as well that there's much to be gained from sharing information with one another so we really encourage you to set up this special interest network for those of you who are interested. So thank you again for your attention. Thank you to the panel members and thank you to the audience for joining us tonight. We look forward to seeing you again for the next webinar. Thank you.