Professor Elizabeth Elliott:
Hello everyone and welcome to today's webinar from FASD Hub Australia. We'll be talking today about setting strong foundations - early interventions to help children with FASD thrive. Today I join you from the Gadigal land of the Eora nation, but our participants joined from all over Australia and I'd like to pay my respects to Aboriginal and Torres Strait Islander peoples who were the first to live on these lands and who remain custodians of the land. They must be acknowledged and given a voice both to enable truth-telling about their past and to inform their future. My name is Elizabeth Elliott and I'm chair of the FASD Hub Advisory Board. I'm a professor of pediatrics at the University of Sydney and I head the New South Wales firstly assessment service at the Children's Hospital at Westmead.
The FASD Hub was founded by the Australian government of Department of Health in 2016. We aim to raise awareness of Fetal Alcohol Spectrum Disorder and alcohol use in pregnancy, and to be a one-stop shop for evidence-based resources. The Hub connects clinicians with researchers and policy makers with individuals and families who are living with FASD. We run educational webinars such as this one today and we provide a repository predominantly for Australian research and policy. Our most popular pages are the Guide to the Diagnosis of Fetal alcohol Spectrum Disorder, the service directory and our educational resources. So please visit us at fasdhub.org.au, and we welcome your feedback. The purpose of today's event is to highlight the importance of early childhood, that is 3 to 7 years, as a time to recognize developmental problems that might suggest Fetal Alcohol Spectrum Disorder, to implement early treatment which we know improves later outcomes, and to provide support for families of children with FASD. Today we'll discuss some of the common challenges that we see in young children with prenatal alcohol exposure including executive function. We'll learn about strategies to enable self-regulation in young children. the importance of quality caregiving. and about some resources that are available to support families. And now I'd like to welcome our four speakers.
The first is Professor Sharon Dawe. Sharon is a Professor of Clinical Psychology at the school of Applied Psychology at Griffith University in Brisbane. Sharon leads several research projects investigating the relationship between adult Psychopathology substance misuse in pregnancy and its impact on child outcomes these include the development and evaluation of the Parents Under Pressure program, research on the assessment and diagnosis of young children with Fetal Alcohol Spectrum Disorder, and the impact of childhood trauma both on parenting and on child outcomes.
Our second speaker is Dr Denise Hatzis. Denise is also a clinical psychologist and is Clinical Director of the Child Development clinic at Griffith University. Before training in Clinical Psychology Denise worked as a registered nurse and midwife in major tertiary hospitals. Her role at Griffith University involves both research and delivery of diagnostic assessments for children ages 3 to 7 with Fetal Alcohol Spectrum Disorder. We'll then be hearing from Lyndall, who is a caregiver of a child with Fetal Alcohol Spectrum Disorder and will share stories from her lived experience.
And finally we welcome Sophie Harrington. Sophie is the Chief Operating Officer for NOFASD Australia. She's a FASD educator and she coordinates NOFASD's lived experience expert advisory groups She's a member of the steering committees for the national FASD awareness campaign and the FASD diagnostic guideline review as well as the FASD Hub advisory committee. And Sophie has lived experience of Fetal Alcohol Spectrum Disorder.
So welcome everyone and I urge you to put any questions you have in the Q and A function, and we'll come to those later. So now I'd like to introduce Sharon and Denise.
Professor Sharon Dawe:
Thank you. Thanks, Elizabeth, and thank you everybody for joining us today in the webinar. It's exciting to have so many people. um as Elizabeth said we're going to talk to you a little bit about how we can optimize outcomes for children with prenatal alcohol exposure. So the the ultimate goal for Denise and I, and for all of us working in this field, really, is to help children be the best that they're doing. And when we think about what that means, we can glance over these pictures all of whom are young children aged between 3 and 5.They're all doing things that are going to enhance and optimise their development. They're playing, they're reading, they're communicating. We've got little miss there with her violin practice. We're running all of these things are key parts of children's lives that help us optimize development.
And the underlying skill that is particularly important for children aged between 3 and 7 is the development of a set of cognitive functions called Executive Functions and these are critical to all of the activities that you saw before. They're the the parts of our brain that help us pay attention, plan, organize our behavior, our thoughts, and our actions.
So let's just drill down a moment and think about what it is that, um, we mean by executive functions. We saw it was the left, we're thinking about working memory, we need to be able to temporarily hold and organize information for everyday tasks and in order to be able to do that we need to have good attention and control. And so working memory helps us organize our world. We move to the right, and we've got behavioral and cognitive inhibition. What do we mean by inhibition? We mean the ability to suppress a thought or a behavior. We think of going into a crowded room, we're screening out lots of noise and stimulation to focus on the one person that we're talking to. We might even need to stop thinking about other things and focus. And then we have this final executive function called cognitive flexibility. This is something that tends to develop a little bit later in childhood around about 6 to 7, whereas working memory and inhibition we see rapid development around about 4 or 5 and 6. And so by cognitive flexibility we mean literally the capacity to be flexible in our thinking. Means that we sometimes need to reappraise, refocus, rethink and have a new point of view. So all of these executive functions are really critical the day-to-day activities.
And let's have a little look at this activity here we have Mrs. Brown who's reading the children a story. The children are all sitting quietly on their bottoms paying attention. The end of the story, Mrs. Brown is going to say "Okay everybody, I'd like you to quietly go to your desks and get your library books out from your tidy tray, get your library bag, and line up by the door." So immediately we have a whole range of challenges there. We've got to have working memory, and attention, we've got to zoom in and listen to the instructions that Mrs. Brown is giving us. There's actually a lot of instructions, there about getting up and quietly going, and remembering where the library book, where the library book is, and the Tidy tray, etc, etc. Now along the way, Mrs. Brown is going to say "oh whoops, hold on everybody, it's assembly. I need you all to get your hats, not your library bag." So there we've got an example of cognitive flexibility. Those little children 6, 5, 6and 7 year olds were all on track to do it, but suddenly they need to change track that we do need.
For most of the children in grade one, this is going to be pretty challenging. But by about halfway through grade one towards the end of grade one, they're going to- many of those children will manage this complex set of instructions by grade two. They're going to be pretty good at it, and by grade three most of them will have nailed it. The problem we have is for the little person with FASD, even by grade three you'll not be able to plan and organize their activities as well as other children. Our question is can we intervene early to help that little person just manage a little bit better?
So how are we going to do that? Well there's some key elements of children's environment and children's lives that are really important to development of executive function.
Dr Denise Hatzis:
One another aspect of child's a child's life that contributes to the development of executive function is the connection that the child has with their caregiver. We know for children to achieve optimal development in their social emotional and cognitive functioning their caregiving environment needs to be supportive there is considerable literature literature supporting the the children who grow up with caregivers that are sensitive and responsive to their children's needs, their development trajectory, including executive functioning is significantly better. Therefore, conversely, children exposed to multiple adversities during their early developmental years are more likely to experience attachment related issues, language difficulties, and a range of internal and externalizing disorders. In other words their trajectory is not as great. Therefore a focus on improving the quality of your living a child experiences in their first five years of life can significantly shift their developmental trajectory.
So what can we - what do I mean by having a strong connection with your child? what does good quality caregiving look like? how do we show love and nurturance to our children in everyday activities? We're going to show you a little video of a dad and his son in a lovely little interaction not planned or scripted, just sitting on a couch watching TV. I'm going to I want you to observe this interaction and ask yourself - what is Dad doing? how is he seeing the child? what is that perspective of the interaction? what is the baby doing? furthermore, what is your reaction? what is your emotional response when watching this interaction as it plays out?
So what do we think? what do you think, Sharon? isn't that just a lovely interaction between dad and the little one? we can certainly see, yeah, my internal barometer of warmth just goes so high. We can see them smiling. It brings delight to um joy and delight to anyone who watches it and certainly um you want to watch it again. It exudes connectedness and understanding. We feel lovely. We've seen dad modeling um how positive interactions can occur. We hear the child um dad's response to the vocalization. There is a lovely sense the proximity between them, despite the fact that they're not sitting that close together. More importantly, the father is meeting the child whether the son is at, and not overwhelming him, and his bolstering and interaction that is supportive of development. Also the father is also the father is providing a scaffolding of learning. We certainly see that that really accumulates in the fact that despite the child has limited language and formal language, we certainly see that there is a real clear sense that a message is being conveyed. This is occurring within a naturalistic setting that is supporting Child Development and especially in language development.
What else do we notice? the child is definitely making the dad will would and not the other way around. The child is responsive to the attempts of engaging and positive enrollment, and that is being enrolled into the child's world. We see the child pointing and the Dad responding. We see the good eye contact. Dad looking and then looking away, allowing the child not to be over stimulated. We see um the modeling behavior backwards and forwards.
A child interprets their world through how Dad how a parent is looking at a child. However, if we are interpreting this interaction, then their caregiving is hostile and intrusive, and their environment does not provide them with the opportunity for learning. They're made from either vigilant and easily dysregulated, which in turn can negatively impact their ability to learn and develop executive functioning. So I'm going to now hand over to Sharon to really focus on that concept of how do we develop executive functions?
Professor Sharon Dawe:
So there's some really um important general principles, and you can see them there on the screen. Practice is really important. Games and activities, enjoyment, nurturance and safety are all the general principles that are going to provide optimal development for the individual kids.
And we can improve trajectories, and I won't spend a long time on this slide, but we will have a little look at the risks and protective factors. On the red line, when we reduce risk factors and increase protective factors in that early childhood period, we can make a difference.
So can we support the development of executive functions in FASD children? look, we actually don't know the answer to that question. The jury is still out. But we do know that children with other kinds of atypical development can improve. It can improve their executive functions so most certainly, you know ,we do know the children who have exposed with significant disadvantage can improve their executive functioning over time. So yes we need more research, we do need longer follow-up. But the bottom line, we think, is that you can't wait for the hard evidence and we don't really have to. We know enough now to start to put into practice evidence and forms of strategies. So we need to start with the position that children with FASD will need support. They're not going to catch up, they're going to need to have extra structure, and when they seem to act impulsively, they're not being naughty. And first and foremost we have found that engaging teachers in the school is really critical to starting this process. We need to focus on caregiving. There are moments when your child is doing something that supports executive function, name them and we're talking about moment to moment not extended, periods of time, where attention is really a challenge. And we've walked through your day,think creatively about training attention. You're aiming for three to five minutes maximum a couple of times a day, and when is this? is it helping you in the kitchen? is it in the garden?hanging out the washing? Anything that you can do that will engage a small child in an activity that requires a little bit of focus and attention is going to help train their attention by manual coordination is actually really really important in the development of executive functions. And that is a very robust literature, if you've got a littlie who loves gymnastics, take her as often as you can. Soccer, all the other kinds of activities, and accept that they're going to need more structure. Their coach is going to need to know the challenges.
The - that you already engage in activities to improve executive functions. Here we've got little Hop Scotch game on the left, and we've got What's the Time Mr Wolf.
Classic example of Behavioral inhibition. You can't right turn around just yet.
And all of the things that bring joy are actually also activities that improve executive function.
Singing, dancing, storytelling. Think of the working memory task, and retention required for storytelling. And we these again through your day, sing on the car on the way to school.
Dr Denise Hatzis:
So in summary, to sum it all up, kind of you know, there's probably four important points that we really wanted to emphasise. So the first is that these children are going to grow into adults. Whilst they are children, we can accept any guidance and support in their everyday life. However, we need to facilitate and understand that this guidance and support from caregivers support networks and external structures will need to be ongoing throughout their life, and this level of support may vary over their life time, but it will be needed.
Secondly, as we are doing here, voicing a shared understanding about the facts the impact of FASD on children's developing brains and adaptive functioning, we need a wider Community. We need the wider Community to understand the strength, their strengths and challenges these children face, so as too important - so important aspects in their lives. Communicate to all who will listen that these children do not want to intentionally not be naughty or oppositional, hurt or upsetting. We need to understand that their behavior comes from executive functioning deficits. Then and only then can these children have a chance to achieve their potential.
And lastly by understanding the importance of how executive functioning develops, and the importance of early up upbringing that includes sensitive and responsive caregiving, and how all of these factors interact to support skill development and emotional regulation. We don't know how much children with FASD can improve, but we do know that early intervention at a time when the brain development is rapidly occurring, it's going to my optimize development, and we'll have more positive outcomes than doing nothing at all.
So, Sharon, I believe a picture can tell a thousand words and you know we do do a lot of training, and we've found that these two video clips um really support the importance and the development of executive functioning and to explain how to prepare joy, delight, caregiving and and others in children's lives can support them to achieve. Mastery in the simplest of activities that will then in turn support a positive sense of self and promote further learning. So that's Sharon and I, from our perspective. We'd like to kind of hand back to Elizabeth Elliott to be able to continue with the webinar. Thank you.
Professor Sharon Dawe:
Thank you.
Professor Elizabeth Elliott:
Thank you both very much, and um there's a comment from someone how much they love the vide0. It's gorgeous, isn't it? And just shows that capacity for communication with very young pre-verbal children. And now we're going to watch a video from a caregiver with lived experience.
Video title card reads:
Interview with Lyndall and Sharon
Professor Sharon Dawe:
I'm kind of curious, really, um, why or how you came to thinking about getting a diagnosis in the first place?
Lyndall:
I obviously look after Xavier and I've raised two sons. Very active young boys, um, but I knew there was just a difference. Xavier's hyperactivity, impulse control. I did know his mother's history. So Xavier was six, I believe, when he first went through and was seen by the pediatrician. But I was also told at that time that, you know, our cursor could have fallen either side. But we didn't want to label Xavier. Unfortunately, what that meant though was that Xavier then went x amount of time without a diagnosis and without those supports, because he wasn't that entitled to those supports.
Professor Sharon Dawe:
So it wasn't a straightforward navigation. It sounded like you actually worked pretty hard.
Lyndall:
Yes, with a lot of stress and it's not easy so thinking about, you know, the story of this journey.
Professor Sharon Dawe:
You got - you've got the diagnosis and, and so, Lyndall, what initially did that mean to you?
Lyndall:
Um, I guess I thought that it was just going to make, I don't know, everything okay. Um, I thought or hoped that it would mean that people who interacted with Xavier would be a lot more understanding of Xavier, because unfortunately, um, the hyperactivity, the impulse control, and things like that, some people just look at him as a naughty child. And he's not a naughty child, and I hope that it would open the doors for support for Xavier.
Professor Sharon Dawe:
So was there a sense of relief or comfort in getting the diagnosis?
Lyndall:
Um, it was scary and heartbreaking. It actually is quite heartbreaking, even when you suspect it. Um, but again, I guess that relief was kind of just coming with it meant that we can get supports in place. Yeah. Yeah.
Professor Sharon Dawe:
So we're talking about a little boy who's now just over seven which feels like a a bit late, doesn't it?
Lyndall:
Yes, oh yes, so late. It would have been helpful before school started. It could have been helpful a very long time ago.
Professor Sharon Dawe:
How would the journey have been different?
Lyndall:
Routines, you know, practicing the same things, using a lot of the same wording helps Xavier. So if I had've known and been able to get these supports in place before he got into the school system, I think that I could have helped the teachers to understand a lot as well.
Professor Sharon Dawe:
What might you have done differently if you had had the diagnosis earlier? I could have looked into a school that was more supportive of children with higher needs, that offered more to the child at the school, as well. When Xavier come to live with me, um, Xavier was four. And, you know, obviously had a background with some trauma. But I think for Xavier and for myself, education is really, really important for the carer or the parent and getting the education to myself and the training gave me a better understanding. So I could be a lot calmer when I had to deal with the meltdowns or something like that, so I could then help regulate him instead of myself living in a in a Red Zone with him.
Professor Sharon Dawe:
Let me take you back a little bit to this um idea about the early stage of the diagnosis and and the kind of things that you did differently at home. Well can you tell me a little bit about that?
Lyndall:
We have a lot of visual aids at home. So the fridge is you know, full of different zones of regulations, and things like that. So that training taught me how to regulate myself take a step back, um give Xavier time to comprehend what I've actually said to him, give simple steps, don't expect Xavier to hold on to three commands at once, or um things. So I think I'd slowed down to try and help Xavier slow down. While he's heightened, he can't retain the information.
Professor Sharon Dawe:
There's something about your self-regulation had to kind of improve and that had a flow on effect for Xavier. Yes so let's move on to thinking about school. Xavier's loves School.
I think one of the hardest things for Xavier at school is not just in the classroom. Xavier has trouble with social skills, so then you throw him into a school environment where there's 37 other kids in the class, and you know 150 kids on the playground, it was hard for Xavier and it still is hard for Xavier to the point where other kids were mean and not understanding. So in the classroom... yeah, fidget - you know, he would get out of his chair a lot. He would call out a lot. Again I think that the school look at it as just one of those children that is disruptive, not that there may have been a reason behind why Xavier's disrupting. Yeah. What sort of things do you think the schools should be doing or could be doing to help kids like Xavier? So if you have a plan B in place and keep yourself regulated.
And plan B might be something as simple as in class give the Xavier a Rubik's Cube. Let him have five minutes,ten minutes if he needs it. And he will re-regulate himself and then he'll be able to join the class again. I think there just needs to be a little bit more accepting of children's differences, to focus on Xavier's strengths, not on what we expect the classroom to reach. But I think the more we all talk about it -
Professor Sharon Dawe:
- the more we all talk about it, the more we're going to get the message out there. That's right, yeah. Yes Well thank you so much Lyndall. You're welcome. Thanks for coming in. Thank you for having me.
Professor Elizabeth Elliott:
So Lyndall gives us a very good idea there of some of the challenges in getting a diagnosis, reminding us that it's often delayed but it that has significant benefits not only for the child and their parent, but for educators and really enables people to understand what they can expect from a child and how they can respond. And now I'd like to turn to Sophie and invite you Sophie to tell us about some of the resources developed to help parents and and Educators deal with children in the early early years.
Sophie Harrington:
Thank you, Elizabeth. So as Elizabeth says, I'm going to talk to you today on behalf of NOFASD Australia. So we're the National Organization for fetal alcohol Spectrum Disorder, the national peak body for parents caregivers and individuals affected by FASD. So you'll see on the screen in front of you at the moment are 1 800 helpline number which operates 365 days of the year and also our website address there as well. So the helpline there is to call at any time and that's for families and individuals affected by FASD, but also for those Services who are supporting families um talking to somebody who really understands what FASD is about, and the strategies and referral pathways can be incredibly helpful as well as the online support groups that we run to for families which are very popular.
So we're going to talk about the Through Different Eyes, and this is a suite of resources for early years Educators which NOFASD Australia developed with the Early Childhood Australia and these were released last year on September 9th which is international FASD Awareness Day. And if anyone would like to know more please do go and visit the NOFASD website. It's a great opportunity to raise awareness so with these four resources, they are free to download They're no cost to you, and you can get these via the NOFASD website and also through the Early Childhood Australia as well.
So the four resources are a brochure, which you can see on your screen here, which actually sort of breaks down in brief the content that can be found in the Educators guide. There are excellent video options to be able to watch, which really give a great understanding for early years educators of how to have some of the slightly more difficult conversations with families. But also how to support individuals and families too if FASD is potentially suspected. And then also a poster which actually is a bit of a call out to families and also to Educators to help them to consider, ah, could there be a neurodevelopmental concern here? Could there be something more that we could be looking at?
So the the poster that I've just mentioned really looking at supporting, encouraging families to seek out support if they do have any concerns about their child's development. Looking at an introduction to the actual concept around neurodevelopmental disorders, helping families to believe and to feel that really they are the experts, they know their children, and if they do have concerns to try and feel a safe space to be able to raise them. And then the importance of early intervention. You've heard my colleagues um talking already about the importance of early intervention early diagnosis and what a difference that can really make for individuals.
Now you may have heard Elizabeth mention also in the introductions at the start that I also have lived experience of FASD. So this is my little boy. I'm his biological mother, and he was exposed to alcohol during the first six weeks of my pregnancy. So as a professional, I was a social drinker, and my Friday night thing would be wine and um enjoying that with food. And sadly we didn't know we were pregnant. We weren't expecting to be pregnant at that point, and learned of our pregnancy at six and a half weeks.
The good thing is is that we had many protective factors and much privilege that throughout that life - um -his life. He's now 17 and a half, doesn't look like this anymore, but I'm not allowed to share photos of him and his mullet right now. But in terms of where he's at, we had a lot of protective factors, that we had a very um strong family system and support, really strong boundaries, and routine and structure, which we were very fortunate. We didn't know that they were some of the factors that would be quite protective, and as he was growing older, so when he um was a little tacker, as it were, when he was a little baby, he had a number of different things that an early educator may say to me, um, things that I didn't even know to consider at that time. But things like, you know, he's very sparky, and one day he's got all of his colors, but the next day he seems to completely forget them. I'll give him an instruction, and he seems to follow, but then he sort of fades out a little bit. Is his hearing okay? do you think he should get it tested? And he's looking at things and watching things, but he doesn't seem to take it all in. Have you had his eyes tested recently? so things that were very meaningful, were meant to be helpful and supportive, and they were.
But as a parent, on each of those occasions I'd go down this path and go and check these things out, and each time come back with the there was no concern. What we didn't know back in this time because his diagnosis wasn't until he was 14 is that he actually had a receptive language disorder and he also has working memory issues. So he may have something in mind, but then he can't hold it in his mind. You heard um before when Sharon and Denise were talking about executive functioning. For him, his working memory is quite significant in terms of the issues he has. And he isn't able to be very um flexible with his cognitive thought processes, so he's very rigid, and once he's got something in his mind that that's kind of the way it is, it's fact for him. So it can be really - it could be really challenging for him to learn, and it still is. But what we've been able to do is to focus more on his strengths, and that's something that, you know, I've made touch rule. Again, in a moment, when we get we get to it, but I will be able to answer questions around my son and his development as we go through.
So the Educators guide so it talks about what FASD is. It talks talks about the diagnostic criteria and the pathways, it looks at research-based evidence, lived experience stories, and how best to support children with FASD and their families.It may be that somebody won't have thought about, you know, that a child is presenting with sleeping issues irrespective of what age they are, being an infant to much older. It might be that they're really responsive, or over responsive to sensory, be it light or sound. Maybe there's trouble with feeding, maybe there's a weak reflex, maybe they're incredibly fussy with different types of food, or handling with the motor skills, the um the spoon or the fork that they're eating with, maybe they avoid doing fine motor skill items. Maybe there's something there. They might be very active. You heard Lyndall talk before um or unable to sit still and attend to certain tasks, even though they may be age appropriate. And with my son, for example, it might be that they don't appear to be hearing what was said to them, even though there doesn't appear to be an issue with their hearing. But it might be about their delayed auditory processing, it may be receptive language issues, there could be something else at play, which if we only consider these other things it can be really beneficial.
So another part of the suite of resources are the videos. So you can access these through the link that you can see here on the website, um sorry, on the screen, and I know that the links will be made available to you by The FASD Hub after the session as well. And these videos give examples of really, sort of best price - best practice. Would be helpful get my uh my words right! Looking at different expert opinions, how to have different conversations, and being able to experience some of those insights around FASD
as well.
So in summary, the four resources we have the brochure, there are the videos, there are the Educators guide, and then the poster as well. So really looking to understand the impacts of FASD on children and their families, engaging in professional development and critical reflection for educators early Educators, recognizing and responding with empathy when children use their behavior to communicate their needs, keeping in mind that FASD if it has impacted neurodevelopmentally, which almost always is the case, then what we're looking at is that an individual may not be able to do something right now. It's not because they won't do that something, they've got more supports and structures that need to be put in place to assist them to be able to do so. Um and keeping that in mind, that it is a physical, brain-based disability and therefore supports and accommodations are needed. Um developing knowledge of early brain development and understanding of how to support children who are neurodiverse.
The Educators guide is excellent we're behaving to provide this information, reflecting on language that's being used, relating to FASD and other neurodevelopmental disorders. You would have heard Lyndall say in her video earlier that she didn't want to give Xavier a label, and this is something that is often said and is often heard. Um and the reality is is that a child or an adult who has FASD, um, they've already been given a lot of labels, a lot of very negative labels, because it's assumed that their behavioral symptoms are due to who they are and their personality, and the difficulties that they want to present, whereas more often and with most individuals is that they are struggling to be able to actually express where they're coming from, how they're feeling, what they're thinking. So being able to put those supports in place and consider that FASD could be one of those potential diagnoses really can help individuals along the way.
I wish as a biological mother that I'd been asked so many years earlier about my own alcohol use before I knew I was pregnant to help me onto that diagnostic pathway for sure. So that's all I'm going to share with you right now. I'm just flicking on the screen so that you can see that you can follow NOFASD Australia on many different platforms, as I've mentioned in the first slide. We do have our helpline and our website as well, and you may be interested to know that next year is our 25th anniversary, so we'll be having our second online two-day forum for anyone who may be interested. Okay and I'll hand back to Elizabeth.
Professor Elizabeth Elliott:
Thanks so much Sophie for that really interesting presentation. So now I'd invite you in the audience to put any questions you have in the Q and A function. And I'm just going to start with uh one question for each of the presenters now.
Sharon you've outlined some of the interventions that can help children with a diagnosis of FASD or children who are at risk of that diagnosis. How necessary do you think making the diagnosis is? Obviously there are potential downsides including stigmatization, but do the benefits outweigh the potential negatives?
Professor Sharon Dawe:
It's a really good question. We've had to give an awful lot of consideration. I think that for us the benefits of having a diagnosis are important largely because as children go through the school system, trying to understand their particular behavior challenges is helped enormously if teachers understand that they fundamentally have problems with executive function and it's not going to get better, it's not going to get a lot better, it will improve to some extent, but these children are going to need instruction. So I think it is really on balance they would be much more helpful to have a diagnosis.
Professor Elizabeth Elliott:
Thanks um Sharon. Now Denise, we heard from Lyndall about um some of the difficulties for caregivers to self-regulate. It's often not easy. Do you have any advice for carers who might be struggling with this.
Dr Denise Hatzis:
I think that Lyndall actually kind of sums it up very very well, and so far a couple of very key aspects is is learning to understand what coping strategies that can support emotional regulation. And certainly having a good self-care and to be able to enroll your support networks where possible, and family systems to be able to support your regulations so that they can then co-regulate for the child so that's very, very important. The other thing that she indicated which was very important is an understanding of the child's development and knowledge around why the child is behaving how they are. So that you can reframe in your mind in what behavior - what's on the beginning of the behavior rather than just seeing them, it seem to be, you know, be negatively doing it, potentially from where it's um what's driving that behavior, and then being able to regulate yourself so that you can regulate them. The other thing that Lyndall was very - is very, very good at, and she didn't mention on camera, is creating special moments. She has found something that both of them really enjoy and they do regularly together. So creating special moments is really important because that then gives you a good sense um a reward for what you are doing, and then you see both of - both regulation it really gives you a reward so that you're more likely to kind of do it again, and because that then goes in. If you're playing special mind, it's that caregiving relationship, it's important. There again, if that's working well, then your regulation is going to be better.
Professor Elizabeth Elliott:
Great, thank you. Sophie, perhaps I could ask you, what are some simple supports that work for your son in the early years? and you might like to talk about sort of his entry from kindy and into school and and beyond.
How did the teachers help your son transition well?
Sophie Harrington:
I guess for us Elizabeth we didn't um know that our son had FASD at that time. I hadn't even heard about FASD then other than I knew it could be caused by alcohol exposure in pregnancy. I didn't realize that it could be in the early weeks or at lower levels. So we were very lucky that a lot of the things that happened for us were purely by chance. You know we lived in a country town, so the approaches and the move in between pre-primary and kindy into mainstream School were actually really well supported. The local Child Care Center, they used to frequently go in in between the schools. And I would say building that rapport to support that transition and enabling the child and the family to be able to have multiple opportunities to see the new environment they'll be going to, meeting with the teacher that will be their main caregiver, their main educator in that environment, is really important ensuring that you know it's understood around dismaturity. So that's something that I didn't raise that I planned to whilst I was talking but some of these individuals. And if I think about my 17 and a half year old son, he could convince many people at the age of three that he was incredibly intellectual and had had some amazing life experiences of somebody who would be 6, 7, or 8 years old. And yet if you were to just ask a couple of questions, you could see that he really didn't understand much of what he was saying. So really understanding that a child may have complexities across different areas of their development, and may seem really very switched on in one area, but it may be that they're actually really lagging behind in others. if I give an example of now I noticed the other day at his age that whilst he can actually rebuild a motorbike, he actually still hasn't learned or he's forgotten how he learned to tie his shoelaces. So there's things that people - that children will forget, and that repetition and the visuals, and being able to see things repeatedly is really incredibly helpful.
Professor Elizabeth Elliott:
Thanks, Sophie. Now we've had a couple of comments in the text. "Wonderful resources that you've presented". And as Sophie said, they're freely available. "We need to get more education in our schools". I think we'd all agree with that. "Can you recommend a simple article about executive functioning, and what we can do as teachers and caseworkers?" So, Sharon, I will pass that over to you, and we'll circulate um that article afterwards. Then there's a question about comorbidities, and I think that leads to a question um that I had for you, Sharon. What's your advice when there's opposition to a suspected diagnosis of FASD. For example when a health worker says oh no the diagnosis is ADHD, or a family member says, oh no, he's just a defiant child. How would you approach that scenario?
Professor Sharon Dawe:
I think the health worker scenario in a way is is simpler because it's a case of educating and pointing to the Australian Guide on the Diagnosis of FASD for example. I'm talking about the importance of knowing about prenatal alcohol exposure, so I think that can be quite a kind of rational, and clinician-in informed professional conversation. The family situation is really tough, and you know, sometimes it's best not to do the battle but rather just put the supports in place. If there really is a lot of opposition, reluctance to discuss potential FASD, refusal to accept a particular diagnosis or diagnostic place, then maybe it's really, you know, the best thing to do is say what can we do to support this child? Misdiagnosed as ADHD can have some repercussions.
There may be an appropriate use of medication or it may be comorbid ADHD. Again I think that's a complex pediatric question for you that is that, it's you know, teasing apart those things. But sometimes really one just has to go with the flow and assume that over time there'll be a kind of reconciliation and acceptance.
Professor Elizabeth Elliott:
And of course many diagnoses can coexist, originating from from the brain injury. We have one question from the audience about a three-year-old daughter who gets angry when she feels she can't express herself, get her words out. I'm not sure whether that's a child with Fetal Alcohol Spectrum Disorder, but Sharon, your advice?
Professor Sharon Dawe:
Slow, deep breaths and containment in the - in the height of the temper tantrum, which is just general advice for all little three-year-olds. But along the way it starts, doing some of the um games and attention or training and breathing recommendations, teaching children about breath. So in a sense what you need to do is equip the child so that rather than try to manage the child at the height of arousal and temper tantrum, you've done some work that's done to help the child perhaps de-escalate when she gets there or not arrive there quite as quickly.
And keeping your own cool as well.
Professor Elizabeth Elliott:
Indeed. Great, okay, well look, I think we've probably covered most of the question. Oh there was one question, Sharon, again for you, it can take some years now we know particularly in Regional areas to see a pediatrician or a child psychologist, not all of them are informed about Fetal Alcohol Spectrum Disorder. How can we improve access to informed Health Services for Families?
Professor Sharon Dawe:
I think by doing exactly what we're doing today. I think um Sophie's work in NOFASD, I think the work of the Hub is really critical and I think just keeping the issue on the agenda, Sothat more and more parents will be able to go to their GP and say I need to have a discussion about my drinking during pregnancy. And along the way we need to get more GPs saying tell me about your drinking during pregnancy.
Professor Elizabeth Elliott:
Great and look there's this one quick question from the chat. Many kids with FASD need melatonin to help them with sleep and and I'd agree that it can be very useful, but the question for you is does lack of sleep impact executive function? and can melatonin in assisting sleep improve executive function? I think you're all nodding.
Professor Sharon Dawe:
Well we're saying watch this space because we're doing exactly that study.
Right, that's all of the converging evidence would suggest that improving your sleep is going to improve executive function. So, yes.
Professor Elizabeth Elliott:
Great. Well look we're going to wrap up now, but I think there've been a number of key messages that have come out today. Firstly Early Childhood is an important window for assessment and for intervention. Diagnosing a child with FASD at this early age can be challenging but early assessment provides an understanding of the child's unique strengths and needs. Although we don't have specific FASD-specific evidence for some interventions, we know that we can apply the evidence from other child development disorders. And finally there are lots of resources available.
So I think all that remains now is for me to wrap up and again thank our speakers: Sharon, Denise, Sophie, and Lyndall, and of course Tina and Kate who've really helped put this webinar together.
And to the audience, thank you very much for your participation and all those interesting questions. I'd invite you to have a look at the Hub. Please provide us with any feedback. Join our monthly mailing list. We'll provide you information about new publications, new resources, and upcoming conferences. And we hope that we will see you at our upcoming webinars.
Thank you again everyone.