Text on screen reads:
This webinar is part of a series that brings experts with lived experience together in dialogue with those from research, healthcare and other professional backgrounds.
By sharing stories and insights, we aim to increase awareness and understanding of FASD and improve outcome for people living with FASD and their families.
To find out more, visit: www.FASDhub.org.au
Professor Elizabeth Elliot:
Good morning everyone and welcome to the FASD Hub Australia's webinar on the very important topic of the role of men in Fetal Alcohol Spectrum Disorder. Before we start, I acknowledge that we joined from many traditional lands of Aboriginal Torres Strait Islander people from around Australia and I pay my respects to their Elders past present and future.
My name is Elizabeth Elliott and I chair the FASD Hub Australia's Advisory Group. I'm a professor of Pediatrics and child health at the University of Sydney and a clinician at the Children's Hospital at Westmead in Sydney where I lead the New South Wales FASD assessment service.
The first day Hub Australia has been funded by the Australian government since 2016, and its aim is to raise awareness about FASD and alcohol use in pregnancy and in breastfeeding, and to be a one-Stop shop for evidence-based resource resources. The Hub connects clinicians with researchers and policy makers and with individuals and families living with FASD. We run educational webinars such as this one and provide a repository for Australian research and policy. Our most popular pages are the guide to the diagnosis of FASD the service directory and our fast day fact sheets. So please visit us at fasdhub.org.au, and we would welcome your feedback.
Now the purpose of this event is to highlight the important role that men have in all aspects of Fetal alcohol Spectrum Disorder: support of Children and Families living with FASD, prevention of FASD, awareness raising, research and clinical care, and I look forward to hearing some first-hand accounts of the challenges and the joys of raising children and adolescents with FASD.
So now I just want to welcome our panellists.
Welcome to Mr Neil Reynolds and Mr Geoff Davis who are both fathers of children with FASD. To associate professor Nyanda McBride, Dr Michael Doyle, and Dr Vincent Mancini.
Now the webinar format will be as follows: I'll facilitate a discussion with each of our panellists in turn, then we'll address questions from the audience so if you have any questions, please type these into the Q and A box during the webinar and we'll collate those. Now, just to let you know this webinar will be recorded so you will be able to watch it again later.
So, the first person that I'm going to talk to today is Mr Neil Reynolds. Neil is the biological father of five children and a long-term foster carer to Michael and Lina who are siblings who've been diagnosed with Fetal alcohol Spectrum Disorder. He's a community representative on the FASD Hub Advisory Group amongst – I think, Neil – many, many other groups, and makes a major contribution as a consumer to all aspects of Fetal alcohol Spectrum Disorder in Australia.
Now just to introduce Neil and his family, we have a short video that we made at the Hub a few years ago and I'll just ask Tina to play that now.
Video Plays on Screen
Neil Reynolds (Voiceover)
I'm Neil my wife Beth and I look after two siblings with FASD, Lina and Michael, and they are great children, and been a real pleasure to have around, and it's a great privilege to have been able to do so. Well the good thing about these two is that they are just so bright and happy and they just they just want to be part of the family they just want to be part like everybody else.
When she first started at school four years ago they took the school a good two years one to understand her and to realize that the supports we'd put in place also needed to be put in place at school. And so she started at the school, her schooling as one of the worst children they'd ever seen, and now four years later sits in class and it's just a very, very normal child sitting there doing the best she can. I think there needs to be more work done within Education Services to understand that some of the behaviours that manifest in children in their classrooms are actually behaviours arising from them struggling to learn and remember, not being wilfully naughty and that important change in perspective is not yet I think easily understood.
Neil Reynolds (speaking to Lina)
So what day is it today, do you know?
Neil Reynolds (speaking to camera)
Visual cues are an amazing aid for these children, because it helps them understand without being under pressure. These kids have trouble with instructions but a picture is plain and basic and it gives them the opportunity then to be able to do it.
Neil Reynolds (speaking to Lina)
Today is Thursday and it's rainy so what will tomorrow be?
Lina
Friday
Dr Raewyn Mutch
Those children are successful because of Neil and because of the nurture and the love and the healing that he's enabled and the advocacy that he's undertaken. So, they're very blessed to have someone of his capacity and fire to walk beside them.
Neil Reynolds (speaking to camera)
The more support you get the more likely you are to be successful, and we have a fantastic round of social workers and psyches and speech therapists and OTS, and they have all made amazing difference. The thing about those kids is they just want to be like everybody else, and if we could get more people to understand that all these children and their parents would be better off.
Video ends\
Professor Elizabeth Elliott
Can you tell us a little bit more about how Michael and Lina came into the care of you and Beth?
Neil Reynolds
Well, Michael first came to us he was born at 33 weeks. So, he was prem with a serious hole in the heart, and we were contacted, said if he survived the operation would we look after him for six weeks because we had a medical background. And so the history is that he survived and he came into our care at four and a half months straight out of Hospital. six weeks turned into 12 because obviously there was no way he was going to recovering six weeks from such a serious operation. And 12 weeks has turned into ten and a half years. So once we realized that he had lots of other issues apart from his FASD, um the hospital realized that he had to stay in the medical Department area, and so therefore he came to be a long-term placement for us. And out of that, his sister's placement collapsed not long after Michael came to us, and we felt that it was important that the siblings be together. We also realized at that stage, would work out by then that Michael more than likely, even though they hadn't been diagnosed, had FASD. So we sort of put two together, and Lina would be the same, so we thought it was important. But, yeah, that's… and after a bit of to-ing and fro-ing, and a bit of negotiation between our agency and the department, she came to live with us 12 months after Michael when she was four and a half at the time
Professor Elizabeth Elliott
Yeah, well, there's no doubt that you're doing a great job with and for those children. You mentioned in the video some of the challenges you've had and some of the supports you've put in place. What would you say has really worked best over the years for Lina and Michael?
Neil Reynolds
The critical thing is we live our life in a very different situation. And you know I wouldn't necessarily wish it upon anybody else, but it works for our kids we have a very structured environment. All those shots you saw, we had boards up so that remind them we had things in the toilet, to remind them of the process because they have issues with processing it, so they need lots of basic support. And as time's gone on, we've been able to reduce those. But the thing we keep in mind always is we keep the same structure. They sit in the same place for breakfast, they have the same plate, and everything's done in the same order, so that it becomes habitual for them and helps them take pressure away, because having to make decisions and make decisions or decide things for themselves puts them under pressure so much when they're likely to fly over and run into difficulties with their regulation. So, if you can make things consistent and supported, and that's where therapists in the school have been able to be successful as they've done those things as well, making sure that everything is done in a set process the same as was before. And they understand that certain things they do need to take a little bit more time, so when you're giving them instructions you can't expect them to answer you immediately. so you've got to give them 15 20 seconds to process the instruction you're given them
And also you got – we - we’re very big on one instruction at a time, very simple, very straightforward, something that I can understand, you know. We understand that if I say to one of my kids go into the bedroom, get dressed, put your jeans and shirt on, your shoes on, I'll see you in the car. She's likely to be in the car or he's likely there with their pyjamas on because that's the only instruction that registered was the last one. So you've just got to go through the process of making sure everything is strapped in and every instruction given was basic.
And ensuring at all times - we're very big on do they understand? Yeah, because often they'll say ‘yes’ but don't necessarily understand. So, you've got to keep reinforcing that side of it. And what that creates things success for them, so they want to they want to do the things for you right. So routine, structure, repetition, and clear instructions both at home and at school. That's a really important message
Professor Elizabeth Elliott
Neil how do you see your - specifically your role as a father for Lina and Michael?
Neil Reynolds
For me it's been it’s been a very enlightening journey. One of the negotiations to have Lina come and live with us was that I had to effectively retire or give up my work to become her full-time carer. At the time, I didn't think that was a fair thing for me, but we were so desperate to keep the siblings together we agreed to go through it. And now in hindsight, it was the greatest thing that possibly could have happened for her, and I and then of course for Michael coming along behind her because it just meant that we had that opportunity to bond. It meant I had time to spend with her, to understand what parts of her behaviour were due to the trauma that she'd brought with her, and what parts were due to FASD. And you know I don't say that happened in six weeks or eight weeks, it took I'd say it probably took two years before we saw the changes in her behaviour at home, and another two years beyond that before those changes evolved in the school. But I think the good thing for me was that that gave me a fantastic understanding and allowed me to be an advocate for her, and I think for FASD kids it's very important to have a leader in life, someone that could help direct them, someone that can advocate and direct other people around. Because the sad thing about these kids is not many people know enough about FASD and so you know they need they need a role model I think if they've got - in our case you're very lucky, they've got both, because mums a very strong advocate as well, and she's now -- I'm in the background perhaps because I'm the one that's out at the at the Forefront, but that consistency that strong direction that strong support. And the other thing we'd say, you know for men the important thing is that you've got to be on the same team, you've got to be working together. It's very important as the male that you are the positive role model that backs up everybody at home so that everybody's doing the same thing. You've got to be consistent and that includes about the parenting, even then it probably doesn't matter whether it's one or two.
Professor Elizabeth Elliott
Well, you've certainly been a great advocate not only for them, but for children throughout Australia, and a great model role model for fathers. So Neil, what are your hopes for the future for your family and your two children?
Neil Reynolds
I often say when I first started out on this journey, you know basically the first thing I read was there was no hope for these kids. Ten and a half years we've been traveling down this track, and I know that, I understand fully that it's a huge mountain we're climbing. But I also know if we climb it together, hand-in-hand, step-by-step, you can be successful, and I have great hopes for my children. They're integrated, as that video said, you know started out very formally at school but now my daughter is now integrated into the school, and she graduated out of primary school winning the Endeavor award. And then it’s onto high school. And sure, she's not going to be a great student, it's never going to be her strength, but she sits in class, she's engaged, she’s socially accepted, she's a very - you know - she's a happy go lucky - she's a nice person to have in your classroom with. All the teachers will say that that she is organized, she's well behaved and, you know, she contributes strongly to the class. So, there is every reason to think that that can go on into a workplace, into the community in the future. And I would hope for my children that they will lead the charge.
Professor Elizabeth Elliott
Well, I think they're doing extremely well, and I think it's wonderful to end on such a positive note. You've certainly given us as health professionals a lot of very good advice over the years so thank you for your contribution
I might now move on to Geoff Davis who lives in Fitzroy crossing, a very remote community of Western Australia, and with his wife Marmingee Hand who's an Aboriginal leader. He's fostered several children with Fetal alcohol spectral Disorder, including Tristan who I've known for now over 12 years. Tristan's now 24 and he runs his own garden maintenance business with Geoff's help in Fitzroy Crossing. So, I'd like to now share a little video of Tristan and acknowledge the producers of the Lives We Lead Series for this video.
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Tristan’s Story is part of the Lives We Lead Project, produced by the Western Australia’s Individualised Services (WAIS). You can watch Tristan’s Story at: www.theliveswelead.com.au
Professor Elizabeth Elliott
Well Geoff, it's fabulous to see that film, and I think I feel very proud to see how much Tristan's achieved, and I know that you and Marmingee must be as well. Can you tell us a little bit about how Tristan first came into your care?
Geoff Davies
I'm married into an indigenous family, and Marmingee is the sort of the patriarch of – uh, sorry - matriarch of that family. She's the oldest of five siblings, so basically all the sisters and brother, fathers and mothers to all the kids that come from the family. Now Susan, who is two years younger than Marmingee, has had sort of alcohol abuse issues for most of her life, and she didn't have her first baby until fairly late in life. Tristan was the first, was her first baby, and he was very premature and ended up in hospital for three or four months um at the beginning of his life. And then he came home to Fitzroy, and within a month or so he developed hydrocephalus, and it became quite evident that Susan wasn't able to look after him. So, she gave him to Marmingee, and Marmingee sort of had the cultural imperative that she had to do it and being the older sister took it on. And so, Tristan has lived with us ever since.
Professor Elizabeth Elliott
Can you tell us what was the immediate impact on you as a as a fathe,r as the male in the family?
Geoff Davies
Um…surprise was mostly the first thing, because I wasn't expecting that with both Marmingee and I were in our mid-40s and had grown children and whatever. And having a kid who had specific needs particularly around the health issues in his in his early stages was something that we weren't expecting. We had to basically restructure our Lives the to fit a baby in, because we'd sort of graduated from that before. So like having enough space to in the house that we had to be able to and have him in there, and having a kid in the middle in your bed, you know that happened a long time ago, but didn't happen. Um, worry and anxiety also was a part of the of taking the kid on because obviously we weren't prepared. We weren't really, we didn't really know at that stage about FASD and the things of it. But we knew the problems that Tristan was having, and then as time grew on, as he stayed with us, it became more and more evident that he had other issues that we needed to be able to grapple with. And they reflected on us, and myself particularly as a male, that we had to let go a lot of the things that possibly we thought were key to bringing up kids because it just wasn't the same.
Professor Elizabeth Elliott
Did these problems become more evident when he went to school? Geoff, I think you and both you and Marmingee are both School teachers, aren't you?
Geoff Davies
I was a failed school teacher, and Marmingee’s a very successful one. Um, the answer is yes. Through his 24 years, it's the stages in his development where his disability or the things that have that challenge him have become more and more evident. So, the hydrocephaly that he had damaged his speech, and so that impacted on his sort of FASD-ness as well. When he went to school, when he went to daycare, there was challenges in in his behaviour, and he was biting kids
because he couldn't speak. He was, you know, he was frustrated. That then led to other kids in the community having a different attitude to him, and parents having different attitude. So we had to deal with all of those, so as a family unit it threw up a lot of challenges to us. I mean, we were lucky in that we had good networks, and particularly at, say, daycare, they recognized the problem, and they went and sought professional assistance to for him at daycare, which began a new journey for him. I think that's when we realized that we couldn't just do it ourselves, that we needed a lot of help in this.
Professor Elizabeth Elliott
So can you tell us a bit about the- you know - as you've gained greater awareness of Fetal Alcohol Spectrum Disorder, and understanding of the issues, particularly when he went to school, what additional help were you able to get at school?
Geoff Davies
We had to go through a horrendous process with the daycare to get him an extra EA, or education assistant as they call it. Basically, they had to classify him as a monster so that he would get the allocation of money to assist. And that went on into high, into the primary school as well, which was really quite daunting and threatening to us as because it wasn't true. It was, you know what I mean, it was we could see the really good side and the wonderful side of him, but the system and the other kids and people couldn't see that. So that was that was really challenging. And the need for him to have appropriate care at school really became evident, so we found we were very, very lucky over years to find two people who were really had a relation - built a relationship with Tristan before he'd actually been at school. So, James Chang was a friend of ours who gave up doing work to go and work with Tristan as an EA. And later on, Thomas Luskin who- when he was in high school - who became his EA and helped guide him through stuff. We did have a couple of EAs that weren't suitable, that really threw him and made school extremely difficult for him. But he ended up completing year12 with lots of support, so it was it was a wonderful experience, really.
Professor Elizabeth Elliott
Well, I think that's right, that consistency at home and at school and particularly for Tristan to be able to get to know those key workers. Can you tell me - I mean, you've had another couple of children subsequently family members who who've had FASD - can you tell us a bit about the role that you've played in your family as a father and a partner? and particularly I think people be interested in, as Tristan got a bit older, a whole lot of new challenges come when you've got a teenage boy, don't they?
Geoff Davies
Absolutely. We look after two of our grandchildren who are also on the Spectrum, and Ronnie, Tristan's older sister, lived with us for nine years as well, but she was a much more high functioning FASD person. Neil summed it up beautifully - I mean he basically stole the thunder in lots of ways because everything he said I could recognize. We're a bit further down the scale, you know, we've been a longer time frame with Tristan.
But I what I would say is that you need – as a carer - is you need to celebrate the good things that these kids bring into your life. I can honestly say for me, learning how to deal with Tristan's anxieties and issues that the FASD cause, actually helped me greatly, because I had my own anxiety issues, and me working out and with other people's help how we help Tristan certainly helped me and has made my life a lot better as well. So, I think you have to celebrate all the good things that happen. You know, you have a look at that video of Tristan, and go ‘where did he come from to now?’ It’s really good and it's built up I think on love. It's built on all those things
Neil said, you know, the understanding, being the external brain, recognizing that every day is a new day for the kid, that you have to let go your own sort of precious certainties about being a father or being a disciplinarian or any of those things they just got to go out the window, because they don't gel in in the situation. Remember the mirror effect when you're talking to a kid. You know that the FASD kids respond, so if you yell at them, they yell back, that whole, you know, anxiety thing. Always forewarn them where possible, where things happen. Show love and assurance. And I think that was best highlighted by Tristan’s Story that was done when he was 12 where he just said, ‘I want to be normal’, and it was interesting Neil was saying exactly the same thing, they do just want to be normal.
As a grandparent, a as a male, I think we've got a bit - I've got to be supportive of my kids who have generated the kids that we look after and have got the FASD issue. So, you've got to be supportive and guide them and help them become better parents, because the grandparents can't always do it for them, they've got to be able to handle that themselves. And there is such a unknown Spectrum of issues that these people don't know, so you have to help guide them through that. And I guess the other thing - and Neil touched on it as well - you have as a partner, you've got to soothe the troubled waters because there's lots of troubled waters that come up anytime. You have to give your partner a break, you’ve got to let them have time to themselves. So, like with Marmingee, she gave up work for a year to help with Tristan, but then it was my turn to take on and basically give up work to support Tristan. You've got to avoid conflict between each other on how you deal with the kids, and that's quite difficult because I know, like in the two different cultural backgrounds, that we've got there's a bit of a different expectation about how you deal with things. So yeah, you've got to build your own capacity to change and be, you know, just to see things in a different light.
Professor Elizabeth Elliott
Yeah, well look, I think both you and Neil, Marmingee and Beth, you've done a fantastic job. And again, it's fabulous to end on such a positive note and see how much Tristan's achieved with your support. So, thank you both Neil and Geoff for sharing your stories, and I'm sure the audience will have some questions for you.
Now we're going to hear from three researchers about the broader roles of men in their families and in communities as well as how we as health professionals and other members of the community can help men thrive in these roles.
So first we're going to hear a bit about is men as fathers. Sounds obvious, Vincent, but I'd like to introduce Vincent Mancini who's a senior research fellow at the Telethon Kids Institute in Perth. Vincent's focus is on empowering fathers and father figures to improve the health and well-being of their children. So welcome Vincent. Now continuing on the theme of men and fatherhood you work in The Fathering Project which is to upskill and Empower fathers and father figures. Can you tell me a bit a bit more about The Fathering Project, and perhaps how it would translate into Fetal Alcohol Spectrum Disorder?
Dr Vincent Mancini
Thank you, Elizabeth. So just a brief background for people that aren't familiar with The Fathering Project, The Fathering Project is a national non-for-profit and as its name suggests is all about fathering. The Fathering Project was started coming up 10 years ago now by Professor Bruce Robinson, who is a thoracic surgeon here in Western Australia. Bruce’s backstory and motivation for starting The Fathering Project was actually working at the other end of life with a lot of men who are really terminally ill, sort of facing the prospect of death and dying. And the recurring story that he would hear from many of these men is that none of these men said ‘I wish I spent more time in the office’, it was always ‘I wish I spent more time with my family, I wish I spent more time with my kids’. That really sort of I guess lit a bit of a spark within Bruce to do some more work with fathers, and also working with fathers as early as possible. So, The Fathering Project ended up becoming a really brilliant idea which we gained a lot of traction and support for.
So Fast forward, you know, 10 years, we're now national and the flagship thing that The Fathering Project probably do and are best known for is the dads groups that they run in the schools. So effectively are looking to build capacity within the community by getting fathers together. It just so happens that schools are sort of what you might consider a bit of a meeting place for members of the community. Or the other place as well where it really works are sporting clubs, you've got lots of members from the community coming together and there's really good opportunities for fathers to talk with each other, talk about their kids, and talk about fathering.
So, The Fathering Project, for those that are interested, they've got their website fatheringproject.org but also in addition to the dad's groups and the stuff that we're doing with the sporting clubs, there are a lot of these I suppose what you would consider little satellite projects. I talked to someone yesterday in the autism space about fathering, and he was saying that you know there's kind of this, there's this core of what it means to be a good father that many of us can sort of agree upon, and different populations have different barriers to get there. So for some groups some of the barriers might be to do with employment, or other groups it might be to do with children's special needs, other groups might be barriers to do with parents needs. So, there are these little projects that are happening alongside the bigger commitment that The Fathering Project have, and part of that includes supporting fathers of children who have additional needs be it FASD or they might be on the autism Spectrum or have other physical or mental health conditions.
Professor Elizabeth Elliott
Can you tell us what are some of the most common challenges that you find fathers tell you about fathering and particularly fathering a child with special needs such as FASD?
Dr Vincent Mancini
Yeah, I mean it's another really great question. I think the thing that when you get it when you are fortunate enough to get a group of men into a room together, which can sometimes be hard as it is, to talk about the challenges of fathering which is also difficult. I think what people quickly realize is that there isn't a one-size-fits-all approach to being a dad, and that could be dads of any children you know, and two dads of children who might have FASD may have very different experiences as well.
I think part of the challenges that men commonly face when it comes to fathering is um fatherhood for many men becomes a big part of a person's identity, so when you ask a man who is a father who are you, oftentimes it's ‘I'm a father, I'm a school teacher I'm an engineer, I'm a coach at a sporting club’, but father is usually high up on the list if not number one. One of the challenges that I'll hear from men that I work with is a lot of the time that part of their identity, for whatever reason, isn't really supported as well as the other areas of their identity. So, some men feel like no one really ask them about how they're going as a dad. You know, it’s how is footy going, how's work going, how's the missus, but not how are you going as a dad. You know, are you going through any challenges as a dad, and so that's been a quite a recurring theme for me when I work with men, it's one of the things that they're quite often identifying as a challenge.
One of the other challenges that I'm seeing at the men are reporting - and this is more men of younger kids - is that when they have kids that are young, kids that are born, what they tend to feel or perceive is that their social network sort of shrinks a little bit. Whereas for their partner, if mum is around, their social network seems to expand a little bit more. So, there's more mums groups, you know, that type of thing, where mums are able to connect with other mums, but there's less of that formalized or readily available or accessible. Those sorts of services for dads, so that's that shrinking of social support is a real challenge for dads as well.
Professor Elizabeth Elliott
So as health professional and other Professionals for that matter, what do you think that we can best do to empower and support dads like Geoff and Neil?
Dr Vincent Mancini
Yeah another great question and I think really this my sentiment now in in this really privileged position I find myself in being able to work with dads and work with the community, is that I always think about doing research ‘with’ fathers not ‘on’ fathers. So, I always think about from the start that I have a research question, and often those are questions that are posed to me from dads, partnering with dads and with their families, to think about, you know, that they're involved in this because the research and my work is designed to serve these people and to serve these families and these kids. Working ‘with’ dads rather than working ‘on’ dads is an important sort of mindset for myself but in terms of empowering and supporting men like Geoff and Neil.
One of the things that The Fathering Project they're working on is this concept of ‘community fathering’. So that's that idea - and I think Geoff and Neil, you couldn't ask for better examples of what it means to be a community father - so these are men who are maybe stepping outside of their biological responsibilities as a dad and sort of bringing in children under their wing, under their care, that you know sometimes they might not have had any real obligation to do so. So, trying to be able to empower the community by creating stronger, more responsible, more involved and more supported father figures. Also, from Healthcare professional perspective, thinking about it's important to meet fathers where they're at as well. So, for me, my background was in Psychology. I worked in private practice for a period of time. I didn't see many men coming in, and also just thinking about what types of peer support networks that exist for men, and the last maybe five to ten years we've seen a real proliferation of grassroots dad's groups sort of popping up online - Facebook communities where dads are supporting other dads. I think healthcare professionals need to recognize that they exist, and actually think about partnering with these organizations because there's a real need to be able to meet men where they're at and where they feel comfortable rather than sitting and waiting for them to come to you.
Professor Elizabeth Elliott
Yeah, well, look that's all really good advice and I see Geoff nodding. Geoff you've been involved in the men's shed, so look, hopefully there'll be some questions for you afterwards. Vincent, we can put your website up on the recording of this webinar. So, thank you, Vincent.
So, beyond the role of a father, men have many other important roles when it comes to FASD, and one of those important roles is as a partner - we’ve touched on that a little bit - who can help prevent FASD by supporting their partner not to use alcohol while they're pregnant. So, I now want to introduce Associate Professor Nyanda McBride, who's from the National Drug Research Institute at Curtin University. Welcome. Nyanda, you have nearly 20 years’ experience as an intervention researcher and in educating people about drugs and in health promotion to prevent harms from alcohol and drugs. Can you tell us a little bit about your research into how men can influence their partners’ alcohol consumption during pregnancy?
Associate Professor Nyanda McBride
Thanks, Liz. Yeah, um, look there is a – it’s a developing area of research, this research area, and we are seeing some emerging research that - some of it is common sense, but some of it is new. And another thing about the research is some of it is from single studies, so there's a little bit of evidence, but some of it is from replicated studies so there's stronger evidence. And I'll sort of try and pull that out as we talk.
But from Australian research, we've got some reports that women who do drink during pregnancy usually drink with their partner and that their male partner often initiates up to 40 percent of the drinking occasions. So, you know, we can see that it's much more beyond the decision-making of single women in terms of drinking during pregnancy. We also know that from the research that women who drink during pregnancy are more likely to have a living male partner who consumes, and this is replicated research, and also that women who drink during pregnancy are more likely to have a living male partner who drinks to a high-level risky levels of alcohol consumption, and this is international research as well. So, there's replication on those two aspects about their male partner being a drinker of alcohol.
But interestingly there are some really strong - uh, powerful effects on the relationship., the quality of the relationship, and this is again replicated research in international areas - jurisdictions that identify that the quality of a couple's relationship does have an impact on maternal drinking during pregnancy, so women who report significantly less satisfaction with their relationships and her best ability to discuss relationship problems with their partner are much more likely to continue drinking during pregnancy. The effect size - in research we talk about the effect size, which is the strength of the impact - it’s really quite high in real - in terms of the relationships. So there's relationship aspects that are really key and important in terms of drinking during pregnancy, and we know that drinking during pregnancy is associated with FASD.
So really when we're targeting prevention, it's not just the woman, it's all those people around her particularly the partner in the household.
Professor Elizabeth Elliott
Nyanda, we're starting to understand a bit that men's alcohol consumption plays an important biological role in that period just before conception, just before pregnancy occurs. Can you tell us briefly about that research because it's something we're often asked about.
Associate Professor Nyanda McBride
Yeah, once again this is emerging research in terms of human studies. There's quite a lot of animal studies that report on this, however, the animal studies tend to involve huge amounts of alcohol, and report on certain outcomes related to that. But in human studies, there are replicated findings that consumption of alcohol by the biological father during the preconception phase (and if we think about preconception phase, it’s the three months leading up to conception because it takes about three months for sperm to develop to maturity), and that can lead to spontaneous abortion or miscarriage, and low birth weight with low levels of alcohol. And some of this research is controlling for maternal alcohol consumption, so in some circumstances there is no maternal alcohol consumption occurring, but these associations are being found with a father's - biological fathers alcohol consumption during preconception.
One of the concerning areas I think here is that some of these findings are related to low levels of alcohol consumption during that preconception phase and we know that Australia is one of the highest drinking nations of the world, so something to keep in mind there in terms of perhaps future Australian guidelines to reduce health risk from alcohol. And there are there are also single studies the report that preconception alcohol use by the biological father can impact on failure to achieve live birth low gestational age, which we know is a risk factor for babies born with low gestational age mental retardation. An Australian study looking at single heart ventricles, so the develop- the not full development of the heart, acute lymphoblastic leukemia which is an Australian study, and cliff. So there is some as I say emerging research that is suggesting that we do need to look at how fathers can play a part in reducing some of these outcomes.
Professor Elizabeth Elliott
Thanks, Nyanda. So, the 2020 NHMRC guidelines recommend that women who are planning a pregnancy or who are pregnant avoid drinking alcohol, and perhaps they should also say – uh - clearly state that their partner should too. So many of the audience today are health professionals and other professionals working with children and families with FASD. How should we apply your research to best support men in their role as partners?
Associate Professor Nyanda McBride
Look, I think that it's really important to involve men in making decisions about how to best to inform men. And I think that you know, there is some research - Vincent has been involved in some of that - but also future research in guiding that process. I think we need to engage those people who it means most to as well as setting providers to find out what might be the best way of delivering and providing education and services to men around this. But we do know from research that decisions around alcohol use during preconception of pregnancy assuming not the sole responsibility of women and the sole decision making of women but a care in the context of partnerships in the home and also the broader social environment.
So that needs to be kept in mind. I think is at the forefront we also know that from the above research that farmers contribute to alcohol exposed pregnancies through their social facilitation of alcohol use by the mother in their - within the relationship and on quality of relationship. So men who drink within a relationship when a woman is pregnant, the woman's more likely to drink.
But really exciting research, and this has been replicated, tells us that men, you know, up to 75 to 80 of men who are involved in a pregnancy do want preconception information. They want to know what they can do, what they can actively be part of, to support the preconception and pregnancy phase of their partners, and their child’s, and their own world. And that also women are much more likely, up to 20 more likely, to follow preconception advice from Health Care Providers if the men are actively engaged. So, you know I think this is really telling research that there's a need and that we need to provide something. So, I mean, how we provide that, I think there's still some gaps in the research around that, and certainly having Health Care Providers, their wisdom based on what they've experienced and then engaged in this this aspect would be really important. But probably the aim is to reduce or prevent men's alcohol consumption to support pregnancy preconception and child health is a really important view to have. And as you mentioned, you know, having that as one of the potential guidelines for future guidelines around alcohol to reduce health risk may be something that needs to be considered. But also, those more broader aspects of increasing the quality of partner relationships to support pregnancy and child health is more difficult because often there are social determinants around that. But certainly, engaging men and service providers in that would be helpful.
Professor Elizabeth Elliott
Yeah, and I'm thinking of - sorry – I was thinking about, what do you say… I mean, women when they're planning a pregnancy see their GP and their obstetrician and their Midwife. So I think there's probably a very important role for GPS in that Primary Care space to alert men about the importance of their role.
Associate Professor Nyanda McBride
Yeah, I think that that's certainly one option that needs to be looked at. But, you know, from as an intervention researcher, that formative phase in developing up research interventions that might potentially have some impact, it's really important to talk to men, about what they want and how they want it delivered. And it might be over multi-forums and one of those being the GP, but certainly in other ways as well, I would imagine. And part of that is to provide tailored preconception information to men, but there's a call for it, we need to find out exactly how that might best look. And, you know, not just men but to provide it within couples to ensure the health of the pregnancy.
Professor Elizabeth Elliott
Yeah, great. Well, thank you very much, Nyanda.
So, we've now spoken today about how better to support men as fathers, and men as partners, and our final speaker is going to discuss how we can best support men with disability including Fetal Alcohol Spectrum Disorder in the context of the justice system. So I'd like to welcome Michael. Michael Doyle is an Aboriginal man from the Bardi language group in the Kimberley region of Western Australia, and he's a senior research fellow at the University of Sydney, and his focus is on the treatment of men with alcohol and Other Drug misuse who've become involved in the criminal justice system. So, Michael I wonder if you could tell us a bit about your work with adult men in the prison population why this is such an important population to consider in the context of disabilities including Fetal alcohol Spectrum Disorder.
Dr Michael Doyle
Thanks, Liz. Look it's an honour to be on this uh on this uh teleconference today or um event today. So when I was undertaking sort of work in the prisons and interviewing people about drug and alcohol use and that kind of thing, it started become pretty obvious to me that there was something a bit more um than just, sort of drug use, or other things that were happening. And I started to get more and more curious about what other factors they could be. And uh I had a young colleague of mine, Dr Robyn Williams who had done her PhD in FASD, and as soon as she started speaking about FASD, I just kind of realised. hang on, there's probably a lot of fellas in adult prison who have FASD. With what I thought and some of the things that both Neil and Geoff spoke about are factors that happened within the prison systems. So it could be, you have high sort of regularity and routine and all those things, that could end up making prison a fairly manageable space for somebody who has FASD. And once I moved from that sort of thinking a bit further along the line I started doing a bit of reading and then I got uh involved with uh FASD Review with Carol Bower and Sharynne Hamilton, and it's been a sort of an amazing journey for me over the last 12 to 24 months.
What we see from international research is if we look at Canada within the adult prison system, there's been two bits of work done over there that would seem to indicate that there's prevalence within the adult prison population is somewhere between 10 to perhaps fifteen twenty percent. And when we look at the work that was led by Carol at Banksia Hill, we see a really high prevalence of FASD within the juvenile Detention Centre over there, and it was getting close towards 50 of Aboriginal kids who were screened uh had FASD. And so, I think really, there's a lot more to be learned within that space.
But in terms of the role of what's sort of happening, I think disadvantage can be cumulative. And so if you're not, sort of, put in with supports around that at an early age as what people have been taught, all of the panellists have been talking about today, and then you can accumulate certain disadvantage along the way. And once you become known to the police you get better known to the police, and once you're not doing well at school, you're really not doing well at school, and things get worse until eventually you may end up involved in the criminal justice system and be inside, you know, both Juvenile and adult prisons. So the work I think you're doing as well Liz is around detection. Screening in in the juveniles and in juvenile setting is really important so that we can try and stop people going on to the adult system.
But I think we need to also have a think about, well, how do we when people do go into uh the adult system, what can happen for those men so that they're better supported to perhaps be in the community rather than within a prison setting? And that's a bit of work I think we still need to get done in Australia. There's a bit of work in that space in Canada but it's an area that we really do need to do a bit more on, yeah.
Professor Elizabeth Elliott
So, one of the problems we have we know that kids who end up staying Juvenile Justice, many of them have never been adequately assessed. Can you tell us why specifically kids with FASD might have a higher risk of becoming involved in the justice system?
Dr Michael Doyle
Yeah, I mean there's a whole number of factors, but learning difficulties, so you get tagged as being a problem child and once you start treating a child - and Sharynne wrote a really good paper from this - this is a child with a problem, rather than the child being the problem. I can't remember the exact title. And so, the child then is perceived as being the problem rather than thinking, right this kid's got something wrong in the background, we need to work out what that is and provide that child with that support. So, kids can be fairly easily led, and young people with FASD as they grow up don't necessarily develop that maturity to be able to distinguish in the way other people can about right or wrong and those types of things. And I'm trying not to be judgmental and saying that, but they often don't have quite the understanding of the consequences of a particular act, and that that might then lead to criminal charges and the impact of that what they've done on perhaps other people. So, there's a number of factors that that would mean that they're more likely to become involved in this criminal justice system.
Professor Elizabeth Elliott
And that's why understanding their capacity and their cognitive ability particularly is so important. So how do you think Michael we can better support boys and men to prevent them becoming involved in the justice system? or once they're involved in the justice system to stop them reoffending and getting into that cycle of coming back into to custody?
Dr Michael Doyle
I think as a broad statement, scalability is some of what's happening. When sort of as a newbie looking at some of the great work that's been done uh within the first space, the scalability of that would soon be a major issue. So being able to roll out some of the great work that's happening perhaps in Fitzroy and other places so that it's sort of everywhere. And anybody who kind of might need support gets up support, whether it be the parents get support to support their children, or the children more directly. I think that's a critical aspect within what we can do to prevent this happening, and kids becoming involved in that.
Professor Elizabeth Elliott
Just on the point - I mean, in in Australia as you know we can incarcerate children as young as 10, and many of those children have limited capacity because they've had a brain injury, or you know they've got some impairment. Can you talk a bit about alternatives to imprisonment.
Dr Michael Doyle
Yeah, I'm not so much in the juvenile space, so I think alternatives to imprisonment is really supporting families and the young people themselves, and doing the sorts of things that both Geoff and Neil have spoken about that parents do and supporting parents to be able to have regularity - parents and carers, I should say - to have regularity to be able to do those kinds of things that create a really stable environment for the young person, so that they can then go on and indeed in a lot of cases thrive, not just stay out of jail. They’ll go down a journey that takes them to be the best ‘them’ they possibly can.
I would say, though, that one of the difficulties for Aboriginal parents and Aboriginal kids within that is there's real issues around the criminal justice system, and the ability to be able to advocate and argue a case. And so just being fluent in English doesn't mean you have good command of the language, and a lot of parents may not, English may be a second or third language as we know in some of the original remote areas. And so being able to make the case, or perhaps my young fella should be getting more support in the community, and we can do these other things and working out what those other things can be as an alternative to them actually going into the Juvenile Justice System. I think there's there is a lot more work to be done within that space so we can kind of hopefully prevent some of this horrible over-incarceration that we're seeing, which is a national crisis in its own right.
Professor Elizabeth Elliott
And we've heard from Vincent and others today about the importance of men's relationships with men. Can you tell us a bit about your interest in promoting community supports for men including men who have been involved in the justice system?
Dr Michael Doyle
Yeah, look, I think there's on a personal level I do go to men's groups and those kinds of things, and I think there are things that you kind of get from being at an Aboriginal men's group of other fellows and a different kind of conversation that happens within that kind of environment. And so men supporting men is incredibly important, and having spent time with elders and people who have good leadership and can kind of steer you in the right direction, which it's not just coming from a health professional saying to do this or do that or that. And I think there's a different way of influencing that Aboriginal men can have with other Aboriginal men in that in that way.
Professor Elizabeth Elliott
Yeah, and we've certainly found, with youth in Fitzroy Crossing for example, getting them involved in traditional activities and sporting activities is also really important.
Dr Michael Doyle
Yeah, for sure, and it does a whole bunch of things, doesn't it, if you get them out in the footy field and they're learning to work together, to listen to each other, and do all this other stuff. But
you don't necessarily see straight away when you get the boys out on a footy field together and get them doing that stuff, and they learn to follow instructions from a coach, the person in charge, like those sorts of things. And so sometimes young men will pick up that from sport, where other men would pick that up from going to school, perhaps, and sitting in a classroom and being able to do those things with other people in that setting. So sports are incredibly important way.
And culture is really import. It's our strength as Aboriginal people, Aboriginal and Torres Strait Islander people, and it's a really good way to involve men in in something that's really useful, something meaningful to themselves, and something they enjoy that doesn't necessarily require a high level of negotiation, a high level of complexity around it, if you get what I mean. Like, you can enjoy being part of the group and doing what the group is doing without having to be the expert in that area. You can just be one of the members of the group.
Professor Elizabeth Elliott
Yeah, well, that's very important advice.
Now, to wrap up this session I'd just like to go around the panellists and ask each of you if you could give one bit of advice to our audience about how to better support men who are living and working with people with FASD, what would that be?
And perhaps I'll just go around my screen left to right, and start with you, Vincent.
Dr Vincent Mancini
I think it's a challenge to try and think of one piece of advice that might be able to solve everything, so I'll give a just a little piece which I sort of mentioned before, as well, which is: I think that for healthcare professionals, sometimes part of our role might be thinking about how can we reach these men that may be notoriously reluctant to be coming to us. So thinking about how is it that we might be able to do partnerships with be it men's shed or other types of dads groups that are already existing, to say: ‘ hey, look, we exist, we're here if you need anything’. Rather than, just, you know, waiting for people to come to us and when they're in need. So that's maybe my little message there.
Professor Elizabeth Elliott
Thank you, good advice. Nyanda?
Well, my orientation is more towards prevention. So, I mean, when it comes down to it, I think giving men the opportunity, that there is lots of evidence that they do want the opportunity but giving them the opportunity and moulding their opportunity to so that it resonates best with men in in their lives and how they want to operate it.
Professor Elizabeth Elliott
Great, thanks Nyanda. Neil?
Neil Reynolds
Oh, mine to be the opposite to Nyanda’s. Because mine would be about once you've been the parenting role, clearly, I think this is an incredibly daunting Journey, but for all men I'd say: ‘embrace the opportunity, because the reward is so, so fantastic.’ And of all the things I've done in my life, seeing my FASD children blossom, and move into the community, and be able to be integrated as just normal people just doing what everybody else does, is such a rewarding thing. And if men can just realize that the contribution, they can make to that is endless, it's incredible what a difference you can make and what to get in return is multiple fold over that.
Professor Elizabeth Elliott
Yeah,well, some someone's on the text just echoed my sentiments, saying what a beautiful statement that is, Neil. So thank you for that. And Geoff? Can you hear me, Geoff?
Geoff Davies
I don't know if you can hear me. I can't – I’ve have lost sound to you guys.
My one piece of - well - there's no one piece. I'm a bit like Neil, and I'll come from the perspective of somebody who has taken on that role. I think acceptance that you have to change, that you’ve got to learn, you've got to let go your precious certainties, and, as Neil said, you've got to be able to look at things from a bit of a different perspective and get back from the kids that you're dealing with what you're wanting to give to them. So, like, for instance, I think the real turning point for me was when I realized how much Tristan was able to contribute to my capacity of being a better father, or a better minder, or a better carer. And the improvement that you see in those kids because you share love, and you share affection, and you care about each other. That relationship stuff then builds the capacity of the whole to deal with this thing as a family, you know as a more than - it's more than just one-on-one, it's particularly in the Indigenous space - it's around building the capacity of the family to accept what it is and then to nurture it.
Professor Elizabeth Elliott
But again, someone said what powerful words Geoff. So, thank you very much. And now Michael, back to you? if you had one bit of advice for health professionals to assist men in dealing with FADS, what would that be?
Dr Michael Doyle
I guess it would be to work out a better way to help support adults. So if adults are, gone if men have gone into prison who have FAS, how can we as a society work out a better way so that people can manage that in the community. Which is a big ask, but I think it's a lot better if we could help people be the best, they can in a community setting rather than, too hard, we're just going to put them in prison, which is kind of how it seems to be going at the moment.
Professor Elizabeth Elliott
Great. Well thanks, Michael.
So now we do have some 15 minutes or so for questions, and we do have a couple of comments and questions that have um come up on the on the Q and A. So if anyone's got questions out there, please put them into the Q and A.
There's a comment here from Associate Professor John Gilroy saying he was glad to see this Symposium is presenting FASD not specifically as an Aboriginal experience but a human experience, and I think that's something that many of us who work in Aboriginal communities are very well aware of, that this is a universal experience, this can affect any aspect any part of society. So thank you, John, for that comment.
Now, there's a question for you, Geoff. It's wonderful to see Tristan at work. How long did it take you to sort of settle or decide on this type of work that it might be suitable for Tristan?
Geoff Davies
It was it was a product to his schooling. One of the things when he got to high school he really struggled with, the school really struggled with him, and until he got the appropriate mentor to work with him, he had to find out ways to self-regulate. And one of the things we encouraged him to do was to actually leave the classroom, and not turn this upside-down or, you know, swear at the teacher, or those sort of things, but go to a space that he felt comfortable in. And he was fortunate enough to bump into a school gardener, and the school gardener was an indigenous bloke. And you'll see the way he was dressed? Well, the school Gardener used to dress like that, so Tristan started to copy him, and he showed him how to ride the ride-on mower and that, and he embraced that just hugely. And so, it was just then working in that space, so we encouraged him to mow his auntie’s lawns and his uncle's lawns and those sort of things. So it started off as just a sort of a meaningful thing for him to do. And then luckily Clontarf, who here got a scholarship, and he got ten thousand bucks, and asked him how he wanted to spend it and he said he wanted to buy himself some equipment. So, he bought himself a trailer and a ride-on mower and that started the journey. And then people started to embrace him because he showed that he was being ‘normal’, if you like. Yeah, so and then my role in that, and I'd given up work because he needed the support. He couldn't read and write, he didn't have a license he couldn't do the sums in, you know, for the getting paid and that sort of stuff. So, it was a matter of just sort of letting it grow and giving him the confidence to - I’ve always sort of made it that it's his business, and he owns it, and he can make the decision. So when we work, and when we don't work, you know how much effort we put in, and we don't. And so, it's a bit hit and miss, but you've seen that video, I mean, that that appears because it's that's the effort.
Professor Elizabeth Elliott
Yeah so having role models is important, having some funding or facility to help you get going, and then, as you said having your support of someone like you to keep it going
Now, there's a question for Neil and Geoff. So I'll start with Neil. You've talked a bit about the the pressures and anxieties that carers can face. For other dads who are facing similar challenges, do you have any tips for looking after your own mental and physical health? We'll start with Neil and then we'll move to Geoff. Neil?
Neil Reynolds
Yeah, I think it's a very important question. I think it's critical, that, you’re, you know, in the right frame of mind with these kids. Because if you're not, then you're not going to be able to be successful with them for a start. So looking after your own personal health is a critical part of the journey. Finding time to get away, you know, to go for a walk in the bush, take your dogs for a walk, you know, read a book. Whatever is the thing that that draws you back. You need to find time somehow, you have to make an hour a day or whatever that amount of time you can steal, because it does become very much all-encompassing journey. This is not a journey that you can turn on and off at will, it takes it takes a huge amount of strength. But make sure that, you know most days - and I'm lucky I've got two reminders to come and drag me out of wherever I am at 4 30. my dogs come and start barking and saying it's time to go for a walk, and that walk, and sometimes it'll be a walk with the kids, but that chance to get out of the Bush and get away from the phone and the computer is what regenerates me. And you just got to find something like that, because if you don't have that, you know, any parenting Journey can wear you down, but this can be extremely stressful. And once you get in that state, then you're not going to do the kids any favour or your young adults any favours. Looking after yourself is as much a priority as it is looking after the kids.
Professor Elizabeth Elliott
Yeah, good advice. And Geoff, we know that particularly in very remote communities like where you live, it can be very overwhelming with so much stuff going on around you, but also that there's very little access to health and mental health services. Have you got any tips for looking after your own mental and physical health?
Geoff Davies
If you'd asked me six years ago, I most probably would have said I don't know, because I wasn't in a very good mental space. The anxiety issues - but as I said before, one of the things that I think acceptance of that things are the way they are, but also an understanding, having an understanding that things are not absolutely bleak, and that you embrace the good things that that happen. You've got to, sort of to a certain extent, except that you've got to be the other person's external brain, and you've got - and it's not necessarily them speaking, but it's their dysfunctional brain that's speaking if they're telling you to get stuffed, or you know turning something upside-down, or throwing rocks through the car windows, or those sorts of things. And that you've got to sort of forewarn yourself and read things before they happen. But so that's in the moment. For my own personal health, I think you need you need to seek assistance, and if you can't, then you've got to share it with someone, so things like men's groups or the men's shed or those things. And the other thing for me it was just keeping moving and keep - you tend to think things, so you're not necessarily your thoughts but you can be your actions. And don't get consumed by your thoughts, just get and do things. And I found that getting out with Tristan and doing stuff with him to divert him from whatever it was that was causing the anxiety was helping my anxiety greatly. So as Neil said, you know., going for a walk or going and doing the mowing, and all going to go and down the river, and just those things. That was really good for my own mental health.
Professor Elizabeth Elliott
Great, thank for that. Now, there's a question here from an anonymous attendee. Just, you know, saying how not one size fits all when you're bringing up a child, let alone a child with a disability and a lot of dads might find this daunting. Does the panel have any advice on where to turn when you're feeling lost and looking for help. Perhaps Vincent you could comment on that?
Dr Vincent Mancini
Yeah, sure. I think this is a tricky one because I suppose it would depend on a person's individual situation, in the sense that if you've got really good social support social networks, you've got a really great relationship with your partner, or father, mother, brother, sister, best friend, these sorts of supports that may already be in your immediate vicinity might be the people you go to. But I think even then, for parents who have kids with FASD, for example, you might be able to get some compassion and empathy from them, but you might really be seeking some more practical skills that you may not be able to get unless they've also had experience caring for kids with a FASD. So I think for people in the community that might be requiring some support, I think places like, you know, the FASD Hub is a great example where there's some information and supports available. But then also for men as well, I would say that like I mentioned earlier, there's a real growth in community-driven support for men and by men. It's like, you know, it's not healthcare professionals setting this stuff up, it's - one example that comes to my mind at present is a group called the Australian dads Network, which is based out of Karratha, and the guy that started that was just a dad who went through his own sort of struggles, and realized that when you live rural and remote it's pretty hard when all of your family are still in Victoria or wherever else they might be. So I think it's a real indication that there's demand from the community for this type of support, and even in the last few years it's grown quite rapidly. So, in addition to your more well-established groups, so your men's sheds and so on, and say that you’d probably be able to find support from some of these other groups. You know, The Fathering Project being a little bit more formal, but things like the Australian Dads Network is the one that comes to my mind that is very dad-driven. And the amount of support and care that dads have within the group is a really amazing thing for me, as a healthcare professional, to see, because in some ways I'm hoping to make my own job redundant in that the community can support each other and care for each other. And able to see things like people posting stuff up saying that they're struggling and all the comments being like: ‘hey mate trying to call you, you know, pick up your phone and I'm here if you need anything’. Just seeing that sort of support happen organically is really amazing, and I think it's a it's a real privilege as a healthcare professional to see that happening as well.
Professor Elizabeth Elliott
So, men’s groups are really valuable.
Dr Vincent Mancini
Yeah!
Professor Elizabeth Elliott
The National Organisation for Fetal Alcohol Spectrum Disorder, the NOFASD website, also has a helpline for mums and dads, and others who are dealing with issues, so they can put people in touch with kids who are also in a similar position. And I recently had the opportunity to do a parenting program in fact with my 25 year old daughter who said to me: ‘you should have done this years ago, mum!’ and it was - we were introducing it into the Fitzroy Crossing communities, and I don't think we can underestimate the value of those sort of formal parenting programs as well.
So now there's another question here about um the role of health professionals in in helping people who are isolated - feeling isolated in issues of not only fathering, but their own alcohol use.
Nyanda, would you like to comment on, you know, where should - how can health professionals help those dads who are either feeling isolated in their fathering or having problems with their alcohol use?
Associate professor Nyanda McBride
Yeah, I mean, it's a service provider opportunity I guess to identify the forums that work best for men with the men that they're currently involved with. I really do believe that it comes back to talking to men finding out what are the best forums that work for them. I mean, Vincent's identified some that really work well from Grassroots building up, you know, that that power of peer engagement and peer involvement. I really think that you know this is coming out as a really strong thing from this forum that men need and want the opportunity to work with their peers and to assist each other and building on that sounds like it could be a really good starting point for future work.
Professor Elizabeth Elliott
And I think Michael, you know, your community support model is also aligned with that approach, isn't it?
Dr Michael Doyle
Yeah, look absolutely. I’m also just picking up on the alcohol use. I think the screening for men as per standard when they come into a Health Service around alcohol use, I don't know how much, you know, that actually occurs, and I think it's probably a handy way to raise the issue. If you sort of screen how much you're drinking, you go through that, and there's a number of screening tools including the Grog App which Kylie Lee and Kate Conigrove, who my colleagues, helped to develop. And there's a number of ways in which to have that conversation and start that. And I think often a lot of men are grateful that somebody actually asked, and that conversation began to happen rather than them saying those things first and having to feel like they’ve outed themselves. So having those sort of structures within a Health Service where things will just happen as part of the day-to-day service.
Professor Elizabeth Elliott
Great, thanks. Now, there’s a question here which, Geoff. maybe you'd like to answer.
Geoff Davie
While you looking for that Liz, can I just make a comment?
Professor Elizabeth Elliott
Yeah, sure.
Geoff Davies
One of the things in remote areas is that you have a number of service deliverers, but what I find is that there's a total disconnect between the service deliverers, and the reality of the men on the ground, and the lack of awareness of people who come into communities, about how the number of kids that maybe have FASD, and what that is, what that impact is on their job, and how they do their job. Like, teachers and policemen and health professionals, is that the lack of awareness is really about how to deal with a FASD kid, and how they behave is a real problem, because you then end up fighting the system as a carer and you're sort of always having to go in and advocate for your kid because the there's - you know - they're a troublemaker, or they're bad or whatever. because they don't have the learning themselves, or the awareness themselves about the problems that these FASD kids have. So having structured learning for people who come in, and drive in, drive out, fly in and fly out. Yeah, and the changing of that fly-in and fly out and driving and drive out model I think is also something that also needs to be addressed.
Professor Elizabeth Elliott
Yeah, thanks for that, Geoff. And Michael, could you provide Tina with the link to the Grog App so that we can put that up.
And there's also another comment. Nyanda, would you be able to provide some web links to the research indicating the links between preconception alcohol use and increased harm to the baby?
And the final question which I was looking for, I've just found. Geoff, could the panel talk a bit about the Bigiswun Project which is a follow-up to the Liliwan Project? And inspired by Tristan's successful journey through adolescence. Do you want to comment on that? or do you want me to comment on that?
Geoff Davies
It's absolutely needed, and I know that it's in train at the moment. One of the things I that I think… the prevalence study was fantastic, but one of the things that I think that has been missing and it was buy-in by a state and federal government in putting in the processes that were needed to be to support the people who were, when the liquor restrictions came in, and there was a whole bundle of stuff that that happened that stopped the, you know, cut down the drinking. And one of the things we need to inform about FASD. To me, there wasn't enough programs that actually then tackled the people who had the alcohol consumption issues. And so you know we talked about football and Sport and Rec and music and culture and those things. There wasn't enough investment into them to pick up the slack that had sort of been exposed by the cutting down of the amount of alcohol. And then, so these longitudinal sorts of studies that indicate whether things have been successful or not, I think absolutely need to happen. And there'd be a number of those people that were, I think, done in that original prevalence study, who have missed the boat if you know what I mean. That they haven't - they haven't turned out to be a Tristan, they've ended up being in the juvenile justice system, or committed suicide, or whatever. And so, it doesn't expose actually the amount of change that is required or hasn't been done. And so the Bigiswun Project is vital, and it should be the Bigger-bigger-Bigiswun as we go on, because these kids as they move through, we need to we need to find out what happens to them. Tristan was a good news story, but there is a bigger group of bad news stories if you know what I mean.
Professor Elizabeth Elliott
So just for the audience, following a prevalence study in the Fitzroy Valley, 10 years later we're following up those adolescents to see what they need, what their aspirations and hopes are, what services they have not or have been able to access, and, really, what services are needed. And I think it just illustrates that FASD is a lifelong problem, it's not a problem of childhood, and how important it is to not only identify it in early childhood but get in place the Education, Health, and other supports that are necessary.
So, look, I think we've come to the end of our time, and I just want to thank you all very much. It's been a really interesting session, and it became evident to us that there's very little of the voices of men as fathers, advocates, health professionals in relation to FASD. Thank you to you also Nyanda for representing the female sex here. But thank you all for sharing your stories and your very personal stories, and congratulations to all of you on your work. So thank you to the audience for attending, thank you for your questions. Thank you, panellists, and thanks again Tina for producing such a seamless webinar
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More Information
Tristan’s Story
www.theliveswelead.com.au
Michael and Lina’s Story
www.bit.ly/3f5u11L
The Fathering Project
www.thefatheringproject.org
Grog Survey App
www.gathering.edu.au/ResearchItem/grog
National Drug Research Institute
https://ndri.curtin.edu.au
NOFASD
www.nofasd.org.au