Get Real: Talking mental health & disability
Get Real presents frank and fearless conversations about mental health and disability, including people with lived experience, frontline workers in the sector, as well as policymakers and advocates. Get Real is produced and hosted by Emily Webb and co-hosted by Karenza Louis-Smith on behalf of ermha365 Complex Mental Health and Disability Services provider (https://www.ermha.org/).
Get Real: Talking mental health & disability
Complex Needs: Fetal Alcohol Spectrum Disorders
Sophie Harrington is our guest for this episode. Sophie is the CEO of NOFASD Australia, the nation’s peak body supporting people and families living with Fetal Alcohol Spectrum Disorders.
NOFASD presented at the Complex Needs Conference 2025 on the complexities of this hidden disability, sharing research, therapeutic strategies and resources, in particular for health care professionals and support workers.
NOFASD Helpline 1800 860 613
ermha365 co-hosted the conference with ACSO Australia on behalf of Victoria Government’s Department of Families, Fairness and Housing (DFFH), which funded the 2-day conference.
ermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.
Helplines (Australia):
Lifeline 13 11 14
QLIFE 1800 184 527
13 YARN 13 92 76
Suicide Callback Service 1300 659 467
ermha365 acknowledges that our work in the community takes place on the Traditional Lands of many Aboriginal and Torres Strait Islander Peoples and therefore respectfully recognise their Elders, past and present, and the ongoing Custodianship of the Land and Water by all Members of these Communities.
We recognise people with lived experience who contribute to GET REAL podcast, and those who love, support and care for them. We recognise their strength, courage and unique perspective as a vital contribution so that we can learn, grow and achieve better outcomes together.
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Speaker 2:Welcome to Get Real talking. Mental health and disability brought to you by the team at Burma 365.
Speaker 3:Join our hosts, Emily Webb and Carenza Louis-Smith, as we have frank and fearless conversations with special guests about all things mental health and complexity with special guests about all things mental health and complexity.
Speaker 4:We recognise people with lived experience of mental ill health and disability, as well as their families and carers. We recognise their strength, courage and unique perspective as a vital contribution to this podcast so we can learn, grow and achieve better outcomes together.
Speaker 3:Let's stop stigmatising people. Let's stop blaming people because they consumed alcohol and either they didn't know or they couldn't cease at that time.
Speaker 5:Welcome to Get Real talking. Mental health and disability. I'm Emily Webb as we record this. The Complex Needs Conference happened last week and it was incredible. Erma 365, co-hosted with AXO Australia on behalf of the Victorian Government's Department of Families, Fairness and Housing, which funded the two-day conference. There were so many fascinating and important presentations and discussions and we wanted to capture some of these for podcast listeners. Now Sophie Harrington is our guest for this episode. Sophie is the CEO of NoFazD Australia, the nation's peak body supporting people and families living with fetal alcohol spectrum disorder. Nofas-d presented at the Complex Needs Conference on the complexities of this hidden disability sharing, research, therapeutic strategies and resources, in particular, for healthcare professionals and support workers. At IRMA 365, some of the people with complex disability that we support in the NDIS space live with fetal alcohol spectrum disorder, so NoFazD's presentation was of great interest to us, so let's get into the conversation. Welcome, Sophie. Thank you for your time.
Speaker 3:Hi Emily, Thanks for having me here today. It's a pleasure to be able to have a chat with you and talk through a little bit more about FazD and your excellent conference that's just taken place.
Speaker 5:Yeah, it was really amazing. Such a buzz. It was awesome to see so many people talking and a lot of people know each other too in this complex needs space. Sophie, it was great to see no FASD at the Complex Needs Conference. Clinical Advisor and Coordinator Sinead Freeman and project support officer Simone McHenry presented, and at the same time you just got back from Seattle where you were at the ninth international research conference on fetal alcohol spectrum disorder, so tell me about how that went. You presented there as well.
Speaker 3:So, yeah, it was a wonderful opportunity. I was there speaking to a couple of different presentations one on behalf of no Fasdy, australia, as part of the Every Moment Matters campaign, which is an awareness campaign around pregnancy, alcohol planning a pregnancy and realising the risks of potential alcohol exposure in those early weeks and throughout, as well as breastfeeding and the risks that can be involved there as well, and that was a fabulous presentation to be able to actually talk to international audience about how powerful and impactful the Australian campaign has been led by the Foundation for Alcohol Research and Education. The other presentation was an hour presentation to a really busy room, which I was pleased to see, and that was looking at FASD and stigma and talking about how a diagnosis of FASD is a pathway to understanding and support. It's not a label, it's a way of actually explaining why somebody has the brain-based symptoms that they do and how to provide them support and getting it out there talking about it. Let's get rid of this stigma that is related to FASD.
Speaker 5:There are two main functions of no FASD, and you touched on them just before. So it's to prevent alcohol exposed pregnancies and improve the quality of life for people impacted by the condition. So, firstly, how does fetal alcohol spectrum disorder impact the lives of people? Can you talk to your own experience with your son too, because your lived experience is a really powerful part of your involvement with NoFazD?
Speaker 3:Yeah, yeah, absolutely. And I mean as an organisation, nofazd Australia have been in Australia for more than 25 years now as the national voice, so for living and lived experience, really at the forefront of advocacy and education and support for individuals and families affected by FASD, as you've rightly just said, and a lot of the work that we're involved in, and certainly a lot in the space where I share my story, it's really helping people to understand that we're comfortable talking about alcohol, we're comfortable consuming alcohol and I say we as the, the royal, we as a societal group in australia. It's part of our culture living here and you may detect an english accent coming from the uk yeah, 20 odd years ago, also part of the culture, and you know it's celebrated, it's used for commiseration, we talk about it very openly. We came out of covid with ministers referencing you. Now we can go for a pint and things like that. So it's on the national stage. It's embedded in everything we do.
Speaker 3:But as soon as alcohol is seen as a concern, it's turned into the person's problem, if you like, and I say that in inverted commas. It's no longer seen as the fault of alcohol, as a highly addictive substance. It's seen that somebody has a problem with it. It's no longer seen as the fault of alcohol, as a highly addictive substance. It's seen that somebody has a problem with it and it's on them. And I think I'm just really keen to have that conversation and talk about it more widely, because the reality is that prenatal alcohol exposure happens more often than not, when people don't know they're pregnant and therefore FASD often doesn't get diagnosed until much later in life. And for those who do have a diagnosis earlier, it's generally because it's seen that the behavioral symptoms of their brain-based disability are being shown in society. They're having such difficulties in terms of impulse control, being able to control emotions they have. And I'm saying and I'm generalising but often individuals with FASD will have what's called age dismaturity. So you know they could be an 18-year-old but their emotional regulation, their behaviours and how they present their communication skills may all be far, far younger, maybe even half their typical chronological age, and we're very accepting. I think of that when somebody's a child. But when they become an adult or an adolescent, it's really hard to manage what we see as the behaviours because an individual doesn't have the supports in place.
Speaker 3:So I'm really open about talking about my family story and I joined NoFansD over seven years ago and I, like many, had come to the organisation thinking I knew a fair bit about FazD, having worked in the justice sector, out-of-home care sector, aod sector.
Speaker 3:And I came to the organisation and I othered FazD and yet this whole time I've been parenting my eldest son, who's my eldest biological child. I have two beautiful boys and my eldest son was exposed to alcohol before I knew I was pregnant Six and a half weeks was confirmation but it never had occurred to me, nor had it ever occurred to any of the clinicians that I spoke with, that he could have been prenatally alcohol exposed. It just wasn't on my mind because I didn't drink or didn't consume alcohol throughout my pregnancy, and that's because I had the knowledge, I had the information that to consume alcohol could be risky to developing fetus. I didn't truly know why, but what I did know is that I wasn't planning to consume alcohol when I was pregnant but fell, fortunately, pregnant very quickly. So I share that story very publicly now.
Speaker 5:To be honest, everyone I know who didn't realise I was pregnant in the early weeks has said, oh my God, like I had like a massive night or I've got two children myself and I wasn't drinking at the time I got pregnant. But I actually didn't realise that FASD could impact at that early stage, because so many people don't realise they're pregnant and might have had a couple of big nights or a few glasses of champagne. So that's actually quite revealing to me.
Speaker 3:It is, I hope, and I should say that our NoFazD Australia helpline will be mentioned and in the show notes at the end. So just for anyone who is listening now, as a bio mum myself who came across the realisation whilst I was doing my research to present a training session for NoFazD, I will just acknowledge that there are many feelings that go with the realisation that your child could be affected by alcohol exposure and, as you say, emily, I mean generally sort of pregnancy symptoms are not recognised until about five or six weeks, especially if somebody isn't planning at that stage to be pregnant, and at least 40% of pregnancies in Australia are unplanned or unintended. So the likelihood of the incidence of alcohol-exposed pregnancies being far greater than we ever talk about and the risk and the ongoing misdiagnosis or missed diagnosis with FASD is really very common and this is why I'm so passionate about speaking out. It's why I'm so passionate about sharing my story, not in any way to make anyone feel any sense of guilt or concern, but for my family, for me, for my husband and my son and my younger son. We now have some form of validation when we realised why his behavioural symptoms could be as they were presenting.
Speaker 3:There's a phrase that's coined in the FASD world around. It's not that an individual won't do something, it's that they can't. And you know I'm talking about specific scenarios, not a person in general. Obviously, our children and adults living with FASD have most amazing strengths and skills, but there's also areas you know that society expect people to be able to do certain things that maybe they can't. And understanding it's a brain-based disability, a whole of body. Brain-based disability, I should say, because it's more complex than just neurological impact. You know, the more we understand and the more we can actually look at FASD differently and realise that you know what, when people are supported, when early intervention is in place, it can make a major difference to outcomes for everybody.
Speaker 5:So when was it that you went down the road of trying to find out what was happening with your son and, yeah, like, how did you come to think that fetal alcohol spectrum disorder could have been part of that?
Speaker 3:I'd worked with families who had children with FASD. But a number of the individuals I'd been engaged with and I'd been around had had a number of severe or difficult life outcomes and circumstances. We just happened to be lucky and I use that terminology. Lucky because we didn't have a background of intergenerational trauma or we weren't living with background of intergenerational trauma or we weren't living with trauma. We had stability, just purely circumstantial. We weren't dealing with poverty, we weren't dealing with, you know, whether we would have a domestic violence situation. We didn't. We had so many protective factors that we didn't realize. So our son's behaviours had been, on the whole, had been managed reasonably well. Again, luck.
Speaker 3:And for us, he was 12 when I joined no Fasd Australia and it was then when I kind of having a little bit of a joke with a colleague and saying oh my gosh, my son fits so many of these different areas and he's got all of these different challenges. But I didn't consume alcohol when I was pregnant because I too, as you just said before Emily, never really thought about those early weeks. It wasn't in my mind at the time. So it was a startling reality. It was a moment of recognition and recollection of talking to my GP on pregnancy confirmation and actually telling him at the time that there had been a couple of exposures, I mean my son's alcohol exposure. From memory and we know our memories are imperfect would probably have been about three or four occasions of binge drinking. So in our culture that would be more than four standard drinks, more than four glasses of 100 mils of wine.
Speaker 5:I know, and most, let's face it, most people have more than that when they're out drinking.
Speaker 3:I don't think it'd be too untypical for a large percentage. For sure you know so he was by the time we went down the path of having the recognition. It was two years to get a full diagnosis. He had seen other clinicians across the years for a specific learning disorder, which he didn't have. But I was able to look back at that report with new insight and think, oh my gosh, well, for for FASD, there are 10 brain domains that are assessed and three need to be severely impaired for a diagnosis of FASD. Now he already had two that had been assessed as severely impaired. So I was thinking, okay, there's a few things adding up here. So we we then took him for a speech pathology assessment and he had severe language impairment in his receptive language. That would never have been something I was aware of. I wasn't a clinician, I wasn't clinically trained, and he was very verbal. His expressive language was fantastic. So we weren't looking for something that was there and hidden in plain sight, I guess.
Speaker 5:Wow, that's so interesting and it highlights that you even need a little bit of awareness to sort of cotton on to that and a lot of people, I'm guessing, don't know much about it. And I'm going to ask about the public education and health promotion. I've certainly seen information about alcohol use in pregnancy from, like, the state government or the federal government. I'm sure that I probably got information when I was pregnant with my daughters I was pregnant with one of them in the UK and I can remember the NHS had some stuff and that there's no safe amount. But to be honest, that just went over my head because I'm like, oh, surely it's fine to have a little bit like, come on, do you think people understand this and what are the challenges that you've found about raising public awareness about alcohol use and pregnancy?
Speaker 3:I think, if I'm honest, I think a big part of it is our love affair with alcohol. And I think you know, we know that the alcohol companies and I'm not getting at alcohol companies they have a product and they want to sell it, but they have billions of dollars that can go into targeting the people they want to target. And you know I'm not using the right terminology, but women were seen as a gap in the market about 20 years ago because they didn't consume the same levels as the male population. So you know there's been a lot more strategic direction around promoting alcohol to women over the last two decades. I think alcohol is so acceptable, it's available, it's affordable.
Speaker 3:You know I wouldn't use a substance that this is my personal choice. I wouldn't use a substance that was not seen as being acceptable or legal in society. Alcohol was and is, and therefore it didn't occur to me that it was. I should probably give a little bit of context to that as well. A year before we even thought about me ceasing birth control, I stopped smoking and my smoking was that I would smoke on a Friday night with alcohol when I drank. So I stopped that part of my behavior a year before I even thought about coming off birth control because I had that public health message. Yeah, the messaging now and I think it's really important to look at the messaging now is from 2020,.
Speaker 3:The National Health and Medical Research Council updated the guidelines around alcohol and pregnancy. So it does clearly say now that there is no alcohol to be consumed, and that's about when you're planning as well. Say now that there is no alcohol to be consumed, and that's about when you're planning as well. And thankfully, there's emerging research and just being at the conference in Seattle recently as well, where we're talking more and more about the paternal impacts of alcohol exposure. So not to say that that causes FASD, but the fact that having good quality sperm that has not been exposed to alcohol is a protective factor for the fetus as well. So the message now is really three months before you start to think about conceiving, males and females should avoid alcohol completely or, if they can't avoid alcohol completely, access some supports to be able to help them on that journey for harm minimization. We just don't have that information out there, so you, the more we can talk about it, and opportunities talking with you, emily, are great to be able to really push that forward.
Speaker 5:Yeah, I know there's advice you know about, like not wearing tight undies, you know, help your sperm be free. But that's actually really interesting. I didn't realise that either. And also I think it's important because so much blame or pressure is on the person who is pregnant. You know the mother of the child or the person who's pregnant. It's actually good to hear that the dads they have to look after their sperms. You know if you're planning a baby. And yeah, when you mentioned the smoking, I can remember with our second daughter we were kind of like, oh yeah, maybe maybe not, and I was having. Look, I'll be honest, I was occasionally having a cheeky cigarette and I had some. Yeah, I can remember. Then I found out I was like, oh God, yeah. So I just think it probably happens a lot more than we think. It's just people don't want to talk about it because you don't want to be judged.
Speaker 3:Yeah, and something like you've just said there, emily.
Speaker 3:Something that's quite common is people will say, oh well, I drank when I was pregnant and my babies are fine and my children are fine, and you know what.
Speaker 3:This is the case and this is why it's a Russian roulette, because people can have healthy pregnancies.
Speaker 3:They may have consumed the odd alcoholic drink throughout their pregnancy or, you know, cigarette, like you've just said then, and there may be no apparent impacts. And the thing is, those stories are compared with people, like my story, for example, where I consume the amount of alcohol that some people may not think would have been too impactful, but the binge drinking episodes are the parts that really have a massive difference. It's really important I highlight that the public health message is zero, because there is no proof to say that anything more than zero is going to be okay. There is proof in animal model studies to say that even one drink can cause a change, doesn't cause FASD, but can cause a change to that developing fetus. So prenatal alcohol exposure is never a good thing, but some people may not be as impacted as others. We don't know at this point through research why my pregnancy, as an example, would have been more impacted than some. But because we don't know, we can't take that risk.
Speaker 5:Wow, I am genuinely. I had no idea. I thought I knew a little bit about it, but I had no idea. So is there research happening to try and see, like, why some people it may happen, why some others? I mean, still, I guess the message is you know, no alcohol during pregnancy. But are there studies happening?
Speaker 3:Oh, you know there's a lot that happens in the space around looking at genetics and DNA and the expression of DNA like I would do it an injustice to try and quantify that and qualify that better without the research background.
Speaker 3:But certainly there is more happening in that space. The bigger, broader, wider issue really is to talk about our relationship with alcohol and the removing the stigma that comes with alcohol exposure in pregnancy. And you know, I don't know anybody personally and I haven't heard stories either where somebody has intentionally consumed alcohol to cause a lifelong disability in their child. The reality is people either consume alcohol because they don't know they're pregnant, they consume alcohol without knowing the risks, or they have a dependency or misuse disorder and they need wraparound support and telling someone don't drink is not helpful when they have and must have support to help them on that journey. And I should just say, if anyone were to be listening today that is struggling with alcohol dependency or a misuse disorder, to cease alcohol immediately if you are pregnant or could be pregnant is very dangerous for the person who's consuming and also the baby. So really important to get medical advice as soon as possible.
Speaker 5:That's a really important message because so often, as you said earlier, misuse or dependency becomes that person's problem rather than looking at all the reasons why that person might be dependent on alcohol or a substance. So I'm really glad you said that. Now. Is fetal alcohol spectrum disorder hard to diagnose? I was reading information on your website excellent website that it can look like ADHD or autism. It can look like a few things. So is this a challenge to diagnosis?
Speaker 3:Yeah, and that's a really good question, emily, because the crossover between the brain domains for assessment for fetal alcohol spectrum disorder and for autism and for ADHD do cross over in several of the different domains and what tends to happen and again I'm generalising, but a lot of you know this is not the clinician's fault, this is not anybody's fault. It's about information, it's about knowledge, it's about raising awareness. The senate inquiry that took place and was released in 2021, I think it was now after the findings that came out from that there's something like 33 recommendations. Just in December last year, the Australian Government Department of Health and Aged Care released their response to those findings, and a couple of those findings were that information and knowledge around assessment of FASD and looking for FASD amongst general population as well, doesn't exist in the allied health degrees. So somebody may, with all good intention, have completed a psychology degree with a fabulous remit of content, but the amount of content around FASD would have been minimal and therefore and I just pick psychologist as one profession, but it's similar for equally across allied health professions in terms of the knowledge that's not embedded.
Speaker 3:So when it comes to the case of assessing for FASD, somebody either may not be looking for it. They may not be familiar with it, they may not have actually experienced the assessment process to work through for diagnosis. This is why it's really, really important for everybody to stay up to date. There are courses diagnostic courses that are run in different locations around the country no, fasd Australia and the FASD Hub have our websites that people you know. These days I don't need to give out a website address Google, fasd Hub, google, no FASD Australia and you'll be able to find more information and get really the support that's needed. And I cannot encourage anybody enough, but particularly families who think that perhaps they have a diagnosis for one particular disorder or disability, but the interventions, the strategies and the approaches aren't actually meeting the needs of that person. It's really worth considering the next step of do we need to look further Because it's commonly missed or co-diagnosed with other disorders?
Speaker 5:And so healthcare professionals, as you said, like Allied Health, who interact with children and adults who need services, so to be speech pathology, OTs, I guess GPs I have read a fair bit, I think. Where I have read about FASD, it's often where children are in foster care and then it becomes apparent. That's probably the articles I've seen, but I guess it's a whole breadth of people who probably need to get more informed.
Speaker 3:Absolutely. Knowfazd Australia was part of the Every Moment Matters campaign, which I've mentioned. That was led by FAIR. We were involved in one of the streams particularly, which was stream two, and that was to produce very baseline information for the out-of-home care sector and that's that are diagnosed. You know, it's really important that people working in those professions are aware because, sadly, managing the behavioral symptoms of a child with FASD who then become an adult can be incredibly challenging for a carer who does not know the differences and how they can accommodate and work with that individual to really improve the home scenario and the outcomes for that child and I say child because we're talking out of home care and equally, so many people in the justice system. You know, one WA study, which was back from 2018, but is representative as a sample, was 36% of the individuals that were currently detained at that time had a FASD diagnosis after the intensive assessment process that was undertaken there.
Speaker 5:I had thought, as you were talking I'm like I bet there's a lot of people with FASD in jail or going through courts.
Speaker 3:Yeah, absolutely, and the impacts of the alcohol on the brain as it develops from those very early stages and throughout the pregnancy. It affects those areas of you know, being able to manage emotions and big emotions and have you know, in inverted commas, appropriate responses that are needed at the age and stage of an individual. It relies on having, you know, good communication skills and communication is often an area that's really impacted because of language, but because of receptive processes, auditory processing, cognition, being able to manage in different environments, like there's impulse attention. There's so many areas that are impacted which, if you know an individual with FASD each individual is different. My son would present very differently to the next person. So it's about really being open-hearted, open-minded and actually being inquisitive in order to be able to support somebody and help provide some of those early interventions to avoid some of those secondary conditions later on in life.
Speaker 5:Yeah, and of course, I guess the frustration that someone with FASD has about not being able to communicate or how they're processing information that comes out in challenging behaviours. And you know, it's about understanding why. I'm not a professional, I'm a comms person, but I've learnt this from working at Irma.
Speaker 5:about you know, yeah, which is great, but you know, on the face of it, people would go, oh my God, you know, like that behaviour, it's unacceptable, and that's the thing where people need to understand more. It's the why, isn't it? What are the support and advocacy needs for families and carers that you see with your work and from your own personal experience? Because, as you've mentioned a few times, there is a lot of stigma that comes with it. You know, external and also internalised.
Speaker 3:Yeah, there's so many different supports that really are just adjusting our lens, how we see individuals and families through that makes a massive difference. As a biological mum, as a family of a teenager who has FASD, really what we needed and I speak to many families who would say the same is for somebody to ask the question in the early stages if they had had the knowledge to do so, when they're building a picture around history of a pregnancy and then looking at potential outcomes, really being courageous to include that question around alcohol exposure as part of a normal history gathering of information. You know, lifestyle before, lifestyle during, lifestyle after all of those things exercise, smoking, alcohol, nutrition, trauma impacts all those sorts of things. So there's that part of the equation. I think the area we find ourselves advocating for a lot of the time is with health professionals who may not be FASD informed. We've got some amazing health professionals that we engage with, some really amazing people who really get it and can help in that space from a point of view of diagnosis, but from the perspective of being able to put in supports that work for the individuals.
Speaker 3:I think a key factor, you know being an organisation that's the voice of families and individuals for over 25 years. A big space we find is that parents and caregivers aren't listened to. They may be sharing their experiences and trying to advise. Let's pick a profession, an educator within the school, who has a very busy time, who has many children in their class, but the family really trying to talk about what interventions might help or what challenges they're seeing for their child. So we do see a lot in that space and we get involved of needing to write letters to schools to support families, to help individual teachers, but departments to better understand the challenges and the supports needed for individuals, Equally with the NDIS.
Speaker 3:You know ndis has been a fabulous scheme for many, including for many who live with fasd. But it's the burden of being able to provide evidence and really needing to do to the nth degree with fasd, which isn't necessarily the case with many other disabilities, and we often find ourselves in a space of having to support families through, you know, being denied access to the NDIS despite having a lifelong disability which would just present differently across the lifespan.
Speaker 5:It sounds like a lot and I think family life's busy and then you've got to do all this stuff and it costs money and it takes time and it just sounds like your organisation does such great work. 25 years old, it's going strong. So where are we at now? With no FASD Australia?
Speaker 3:Thanks for asking that question because, having just moved into the hot seat of being the CEO just a month ago.
Speaker 3:Thank you. Having been with the organisation for a while, I've been very blessed to be able to be mentored by Louise Gray, who's the CEO, who's recently left, and by a fantastic board who are very FASD informed and have a real range of backgrounds and experiences. For me, the vision, and for us as an organisation, is to continue with our core vision and mission, which is around reducing alcohol-exposed pregnancies and around supporting families to have the best quality of life. As part of that, a big piece that I want to be working for as we move into the next few years is around advocacy. In a much greater extent, it's a role that's been embedded within a number of our roles in the organisation, and my hope is that we can actually push more in that direction so that we can have a louder voice.
Speaker 3:As a biological mum myself, I've been speaking for the last few years and recently have started to add more that I'm a biological mum, as opposed to leaving that part out of the story, and the only reason I left that part out was to protect my son, because that wasn't something he wanted shared. Whenever I talk publicly, I do share the story of being a biological mum. I don't carry. I won't say I don't carry the guilt. That would be telling fibs. There's always going to be guilt because it was something that could have been prevented had I have had that knowledge.
Speaker 3:But my passion is about supporting other families, other women, other partners and the individuals to really make sure that we're bringing this out of the closet. Let's stop hiding, let's stop stigmatising people, let's stop blaming people because they consumed alcohol and either they didn't know or they couldn't cease at that time. So my mission really is to drive hard on that stigma, to get it out there. Because if we talk about mental health concerns, you know, you've just been involved in the Complex Needs Conference, which was a wonderful event, and 15 years ago people were scared to talk about mental health and then, when it came out into the public domain, it became okay, thank goodness. And now we need to do that with FASD. Let's stop blaming people, let's just support, let's move forward. So that's a really big push and goal for me and for the organisation over the next few years.
Speaker 5:Well, you have a friend with us at Irma365 and I agree, I think that most people, everyone's just trying to do the best they can, and what you just said is really important, because what's the point in blaming someone like that's not going to help anything. Is there anything, as we wrap up, that we haven't covered in this conversation, that you'd like to share, and definitely share the details of the helpline, which I will definitely put in the show notes?
Speaker 3:I think we just need to normalise the conversations. I think that's the key. I think when individuals are diagnosed early, when it is recognized, when really you know, on the no FASD website and on the FASD hub there's a language guide, and I think in the media, in the public forum, talking about FASD and talking about prenatal alcohol exposure and making sure we do that in a way that we are talking about the alcohol, we're not talking about the, we're not talking about the woman, we're not talking about the blame, we're talking about misinformation or lack of support and I think really that's absolutely key to get across to everybody. And individuals with FASD can live really productive, really happy, really positive lives. But we do need to change our thinking and we need to make sure we are putting the appropriate scaffolding and supports in place to make that happen.
Speaker 3:I will just give that helpline number so it's heard as well as seen in the notes. So the NoFazD helpline is available seven days a week and that's a 1-800 number. It's 1-800-860-613. And, as I say, google NoFaz, fasd. Many families, particularly if they think there could be a potential that their child has been exposed to alcohol, will often go to the website first, look at some of the resources and then give us a call, but they need to know that that helpline is there for them and for everybody, and that includes practitioners, service providers to find out more, to come and talk to us. And, emily, I think you and I should be looking at a future joint webinar of some description with complex needs.
Speaker 5:I think definitely, because I've learned a lot. That's what I'll say, and I don't work on the front line, but I love supporting the work that Irma365 does in the complex needs space and you know it's so important to get the message out there. So I will be sharing NoFazD Australia stuff all over our social media and I just want to say a massive thank you to you and good luck in your new role as CEO. How long have you been in the hot seat?
Speaker 3:I was coming up a month, so it's pretty fresh. Oh, you've been to Seattle.
Speaker 5:Oh my gosh, and you're doing podcasts and wow, okay, you've been busy. The website nofasdorgau and that's n-o-f-a-s-dorgau, it's got so much information, fact sheets, your own podcast episodes, loads of stuff. It really is a place to go to find out more. And, for our listeners, if you have been affected by anything in this episode, you can call Lifeline on 13, 11, 14, but you can also call the no FASD Australia helpline. Sophie, tell me again 1-800-860-613. Excellent, and that is for a lot of things, for support around. No FASD, isn't it?
Speaker 3:Absolutely there for everybody and anyone and confidential, so important to know. And, emily, one thing I didn't say and I should say as a bit of a call to action is that in September we now call that FASD Awareness Month. We make a big month of it and we join with many partners around the country to make that happen. So if you see anything lit up in red in September, particularly around the 9th of September, representing the nine months of pregnancy, on the ninth day of the ninth month, then please do take photos, visit our social media. That's how we get the message out there is through social media. So please do and tag us so that we can share your post too.
Speaker 5:Brilliant. I'll be all over that. I'm going to put a note in my calendar. Awesome, thank you. I've really really found this conversation fascinating, sophie, and I think our listeners will too, and, of course, the people who heard the organisation at the conference. So thanks again for your time.
Speaker 3:Thank you, Emily. Really love the fact we've got this platform All the best.
Speaker 2:You've been listening to Get Real talking mental health and disability, brought to you by the team at Irma 365. Get Real is produced and presented by Emily Webb, with Corenza Louis-Smith and special guests. Thanks for listening and we'll see you next time.
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