This episode marks the five-year anniversary since the very first episode of NOFASD’s podcast series: “Pregnancy, Alcohol and FASD: The Surprising Reality”.
For this special anniversary episode Kurt is joined again by Louise Gray, Chief Executive Officer of NOFASD Australia, to chat about key issues related to Fetal Alcohol Spectrum Disorder. They discuss the ongoing work of NOFASD Australia, which this year is celebrating its 25th Anniversary as the National Organisation for FASD and highlight new services developed and expanded by the organisation over the past five years. In addition they reflect on some of the persistent myths about FASD which can negatively impact on prevention of this disability as well as the understanding of the multitude of ways in which this spectrum-based disorder presents in different individuals and what is being done to counteract these myths.
Link to the first episode of NOFASD’s podcast: https://www.nofasd.org.au/01-myths-with-louise-gray-from-nofasd-australia/
For more information please go to https://www.nofasd.org.au/
Producers: Kurt Lewis, Julie Flanagan and Louise Gray
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewee: Louise Gray
The copyright is owned by NOFASD Australia.
All rights reserved – No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia.
Transcript
Frances Price (00:02):
How much do you know about the effects of alcohol during pregnancy? The reality may surprise you.
Alcohol exposure while in the womb can damage the brain of the developing baby, causing it to develop Fetal Alcohol Spectrum Disorder or FASD. It may lead to lifelong physical, and/or neuro-developmental impairments, such as problems with memory, attention, cause and effect reasoning, and difficulties in adapting to situations
For such an impactful disorder it is rarely spoken about in the popular media. NOFASD Australia’s podcast series is designed to raise awareness and understanding of FASD by giving listeners an opportunity to hear from those who have the deepest understanding of the impacts of FASD. This is “Pregnancy, Alcohol, and FASD: The Surprising Reality”.
(01:05):
This year, 2024, is the 25th anniversary of the founding of NOFASD Australia by Sue Miers. Originally established by Sue as an organisation run by volunteers. NOFASD has evolved over the subsequent years to an organisation with a team of passionate, professional staff, a Board of Directors, and an actively involved advisory group, comprised of individuals with lived experience of FASD. Over this time, the gradual growth of the organisation has allowed new initiatives to be rolled out, all with the aim of raising more awareness and understanding of FASD and support for those who are affected by this disability. Just five years ago, the first episode in NOFASD’s podcast series was released, featuring an interview with CEO Louise Gray. In this episode, our host, Kurt Lewis, is once again joined by Louise as they take a look back at developments over the past five years and a look ahead at the future focus of NOFASD. Over to you now. Kurt.
Kurt Lewis (02:22):
Welcome, welcome to this very special anniversary episode of “Pregnancy, Alcohol, and FASD, the Surprising Reality”. I’m your friendly neighborhood podcaster, Kurt Lewis. In this episode, we celebrate this podcast five-year anniversary by going back to the very beginning. I have with me Louise Gray, CEO of NOFASD Australia. We’re going to talk about this very important anniversary, what has changed since we last spoke, and revisit the topic of myths. Thank you so much for joining me on this important podcast episode Louise. Can you believe it has been five years since we recorded that first interview for the podcast series all the way back in the midst of 2019? Can you believe it?
Louise Gray (03:09):
Absolutely not. I can hardly believe it. I’m really, it’s actually a wonderful idea that you thought of doing this because I never would’ve probably volunteered to do it. But I think that when I looked through the transcript, it was fantastic to see all the changes and certainly I think you’ve come a long way because I’m pretty sure at that point you were doing it as a volunteer for us, and now you’ve turned it into a career and you’ve done many, many, many more podcasts, so you’ve come a long way too.
Kurt Lewis (03:38):
Well, I was grateful for the opportunity, and to do this podcast series. I honestly learned a lot from our first interview. I dunno if our audience did. I hope they did. As much as I learned from that first episode, I mean just…
Louise Gray (03:51):
Well, I learned a lot through it today too – I forgot – yes, how right. I was. But anyway, it’s been great to have you. I think the podcast series has been an excellent addition, and I’m very grateful that you remembered this anniversary.
Kurt Lewis (04:05):
I remember during our last interview, we discussed the history of NOFASD as an organisation, and the services we offer. What has changed over the past five years. Are there any developments that you think our listeners would be interested in hearing about?
Louise Gray (04:20):
Absolutely. There were lots of developments. FASD, as everyone knows, is a fairly challenging and complex disability, so it’s easy to lose sight of advances, and in fact, there’s been some improvements for sure. We’ve been able to offer since 2019 over a series of funding initiatives and whatnot, a program called “Families Linking with Families”, which started as a pilot and now operates regularly as a support group for families who are caring for children or have children who are at risk of FASD or possible FASD, or have been diagnosed. And so that program’s made an incredible difference. And what really even changed that program a bit further was that COVID came along. So suddenly the notion of online support groups was no longer a question, it was a had to be or a must be. And those groups have actually flourished in the online environment. I think people feel a lot more comfortable when they’re in their own home having conversations, meeting other people, and the feedback is always amazing.
(05:28):
People say how wonderful it was to connect with other people who are having similar experiences, and from those initial groups of people, we’ve got new parent facilitators, because we have a coordinator and then two parent facilitators, and those parent facilitators are crucial, and that role has really grown.
So yes, that’s one thing since I last spoke to you. Labelling’s become a law in Australia, and while not all alcohol manufacturers are actually putting their labels on their little cans and bottles, the fact that they have to, and the incredible increase in them doing it has been really important. The “Every Moment Matters” – the huge national prevention campaign led by our colleagues at FARE, really changed the awareness of FASD, and they did an amazing job with multi-reach campaign across supermarkets and television advertising and socials. And I think that’s been another game changer; the podcast program, another game changer; forming a formal lived experience group – they’re known as the PEAG, but lived and living experience and without the input of those very kind and generous people who meet regularly and offer their perspective as individuals who’ve got that lived, and, or living experience. So formalising that group has been a good step forward as well. So yeah, I could actually probably go on, but I’ll stop.
Kurt Lewis (07:00):
It sounds like there’s been a load of developments there. I’ve been involved in the podcast program, but there’s the “Families Linking with Families”. The labelling has been such a big thing – you can, it’s amazing that I find I can walk into a bottle shop now, pick up a bottle, and I see an alcohol warning for do not drink alcohol while pregnant. It’s a very big development and that Every Moment Matters thing, if you’re not in Australia listening to this, you’ve probably never heard of it, but people in Australia have now experiencing the advertisements, no alcohol while pregnant or trying to get pregnant. If you haven’t seen it on TV, you’ve seen it on bus stops, you’ve seen it on social media. It’s really perpetuated through our society, which is a great thing, a great development.
Louise Gray (07:45):
It is. And in fact, FARE, who led that campaign, have had it extended for another year, and hopefully that extension will continue because you do need to keep reminding the community of that warning. It’s important that it’s always there. And FARE did a good job working with agencies like us, and other NACCHO, the community controlled aboriginal organisations. So it led to a lot of joint work. And there was also a separate “Strong Born” campaign, which NACCHO led, which was also very successful. So overall, that’s been a definite change. Another thing I forgot to mention is our online conference, once again, “The FASD Forum”. And again, that was an offshoot that was advantaged by COVID just because once people considered going to a conference, and it does actually turn out to be quite fun to go to a conference for two days and still wear pajamas, and sometimes we even have pajamas as a prize because they’re thematic to the idea of an online conference.
Kurt Lewis (08:46):
Definitely that was a big development in terms of the, and especially necessary over COVID where we couldn’t go anywhere stuck in our homes. It’s always good. And now that we’ve got this platform, we can now continue to get it out to people. I know that we discussed last time we discussed the NOFASD, but we also had another discussion in our last interview all those years ago surrounding myths of Fetal Alcohol Spectrum Disorder. I know reflecting back on that discussion, I remember I was being amazed by the fact that any alcohol while you’re pregnant can affect the unborn fetus. I think that’s pretty average knowledge for me now. But back then, before I became FASD informed, that was big turning point and how that could affect FASD can have high reaching effects into the population. What do you remember out of that particular discussion that really stuck with you?
Louise Gray (09:40):
I never lose sight of that particular point because it becomes a mantra where you need to be always ready to discuss the fact that there is no known safe limit. So therefore the advice has to be that there shouldn’t be any alcohol exposure during pregnancy or planning of a pregnancy or even a possibility of a pregnancy. So I think that message needs to stay the same, and it’s still, I think, probably one of the areas that requires the most attention because as you say, alcohol consumption is so embedded in Australian society, and that’s something that COVID didn’t do anything to reduce. If anything, alcohol consumption rates generally increased, I think across the population. I don’t have those figures to hand, but certainly there was a general trend to increase, and I’m not sure that that has pared back despite increased awareness and stronger warnings from the Health and Medical Research Council about alcohol consumption. So that’s certainly an ongoing problem.
Kurt Lewis (10:50):
So reflecting back on this discussion now, five years, do you think progress has been made in terms of community awareness about the facts about FASD rather than the myths?
Louise Gray (11:02):
Definitely. I’d say there’s definitely more awareness of the existence of FASD and the problems that it can cause for people who’ve been exposed to alcohol in utero. So I think that has grown and it will continue to grow. I think we’re a long way from complete understanding or saturation, but there’s been a definite shift, and that’s to do with all of the work that’s being done, the majority of which has been funded by the Australian Government Department of Health and Aged Care. And they’ve certainly done a sterling job really in recognising gaps across the range of areas where FASD needs to be sort of focused on or addressed. And we’re very grateful for that support. And I’ve certainly been behind the national prevention campaign and many of the other initiatives.
Kurt Lewis (11:52):
I’ve been working now in this FASD space for over five years, and I’ve noticed some misconceptions many people have about this disability. I find the major and most alarming of these is that FASD people believing that FASD simply doesn’t exist, that it’s just an excuse for behaviours and not a disability. How does everyone who is FASD- informed deal with people who have chosen to dismiss the effects of this impactful disorder as a deliberate choice rather than a disability?
Louise Gray (12:22):
Yes. I mean, you’ve hit the nail on the head of one of the most difficult aspects of working in this space. That’s again, sort of a daily mantra to have to keep reminding people and to keep explaining. Certainly people with lived and living experience who elect to become spokespeople have an incredible role to play there because that makes a difference when people hear personalised stories. And we have got better at trying to capture some of those stories on film so that people don’t have to keep on telling their story because it’s exhausting to do that. But it does help the community at large understand that it is a disability. And I guess those three little words that Diane Malbin is really quite famous for having coined a phrase, that she coined in regards to FASD, which is can’t, not won’t. And encouraging people to see FASD through that lens of that someone can’t do it, not want to do it.
(13:21):
And we certainly find that helpful. It’s come up quite a few times in support groups. People when they realise that about the children they’re working with, it makes a big difference. And that carries through to adults too, of course. And I think hopefully, the next five years we’ll see even more understanding of that particular concept and that notion of the disability. I think it’s difficult to make it clear to people how complex the disability is, and how the impacts of it can be not recognised and hidden throughout a person’s life. That’s where the education lies in explaining what the disability can look like and also making it very, very clear that there are lots of positive interventions because it’s very early intervention and recognition of the condition makes a world of difference to a person who’s been affected by alcohol exposure in utero. So all of those sorts of messages will continue to be the work that we are doing.
Kurt Lewis (14:22):
Looking ahead for the next five years. What do you think are the most pressing issues about FASD that need to be addressed?
Louise Gray (14:30):
I don’t think they’re actually new issues so much as areas where we’ve now got sort of more capacity and the time is right to keep on strengthening the work that’s been done there. So absolutely, as I mentioned already prevention and the prevention messaging that FARE has been leading the campaign on, that’s been very important and needs to continue. Because you know, if you drop a prevention message, people will forget the message and it’s like, Australia never lets the messages about slip, slop, slap slides. It started off once it was slip, slop, slap, and now it’s all of these other things. But that message never gets forgotten because it’s constantly being reinforced by health authorities, because you do need to remind people. And certainly alcohol exposure during pregnancy needs to be a constant prevention messaging and supported. I think having very clear pathways, improving pathways for people so that there’s early recognition, early seeking of diagnosis, early intervention plans, ongoing monitoring of the disability. as you would with any other medical and health type of condition.
(15:42):
You don’t just identify it and then ignore it. And to some extent, traditionally FASD has been seen as something that can’t be cured, so therefore it’s not been enough focus on what you can do. And there is a lot of things that change lives, and it’s like any disability. If you bring in supports and accommodations, you can change life for that person and then also for their family and community. So I think those pathways gradually emerging, as there’s an increased workforce, is a big plus. And the NDIS has had a role in that too, because FASD is now recognised more as a disability, whereas five years ago it wasn’t properly listed on their list of conditions, so it’s been good to see that change. Increasing information and support for adults because as people become more aware of FASD, adults become more aware, that might be the reason that they’ve struggled to keep their life on track. And I heard a health professional actually commented to me that he had a patient recently say that to him, that in the course of the diagnostic procedure, the patient said, “I’ve always wondered why I can’t keep my life on track”. And understanding that that was the diagnosis, there was a disability, which explained that for that particular patient was a relief. So that’s an emerging group of people as that knowledge becomes more well known.
Kurt Lewis (17:07):
Kind of interesting – with any other disability, if you are paralysed, you know that you can’t walk. But with FASD, it’s difficult even for the people who have that disability to know how it affects them. There’s stuff until it’s pointed out, in some ways,
Louise Gray (17:22):
It’s not an easy thing as an adult to come to terms with, and perhaps it won’t be not everyone who thinks that that might be something that they have, that disability will seek that diagnosis, but certainly NOFASD tends to be contacted by the people who do want information. So we’ve noticed a fairly consistent and steady increase in those types of contacts, as these other messages and the greater awareness has been around in the community.
Kurt Lewis (17:54):
A follow up to that kind of question, I think is what is the vision for NOFASD as an organisation? I mean, we discussed what’s been going on for the last five years. How do we evolve from here? How do you see NOFASD evolving to assist people with FASD and their parents and carers?
Louise Gray (18:12):
There’s probably a bit of repetition here because the goals for FASD and NOFASD are relatively similar. And certainly as I noted before, prevention, constant prevention messaging has to continue to be there because otherwise it will just slip off the radar. And it’s amazing how something can slip off the radar. And I’ve seen that in other countries where money’s been invested in FASD awareness raising, and then it’s short time-limited grant funded for three years, five years, then it’s not reinvested – and it slips off the radar, people forget about it, and myths start creeping in – back into which communities are affected by it, or you know I thought that problem had gone away- which I actually had someone say to me once at a FASD conference from another country because that the problem went away. it’s that any kind of investment in the awareness of it went away – and the problems are all still there.
(19:08):
I think the pathways for us and for the next five years, if we do this interview again in five years, I’d like to be able to say, well, we just have this incredibly clear pathway from the moment someone has a concern about the development of a child and the referral sources, the way that more information about the condition would be sought. Is it FASD? Is it something else? Heading towards diagnosis, getting the diagnosis in a timely manner, getting information with the diagnosis that enables the condition to be managed and more positive outcomes. And we sometimes hear stories like that right now of people who will comment that their child’s life changed at school once they have the diagnosis, because then in this discussion with the teachers, they saw the child and the student in a different way, and that makes a huge difference. So more of those stories because that’s completely the norm rather than the less common story would be very helpful. So that means reducing wait lists, increasing the workforce, those sorts of fundamental things, which without them we’ll never have those successes. And yeah, as I said, adults, they are an emerging group and the responses are different, the management is different, the circumstances are often different. So I think adults are a specialist and emerging field that we would certainly develop, and I think a lot of that will fall back to the support and involvement we have with lived and living experience advisors who are an integral part of the organisation.
Kurt Lewis (20:42):
So should I book you in for the 10th anniversary podcast interview or?,
Louise Gray (20:47):
Yeah – I think, yeah. I only like to do it once every five years, so yeah, that’s a good idea. That’s a bit scary though, to actually add five to 2024 and start thinking about 2029. Well, at 2029, there will be a full 10-year Strategic Action Plan that was led by the Department of Health and Aged Care, completed, been implemented over 10 years, it’s been evaluated and it’s been monitored. So yeah, there will be interesting just to see how that landscape has changed since that plan was launched in 2018.
Kurt Lewis (21:30):
Definitely. I look forward to seeing the results of that. Thank you so much, Louise, for coming on and chatting with me today, going over old ground, talking about what we’ve talked about in the past, but also looking to the future and hopeful the landscape in the future. So thank you so much for sitting down with me today.
Louise Gray (21:45):
Well, you are very welcome and thank you, Kurt. It’s been wonderful to have you leading this program. And as I’m sure I said before, when I did my first podcast, when you first came to me, I thought, who wants to listen to podcasts? That’s what I thought. So I’m not a mover and a shaker as I thought I was, but you were. And it’s been a very good thing. So thank you.
Kurt Lewis (22:07):
Thank you.
Frances Price (22:11):
Thank you for listening to this episode of ‘Pregnancy, Alcohol and FASD: The Surprising Reality”. If you like this podcast episode, please show your support by leaving a rating and review on iTunes. We appreciate your feedback. All rights reserved. For more information about Fetal Alcohol Spectrum Disorder please visit NOFASD Australia’s website: www.nofasd.org.au