First episode of Pregnancy and Alcohol: The Surprising Reality!!!
Kurt is joined by Louise Gray (Chief Executive Officer of NOFASD Australia) to chat about Fetal Alcohol Spectrum Disorder, NOFASD Australia and the myths about FASD.
For more information, please go to https://www.nofasd.org.au/
Language guide – https://www.nofasd.org.au/wp-content/uploads/2019/04/FASD-HUB-Australia-Language-Guide.pdf
Producer: Kurt Lewis
Interviewer: Kurt Lewis
Interviewee: Louise Gray
Louise Gray
Louise is an experienced leader in the Not-for-Profit sector and is the Chief Executive Officer of NOFASD Australia. She holds a Master of Sociology degree from Murdoch University awarded for a research project centered on community knowledge and awareness of alcohol in pregnancy and has travelled to Canada to observe approaches to therapeutic prison environments, FASD awareness and education, and employment programs.
NOFASD Australia
This organisation is the national peak organisation and voice for individuals & families living with FASD, and is dedicated to facilitating improved outcomes for adults and children who have FASD and their families, through education, support & advocacy. NOFASD Australia was founded in 1999 by Sue Miers AM because of her personal experience caring for a child with FASD and her struggle to find information and appropriate support services in Australia. Together with a small group of committed volunteers, they named the group “National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD)’ and were incorporated in South Australia.. The organisation was re-named NOFASD Australia in 2013 to remain current with diagnostic terminology. From its grassroots beginning, NOFASD has now become the leading provider in Australia of information, services, linkages and referrals regarding FASD.
As a direct result of support from the Australian Government, Department of Health, NOFASD undertakes a range of activities including:
- Ensuring the voice and concerns of the parents and carers of children and adults living with FASD is represented and included where it needs to be.
- A helpline, advisory and referral service for those who have FASD or are supporting someone who has FASD.
- A regular newsletter providing the latest information on all aspects of FASD for all relevant stakeholders.
- Digital and in-person education and training services, including the free, online, seven-module “Australian Foundations in FASD” course which provides an excellent introduction to FASD. This foundational course is complemented by a variety of online webinars and videos addressing a variety of FASD-related topics.
- A comprehensive website of curated resources and links to assist in all aspects of FASD from those that provide an introduction to FASD, such as our list of “FASD Frequently Asked Questions” see: https://www.nofasd.org.au/parents-carers-and-families/general-faq/ through to more specialised resources tailored to the needs of parents, carers, educators and other professionals seeking to expand their knowledge of this disability.
- Participation and support across all relevant national and international forums and initiatives which promote pregnancy health, prevention, diagnosis, intervention and management of FASD.
- Service provider training to increase sector knowledge and further FASD awareness; NOFASD can deliver training sessions online or face-to-face. Workshops can be tailored to suit the specific needs of those being trained.
Episode Transcript
Kurt Lewis:
Welcome, welcome, everyone to the first episode of our little podcast. My name is Kurt Lewis, your friendly neighborhood interviewer/podcaster. I’m sitting down with Louise Gray, the Chief Executive Officer of NOFASD Australia. Louise, how does it feel to be part of our first episode?
Louise Gray:
Well, that’s a big responsibility, Kurt. But I am glad that you are devoting a series of episodes to podcasts on FASD because it is a really important topic, and it will continue to be an important topic in Australia because it’s a disability that we are hearing more and more about, and people need to know a lot more about alcohol and pregnancy.
Kurt Lewis:
Definitely, definitely. And if I can help facilitate that, then that would be awesome. So, let’s crack on with this. Tell us about NOFASD Australia and about your role in it.
Louise Gray:
Well, NOFASD Australia actually stands for the National Organisation for Fetal Alcohol Spectrum Disorder. So many people do think it stands for No FASD, which is really just a happy coincidence and perhaps a play on the letters.
But we are the national organization, and we were founded 20 years ago by a parent and carer who was really one of those pioneer people in her field. She fostered a child 37 years ago and she and her husband were both very experienced parents. So, when they discussed some of their concerns about her developmental delays with the Social Services Department at that time, they were more or less sent off to parenting classes and really, basically, not really given the attention that they knew that they needed for this little girl.
But as Sue herself says, she’s very stubborn and she’s very persistent. She basically went and sort of researched herself, realised what the problem was through the early days of the internet and getting on to websites overseas. So, she effectively was a pioneer in Australia for Fetal Alcohol Spectrum Disorder and has continued to play a volunteer role in the organisation, which she founded, which now has grown into an online Helpline for parents and carers.
We also have a really well-informed and well-curated website, and we provide a lot of resources to the general community and parents and carers. Anyone really who wants to know more about Fetal Alcohol Spectrum Disorder can find it on the NOFASD Australia website.
Kurt Lewis:
I had a look when I was first looking up Fetal Alcohol Spectrum Disorder online and yours – NOFASD Australia, the website – was the second one on the page. So, it’s definitely a very big resource and it’s very useful for people who know nothing and just want to be informed about what FASD is. I was just wondering how did you first become involved with NOFASD Australia?
Louise Gray:
I lived in Canada in the ’90s and worked with foster children who had Fetal Alcohol Spectrum Disorder, so I was aware of it. Then in coming back to Australia in the early 2000s, I was completely struck by the fact that F-A-S-D or FASD was clearly around, but no one seemed to know what it is, and it wasn’t even being named.
So, I came across Sue Miers, the founder of our organisation at that point, and then went on to do some study in the field and basically joined the board of the organisation. I think because Fetal Alcohol Spectrum Disorder is such a complex disability, you sort of learn about it, you stay in the field and feel very reluctant to let it go. Because you know what a challenge it is for people and people who are affected by it, really need all the help and support, they can get.
Kurt Lewis:
Definitely. What are your goals for the future for NOFASD Australia?
Louise Gray:
Goals for NOFASD Australia, I think, is to explore and strengthen the supports and the interventions that we can assist families with, because there’s some proven practices and some promising practices. There is a developing body of evidence about what works for children, families and adults living with FASD. But there’s still a lot more work to be done and, for us, that presents an area of great interest.
I think research-wise, even though we are not a research organisation, we want to support the FASD Center of Research Excellence in some of their research projects because it’s very critical to have an evidence base on a topic like this, so that you’re speaking with facts rather than beliefs.
Kurt Lewis:
Definitely. I couldn’t find many statistics effectively to do with Australia with FASD.
Louise Gray:
Yeah, a lot of people don’t realise the prevalence of any disease can be quite difficult to determine because, effectively, you would have to run some sort of screening test on a whole population or a sample population that represents the whole population. Australia hasn’t done any of those mainstream prevalence studies yet, but they have been done in Canada and the United States.
Australia, on average, drinks quite a bit more as a nation than either Canada or the US, so it would stand to reason that our FASD rates would be at least the same, if not higher. And the rates in the US and Canada in mainstream population, so we’re not talking special populations or populations that are viewed as having higher rates of addiction or anything like that, we’re just talking about the mainstream population, and it’s generally accepted that it’s at least 4%. The UK are saying pretty much the same thing. They may have even said greater than 6%, but that’s actually a lot of people. If you’re good at your sums and you multiply that percentage out across a population, it affects many more people than is currently realised.
Kurt Lewis:
I was wondering, in your experience in working with people impacted by FASD, what are the major myths you’ve found? What are the common myths that you hear about when dealing with people who are very unaware of what FASD is?
Louise Gray:
There’s a lot of myths in Australia, in general, about alcohol in pregnancy, so one of the most common observations, is people think that because there used not to be warnings – and in fact, up until 2009 in Australia, there were guidelines about the number of standard drinks that you could drink if you were pregnant and advice that sort of implied that, while it was better not to drink, it was still actually providing some guidelines about drinking.
Kurt Lewis:
So, I’m guessing what you’re saying is your consumption of alcohol, they were saying that you’re allowed to drink a certain level of alcohol?
Louise Gray:
Yeah.
Kurt Lewis:
I don’t know. What is the safe level of alcohol you can drink while pregnant?
Louise Gray:
Well, that’s the $64,000 question and basically there is no known safe limit. And in exactly the same way that you would not say to someone, it’ll be okay to have one cigarette a day or cigarette a week, it’s the same thing. It’s a very small person inside a woman and any alcohol is not going to be useful for that or it’s not going to be beneficial for that pregnancy.
But as to what leads to an FASD outcome, very broad general metadata studies point to one in 13 pregnancies that are exposed to alcohol leading to an FASD outcome. But that’s pretty rough data because it’s too difficult to get an accurate data on amounts of consumption. So absolutely, the message is that there’s no safe time for alcohol consumption during pregnancy, during any part of the pregnancy, even starting from conception – and there’s no safe amount.
Kurt Lewis:
None whatsoever.
Louise Gray:
Yes, and there’s no safe type. That’s another myth. I think perhaps there was one research study that pointed out that red wine might have a marginally beneficial health outcome, in general. Well, alcohol is alcohol, so it can be dressed up and flavoured in many different ways – but it’s all alcohol and it all has the same effect.
But yeah. Actually, there’s many other myths that could be… It’s a long question with a long answer, really, because people assume that it’s an Aboriginal problem and it’s not. It’s a mainstream problem. Aboriginal people have actually stepped up to the plate and there’s been some really important research and some really significant initiatives in Aboriginal communities to address FASD. That creates mythology that it is an Aboriginal problem when, in fact, it’s not.
Assumptions that it’s only alcoholic women, women who are diagnosed as severely dependent on alcohol will have an FASD outcome and, once again, that’s not true.
I guess one of the other prevailing myths is that there’s a willingness in society to blame mothers and blame women, when alcohol is rarely consumed by people alone. It’s often consumed in groups. It’s part of group settings and group situations. It’s offered in social occasions. It’s woven into every aspect of life. It’s really important that women receive really clear information and lots of support, particularly if they have developed any kind of dependency on alcohol.
Kurt Lewis:
So, it’s not the mother’s fault, then, if they consume alcohol while pregnant-
Louise Gray:
No, there’s-
Kurt Lewis:
… and I know it’s an obvious, bad thing to say, but it’s not the mother’s fault, is that what you’re saying?
Louise Gray:
Yes. I am saying that it is an outcome of either a lack of information, a lack of awareness, poor information, receiving the wrong sort of advice and encouragement from friends.
I mean, no one would encourage a pregnant woman to continue smoking. People are put under tremendous pressure to have a drink. “Oh, it’ll be okay. You can have one drink. I drank through my pregnancy; my child is okay.” There are those sorts of stories that people tell each other without any actual knowledge and not enough fact. It’s not the right message to be giving. We don’t give out a message that it’s okay sometimes to ride in a car without a seatbelt.
Kurt Lewis:
Exactly, yeah.
Louise Gray:
Australians are very compliant, we always put seatbelts on generally. There’s a very, very high rate of compliance with that type of legislation. Same with driving. Australia’s had spectacular success in reducing the incidents of drink-driving and raising people’s awareness that that’s a risk. We need to adopt, as a nation, the same willingness to support healthy pregnancies that are alcohol-free.
Kurt Lewis:
Definitely. That sounds like something we should definitely do. I noticed FASD has just become more of a problem. I haven’t heard much of it in the past, but I’m hearing more and more about it right now. How come it’s more of a problem now than it has been in the past?
Louise Gray:
I think you’re hearing more and more of it right now because organisations like NOFASD and like the Commonwealth Department of Health and like the FASD Hub and many of the other child development services are doing their job, which is raising awareness.
FASD was first identified in 1973, so it’s a great mystery as to why, 50 years later, not enough impact has been made. In fact, the rates of alcohol-exposed pregnancy globally are actually increasing because women’s consumption of alcohol is increasing on a global basis, even if there might be pockets in some countries where it’s being reduced.
But there’s always been FASD. It’s just that it wasn’t recognised. Certainly, historically, there have always been people who are developmentally delayed, and it’s now we know what much of that is, and it’s even more important that that awareness is there.
Kurt Lewis:
I was looking on your website and I saw that you have this language guide. It’s a very, very comprehensive language guide. It tells what language should be used when speaking about FASD and that got me thinking, why is language important when discussing FASD?
Louise Gray:
I think language is always important when discussing disability because you only need to look back at ways that people who had a disability were described historically, so I think realising that those kinds of labels are very harmful and very hurtful.
Certainly, with FASD, some real damage can be done because another myth with FASD is that because it’s not curable, therefore, there’s no point in doing anything about it, or diagnosing it. That’s shocking. I mean in no other medical case do we ever adopt that attitude. I mean, yes, if someone has a severe and aggressive tumor that’s likely to be terminal, we still don’t adopt, as a society, an attitude, “Well, there’s no point in doing anything because it’s a terminal tumor.”
So FASD, there can be many things done with early diagnosis and the recognition of the disability can change people’s lives. I’ve not heard of anyone who didn’t appreciate getting that information and I know, for some people, it’s been really mind-altering for them to realise that it’s not their fault, it’s that they were born with brain damage.
But yes, that’s where that negative language comes in. If you start to use words like “permanent brain damage” and “it’s incurable” and “it’s the mother’s fault,” – it’s not the mother’s fault, it’s the alcohol’s fault. Alcohol is the substance and that’s where the focus needs to be in addressing a disability like this.
Kurt Lewis:
Because I imagine it can create a lot of stigma, especially for the mother, I imagine.
Louise Gray:
Interestingly, stigma is such a problem in FASD that the professor who originally researched FASD, Professor Kenneth Lyons Jones, he’s still incredibly active, still runs a clinic at the University of San Diego in California and his research interests have now branched into stigma. Because he tells the story really of when he and his colleague, who has since passed away, David Smith, when they presented their paper to a pediatrician’s conference, they were howled down, first off, because no one sort of wanted to believe them.
But they thought themselves that it would be a relatively easy fix once people realise that the research was telling the truth. Then some French research came out, which reiterated the same results that Smith and Jones had, and he thought it would be so easily fixed. He sort of realised that the complexity around alcohol and society and issues related to stigma and blaming mothers for it, all of those sorts of things, have actually made the problem much harder to solve.
Kurt Lewis:
I was just wondering, is there more that I could do or anyone listening at home could do as individuals or as a community to prevent people from being impacted by FASD?
Louise Gray:
Well, I think you’re already doing a lot. I think having podcasts and looking at different ways to get messages and information out to different audiences is a really important step and different age groups, different settings. Because it’s all very well to put health pamphlets in a doctor’s office or that kind of formal setting, but it needs to be talked about more.
I think everyone should question and examine the role that alcohol plays in their lives. No one should ever have to explain why they don’t want an alcoholic drink and yet you will find that in Australia, in social settings, people feel they need to say, “Oh, I’m not drinking because I’m driving.” “I’m not drinking because I am pregnant.” Certainly, a lot of women do, once they realise they’re pregnant, they do stop drinking. But it’s just alcohol is so accepted that people feel they have to justify it if they’re not drinking.
Really it should be the reverse. You should not have to explain that. There should always be a really good range of non-alcoholic choices and interesting choices. Because I’m sure many women who are pregnant will tell you of going to places and the choices are Coca Cola or warm water as an alternative.
Kurt Lewis:
Yeah.
Louise Gray:
Any woman of childbearing age is well and truly needing to have alternatives and not to feel that they need to explain why they’re not having alcohol.
So, I think, personally, that’s something that everyone can do, and I think just sharing the information and increasing the knowledge that people have, and the awareness that people have, and not telling people that, “Oh, it’s okay to have a drink,” or “I had a drink.” You won’t know, you may not know.
Kurt Lewis:
I suppose we’re very judgmental as a society. We love our alcohol. Australians love their alcohol. Historically, and even now, you go out to a bar, you go out to a pub, everyone’s having a drink. But yet, we’re willing to judge those who have FASD. It’s very interesting kind of conundrum there. Well, not kind of conundrum perhaps, but just an interesting… No, let’s say ironic. Ironic is probably definitely the word. It’s a rather ironic situation that we’re willing to stigmatise the people who’ve been impacted by FASD.
Louise Gray:
Yeah. You’ve hit the nail on the head. I wonder too. It’s almost like the greater support that alcohol has in society, the more willing we are to judge people who’ve had a negative outcome from it. But I don’t know what the answer is.
Kurt Lewis:
I’d like to thank you, Louise, for being willing to sit down to chat with me today. Thank you for coming and just investing your time. I hope you enjoyed the experience.
Louise Gray:
Yes. Well, thank you, Kurt, and best wishes with your series. You’ll open up interest in the topic, I’m sure, to a new audience, so thank you on behalf of NOFASD.