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NOFASD Australia Podcast

Pregnancy and Alcohol: The Surprising Reality

#30 Australian FASD Indigenous Framework with Nicole Hewlett

Kurt is joined by Nicole Hewlett, a proud Palawa woman and researcher with the University of Queensland. Nicole is currently undertaking a PhD focusing on the development and implementation of Australia’s first FASD Indigenous Framework. They talk about this framework; improving medical care for people with FASD; the importance of a strengths-based approach in terms of FASD and creating equal partnerships between medical professionals and people with FASD.

For more information about FASD, please go to: https://www.nofasd.org.au/

To read more about Nicole’s research then go to this link: https://pubmed.ncbi.nlm.nih.gov/36982125/

Producers: Kurt Lewis, Louise Gray and Julie Flanagan

Narrator: Frances Price

Interviewer: Kurt Lewis

Interviewee: Nicole Hewlett

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.

The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.

Nicole Biography

Nicole Hewlett is an Aboriginal woman with a Bachelor’s degree in Psychological Sciences (Hons) and a Master’s degree in Public Health. Nicole has broad experience with Aboriginal and Torres Strait Islander communities across Australia and recently managed a nation-wide Aboriginal and Torres Strait Islander project aimed at raising awareness of, and reducing the impact of FASD in Australia. This project provided Nicole with unique experience while developing her interest in, and understanding of, FASD. The extent of the damage caused by alcohol in pregnancy and knowledge gaps amongst health professionals and in communities are issues she hopes to address. Nicole is passionate about raising awareness of the risks of alcohol-exposed pregnancy and advocating on behalf of those living with FASD, in particular those who are incarcerated. She has a keen interest in ensuring that Aboriginal people have a voice at tables where the most difference can be made in addressing FASD.

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):

Today’s episode features an interview with a university researcher who has a passion for educating communities about FASD and improving the interactions between those who are affected by FASD and the professionals who are working with them, with the goal of achieving better, more holistic outcomes. You’ll learn about her latest research, which focuses on the development of an Australian FASD Indigenous Framework.

Of course, it is important to remember that while FASD is an issue of concern in many Indigenous communities, it is certainly not confined only to Indigenous communities. FASD can, and does, occur wherever alcohol is consumed.

It’s now my pleasure to introduce you to the host of NOFASD’s podcast series, Kurt Lewis, who’ll introduce you to his guest for this special episode.

Kurt Lewis (01:59):

Welcome. Welcome, Ladies and Gentlemen, to this brand-new episode of Pregnancy, Alcohol, and FASD: The Surprising Reality. My name is Kurt Lewis, your friendly neighborhood podcaster. In this episode, I’m chatting with a researcher and a project manager at the University of Queensland, a proud Palawa woman who is undertaking a PhD, focusing on the development and implementation of Australia’s first FASD Indigenous framework. A very big welcome to Nicole Hewlett. How’s it going, Nicole?

Nicole Hewlett (02:35):

Oh good, Kurt, thank you. That was a very passionate welcome <laugh>. I love being here. Thank you.

Kurt Lewis (02:40):

I aim to please, I aim to please <laugh>. So, you know the first question, how did you first learn about FASD?

Nicole Hewlett (02:46):

Disappointingly, actually <laugh>, I went through four years of a psychology degree and an additional two years of a Master’s of Public Health. And, not once in that six years of education, do I remember FASD coming up. That included a child development, you know, 101 in Psychology. There was one slide, that I vaguely remember, about, the – one of the consequences of women that had substance disorders and the impacts on bub, but other than that, nothing. There was absolutely nothing around FASD and it wasn’t until I took on a project at Menzie’s School of Health Research here, I fell into it. I just wanted to work at Menzies, so it wasn’t necessarily the project that I was interested in, or the content. As you do as a project manager, you learn all about what your deliverables are, and the project was focused on training the health workforce in Fetal Alcohol Spectrum Disorder.

(03:55):

And that is when I discovered everything there is to know. And you know, that first moment, and I think a lot of people can probably relate to this, but that moment where you’re like, how is this not everywhere? Like this information, how is this not stamped on every alcohol bottle, just everywhere? And I was mortified and also a sense of sadness that I had access to this knowledge and so many people don’t, because I would’ve absolutely thought that, like probably many Australians, that once I tested for pregnancy, that’s when it starts counting. So, not before. So, I would’ve probably drunk right up until that test if I’d even known that I was pregnant and not understood the kinds of risks I was taking. And my heart just goes out to those that don’t have that knowledge. And I think the injustices around that makes for my passion in this space just that much more.

Kurt Lewis (05:00):

Sounded like you started making like connections there and I find when, especially when I kind of fell into it as well, you kind of make connections and stuff you, you didn’t realise that was there in terms of…

Nicole Hewlett (05:12):

Hugely… in your family… it’s an unveiling, right? Like it, it’s like this veil has been put up around society and then, once you see it, you wonder like, how did you not see it before? It’s just such a revelation. And then everything, you can’t avoid seeing it. It’s everywhere. And the relationship with alcohol, and the influences of the industry on Australian society also get revealed. It’s like you’ve just realised how long you’ve been cheated <laugh>, you know, like, and, and you, you sort of just, yeah, wake up and that just felt like my experience and I was in utter disbelief that I could be privileged enough to be so well educated and yet not know of one of the most harmful consequences in public health and in psychology out there today.

Kurt Lewis (06:09):

So how did you go from doing a kind of a job to making it part of your PhD?

Nicole Hewlett (06:15):

So, I am a very reluctant PhD <laugh> student. I don’t like to refer to myself as a researcher. I find that a very dirty word, but I guess I fell into this PhD as well. Like I’ve never really been someone that kind of plans a career pathway at all. I just sort of take one step in front of the other and then, you know, where I land, I land and I have always remained in, I suppose, the FASD space and with the NOFASD family ever since that project and done a lot of work around it, just because that, it’s in your blood now and so you, you’re driven by this passion and of course that passion is contagious, and it’s shared and, and we’re all in solidarity around this. And, and then I connected with other people in the space ,researchers and one of those people was

(07:03):

Dr Natasha Reed and she got funding to revise the Australian Guidelines for Assessment and Diagnosis of Fetal Alcohol Spectrum Disorder. And she asked me to come in and, and support the, the cultural perspectives and the Aboriginal and Torres Strait Islander voice and advise on how we might better embed that into the mainstream guideline to support clinicians and any health professional working in this space on how they might best support Aboriginal and Torres Strait Islander clients across Australia around diagnosis and FASD. And from there, yeah, it just became a PhD. I feel like I got ambushed a little bit, <laugh> a little bit into it, but for good purposes I’m sure the ancestors know what they’re doing. But yeah, I, I always twitch a little bit when someone introduces me as you know, someone that’s doing their PhD, I’m like,ugh, I’m one of those people now! <laugh>,

Kurt Lewis (08:02):

Speaking of your PhD, you were the lead author in a recently released research article called The Development of an Australian FASD Indigenous Framework, Aboriginal Healing-Informed and Strengths-Based Ways of Knowing, Being and Doing. In this article, you and your other co-authors propose Australian Fetal Alcohol Spectrum Disorder, Indigenous Framework. Could you explain the key points about the framework to listeners?

Nicole Hewlett (08:33):

Sure. As I said, when Natasha asked us to come along and advise on how to embed Aboriginal and Torres Strait Islander perspectives into the mainstream guideline, it became really apparent that it wasn’t enough just to add little text boxes here and there, because there was so much more to the story that needed be told. Our voice really needed to be embedded in a practical way that really supported workforce on the ground, both non-Indigenous and our Aboriginal communities. And so, it turned into a mammoth <laugh> journey, which – I mean I might have been the lead author on that, but I cannot emphasise enough that the knowledge that we collaborated on is neither my knowledge, nor is it new knowledge. And a lot of it was informed by just some of the most incredible Aboriginal demigods that we have in the Fetal Alcohol Spectrum Disorder space. And that really cultivated the richness in this framework.

(09:40):

And essentially what the framework is, is an understanding and also a toolkit around firstly what do non-Indigenous clinicians need to know, be and do in order to deliver culturally responsive, healing-informed and strength-based access to say FASD knowledge resources, supports, assessments and diagnosis. So, all of it, for our people. And then, on the other side of that, there’s also things that our people need to know, be and do. And so, the framework also looks at, well, what at our community level do we need to know, be and do to access those FASD resources as well? Because it takes a whole of society to create access and equity around Fetal Alcohol Spectrum Disorder, whether it be knowledge, whether it be assessments, whether it be a diagnosis. And so, the framework is essentially around that. It is highlighting what we’ve found around both Aboriginal and Torres Strait Islander people, but also non-Indigenous clinicians, what all of us need to know be and do to have equity and access to FASD assessments and diagnosis

Kurt Lewis (11:01):

Access and equity. That’s brilliant really in terms of FASD diagnosis, because FASD diagnosis is one of those things that a lot of people don’t have access to, and there’s not a lot of what I would call equity in how FASD is treated, especially by people who don’t understand this invisible disability. In, in terms of this framework, how is this different to the approach being currently being used? What are the benefits in comparison?

Nicole Hewlett (11:30):

And you hit, you know, the nail on the head then. It, there is an approach right now, and there’s definitely no approach that specifically supports our people in accessing knowledge resources and assessments and diagnosis for FASD. So, it benefits in the fact that it’s a starting point. It’s definitely not a magic bullet, it’s not a panacea. And we’re not saying that what we’ve found in this is going to work for every single community, but it’s something. It’s something that if an Aboriginal health worker on the ground in whatever community discovers FASD and has a passion to do something in their community around it, this is what we found that perhaps might be useful as a starting point, so that they’re not just left alone without any support or feeling hopeless about seeing a situation in their community and – and not feeling like they’re equipped to address it in any way. And on the other side of it, we’ve got a lot of description around what non-Indigenous clinicians can know about our community, but we’ve got very little in terms of what can they do? Like how do they apply the knowledge that they have around supporting our people in this space? And that’s what the toolkit offers for non-Indigenous clinicians. We’ve provided practical things like what can they do in their practice to support our people and our access in a way that is healing- informed and strength-based.

Kurt Lewis (13:06):

So essentially it offers pathways for both.

Nicole Hewlett (13:11):

Absolutely.

Kurt Lewis (13:12):

In your research article, one of the things you mentioned in in terms of medical and other professionals, they can find it very difficult to speak to Aboriginal people about FASD. You can be considered kind of like a major barrier people find in in addressing this invisible disability essentially. What do you believe are the major barriers in speaking about FASD?

Nicole Hewlett (13:36):

Just generally speaking about FASD I think it’s a really difficult topic for someone that might not have the confidence and the knowledge around it because we’ve all grown up in a society that has often a blame and shame approach when it comes to health behaviours. So, if someone gets diabetes then obviously they’ve eaten too much of this, or if they get lung cancer then they’ve smoked this and, and while, yes, this increases your risk, the narrative sitting behind these things are always blame and shame and FASD is no different.

Where if a mother, and she’s usually singled out as the solely responsible person, is held up as the person that drank during pregnancy and caused harm to her baby, then we blame and shame and it might be unconscious, but it’s there and those narratives are very deficit, which is why the western framework can be strengthened by Aboriginal understandings of things like disability, because our worldview is inherently strength-based and we can offer a lot to the western understandings and worldview in health to support better support to – to all Australians because it cuts through those blame and shame that kind of stigmatising approach that is often threaded in society.

(15:02):

But I think there are ways around it and using strengths-based approach and understanding that FASD isn’t totally preventable and that’s another message that seeks to blame and shame because many women don’t know they’re pregnant or many women aren’t educated about FASD and the risks. So, they’re not making informed choices. So, it isn’t totally preventable. There are others that have been deeply traumatized, and for generations, that might have a substance dependency, it’s not a choice that they’re taking. No one wants to willingly harm their baby. So yes, it is difficult for health professionals to talk about this, if they are not willing to go on a critical reflection journey around questioning some of the narratives and perhaps even their own relationships with alcohol.

Kurt Lewis (16:03):

It’s an interesting dichotomy in terms of alcohol is the only drug where you can simultaneously be judged for consuming too much, but also not consuming enough.

Nicole Hewlett (16:15):

Ah – and we see it everywhere. And the conflict that underpins it all is, I think it highlights just how insidious the alcohol industry is in terms of having all of these unconscious messaging that’s threaded through society that goes unquestioned because it’s not so obvious that it’s just present and they use fun Australian culture to make this product or this drug a part of the Australian identity. And when you do that, I mean it’s very clever, but when you do that, if you make something like that a part of your identity, yes, you absolutely get – one, the message of you should drink responsibly, but I mean we all know that that’s probably not a very genuine commitment by the industry. But also, this narrative, or this belief, that if you’re not participating in drinking, then you’re not participating in our culture. And that’s the subliminal message that, that’s playing out there. People have attached this to being part of who they are. And if you do not participate in that, then you are saying that you don’t want to be part of who I am.

Kurt Lewis (17:30):

People ultimately feel judged by someone who doesn’t drink, in terms of…

Nicole Hewlett (17:34):

Absolutely – and that, and you will find that they feel wary of that person that doesn’t drink. Like there is a trust issue, which is interesting, that occurs. And, and why is that? Why do people get so uncomfortable about someone not drinking? What does that say about that person? Because it’s coming from the person with that is often called as, you know, aggressive hospitality like drink, drink, drink, drink. But yeah, if someone does that, it’s important that they have an awareness of where does that come from? Like what is it about this other person not drinking that makes you so uncomfortable in this moment?

Kurt Lewis (18:15):

I also found it interesting when, when you were speaking before in terms of like western medicine, you mentioned that it looks at the more of the deficits, rather than looking at it as strengths-based approach. Do you think there’s a benefit to more looking at the strengths rather than the deficits?

Nicole Hewlett (18:31):

Oh absolutely. So, if you are looking for problems, you’ll find problems. It’s really as simple as that. And this fix-it attitude only targets and silos on problems, and it doesn’t look at the broader picture And, if you’re not looking at the broader picture, the entire person, the being of the setting they’re in, you are not going to address much. Because a human being isn’t just eyes, it’s not just a mouth, it’s not just an arm. But if we’re only targeting specific areas, then you are missing the entire other parts connected to that spirit. And the other side of that is a strength-based approach has been shown time and time again to undermine stigma. And that is a critical thing in all areas of health, but especially so in FASD. How do we address stigma at a society level? Well, one approach is focusing on all of the incredible strengths that people with FASD have, and they are abundant, as they are varied. And I think, how do we find ways to celebrate that and support those strengths, because there is so much that can benefit society by drawing on the strengths of those living with FASD.

Kurt Lewis (19:54):

I honestly couldn’t agree more. And I think they’re very underestimated by people sometimes.

Nicole Hewlett (19:59):

Oh constantly, constantly. And that’s because we look at the deficits, we look at where their challenges are not where their strengths are. All have challenges. All of us, of course we do. So, it’s, and it’s no different for someone living with FASD. Their challenges are different to our challenges. But their strengths are different to our strengths. But it doesn’t in any way mean that they can’t participate meaningfully at all points in time in their life.

Kurt Lewis (20:30):

One of the issues that is identified in the article is the issue of time, particularly the time that it takes to build the required trust between professionals and clients to enable an open and respective discussion around FASD. Is the challenge of building this trust a common issue for the Indigenous populations in Australia? And if yes, why?

Nicole Hewlett (20:54):

We can’t really respond to that question unless we talk about history and, and the story needs to be told that… and it’s a story about how the west came to Australia and colonised this country and in doing so, broke our trust and how ongoing ignorance, how ongoing attitudes, treatment of our people keep that trust broken. And even the western framework where they look at deficits and problems – and we’ve been described many a time throughout history as the Aboriginal problem. This language, these narratives that underpin attitudes to our people – they sustain this broken trust. And we have learnt from experience in each of our lives that we should not trust the health system. We should not trust any western system, because it will lead us to having our children taken away. It will lead us to being incarcerated. It will lead us to death in terms of going to hospital.

(22:02):

So, there are many reasons why we don’t trust, and they’re validated reasons and they’re often validated for families weekly. And so, the time is really required because that is what is needed to heal that trust. We need time to build a relationship with you, with non-Indigenous clinicians. Otherwise, we can’t find a way to connect to you. We can’t find a way to understand your place in this world and in the dreaming and in the broader sense of our knowing, being and doing. And if we can’t place you in the world, there’s no way we can trust you, or the advice that you have to give for us. So, it does take time. And this goes for other non-Indigenous clients as well. Like, it’s not just our people. There are many non-Indigenous clients that would not trust the system due to their experiences. And we always say that if you can make things accessible to our people, then you make it accessible to everyone.

Kurt Lewis (23:05):

Well, that kind of leads me into my next question in terms of do you think the Indigenous framework could be used successfully with non-Indigenous people?

Nicole Hewlett (23:15):

Oh absolutely. It absolutely could, because at the end of the day, it’s a human approach. It’s a social justice approach and it’s all about relationships, building trust from human to human, where no one is better or up the hierarchy. So, it doesn’t position clinicians as knowing everything. It positions clinicians and clients as equal experts. Clients are experts on their own lives, and they bring this knowledge into the exchange. And clinicians are experts on Fetal Alcohol Spectrum Disorder and assessments and challenges and supports that are available. But we come together in an equal way to share knowledge, to exchange, and most importantly to have reciprocity. So, in that way, absolutely, it’s, I think all Australians with neurodiversity could absolutely benefit from that.

Kurt Lewis (24:15):

Do you think this framework allows for both physicians and clients to come together as equal partners? Well, quite often in the past one, particularly the physicians, might see they hold more knowledge than their clients rather than coming together as equals in terms of their knowledge.

Nicole Hewlett (24:34):

And that’s what we’re hoping to untangle because yes, they’ve got knowledge in one area, but that’s not knowledge of the family. That’s not knowledge of the lived experience of that person with Fetal Alcohol Spectrum Disorder. They have the knowledge around that, but the physician has the knowledge around, okay, what might work? So, both knowledges need to be valued and respected equally if they are to come together and collaborate on the best approach. And that will make the clinician a better clinician because they are supporting the person or family living with FASD more meaningfully, and more effectively, because the solutions have been collaborated with the family, of what might work, what might best support that particular family – knowing the resources that they have, knowing the access that they have, and knowing the particular needs that they may have. And, and we know that every FASD person and family is different. It’s completely and utterly different. So, for a one, generic approach to be applied is quite useless. So, we need to start recognising that it needs to be a collaboration. If our people with FASD ,or any people and family with FASD, are to be best supported in our society, then we need more collaboration between those that are attending clinicians and the clinicians that are providing a service.

Kurt Lewis (26:13):

I loved when you said that every FASD family has different symptoms and one approach won’t fix all, because that’s very much true. I, one of my favorite sayings is FASD is very much a spectrum-based disorder. No two people with FASD will ever have the exact same symptoms, behaviours.

Nicole Hewlett (26:33):

Exactly – and that’s beautiful. Look, that’s beautiful. It’s what makes each person living with FASD unique and you know, and that’s something to be celebrated. If we can come together and identify the strengths and support them to live with the challenges that they may have. But there is no way you’re going to know that unless you collaborate with the person and the family living with FASD because they are so varied.

Kurt Lewis (26:59):

Exactly. And I think people don’t see that in terms of this disorder or any disorder.

Nicole Hewlett (27:06):

And I get that, and I get why – human beings typically fear what they don’t understand. And from that fear is always a negative outcome, which is either stigmatised or you, you just have negative views of that population and it’s, it’s always involves exclusion. So, I think we have to look at why there’s fear and again, that’s what, that’s how having a strength-based approach can really support, like to understand that there’s nothing here for you to fear, but everything for you to gain if you understand FASD and the uniqueness that it brings.

Kurt Lewis (27:47):

Yeah, I think you’ve summed up this framework really well in terms of the strengths-based approach. After authoring this article where you lay out the important issues and the framework, what is the next step here? How do we go about implementing these ideas?

Nicole Hewlett (28:04):

So, there’s multiple layers around this. One is around how do we use the underpinning principles to train non-Indigenous clinicians in what they need to know, be and do, on the ground to best support our community. On the other side, we need to get organisations like NACHO, so the National Aboriginal Community Controlled Health Organisation, to deliver training with the Aboriginal health workforce and the community that access NACHO services to train both the Aboriginal medical services as well as the community, around what they need to know, be and do, to access FASD knowledge, supports, resources, assessments, and diagnosis. S, that is the beginning point around how do we translate this knowledge and make sure that it reaches the ground in a way that is meaningful for that particular community because it will look different in every community, cause every community is different. So how do we make that underpinning spirit of the framework relate to those on the ground in a practical way?

Kurt Lewis (29:12):

I want to thank you, Nicole, for coming and chatting with me today and explaining out this framework to us – me and the listeners – it’s really important and I hope we’re able to implement these ideas with the people on the ground and move forward from here.

Nicole Hewlett (29:27):

Awesome. Thanks so much, Kurt – and thanks for having me.

Frances Price (29:34):

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


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