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Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.

NOFASD Australia Podcast

Pregnancy and Alcohol: The Surprising Reality

#33 ‘Risk does not equal destiny’ Social Worker Panel Interview with Prue Walker and Dr Kerryn Bagley

Kurt is joined by Prue Walker and Dr Kerryn Bagley in a panel interview about social workers and FASD. Together they discuss how they first learned about FASD, the role social workers play in assisting people with FASD and their families. They also examine outcomes, risk surrounding FASD and how social workers can become better informed in relation to this ‘invisible’ disability.

International FASD Awareness Day is held on 9th September every year. This date was chosen (the 9th day of the 9th month) to link to the nine months of pregnancy and reinforce the message of avoiding alcohol consumption for the entire nine months of a pregnancy, starting from conception. Learn more about International FASD Awareness Day: www.nofasd.org.au

References:

Latrobe University’s “Living with Disability” YouTube site: https://www.youtube.com/channel/UCAf1u7TdOktOCLdGBtMxWTg

Dr Robyn Williams: https://www.linkedin.com/in/robyn-williams-0ab76596/?originalSubdomain=au

Prue Walker: https://pruewalkerfasd.com/ – workshops, training and FASD consultation services..   

Dr Vanessa Spiller: FASD training and resources https://www.jumpstartpsychology.com/Explained-by-Brain-Group.html and other videos (search vanessa spiller fasd)

Dr Sara McLean: FASD resources for Emerging Minds  https://emergingminds.com.au/resources/what-is-fetal-alcohol-spectrum-disorder-fasd/ and has many webinars online (search sara mclean fasd)

Key readings for social workers who want to learn more about FASD:

Badry, D., & Choate, P. (2014). Fetal Alcohol Spectrum Disorder: A disability in need of social work education, knowledge and practice. Social Work and Social Sciences Review, 17(3), 20-32. https://doi.org/10.1921/swssr.v17i3.795

Gibbs, A., Bagley, K., Badry, D., & Gollner, V. (2020). Foetal alcohol spectrum disorder: Effective helping responses from social workers. International Social Work, 63(4), 496-509. https://doi.org/10.1177/0020872818804032

Gilbert, D. J., Mukherjee, R. A. S., Kassam, N., & Cook, P. A. (2021). Exploring the experiences of social workers in working with children suspected to have fetal alcohol spectrum disorders. Adoption and Fostering, 45(2), 155-172. https://doi.org/10.1177/03085759211011735

Hall, T., Jackson, P. D., & Sher, J. (2023). INSIGHT 68 · Social work and fetal alcohol spectrum disorders (FASD) (Insights: A series of evidence summaries, Institute for Research and Innovation in Social Services, Edinburgh. https://www.iriss.org.uk/resources/insights/social-work-and-fetal-alcohol-spectrum-disorders-fasd

Hewlett, N., Hayes, L., Williams, R., Hamilton, S., Holland, L., Gall, A., Doyle, M., Goldsbury, S., Boaden, N., & Reid, N. (2023). Development of an Australian FASD Indigenous Framework: Aboriginal Healing-Informed and Strengths-Based Ways of Knowing, Being and Doing. International Journal of Environmental Research and Public Health, 20(6), 1-25. https://doi.org/10.3390/ijerph20065215

McLean, S. (2022). Fetal Alcohol Spectrum Disorder (FASD): An update on policy and practice in Australia (9781760162092). https://aifs.gov.au/resources/policy-and-practice-papers/fetal-alcohol-spectrum-disorder-fasd-update-policy-and

Oatley, V., & Gibbs, A. (2020). Improving treatment and outcomes for young people with fetal alcohol spectrum disorder in the youth justice system: A social work led response and practice framework. Aotearoa New Zealand Social Work, 32(2), 5-16. https://doi.org/10.11157/anzswj-vol32iss2id737

Petrenko, C. L. M. (2015). Positive Behavioral Interventions and Family Support for Fetal Alcohol Spectrum Disorders. Curr Dev Disord Rep, 2(3), 199-209. https://doi.org/10.1007/s40474-015-0052-8

Reid, N., Crawford, A., Petrenko, C., Kable, J., & Olson, H. C. (2022). A Family-Directed Approach for Supporting Individuals with Fetal Alcohol Spectrum Disorders. Current Developmental Disorders Reports, 9(1), 9-18. https://doi.org/10.1007/s40474-021-00241-1

Streissguth, A. N. N. P., Bookstein, F. L., Barr, H. M., Sampson, P. D., O’Malley, K., Young, J. K., & Ed, M. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of developmental and behavioral pediatrics: JDBP, 25(4), 228-238. https://pubmed.ncbi.nlm.nih.gov/15308923/

Producers: Kurt Lewis, Louise Gray and Julie Flanagan

Narrator: Frances Price

Interviewer: Kurt Lewis

Interviewees: Prue Walker and Dr Kerryn Bagley

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.

Biography

Prue Walker

Prue is a social worker who specialises in Fetal Alcohol Spectrum Disorder. Her background is in child protection, and she has worked as a manager and practice leader in Victoria and Northern Territory and has also managed out-of-home care services in Victoria including Adoption/Permanent Care and a therapeutic contact centre. In 2009, Prue undertook a Churchill Fellowship investigating models of care for children with FASD in the US and Canada. She currently works at the Victorian Fetal Alcohol Service (VicFAS) diagnostic clinic at Monash Children’s Hospital and is supporting the CETC and the Australian Childhood Foundation to develop an integrated FASD-trauma practice framework. Prue also works independently as a Fetal Alcohol Spectrum Disorder Consultant.

Dr Kerryn Bagley

Dr Kerryn Bagley is a lecturer in social work at La Trobe University and a researcher at the La Trobe Living with Disability Research Centre. With over 15 years of experience in FASD clinical practice and research, Dr Bagley has focused on developing a better understanding of the needs of individuals living with FASD and how health and social service professionals can best support them. Dr Bagley has a strong commitment to promoting awareness of FASD in the profession of social work, including integrating knowledge of FASD into university social work programs.

In 2015 Dr Bagley’s dedication to improving services for people with FASD was recognised with a Creswick Fellowship award which allowed her to explore best practice approaches to supporting people with FASD and undertake professional development in the USA and Canada with organisations specialising in FASD diagnosis and intervention training, including the Families Moving Forward Training Program at the Seattle Children’s Research Institute.

In addition to her research and clinical work, Dr Bagley has led the development of networks to enhance capacity for FASD support. She was the inaugural co-chair of the Australian and New Zealand FASD Clinical Network and the founding chair of the Victorian FASD Special Interest Group, which brings together researchers, health professionals, and people with lived experience of FASD. Dr Bagley’s contributions to this field have been further recognised with her receipt of the 2020 Australian FASD Centre for Research Excellence Mid-Career Research Award. She is also a member of the Federal Government’s National FASD Advisory Group.

Episode 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):

Welcome listeners – at the outset of today’s episode, on behalf of NOFASD Australia, I’d like to do an Acknowledgement to Country.

“NOFASD acknowledges and pays respect to the past, present and future Traditional Custodians and Elders of this nation and the continuation of cultural, spiritual and educational practices of Aboriginal and Torres Strait Islander peoples.”

The NOFASD team often hears from parents and carers who are at the beginning of their journey to find out if their child has FASD – or alternately have just received confirmation of a FASD diagnosis and are now wondering about the best way to proceed in order to achieve the best supports and outcomes for their child.

We often hear how confusing – and sometimes confronting – caregivers find it when they are liaising with a wide variety of medical and allied health professionals. And, of course, many people have not had any previous reasons to consult with a speech therapist, psychologist, occupational therapist, or social worker.

In today’s episode we’re focusing on the role of the social worker in assisting families where FASD is an issue – and our interviewees will also explain how they can assist families in navigating the services and professionals that will now become an essential part of the family’s life.

I know that Kurt Lewis, the host of our podcast is very excited that we’ve been able to secure two highly esteemed social workers for today’s episode, so it is my pleasure now to hand over to Kurt to make these introductions.

Kurt Lewis (02:56):

Welcome. Welcome ladies and gentlemen, this brand-new episode of Pregnancy, Alcohol, and FASD: the Surprising Reality. My name is Kurt Lewis, your friendly neighborhood podcaster. I’m chatting about a very interesting topic today. I’m chatting about FASD and social workers. FASD and social workers have an interwoven relationship as these professionals have the ability to play a pivotal role in supporting individuals and families affected by this invisible disability. To chat about this topic, I have assembled a pair of awesome experts. One is a clinical social worker that specialises in FASD, Lecturer in Social Work and Rural Health at Latrobe University, and a researcher. The other is a social worker with many years of experience in child protection, out-of-home care, and now works as a FASD consultant that specialises in case planning and risk assessment for children and young people with FASD, particularly in the out-of-home care system. It is my honour and privilege to introduce Dr. Kerryn Bagley and Prue Walker. How are you both?

Dr Kerryn Bagley (04:10):

Hi, I’m Kerryn. I’m great, Kurt. Thank you so much for having me here. This is fantastic.

Prue Walker (04:16):

Hi, I’m Prue. Thanks, Kurt. That was a lovely introduction and I’m really happy to be here today and happy to be chatting with Kerryn because we talk social work and FASD a lot and it’s great to have this opportunity. So, thank you.

Kurt Lewis (04:28):

Well cracking on with it. In your own words, what is social work? How do you define it? What drew you both to this profession? Who wants to take that question first?

Prue Walker (04:38):

Well, social work, I mean, Kerryn will be able to talk as a lecturer. This is her bread and butter. But I guess for me, social work is really about how do we support people and families to live their best possible lives, but also looking at how the systems and environments around them have an impact. So, it’s a bit different to psychology that’s really about individuals and families, and sociology where we are looking at structures, it sort of brings those two components together so we’re not just looking at a person and their problems, we are looking at how that came about. So social work has a real focus on social structures and organisations and it lends itself to a sort of understanding of power and society. And I think social work for me is all about challenging injustice and inequality and working in the systems to do that and sometimes outside the systems as well.

Dr Kerryn Bagley (05:30):

Yeah, so my kind of personal journey around how I came to social work will give you an idea a little bit about social work. So, I grew up in a very poor family, in a very poor suburb in Melbourne where people in my family and people around me faced a lot of social and economic disadvantage and trauma, and probably not unlike a lot of my peers. I found myself in a little bit of trouble around year eight when I was about 13 and 14. And as a result I had quite a lot of interactions with youth workers and with social workers, and to be honest, there were some really good social workers, but I thought I could do this job and actually maybe I could do a little bit of a better job. But I think a lot of that’s around that idea of you can be what you can see.

(06:17):

And so, I had a lot of engagement with social workers, but I also grew up with lesbian parents and back then rainbow families were not really visible and not very accepted. It was a bit different than what it is today. And so, we faced quite a bit of discrimination and homophobia, and at the same time I was part of this really wonderful and supportive gay and lesbian community, which included a lot of community activists who were really for fighting for LGBTIQA+ rights, and a lot of them were social workers. So, I developed an understanding that social workers were both about supporting individuals who were going through hard times and also about trying to change systems and societal attitudes so that we can all live in a more inclusive society. And I think that, that social justice systemic change lens is what really has drawn me to social work. And you’ll hear a lot about that in my practice with FASD.

Prue Walker (07:18):

And I suppose my pathway into social work was a bit different from Kerryn. I grew up in a middle-class family and went to private schools and Catholic schools and did really absorb this message of social justice and the need to sort of help, for want of a better word, people or get involved where things were unfair, unjust – and Catholic social justice movement was quite influential back then. So, I was involved in uni at student politics, but I was studying an Arts degree, so I did English and history and things like that. When I finished, I started working in the homelessness service system, which back then you didn’t need any qualifications to work in. And that was both great and terrible because we worked from very much a rights perspective, but we didn’t have a lot of theoretical frameworks for dealing with some of the real issues people were struggling with. I think after a period of time working there, I thought, I need a theoretical basis. I really need something like social work because I don’t know how to approach some of these situations, and I don’t know what makes a difference. And I think that’s what social work brings is that evidence base of what actually works.

Kurt Lewis (08:25):

Wow, you have both such amazing perspectives on social work. If you don’t mind me saying you guys really bring the best sides of it kind of forward, and thank you for sharing your stories with us today. My next question, did you learn about FASD in your university studies for your Social Work degree? I know Prue, you mentioned you did an Arts degree to start off with, did you hear about it then, or if not, when did you first become aware of FASD and what provoked your interest in having a focus in this work? Who wants to take that question first?

Prue Walker (09:01):

Well, Kurt, not a thing was mentioned in my university degree in social work. And even though I’m a bit older than Kerryn, I think we studied around the same time, so late nineties, early two thousands. So, nothing was really mentioned as nothing was really mentioned about children with disability or neurodivergence, which we didn’t even use that word back then, but we really didn’t learn much in that space at all. So, it wasn’t until I was working in child protection in Victoria, and I remember working with a family and I was told, oh, these children have fetal alcohol syndrome. I didn’t know what that was. I think we barely had Google back then. And I met these kids and I talked to these kids, and I couldn’t see anything. I had no idea what the impact of that was. A few years later, I went up to work in Alice Springs in child protection and out-of-home care and there are a lot of children up there with a diagnosis and I’m looking online for resources and the stuff from Canada and America and the United Kingdom, and there was a little bit coming out of Tasmania.

(10:01):

Vicki Russell had worked on a guide and there was a few resources around, but there really wasn’t anything that helped me. So, I ended up putting in to do a Churchill Fellowship, which I was lucky to do. And I went over to the States and Canada and learned a lot there. And I think what I came back with was just realising this is not a problem, that’s just about this community. FASD is everywhere. It’s incredibly prevalent and we have no idea about it. So even thinking back to my own upbringing, alcohol wasn’t a known risk back when I was conceived or born. And so, I am thinking about my peers and people that I know that are probably affected by FASD and really have no idea. So that really sparked my interest.

Dr Kerryn Bagley (10:44):

So, Prue and I, we have a very similar experience and I think a lot of professionals do. So no, there certainly was nothing about FASD in our degree, or as Prue said, disability or neurodivergence really at all. I’m a Lecturer in Social Work now, and it’s certainly an area that I kind of focus on in a lot of my work, but I know systemically I would say it’s still a really big gap in the social work profession, like a lot of professions. I think a lot of psychologists and OTs would probably say the same thing. So, my experience was very similar to Prue’s and a lot of our colleagues working in the FASD space. I was living in New Zealand, I was working in child and adolescent mental health, and I had a young client who had a lot of challenges and I have a background in social work and working with traumatic brain injury before I worked in the FASD space.

(11:38):

And I actually wondered whether this child had had a brain injury, the child was in care, but the birth mum came and met with me to go through a bit of a detailed history and at that point she told me that she thought that her child had fetal alcohol spectrum disorder, and that’s the first time I had ever heard of FASD. And I said, what’s that? And she explained to me that she was very young when she was pregnant and she was drinking, had daily drinking, she was very dependent on alcohol. She didn’t know that she was pregnant for a long time. And she explained a little bit about FASD to me because she’d watched a documentary from America about FASD. She said to me that she’d already raised it with a lot of professionals, but it never seemed to go anywhere. So, I spoke to some of my paediatric colleagues, we worked very closely with paediatricians and psychiatrists, and either they didn’t know much about it, or they were reluctant to consider it because either they thought it was too stigmatising to diagnose, or they thought, well, nothing can be done about it anyway.

(12:48):

It’s brain dysfunction, it’s permanent. I started to get a whole bunch of referrals from other birth mums who had heard that I was working with this mum and I was looking into FASD and they wanted to talk to me about their own kids. And I think so with that kind of social justice lens, and a little bit of outrage that these mums and kids were not getting listened to, and they weren’t getting the supports that they needed, I set out to do a PhD, which I completed to kind of better understand what the gaps were and what we could do to address them.

Kurt Lewis (13:23):

Well, that’s amazing work right there. I mean, it’s so important for a lot of families out there who aren’t really getting the support they really need for FASD, not just the child or young person that may have FASD, but the family as well. They need support as well to help raise this child. Glad you guys are there helping with filling those gaps. For those who are unaware, what role do social workers play in assisting with a condition like FASD? I know you’ve touched on that, Kerryn. Could you guys expand on that by any chance?

Dr Kerryn Bagley (13:56):

Yeah, sure. So social workers work to support individuals and families. In most systems, you’re likely to come across someone with FASD in most of the systems that we work with, and that’s people who are diagnosed and who are undiagnosed. So, people with FASD and neurodivergent that is, they have brain differences that are brains that are different to the typically developing population, but they live in a society that’s designed around and caters for neurotypical people. So, they need support in those environments and ideally, many of them need the environments to change, or to be adapted in order to meet their needs. But we know that a lot of professionals, a lot of people don’t understand FASD. So, people with FASD often don’t get that support and they don’t get those adaptions, and when they don’t get the support that they need, they often face poor health and social outcomes.

(14:52):

So, for FASD, some of those outcomes might include poor mental health, poor general health, difficulties with education, difficulties maintaining employment, challenges with maintaining housing, engagement with the justice system, all of these poor outcomes that we see when people aren’t supported. And social workers work in all of those systems. They work individually with people to support them using lots of different types of approaches depending on the system that they work in, and also their training. But social workers also have a strong focus on identifying barriers and gaps in those systems that make it hard for people with FASD. So, in my experience working in the FASD space as a social worker, I’ve worked together with people who have just been diagnosed with FASD and families, providing them with support around parenting, helping them to navigate health and social systems and supporting them with approaches that are FASD informed, that have a neuro lens.

(15:59):

But a huge part of my work has actually been around capacity building. So that’s bringing professionals together to discuss how can we develop services and supports for people with FASD. So, for example, when I moved back to Australia 12 years ago, I met a paediatrician called Dr Doug Shelton who was developing his interest in FASD and we worked together to develop a program of training that would enable him to establish a FASD diagnostic clinic in Queensland. When I moved to Victoria about how many years ago now Prue? I’m just trying to think. Maybe like seven years ago.

Prue Walker (16:33):

About that ago, yeah.

Dr Kerryn Bagley (16:34):

I realised there were no services for FASD people here in Victoria. So, I started the Victorian special interest group with people like Prue and others, and we brought together paediatricians and social workers and speechies and psychologists and teachers and parents and people with FASD to try and address those gaps to build capacity in Victoria. And we’ve run training and information sessions and we now have FASD diagnostic services in Victoria, of which Prue is a part of.

Prue Walker (17:15):

Similarly, to Kerryn, I was approached by Dr Katrina Harris from Monash when she obtained funding to set up FASD services at Monash Children’s Hospital. So, I’ve been involved there since 2019 when the service started. And so, that’s been an incredible experience and a huge learning for me, just seeing the number of families coming through the clinic, the range of presentations among the children and the really different needs that families have. So like Kerryn said, FASD social work really covers the whole lifespan because individuals with FASD are affected in so many different ways and they’re part of all these service systems. But I think in clinical setting, there’s a really important role for social work throughout that FASD diagnostic clinic process. Everything from how the families engage, what does FASD mean to them? I’m really focused on things like if a child’s brought along by their birth dad, for example, well, is the birth mum aware of what’s happening?

(18:13):

What’s her view of it? Because if you’ve got a birth mum who’s not on board, that child gets a diagnosis and their mum’s not happy about it, immediately you’ve got a problem there in that family. So, it’s not to say that diagnosis isn’t important for that child, but how you do it, how you bring parents along and what decisions you make about timing and language and all of those things. I think social work has a huge role in, and even disability means different things to different people in different cultures. What we understand about disability, we are giving labels and language that people have different understandings of, different meanings of, and so we have to really tune into that. Also, social work assessment happens in a very medical setting. So, I think there’s a really important role just helping families navigate that because you know medical systems obviously prioritise things like diagnosis and testing, and really we are looking at how does a family make meaning of this and what are the family needs and the priorities.

(19:12):

So, advocating for parents and carers in the system for example, is very important. Things like talking to kids about their own diagnosis, helping them make sense of it. But again, having worked in child protection for a long time, I look back on that time and I think about all the parents we worked with who probably had FASD and some of them went on to have children who probably had FASD, but we are talking about all these parents and we would be saying, you need to show your commitment to achieving the goals you need to turn up to contact at 10 o’clock. And they would ring you at 10 o’clock and say, I’m on the bus. And you’re like, well, you’re going to be too late. And contact would be canceled. They would be upset, the child would be upset. And now I look back on that and I think those parents had a planning disorder.

(19:53):

They didn’t know what time to get up, they didn’t know what time to get ready. They didn’t know what time to leave the house to be somewhere at 10 o’clock. They knew they needed to be somewhere at 10 o’clock. So, they would ring you at 10 o’clock and say, I’m on my way. And we would say, your child can’t wait that long. So now I think if I had recognised that those parents were struggling with cognitive impairments, I would be doing things like setting alarms for nine o’clock, saying time to leave the house, for eight o’clock, saying time to get ready for 8 45, saying “You’ve got 15 minutes to get out of the house if you’re going to be on time for your contact visit”. And with that sort of support, they might’ve succeeded with that, and you can apply that to any setting – corrections, residential rehab, people with FASD might break the rules of a service agreement, not understand why they can’t access a service anymore because the assumptions that that service is built on is a neurotypical brain functioning that you can understand consequences and you can follow rules and you can generalise from one setting to another.

Kurt Lewis (20:56):

You’re amazing how FASD affects all different areas of society and when people might not realise it’s just the simplest kind of things. And you just mentioned planning and stuff like that, Prue, and that’s a very important part of modern society and not being able to plan. It’s very much, it’s a disability in itself, being able to plan out your day and not being able to be there for the official appointments that you need to be there for.

Prue Walker (21:21):

Exactly. And it means that people don’t achieve the goals that social workers and other professionals set for them. You need to do your treatment, you need to complete the program, and that’s just not possible. And the other big issue is the ability to not act on impulse. And I just look at how many people in the justice system, they might know what they’ve done is not the right thing. They’ve talked about how they could not do it, but in the moment the impulse couldn’t be resisted. And we think about that all about individual control of behavior, but when you look at the neurobiology underneath it, the ability to stop an action just isn’t there. So, what do we as a society do about that? It’s a big question.

Kurt Lewis (22:01):

Yeah, definitely. And it’s not about won’t – it’s about can’t really, at the end of the day.

Prue Walker (22:05):

Exactly. We come back to that all the time. Kurt,

Kurt Lewis (22:08):

My next question is are there common misconceptions or stereotypes about FASD that social workers should be aware of and how can they address them in their practice? I mean, that kind of goes back to what you were saying in terms of how do social workers, how do we work with people with FASD? But what are the misconceptions and stereotypes that social workers should be aware of?

Prue Walker (22:29):

Well, great question, Kurt. I think there are some common myths that I think anyone who reads a bit in this area should be aware of, that are not true, that FASD only affects children of mums who drank heavily, for example. That it only affects certain communities. I think everyone working in this area with an interest in anything to do with working with humans should be aware that neither of those things are true. But I think there’s more subtle misconceptions as well, such as the idea that it’s too stigmatising to ask women about their alcohol in pregnancy or that they will feel ashamed if we’re asked about it, or that FASD is, a negative label and it’s undesirable and it should be avoided or even just that, well, there’s nothing you can do about it. I think all of those are misconceptions. Women tell us they want to know about alcohol, they want to know about alcohol in pregnancy, they want to know about the risks of alcohol and if their child’s affected by prenatal alcohol, they very often want to know about it as well.

(23:26):

I think sometimes we tiptoe around that because of our own views about alcohol in pregnancy, which Kerryn can talk more about because this is really her area of research. It’s a really important area. But I think some of the things that I hear the most when people are concerned that their child’s got FASD is they go online and they go, oh, my child is going to have mental health issues and they’re going to go to jail. And I think it’s really important for social workers to unpack that and unpack that research. So, just looking at the issue about mental health, you read these statistics, 90 something percent of people with FASD have mental health issues. But when you go back to the original study, which was from 1994, Ann Streissguth’s study of long-term outcomes, she found 94% of people had a mental health issue, which was defined as someone who had ever gone to a psychologist or a counselor for a mental health problem or had a diagnosis.

(24:18):

So, you can see why someone with behavioural issues would end up going to a psychologist at some point, and the most common mental health issue they identified was actually ADHD, which we also know is one of the criteria for FASD. So, in a sense, we are saying people with ADHD meet criteria for FASD and also have a mental health issue. It’s the same thing. It doesn’t mean they go on to develop a mental illness. So, I think we need to unpack that and say, okay, well, that original study looked at other forms of mental health issue. The next most common one was depression, which was 50% of that study had depression. So, it’s a lot different to 96% having a mental illness. When you look at that cohort in that study, some of them were born in the forties or the fifties or the sixties.

(25:03):

These were people who grew up at a time where they didn’t have anything like the support that they have now. So, it’s a hundred percent not true to say that if you have FASD, you will develop a mental health issue. You’re not at 50% risk of depression. That was that cohort, in that study. I think more recent studies show much lower rates of particular conditions, but that’s not to say that depression and anxiety are not very real features of FASD. And we know that anxiety and depression are really impacted when the person’s environment doesn’t support them, doesn’t accept, or accommodate their disability. So, I think social workers can help families sort of dispel some of those myths. And similarly, the same argument about people who ended up in the justice system. You can’t use those studies to say that someone born in 2000 or 2010 is going to end up in the justice system. Yes, there’s a higher risk, and we know what some of the risk factors are, and what supports that person, what increases risk for that person. But we need to really push back and say, this is not a determination. This is not saying what will happen to your child.

Dr Kerryn Bagley (26:13):

I think it was Ira Chasnoff that said once in a book or in one of his talks, “risk doesn’t equal destiny”. And I think one of the really important things to remember in FASD work is that it’s not all oriented to how we support the person or how we get the person up to speed with our normative expectations. Some of it is around how we can actually change our own expectations and change our own ways of working so that we can best support people with FASD. And I’m just thinking about some of those statistics around mental health Prue. It’s not surprising that if people don’t experience support and don’t experience understanding and face frustrations every day and feel like they’re not understood and get in trouble because of that all the time, that they might start to feel depressed and anxious.

Prue Walker (27:11):

Exactly right.

Dr Kerryn Bagley (27:12):

Yeah. That doesn’t mean that we can’t actually change that with appropriate supports. So I think one of the real valuable things from a social work perspective is thinking about FASD really holistically and not just focusing on the individual, but actually looking at it internally to ourselves as professionals and as parents and carers and all the people as teachers around that child or that adult and thinking, you know how can I adapt things that I do, or how can I adapt the environment so that we make things easier for people with FASD and they’re understood. I think that…

Prue Walker (27:53):

I couldn’t agree more. And I think we’ve learned from what the work that’s been done in the autism space about the effort that people with autism have masking behaviour, and coping with social expectations, and the impact that has on people and just not the expectations of functioning in this neurotypical world for people with autism spectrum disorder. And that community now has much greater voice in saying, we are not going to adapt to you, you need to let us be who we are.

Dr Kerryn Bagley (28:25):

Yeah, absolutely. I think the other thing that I found, and I found this through some of my research, I do research around FASD, for the Living with Disability Center at Latrobe. And one of the things I found through one of my research, is around whose responsibility is it to work with people with FASD? And what we found was that professionals assumed that another professional group was working with that person with FASD. They might’ve identified that they thought they had somebody who might’ve been prenatal exposed to alcohol and may have FASD, but really, it’s not really their role to kind of investigate that further or go somewhere. And what we found is that social workers may have thought OTs really deal with FASD and OTs maybe thought that you know this is a paediatric issue, and the paediatricians might’ve thought, well, this is really mental health – and so, we’re talking about psychiatrists. And the result of that for families is that they’re passed along from service, to service, to service, and not getting their needs addressed anywhere. So, I think that one of these misconceptions is that somebody else works with this client group when in reality we all work with FASD, whether we know it or not, and we all need to be proactive in understanding FASD and supporting people with a FASD lens.

Prue Walker (29:48):

I totally agree. When I did that Churchill Fellowship back in 2009, and I came back all excited in the NT about FASD and I went and presented to, you know child protection, was then under Department of Health, and I met with senior people back then, and the view was, well, it’s too late to do anything about it. It’s a small number of people. I remember someone saying, oh, we’re talking about five kids a year with FASD in the NT. I’m thinking, okay, and it’s a preventative issue and it’s a health issue. It’s not a child protection issue. It’s not a youth justice issue. And I look at the changes now in the Northern Territory, and I think that’s not the view of people on the ground.

Kurt Lewis (30:29):

I couldn’t agree with you, you both more, and I love that quote, by the way, Kerryn, “risk does not equal destiny”. That’s magnificent by the way,

Dr Kerryn Bagley (30:37):

Ira Chasnoff was the person who kind of coined that in my understanding. But yeah, absolutely. It’s just – it really sums it up, doesn’t it?

Kurt Lewis (30:45):

It does, magnificently. My next question is – kind of goes into that what you were saying before in terms of people getting passed around for service to service, I was just wondering how can social workers effectively collaborate with other professionals such as you know healthcare providers, educators, therapists, Ots, to kind of provide the comprehensive service to individuals with FASD? I imagine probably more of a holistic approach would be better.

Prue Walker (31:13):

Look, I think you’re right, Kurt, because I think what social work brings is the individual and the family, but also the environment, the systems and the supports around the family. We don’t look at someone in isolation. Children with FASD for example, can really benefit from allied health therapies and from psychological and behavioural supports, but they often don’t benefit as much as children who have different forms of developmental delays. So, as a social worker, I would be encouraging those therapists to read articles about what is effective practice for FASD or how to modify their practice. And I think a lot of clinicians in Australia perhaps don’t get access to that specific training. So, I guess for me as a social worker, as a FASD specialist, I kind of have all those resources, but I think if you didn’t have all that information yourself, it would be about helping those professionals, encouraging them to really find the evidence for different approaches, because there are a lot of approaches that are not particularly effective in getting change.

(32:14):

And I think as a social worker too, focusing on what the family and the child’s real priorities are. For example, you could be working, say I was involved with a family where the OT was working on the child’s play skills, for example, and they’re like, they really need to develop more imaginative play, so we are going to work on imaginative play. And I was there as a social worker going, I think this child really needs to learn to play on their own for longer to give their parent a break to support their parents’ mental health and to stop their placement breaking down. And so, I sort of advocated to shift the goals because imaginative play might take a lot more parental input, and I thought if this child could at least spend 20 minutes at a time doing an activity they’re already good at, rather than something new and challenging, that sort of goal to me would be more supportive for the family.

(33:06):

And often we say, I work with lots of families who say things like, oh, they’ve been going to speech therapy for a long time. I’m not really, you know they give us feedback, but I’m not really sure. So, my view in social work in that care team setting is to be saying, it really needs to be a tight fit between what are the family goals, what are the child goals and what’s being worked on. So, if the speech therapist is working in a room over here, we need to see how that happens at home. And I think speech therapists are really good at doing that work, but it might be about let’s focus on a problem of social communication in the daily routine that is giving the parents and carers a lot of grief. Let’s really target that behaviour and be able to have the family come back and go, I tried that didn’t work.

(33:48):

Really addressing problems, cause I think what happens is you get a diagnosis, you get all this input, you wait for services, you get services. People do bits and pieces, but it’s like, social workers can help people focus and go, what is the really core issue that is going to be the biggest risk for this child? Because although they might need speech therapy, OT, motor skills, whatever the biggest risk might be, their placement breaking down, which is going to be a disaster for many children because it leads to so much more instability. And we see a lot of placement breakdown with this group of children and young people.

Dr Kerryn Bagley (34:20):

And I think integrative practice is really important for people with FASD. We know that people with FASD thrive when there’s consistency, when there’s routines. We know that parents often get a lot of contradicting information around what is best for their child. And a lot of that is not FASD informed unfortunately. So, I think it’s really important that professionals have time to be able to speak to each other and talk about how are we going to work with this child and with this family using our different professional lenses? So, things like if you have an NDIS plan, making sure that you have funds in there that allow for professionals to have meetings together, to discuss what kind of interventions and support strategies are going to be put in place so that everybody is on the same page. That’s actually really, really important, both for the individual with FASD and for the family member and also for the professionals involved. So, everybody knows where we are at, with this person and family.

Kurt Lewis (35:31):

That is so important. Just listening to you speak about that, you can see that professionals are so much more effective if they’re able to collaborate and work on the family’s, the child’s best interest here, especially when it’s got to do with something like FASD.

Prue Walker (35:46):

We look at research, Kurt about evidence in this area, and we often find a lack of evidence, or there’s evidence for a program that they tested you know in America or Canada that we don’t actually run here. So, we look for evidence-based practice. It’s really hard to find. But I think among professionals, there is this knowledge. And I remember saying to the OT at work, at the FASD clinic, what’s the benefit of you know one-on-one therapy with this child versus coaching with the parents? And she said, oh, I could do a hundred sessions with the child, but I’ll do more with three or four with the parents. So that to me is how do we translate that practice knowledge into evidence of practice? Do you know what I mean? Because parent coaching has been found to be a lot more effective than some interventions, which is not to say kids don’t need those interventions as well. We need to be doing both things.

Dr Kerryn Bagley (36:34):

FASD is complex, and I think that there’s practice-based evidence. Obviously, I do research – there’s research-based evidence, but what we need is evidence-informed care, which means we are drawing on research evidence, we are drawing on practice evidence. We are taking into account an individual’s circumstance. We are taking into account a family’s circumstance. We might be taking into account where they live, if I live in a rural regional area and what’s available. And we are drawing all of that together so that we can meet the needs of the family and support those around them.

Prue Walker (37:14):

And I think Kerryn, that’s where for me, NOFASD has been really important because hearing the voices of parents and carers of what works and what doesn’t work, cause that’s to me the other element of evidence-informed practice is family preference and what they say works. So, there might not be evidence for something, but this family’s saying, but it’s working here. That doesn’t mean it’s not working. That doesn’t mean there’s not evidence for this child. And I think the FASD sectors being very much influenced by parents and carers saying, we need more. You are not listening. You don’t understand our kid. We don’t have the right strategies. And that’s really where a lot of the FASD groups in here, Canada, the States, UK, have really grown out of,  parent carer movements. And I think that’s incredibly powerful. And I think that you can get a sort of bias in that sort of system because the people who are often the most vocal are the well-resourced families, the ones who are perhaps trained as foster carers or trained as adoptive parents.

(38:09):

So, they’ve been used to working with professionals. And I think what we don’t hear as much is from birth families raising their kids, families living with adversity, Aboriginal and Torres Strait Islander families, raising their own kids with FASD and doing it well often, and hearing about what works for them. So, I think, again, as a social worker, I’m always thinking, how do we make sure that the way we talk about FASD is inclusive and not just through one lens? And I think it’s inevitable that it developed the way that it did, but now we have a lot more resources around, a lot more knowledge around, I think we need to be going, okay, let’s make sure this is actually inclusive.

Kurt Lewis (38:48):

Couldn’t agree more. And especially since people with FASD can have very diverse backgrounds, and you knonw, you get two people with FASD together, they never have the say exact same symptoms or the same kind of problems. This kind of conversation brings me to the next question. We’ve discussed a number of challenges or barriers, people with FASD and, or their families. What are some of the most systemic challenges and barriers that individuals with FASD often face when accessing social services? How can social workers advocate for systemic change to address these issues?

Prue Walker (39:22):

Well, if I can kick off, I guess there’s a couple of key things. One of the biggest challenges is FASD not being identified early or confused with other things. And that often comes down to lack of awareness and education among professionals. Then you’ve got the challenge that therapists, clinicians, look to their existing knowledge base for practice models. But as we’ve said, there’s often not enough evidence that those practices will be also effective for a kid with FASD. So that’s a big area. But I think two of the big sort of policy issues for me that I think have really made a difference – fetal alcohol spectrum disorder being recognised in Australia. So not just fetal alcohol syndrome, which is the old terminology and left out a lot of people, that change has really enabled their disability recognised and to get access to services and then FASD being included in the NDIS. So that process has involved a lot of advocacy from families, professionals, peak bodies, clinicians to really inform that debate. And I think social workers have a really big role in that because we can help families advocate for themselves. We can raise awareness, but there’s not enough social workers, I think, in our field who know enough about FASD. So that’s I think, an area that we need to educate our profession more so that we have that expertise and then we can contribute to these ongoing policy debates and strategies.

Dr Kerryn Bagley (40:47):

NDIS has actually been a very positive thing for many people with FASD. I’ve spoken to quite a few family members and individuals with FASD, and that’s not to say that the system doesn’t have barriers. There are a lot of challenges within the NDIS system, and I also recognise that people face frustration. But for many people with FASD, it was the first time that they actually qualified for services because prior to the NDIS, a lot of people with FASD didn’t meet criteria for disability services because they may not have met criteria for intellectual disability, for example, that has a cutoff IQ level that they might not have met, and they were typically passed around lots of different services and service systems. Going back to what we were saying before about everybody thinking FASD was really the responsibility of somebody else or another system.

(41:42):

In many ways, the NDIS has been quite useful. I suppose the difficulty is actually finding practitioners that are FASD informed and the NDIS in theory was developed with the idea around self-determination and people being able to identify their own needs. But in practice, a lot of the focus is around therapy type interventions. It’s kind of like a social model of disability theoretical concept, but in practice, it really kind of draws on that medical model of disability in many ways. And so, if we can actually continue to educate clinicians and social workers around FASD, social workers can have a real role in reframing some of that kind of very narrow medical intervention type therapy needs, to include broader, important things like social supports and how we do environmental accommodations to support the person in that NDIS system.

(42:46):

I think the other thing that we really need to talk about in the FASD space is that in the last 10 years or so in Australia, we have made really significant progress around FASD. It doesn’t mean we have it all covered. It certainly doesn’t mean there isn’t a lot of work to do, there certainly is. But we have made huge, huge gains. We have a FASD diagnostic code, we have increasing FASD diagnostic services. We have more and more people doing FASD training, but almost all of that work has had a focus on children – and often young children. And there is a huge amount of work to be done in how we best recognise and support adults and also older adolescents with FASD. How do we identify adults with FASD? What are their needs? How do we support adults with FASD, who are parents and possibly parents of kids sometimes with FASD? So, we’ve got a huge gap and a really long way to go there. And I think that social work can play a really big role in that space along with our allied health professionals. And I know that parents and carers who you know have been real drivers for change in Australia, are advocating for support in this space too. And adults with FASD, we have a couple of fantastic adults with FASD in Australia who are doing incredible advocacy work around FASD, but systemically adults are not getting the support that they need.

Kurt Lewis (44:18):

It is a huge gap in adults with FASD, don’t have the services, supports or even the same kind of diagnostic facilities, which is kind of ridiculous given numbers of children getting diagnosed, but not the same for adults. That’s kind of a massive gap there and it’s just how do we fix that? How do we fix that? Maybe that’s probably a question for another podcast. I think

Prue Walker (44:40):

That’d be a great question for another podcast, Kurt.

Kurt Lewis (44:45):

A whole different – yeah, it’s because it’s such an important area that we do need as a country, need to address and fix.

Dr Kerryn Bagley (44:51):

Certainly, something Kirk that I’m starting to look at in my research because we have all of these young people as well who we’ve been diagnosing now for 10 years plus, and they’re going to be adults soon. And how are we going to support them? We know that FASD is a lifelong condition, and we need to be supporting people from birth, right, until adulthood and into aging

Kurt Lewis (45:15):

Because people with FASD, if they have the right supports, will succeed. And it’s just frustration for us all in terms of how do we help the adults? I just want to take it back to something that Prue said earlier in terms of, we both mentioned at some point, in terms of getting more social workers who are FASD informed essentially. If a social worker is not FASD informed, what ongoing professional development opportunities or resources are available for social workers to enhance their knowledge and skills in supporting individuals with FASD?

Prue Walker (45:50):

Obviously, Kurt, the NOFASD website has got a huge amount of information and I really encourage people to read the resources. but also watch the webinars because I think it’s often in webinars that you hear really great presentations. The FASD Hub is another key source. So, when I’m sort of supporting people to learn more, I say, go to the FASD Hub, go to NOFASD, look at these videos, watch these webinars. And then I think the other part, which there’s many of these on both sites, but listening and watching stories of lived experience, because you can learn these facts over on a page, you can learn a checklist, but what that looks like is different for everyone, like you said. And, some of the challenges with FASD, we know as social workers are people often present and talk really well and it masks their underlying executive function difficulties.

(46:40):

So, we need to sort of get past that and recognise that how someone speaks doesn’t necessarily reflect how well they manage in daily life, and it’s by listening to their stories of their own experience that I think we really get that. Social workers also need to be reading research and publications. And I think there are a lot of social workers doing research in this area – it’s really increasing. Kerryn’s sort of done lots of work about how professionals understand FASD and how they can respond. And also you know, social workers are always doing critical reflection. What are our own personal experiences? How do they affect how we work. our own views and values? And I know that’s a big issue with people’s views and values about alcohol use. How comfortable are we to talk about this? And I often talk to social workers who say, oh, how do you raise alcohol with the parent?

(47:29):

I’m like, well, how do you talk about childhood sexual abuse with the family? How do you talk about family violence – and use those skills? It’s just another area. Those areas used to be stigmatised and now they’re not. And I think we learned from those areas because people used to feel ashamed about childhood sexual assault, and now people are able to say, I did nothing wrong. There is no stigma for me. And I think we need to do the same thing for FASD. FASD is a stigma we put onto people and we de-stigmatise it. That means talking about it and not talking about it with shame.

Dr Kerryn Bagley (48:03):

Absolutely. And I think there’s a lot of training out there, so there’s NOFASD, there’s the FASD Hub, a lot of people in the FASD space doing training. So, the chair of the Victorian special interest group, we run webinars and training almost every year for International FASD Awareness Day. I’d definitely encourage people to look up International FASD Awareness Day, which is on the ninth of,

Kurt Lewis (48:28):

We can put a link in this podcast if you’d like to share it with us. And then anyone listening can just go to the show notes.

Dr Kerryn Bagley (48:35):

So, we often run these things. We usually record them. Last year we had a fantastic session, which was an intro to FASD. It included Dr. Katrina Harris from Vic FAS, which is the Victorian Diagnostic Clinic. We had Prue talk about interventions and supports. We had Angelene Bruce talk about her lived experience, and that’s all available on the Living with Disability Center YouTube site. So, things like that are really, really helpful. But I’d also encourage people to go along to training. Prue. for example, runs a lot of training and workshops for social workers, for other professionals. She runs general sessions. She can run sessions tailored to different work environments. And I encourage people who have an interest in FASD, and hopefully everybody after listening to this will have an interest in FASD, to get along to one of those training sessions or the training sessions run by NOFASD, and learn more about FASD and have an opportunity to speak with people about your own work environment and how FASD fits within the work that you do.

Prue Walker (49:48):

Thanks for the plug, Kerryn. I always say go and watch all the free training first, watch this webinar and then come to training to fill your gaps, because NOFASD does great workshops. I always send people there first and I will give a call out to Vanessa Spiller, a psychologist in Queensland. I send people to do carers -.I say, go and do Vanessa’s training. Come back to her or me if you’ve got questions later. But use what’s out there. And Vanessa’s got great online modules that really work through all the bits of the brain, which I think is sensational.

Dr Kerryn Bagley (50:17):

And Vanessa’s got fantastic videos on YouTube and a book. Robyn Williams, who is in Perth, an Aboriginal woman who’s done a huge amount work around FASD in her communities, is also another person who does really fantastic workshops. So, we’ve got a lot of resources in Australia.

Prue Walker (50:36):

And one more, I’d also say Dr Sara McLean, who’s a psychologist, she’s done really great work on FASD and trauma. I think that’s a big overlap that we need to understand more about. But I saw that she’d recently done something for the AASW, which is great. So, it’s getting out there, it’s getting out there, Kurt,

Kurt Lewis (50:52):

I’m sure. All those amazing plugs right there. I’m going to put them all in the show notes, so no need to get onto the Google. You’ve got them all below for your viewing pleasure, including to Prue’s website where if you’re interested in getting some training from her, I’m sure you’d be able to look at her lovely website. I’d like to finish by thanking you both for coming on and spreading your knowledge here today. Been bowled over by the level of just knowledge I’ve just picked up by listening to you. I’m sure our listeners think the same. Thank you so much.

Prue Walker (51:23):

Thank you, Kurt. It’s been awesome.

Dr Kerryn Bagley (51:25):

Thanks, Kurt. It’s been fantastic. Thanks for having us on the show.

Frances Price (51:32):

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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