Text on screen reads:
This webinar is part of a series that brings experts with lived experience together in dialogue with those from research, healthcare and other professional backgrounds.
By sharing stories and insights, we aim to increase awareness and understanding of FASD and improve outcome for people living with FASD and their families.
To find out more, visit: www.FASDhub.org.au
Professor Elizabeth Elliott:
Welcome to the FASD Hub’s webinar on ‘Diversity in Fetal Alcohol Spectrum Disorder’.
Before we start, I'd like to acknowledge the traditional owners of the land on which I sit, the Gadigal people of the Eora Nation, and pay my respects to elders of this land I also acknowledge the traditional owners of the land on which all of you sit, and note that teaching and learning has occurred in Aboriginal communities throughout Australia for many thousands of years.
My name is Elizabeth Elliott. I'm a Professor of Pediatrics at the University of Sydney, and a clinician at the Children’s Hospital at Westmead where I lead the New South Wales FASD Assessment Service, and I’m chair of the Fetal Alcohol Spectrum Disorder Hub advisory group. The FASD Hub Australia has been funded by the Australian Department of Health since 2016. It aims to raise awareness about FASD and alcohol use in pregnancy, and to be a one-stop-shop for evidence-based resources. We connect clinicians with researchers and policymakers, and we connect them with individuals and families living with FASD. We run training and education, and we provide a repository for Australian research and policy. Our most popular pages are the Guide to the Diagnosis of FASD, the service directory, and our FASD fact sheets. So please visit us at www.fasdhub.org.au, and we will welcome your feedback.
Now, the purpose of today's event is to highlight the diversity in FASD. Every person living with FASD is unique and has individual strengths and needs. Every person living with FASD has different health problems, different challenges, different life circumstances, and different journeys towards diagnosis and throughout life.
I welcome and thank in advance our panellists who are our experts. Our facilitator is Kelly Skorka, an occupational therapist and PhD student. Our panellists include Vanessa Spiller and April Wilson who are carers for young people with FASD, and Vanessa is also a clinical neuropsychologist. And we also have with us Gilberto Spencer and Jessica Birch, who are young people who will provide their insights into negotiating life with FASD. And I also thank our producer, Tina Zhang.
Now, the webinar is as follows: Shortly, I will pass you over to the panellists to introduce themselves. Kelly will be asking them a range of questions, and then we will be open to a discussion with questions from you. So if any of you have any questions please put them in the Q and A, and we'll come back to that later. Now, just to let you know this webinar is being recorded so you will be able to watch it later. We'll send you the link and we'll also post it on the Hub. So now I'd like to hand over to Kelly to facilitate the discussion.
Kelly Skorka:
Thank you, Elizabeth. Hi, my name is Kelly Skorka, and I'm an occupational therapist and PhD candidate at the university of Queensland. Clinically, I have worked with children and adults with many different needs, though I'm primarily a pediatric occupational therapist, and I've worked in hospital, non-government and private practice settings. My current research is looking at interventions for children and adolescents with FASD, and in particular I'm looking at interprofessional collaborative practice and the inclusion of strength-focused approaches to intervention for these children and adolescents and their families. I'll now hand over to Jessica.
Jessica Birch:
Uh, thank you very much, Kelly, and hello everyone. My name is Jessica, I'm 36 years old and I live in Melbourne, land of the Wurundjeri, and I pay my respects to elders past, president emerging. I was diagnosed with FASD at 33 years of age, after a decade of declining health, and a lifetime of struggles, and understanding my diagnosis and since diagnosis and learning about the prevalence of FASD and the barriers that individuals and their families face every day, has really compelled me to speak and driven my advocacy around this complex issue. So I hope by sharing my experiences growing up undiagnosed and what I've learned since helps raise awareness of the consequences of the prenatal alcohol exposure, and minimise the harm. I'm focused it on empowering people with the correct information, so they can make informed choices without the shame or the blame, and I really hope that speaking with people drives conversation and ultimately understanding, and, you know, with respect to the public perception, and also provide insight for healthcare professionals.
I regularly participate in a number of advisory and committee groups and government projects through our national organizations and universities. I was also involved in campaigning for the clear visible alcohol warning labels. I've engaged in peer support work for others living with FASD, professional development for doctors and clinicians, webinars, podcasts, conferences. I talk a lot! I hope to continue to advocate and to shine a light on the plight of those living with this condition in order to arm individuals, families, carers, and health professionals with information to not only be able to accurately assess and diagnose but create successful interventions and support. Thank you so much,
Kelly Skorka:
Thank you, Jessica. I'll now hand over to April to introduce herself.
April Wilson:
Thanks, Kelly. I acknowledge the Nyiyarparli, traditional owners of the country on which Newman stands, and the Martu people as the custodians of Jigalong, which sits in Nyiyarparli country. We will respect and recognise their leaders past, present, and emerging, and I'm grateful for the privilege of living and working on this country. Good morning, everyone. I am a descendant of the Ngarrindjeri, Kaurna, Narungga and Banggarla people of South Australia. I'm currently living in the Pilbara area with my son and his family, providing some care for my grandsons. I'm 65 years old, I've raised four children, in their 40s and 30s now, as a divorced single parent working full-time.
My commitment to family care has always been strong. It's been an unwavering love, care, concern, and determination to make a difference in their lives. It's what we as Aboriginal family do to keep our kids within our family and community units. My 17-year-old boy Isiaih, who is my sister's grandson, was put into my care at five days old. I already had his older sister from seven months old. Isiaih was diagnosed with FASD at eight years old. I also have an eight-year-old grandson that's been diagnosed with FASD.
When Isiaih was diagnosed with FASD, I undertook a huge learning journey about this disability. I was fortunate to connect with and receive valuable support, advice, and become involved in the work of no FASD Australia, connecting with other carers, and sharing our lived experience. This has enabled me to share my learning, raise understanding, help raise awareness about prenatal alcohol exposure, challenge and inform those that provide support and care to my child. I've become a very strong advocate for raising awareness and sharing our very complex story about FASD. I participate in national and state consultations and FASD advisory groups, research, podcasts, presentations, highlighting this important issue. I want to make a difference for Isiaih and for my grandson, and for others living with FASD. Thanks, Kelly.
Kelly Skorkra:
Thank you, April. I'll now hand over to Vanessa.
Dr Vanessa Spiller:
Good morning, Kia Ora, everyone. My name is Vanessa Spiller and I sit here on the lands of the Yuggera and Turrbal peoples of southeast Queensland. My journey with FASD is - I wear multiple hats in the FASD space. I'm the parent of a now young adult, a 22-year-old who has FASD, but I’m also a clinical psychologist who works with other families and young people with FASD, as well as doing a variety of sort of work in the training and education space. But one of the things that I really enjoy doing is, I guess, being a creator of FASD-related resources like books and videos.
So, my journey begins I guess with my son who came into our care when he was about two-and-a-half-years old. And although I was already sort of a clinical psychologist at that point, and I had lots of training and experience in working with young people with challenging behaviours, and complex trauma, both my partner and I really weren't still prepared for the addition to our family of our son who is just an enormous bundle of energy and complexity. So even though we had the unusual experience I guess of having our son diagnosed with Fetal Alcohol Syndrome at that point, we really didn't have any idea what that meant in in real life, or what we were meant to do about that, and how we might need to parent him differently. So that's really what we've been doing over the last 20 years, we've been trying to educate ourselves, both through the research and the literature on this, as well as the lived experiences of having a young person with FASD in our life. And I'm very confident in saying that we're not done yet with our learning. There are still things that, you know, I don't know and that surprise us every day.
In my professional life I guess I work as a clinical psychologist, supporting families among my other clinical work. But in my spare time I also run a training program, for parents and carers, who have young people with FASD. and I guess both my collective experiences as a professional and as a personal - I guess I see myself as being a little bit of a translator, and that my job as a parent and a professional is to sort of take the science and the research that is coming out around FASD and then apply that to individual young people, including my own young person who's sitting in front of me, and to take that information and that knowledge and to turn it into the kind of supports and parenting approaches that suit the brains of the young people that I'm around. So unfortunately, the brains of all young people with FASD are a little bit different, but there are also a lot of similarities. So, I guess my overall mission really is to improve not only my understanding of my son, but all people with FASD so that we can compare them and support them better across their entire life.
Kelly Skorka:
Thank you, Vanessa. I'll now hand over to Gilberto to introduce himself.
Gilberto Spencer:
Hello everybody it's very nice to meet all of you. My name is Gilberto spencer and I'm 36 years old. With regarding my FASD journey, I think it's quite unique because I have never heard about FASD in my life until I was 33. And what I can tell you is that I have always felt special, but I didn't know the reason until I was diagnosed with FASD three years ago in 2019. And the moment I heard there were FASD for the first time, I knew I had it. I knew I was affected by it, and I will tell you a bit more about my journey in during this hour or so. A bit more about myself, I live in Sydney but at the moment I’m joining you from Buenos Aires, I'm in Argentina at the moment. I'm originally from Mexico and I'm also a very proud Australian citizen now.
Regarding my professional life, I'm an accountant by trade. I hold a Master's in Finance and have always worked across different industries, including accounting, finance, banking, consulting, and insurance industry. And when - I mean, I just want to tell you what's relevant, and from this webinar, and when I got my diagnosis, I left my last position at the commercial - to - and then I founded my tech company, and then left my tech company to start working on my advocacy. I've been doing some advocacy ever since I got diagnosed and participated in different events. I also started my own podcast called "Wired Differently", where I talk about FASD from my live experience I have also studied a blog and i have been creating some content also I after my diagnosis I became a certified life coach. I'm an entrepreneur, I run my own coaching business, and my aim and goal is to show everybody what's possible for a person with FASD. Thank you.
I hand it over back to Kelly, I guess.
Kelly Skorka:
Thank you, Gilberto, and thank you to all of our panellists for joining us today.
We'll now have a discussion regarding our panellist’s experiences around FASD. So starting off with their journey to diagnosis. The journey to receiving a diagnosis of FASD can be a long and challenging process for many individuals and their families. As we know, FASD can result in individuals experiencing difficulties in different areas, and in Australia the assessment process can be really exhausting. There's often also limited understanding of FASD among clinicians, so sometimes it can be hard for families to find professionals who know about FASD and how to conduct the diagnostic process. So, getting to a diagnosis can therefore be a very different journey for everyone. So we're going to hear from our panellists now about their experiences seeking a FASD diagnosis either for themselves or for their children.
So, I'll start off with April. What made you seek a diagnosis for your child Isiaih?
April Wilson:
Isiaih’s cognitive and academic functioning was extremely low. As a parent, I was concerned that he wasn't meeting developmental milestones, and engagement and socialising behaviours from kindergarten were concerning. Hearing and language were very early indicators, and as time progressed, the learning gap became more evident, and so referral for additional supports was sought to address the challenging behaviours, attention concerns, developmental functioning concerns, heightened oppositional behaviours, sleep issues, and sensory concerns. So there's quite a bit in his challenges.
I value the importance of early intervention and education, well-being for positive life outcomes. Raising educational outcomes for aboriginal children is one of the most important priorities. It's part of a national government commitment to improving lives of Aboriginal and Torres Strait Islander people and identifying some of the several socio-economic outcomes that are important to the well-being of our people. Some of the targets that I just want to mention include suicide, life expectancy, and out-of-home care, and these particularly because they relate to my child.
He has suicidal ideation. He's attempted a number of times to commit suicide, he self-harms quite regularly, and obviously it's a huge concern to myself and my family. And so, his life expectancy would also be an issue. But for Aboriginal people our life expectancy is much lower than that for other population groups. He's also in out of home care which has a high number of Aboriginal and Torres Strait Islanders children. Isiaih has also been a part of a group home care scenario, so this adds to well-being concerns as well. So, identifying concerns and receiving diagnosis was crucial to enable access to appropriate support, which included additional funding under disability in education settings to support optimal learning, and participation for his future. It's also important for me to understand what the underlying conditions were to actually support my child.
Kelly Skorka:
Yeah, so you noticed quite a few - quite a few areas of challenge for Isiaih when he was quite young, and you spoke about particularly that importance around his mental health and his safety. So, he got a diagnosis when he was around eight, and I just wanna ask Jessica as well because you had a diagnosis quite a bit later in your life, and it was a bit of a different process for you. So, could you tell us a bit more around how you got your diagnosis?
Jessica Birch:
Sure, kelly, thank you. So, for me growing up, I seemed to meet most of my developmental milestones. I was a very shy, moody kid. I was definitely prone to tantrums, i was a bit of a tantrum-thrower, but I didn't really express extreme or like overly disruptive behaviour. I was relatively well behaved. I was a people-pleaser, I just really wanted to do well in everything. But I was definitely struggling, and I learned to mask very well. I learned to mask what I wasn't understanding, and it definitely took a toll in my life and it's severely - that masking and that lack of understanding and that difficulty definitely um impacted my mental health and my sense of self as I was uh growing up.
So, for me, my high expressive language tends to hide the deficits that in a hindsight were very obvious, if you know what you're looking at. The signs were there, and mum was taking me - mum - my mother definitely noticed a few quirks, and she took me to the doctors and specialists with her concerns. And later we would learn that, you know, a lot of the things that we were going to the doctors about was the damage to my nervous system. But the symptoms were always dismissed as something I would grow out of, and of course I didn't, and they just sort of either got worse or sort of changed over time.
So, I struggled deeply in school, and I was in dire straits by the - once I entered adulthood. I left home and basically steadily declined in both my mental and physical health until my mother stepped in. Yeah, diagnosis for me was a long and quite painful journey. It took 10 years of illness and four years of seeking a FASD diagnosis before my health picture actually came together, and truly without my mum's exceptional care, research, resilience, guidance, love, I wouldn't be speaking here with you today. I was diagnosed because she was able to recognise FASD when no one else was.
Kelly Skorka:
Thanks. Wow, that's a very, a very long process for you, knowing since you were quite young that there were those challenges, but being able to mask that so that it wasn't as obvious perhaps to other people, and then going through and really pushing for a diagnosis. It’s great that you had your mum as such a wonderful support during all of that.
And I want to ask Gilberto now because you were also diagnosed as an adult, so could you talk to us about how that process was for you as well?
Gilberto Spencer:
Sure, thanks Kelly. So, my diagnosis, I - first of all, I want to say that it is really hard to access services for adults. But my journey into getting a diagnosis was quite straightforward, because as I mentioned, I never heard about FASD in my life, and when I found out about it, called the NOFASD line, which I encourage you to make use of them. they have a helpline. and especially if you're a provider. they can give you training. they can give you or send out some material.
So long story short, nine months after my initial call, I got my official diagnosis. And I not only got diagnosed with FASD, but I got a bunch of other diagnoses. I was diagnosed with ADHD and chronic anxiety chronic depression, PTSD, trauma, impairment in my hearing, sensory issues, also to have severe impairment in executive functioning, and so many others I can't even remember it now. But I have to say that I really enjoy the process, because I learned a lot about myself, a lot of things that that I thought were normal turn out not to be normal. So, I just want to thank like publicly NOFASD Australia, because without their help I didn't - don't know what I would have done.
And the huge difference the diagnosis has made for me is that I always felt stupid and incapable, and now I feel empowered because I feel I have done more than like an average neurotypical person thing. Thank you.
Kelly Skorka:
Wow, so, that was a very different experience for you Gilberto. It's good to hear that there were some positives that came out of that diagnosis in understanding a bit more about yourself and what's happening for you. So that's really good to hear and that you had that support as well.
Gilberto Spencer:
And if you allow me, I also want to thank an angel that helped me through the process is a doctor who specializes in FASD in Australia, is one of the few that diagnoses this, and she helped me so much. So, I got in touch with her, which she prefers not to be named, but I got into touch with her through NOFASD Australia, and, yeah it was quite simple in a way that I could prove so many deficits.
Kelly Skorka:
That's really good that you had that support, especially since as you said there's not as many resources out there for adults with FASD or going through this diagnosis.
Gilberto Spencer:
Yeah, thank you. No, I just want to say that at a personal level, it was really important to get my diagnosis and I'm sure is the case for everybody who might suspect that they have FASD.
Kelly Skorka:
Yeah, that's really good to hear. And I just want to ask Vanessa around your experience as well, because you're a mother to a young child - a young man, sorry - with FASD, as well as a psychologist, and he was diagnosed before he lived with you. So, what was your experience regarding him having that diagnosis?
Dr Vanessa Spiller:
Yeah, we had quite a difficult experience, and I and when I reflect back on it now, I think we were so fortunate. We obviously were living in an area where we had pediatricians and, you know, people who were working who had experience with FAS, which is the diagnosis which came before FASD was used in Australia. So, he was diagnosed with Fetal Alcohol Syndrome very early, in the early years of his life, and just - and what was very useful about that, was the fact that we knew that there was something going on.
The downside was no one could really tell us what FAS meant on the ground. They couldn't really tell us how it was going to impact on him, they couldn't explain what kind of interventions were going to be the most useful for someone with FASD, but we knew that there was something going on and that it impacted on his brain. And so, as a psychologist, even just knowing that was enormously helpful, because it really helped us to get an understanding that he's not going to develop in in the ways we would typically expect someone - a young person - to develop, and that clearly it is going to have an impact. So, we used that information, even though it was quite limited information at that stage, to, you know, really dig into it.
For me, I went to the research and the literature, but I also sort of started to reach out to different people who might know something about this and started to just... we knew that he would need some early intervention, and again there's no - there was no early intervention specific for FASD at that time - and I think in lots of ways there probably still isn't. But we knew he would need some early intervention, and so we looked at those areas that he was struggling with, even as a two- and three-year-old, which were quite a few. He had, like some of the things that other people have mentioned, issues with you know hearing and with language. He did have some really big behaviours and emotions and could be quite aggressive at times, and sort of lash out. So, we just delved into every form of early intervention that we could get our foot through the door for, and I think that really has paid-off in the long run. Even though it was quite difficult sometimes to get him into services with the FAS diagnosis, sometimes the other diagnoses helped us to get into those services.
It also really helped us with changing our expectations, and with how we interpreted his behaviours. Because as I said, you know, he came with a lot of challenges. You know, he came with being so busy from daylight till dawn, and he came with a lot of, you know, crankiness and behavioural symptoms, I guess, of aggression and kicking and biting and spitting, and those kind of things that, you know, if we hadn't have understood that there was stuff going on in his brain, that we might have interpreted as naughtiness and just being you know a bad kid in some way. But we were really lucky because we knew that that wasn't the case, we knew that there was stuff going on that we obviously were going to need to do parenting differently, and we were going to need to support him differently. So having those diagnoses, and he eventually actually got re-diagnosed again when he was a little bit later, because even, I guess, even though the world was becoming more aware of FASD, there were still people who were questioning that diagnosis including medical people. But we were really lucky to come across a number of people who really knew FASD who were able to go: 'no, it's very clear that that's what's going on for him'. So, um, yeah. And the other benefit I guess is being that we can then advocate with schools and the other services that have been involved with him to say: 'hey, you need to do things a little bit differently’. Not because, you know, you know, he’s, because of the way his brain is structured, and because of the difficulties he experiences, that that's why he needs things to be different, not because of you know, the fact that he's choosing these behaviours. So that they were probably some of the biggest benefits of getting that diagnosis early for us.
Kelly Skorka:
So, yeah, it's really interesting your child had a diagnosis when he was so young. He got it really, really early, but then that was also offset by the fact that there wasn't a lot of literature or knowledge at the moment, so you had to do a lot of that research yourself. And so, as we can see there's such a huge variety of experiences around this journey to get this diagnosis, but it sounds like from our panellists that for you, from your experiences, there's also positives of having that diagnosis in understanding what's happening for you or for your child and how to best support them.
I want to move now to thinking about strengths and interests in in individuals with FASD, because in in the FASD space there's a lot of knowledge regarding the challenges that individuals may experience, but it's report important to remember that everyone also has strengths and interests as well. Sometimes this consideration of individual strengths can get a bit lost when supporting individuals with FASD and their families, so be good for us to get some insight into the different strengths and interests that our panellists have themselves or see in their children.
So, I'll start off with you, Jessica. What are some of your interests? what are things that you enjoy doing or trying, and some of your strengths?
Jessica Birch:
Thanks, kelly. I - what are my interests - um - I really like uh tend to gravitate towards art and design. I like to draw and dabble in different crafty things like screen printing and book binding and pottery. And I used to do heaps of yoga and dance classes, and I'm trying to get back into that a bit, although I was never really good at dance classes. Trying to coordinate my arms to do something different to my legs, it was not um that easy for me, but I love doing it anyway. I love being in the bush or the rainforest or by the beach. I'm definitely a bit of a water baby, I grew up in northern New South Wales and um I was always by the coast. So hiking, taking pictures of bugs, exploring new places, s kind of what brings me a lot of joy.
On a more I guess cerebral sort of level or like other things I’m interested in as, like, behavioural and social sciences. I'm interested in social justice and psychology and anthropology, and generally just what makes people tick, you know.
As for my uh strengths, I feel like I'm and quite an empathetic person. I think I have good insight into the experiences of others and I and I think that helps in my advocacy work. Hopefully I have more strengths than that, but I - it's a hard question to answer in for yourself. I think um I'm a good counsellor, I have been told that, and hopefully I’m a good advocate too. But just on that note, I think um more strengths have come out in me since diagnosis because that completely changed my outlook, it completely changed the way I viewed myself, the way I viewed other people. And it allowed me to heal a lot of the, you know, kind of ,the trauma from the experiences that I was having without seeing it through the lens of FASD, and what that sort of had done to my to my mental health. So, I think I'm still building myself up, I'm still learning. I have quite a lot of interests and hopefully quite a lot of strengths, too.
Kelly Skorka:
Thank you, Jessica. You sound like a very creative and active person, with that caring side as well and that real push for wanting to advocate for others. So that's really lovely, thank you.
I'll move over to Gilberto now and ask you, what are some of your strengths and some of your interests?
Gilberto Spencer:
Thank you, Kelly. Well, when it comes to my interests, I like traveling, I have always travelled. I'm always on the go and I travelled the five continents. I have always liked dancing and music. I think music, it helps me remember things, I have discovered that, and I love dancing even though I now know that I have balance and coordination issues. I don't care, I love dancing! and I’m also very, very happy that we are talking about our strengths, because don't get me wrong, like getting my official diagnosis, it wasn't as happy as I previously described it, it had like a - it had an emotional toll. I mean the toll that it took emotionally, it was hard, and it was bittersweet. But now I really focus on the strengths that we all have, and I want to tell everybody that FASD comes with a lot of challenges, but it also comes with some gifts, and as I call them, not only gifts but superpowers is the way that I see it now.
Because I don't think outside the box, I am outside the box, and now I know that I'm wired differently, and I can see things that are not as obvious for other people. And I think this is has this has helped me to succeed in different roles and in different companies that I have worked, because I always saw the way of do things in a different way, which I thought it would be obvious, but nobody else was seeing it. I also have like a sixth, like a sixth sense for people, for reading people. And I you can check out the - my podcast "Wired Differently", I actually made an episode about FASD gifts and superpowers. And I'll give more examples about it.
And going back to my interests, now that I've been diagnosed, I'm obsessed with the human brain, and I learn, and I love learning about it. Thank you.
Kelly Skorka:
Thank you, Gilberto. That's - it's really interesting to hear that music has been really helpful, and I love the way that you - you've got this outlook around what are the strengths, and that comes from your diagnosis as well. And you're another one who's very active in advocating in the FASD world, so thank you very much.
I'll move over to April now and ask you what are some of the strengths and interests that you see in Isiaih?
April Wilson:
Isiaih's got a very strong interest in the military in particular the army, so he's fascinated with every aspect of it. For example, their equipment, their ordinance. He’s brought his own fatigues, ghillie suit, backpack, and he uses them quite often. But he also wears them several times, as well he does participate in cadets which supports his interest and he has very supportive people working with him there, which is wonderful. He often talks about getting employment in this field as well.
His other interests are police and fire services. He's loved the sirens ever since he was so little. He's learned to identify each particular siren, and he can imitate those sirens to a very high degree. He actually did a police sire - I live on a corner block, lived on a corner block, - and he went out and stood there and made the police siren. He came running back inside a bit anxious because cars pulled over and stopped, thinking that there was a police car coming.
So that was a little bit of a lesson for him, but he still makes those sounds now. I think it's a sensory thing, too. He also has a huge respect for all of uh armed services, police and fire services, and they just still fascinate him even today. So, his interest is quite strong.
His other interests have included the natural environment, and weather systems, extreme weather systems, planets and stars, and rocks and gems, fascination with money from other countries. He also enjoys photography and video editing, and he makes video clips of family events which is wonderful because he’s very good around putting media into video. His media teacher describes his skills as much higher than students in higher year levels. He's also just recently or a few months ago won an award for a short film that he actually made, where he had to receive a presentation.
His strengths, he has strong values around drugs and alcohol, and social justice, so bullying, harassment. He protects others that he witnesses where he may witness events of this happening, and he will challenge those things and stand up for what's right and wrong. And he talks about this in every scenario you can imagine. So, he picks us up as family quite often.
He has a great sense of humour and likes to play jokes. So, he sat out the front during one Halloween wearing his ghillie suit, holding the bowl of lollies for when people came to the door. He did frighten a few people because he sat there very quietly then made a movement when they arrived. So that's the level that he will go to at times to play those jokes.
He's very protective of family, he's very friendly, he's very caring towards us, myself in particular. Because of my age he has a bit of anxiety about that, and so he will always monitor what I'm doing, where I'm going, who's around, what's going to happen. And he did that when I went overseas on a couple of holidays where there were volcanoes, and he has a level of interest in volcanoes, but he was very concerned that I was going to be near them, and he didn't want me to go actually. Because he's been with me most of his life, I'm mum to him, so that’s why he's extremely protective of me. He has a really responsible attitude about ensuring my health and wellbeing is considered. He tells me like he's the adult and I'm the child that I've got to do this and, you know, you have to do this. So his nature is just so beautiful in a lot of ways, and he just, um, my love for him is just so strong. He's just such a beautiful kid, even though we deal with all of the other challenges.
Um, I have an interest in - well - this is my - what I want to do when I do pass on. I want to be cremated. He's very against that, and I still can't work out a lot of why he's so resistant to that. But I asked him one day, and he actually said to me: "Mum, I don't want to have to vacuum you up from the carpet." So, his thinking is that I'm going to be in an urn sitting somewhere and that I'll get knocked over. And so, you know, that thinking is typical of kids with FASD, that concrete thinking stuff. So, you've got to take that into account when, you know, you're supporting your child. But yeah, it's um it helped me to understand his thinking, so yeah.
Kelly Skorka:
Thank you, April. He sounds like a very caring, very family-focused child who's also quite creative and quite entertaining. Yeah. And it's great that his interest in the military and police, and that are something that he can look towards a career with as well.
I'll just ask vanessa now around what strengths you see in your son, and maybe also if you have examples of strengths that you see in other children with FASD that you've worked with?
Dr Vanessa Spiller:
Um, yeah, just um listening to April, I see so many similarities with my son across so many different areas. You know, the sense of humour, and the love of jokes and the very strong moral compass particularly around things like drugs and alcohol. And I guess these are things that other parents also report to me as strengths, and they're young people too.
But my son's particular interests - I guess he - one area that he has always been really good at has been his sort of gross motor skills and his ability to use his body. He's incredibly, even when he was very young, you know, he was really strong and he could climb the door frame, for example, or pull himself up onto the kitchen bench even when he was two to three years old. He was incredibly strong, so physically he's been very capable and very coordinated.
And he has had a long-standing interest in in wheels, which probably sounds a little bit odd, but um he was, he would just get mesmerized by even looking at the washing machine going in in different cycles. He would watch the wheels on his bike, he would like the wheels on cars, wheels on trains, all of those kind of things with, you know, motion. And so that was something that he we really saw as an interest in him and got him into very young.
He pulled his own training wheels off his bicycle when he was about four and has been an excellent bike rider, scooter rider, and currently mountain bike rider ever since. And so and he's very good at it, like it's an area that keeps his attention and his concentration, it gets him outside, it gets him interacting with other people of all different age groups. And in that environment, it's been wonderful for him because it's really helped him develop a good sense of self-esteem, it's helped him to learn how to interact with other people particularly at the skate park, it's assisted him with this idea that, you know, you can crash, but you know that you need to keep going. It's really helped him with perseverance so it's something that he really is very good at. He loves to be videoed and make videos of all of his new tricks, and he'll show whoever will care to look at them. But I think that also taps into some of the other things that he's very good at, which is particularly in that context, more so in that context than any other context, really, he's really good with younger kids in particular, and if you go to the skate park, you know, he will often have like a group of three, four, five little kids around him. And he gives them tips, and he coaches them and, you know, if they fall over, he's very kind and looks out for them. I've actually had some parents at the skate park come up and just spontaneously tell me, you know, what a delightful young man he is and how helpful he's been to their kids at the skate park. So, for him that's been such an enormous sense of self-esteem because he's struggled in so many other settings, to have this area where he is really good at something is just so important, and I think encouraging that he's also very forget that - could you try again - oh my watch is talking to me, apologies. He's also very interested in particular areas.
A bit like April was mentioning, he has areas of interest in history, nature, pirates, bears. I've probably watched every 'fail video' that has ever been made. So, he's very, very interested in in those kinds of things. He can be very honest, and he really is very funny, and loves to practical joke. You know his timing leaves a little bit to be desired, he can't always pick the best time to do a prank, so you know he's likely to jump out at you from behind a door when you've got a handful of things. But, you know, again, I think these are qualities that many parents report about their young people with FASD.
Kelly Skorka:
Thank you, Vanessa. It's really lovely to hear that, you know, his strengths in gross motor and his interest in riding bikes and getting out and doing things have been so helpful for him socially, and with his attention and everything. It's lovely to hear that he's got all these beautiful strengths.
Dr Vanessa Spiller:
And I forgot to mention - I just wanted to add in one last minute, he got a job starting last week, ironically, as a tire fitter. So, he's worked in that area previously, and he's got another job in that area, which is just lovely. It fits right in!
Kelly Skorka:
Oh, well, congratulations! That's fantastic, it fits right with his with his interests.
And hank you to everyone for giving us some understanding of all of your strengths, of interest or the ones that you see in your children.
I want to move now to the kind of opposite side, in that FASD is quite a complex disorder and it can present many different challenges across lots of aspects of life. So, remembering that everyone with FASD is a unique individual, they often experience their own personal challenges. So, I'd like to have a chat with our panellists about their difficulties that they or their children experience, but also some of the supports that they've found helpful.
And so, I'm going to ask you, Jessica, first around what are some of the challenges that you face in everyday life and some of the supports that have helped you to manage those challenges?
Jessica Birch:
Thank, Kelly. So, it's a bit of a doozy, this one. As well as my journey to diagnosis, so I will - I've got a little bit of information here, but I'll try and make it quick, and I'll talk about some of my challenges, and then I'll talk about some of my support. So, for me, my biggest challenges are around sensory - I've got sensory and auditory processing issues, is a big one for me. Memory attention, and my adaptive and executive function, so ultimately, I find it really hard to do on a daily basis, so building and maintaining a routine around my goals and responsibilities and my desires is really hard to do independently. I have a lot of personal goals. I have a lot of advocacy goals. However, without a significant amount of support and structure, I find it really difficult to see them through - to see them through, or just even prioritize and structure them in the right way. Or find the resources that I need - I'm not a very good resource finder, either unfortunately. So, I deal with a lot of frustration around wanting to engage in more activities and achieve more things in my life, and just be in the world experiencing people, and new places, and stuff.
But I do find it quite difficult without support, things take me a long time, I um quite slow and getting through tasks takes me much longer, significantly longer. And something for me is that I find that the energy it takes to maintain my everyday responsibilities, so like house chores, bills, email, my appointments, my sort of health appointments, as well stops me from being able to really incorporate things in my life that bring me all the joy and makes me feel like I have a really full well-rounded life. It's like I get stuck on a loop or I'm on autopilot, and I can only do what I can do, and I can't actually branch out or incorporate more things like dance classes into my schedule, not without support and without someone guiding me through.
So, fatigue is a really big one for me. Before my diagnosis of FASD, I was diagnosed of course with anxiety and depression, but I was struck down with a quite severe chronic fatigue syndrome. And I also have a diagnosis of postural orthostatic tachycardia syndrome. I have disordered sleep, of course, and I need a lot of downtime, a lot of time to transition into tasks or, what I do a lot of, I need to do a lot of pacing to sort of maintain and to regulate.
I've struggled a lot with my adaptive function, and just engaging with my peers and forming lasting friendships has been a struggle throughout my life and something that has caused great sadness and long bouts of loneliness. Becoming incapacitated with FASD kind of made my world smaller in this respect, and I feel like I missed out on a lot of my 20s. I was sick for most of my 20s and I missed out a lot on those social aspects, and that ability to sort of mingle with my peers, not that I was very good at it, I wasn't very good at it, but um there has definitely been improvement in this area, but I don't get a lot of opportunities to um to socialize and I would like more. .
I have a lot of sensory and auditory processing issues like sound, light, noise textures. The light on my face is actually quite bright for me, I'm not - I've got some special glasses, but I'm not wearing them because I just had a lot of glare on the screen, but um I’m sensory avoidant and I'm sensory seeking. I touch what I like, and I don't like being rained on, or walking in the grass in the dark. I don't like those things, don't make me do them, I don't like it!
So, um I'll just quickly, I'll try and quickly tell you about some of my supports. The sensory issues can really make or break my day, so sensory support is very helpful for me. Dim lighting, minimizing competing sounds. I have light blocking glasses like I mentioned, noise-cancelling headphones, as well. If my environment is taken care of, my executive function is much better. If my environment is not right, I can really struggle.
I use a lot of aromatherapy, I've got it going on in the background to help regulate me through my this webinar, and I highly recommend aromatherapy. And I engage in different therapies, so this is the crux of it, I'm going to finish up. So, this includes a neuropsychology, a neuropsychologist that incorporates acceptance and commitment therapy into her sessions with me. I do talk therapy and until recently I was doing art therapy and I hope to start that up again. I really love art therapy, I find it incredibly beneficial for me, and I find having various people to talk to in these different sorts of modalities has been really healing and really helpful. I do physio to increase my stamina and strength and it also supports my brain function, and I do that to deal with my fatigue.
Having a person there to help me get through my tasks is infinitely better, beneficial so the concept of the second brain is something that deeply helps me and that I need um absolutely need it to move forward in my life. I have found it very difficult to find a support worker who is FASD-informed and it's tricky. Many health professionals assume that because I can articulate my needs, I can do the work to fulfill the needs, and this is not the case. I can say it, I can't necessarily do it. People I engage with often don't realize how much cognitive support I actually need, mostly because I speak well, and they can't see the deficits. I assure you that they are there. I have often been left a bit more frazzled because of that, but really supports are life-changing for me.
I have just started engaging with an OT which I haven't done for quite some time, to help me combat some of the issues that I'm finding with support work. And I'm really excited about that. This is a person that will be seeing me weekly in-home, and I feel like I can move forward. It's really great.
Kelly Skorka:
That's really great to hear. Thank you, Jessica. I think it's so important for professionals to think about, like you're saying, just because you can articulate what you mean what you need doesn't mean that you can actually do what you need to do to fulfill it without that extra support and thinking around, really, that setting up that environment to be really right for you, and then having that support person as well to help you with your activities. So, thank you, Jessica.
I'll move over to Gilberto and ask you what are some of the challenges that you face and some of the supports that you found helpful?
Gilberto Spencer
Yeah, well, when it comes to the challenges that I face, I'm gonna focus on the ones that come up daily. And I mentioned quite a few of the diagnosis that I got. But same as Jess, I think I'm a very slow person. I think about myself, of my brain like as like an old computer. Because while you might be able to open like 20 tabs on your browser, I can only open one, so that everything takes me longer. And also, sleep is a big issue, my sleep cycle changes quite a lot. My long-term memory is it's a big issue, because I remember things, you know, on like on bullet points. I cannot go back to them, I remember things as if it was something that someone told me, but not something that I did and I think about.
But when it comes to the supports that have helped me, and this is quite surprising, because same as this is something that nobody told me, again it was the same as FASD, nobody told me, I never heard it before, but the supports that have that have really helped me and changed the needle, it's been coaching. So, when we talked about coaching, it's pretty much metacognition, and it has helped me so much and I'm so lucky to have found it.
That's why I become a coach myself, so I want to help other people. But what I think about it, it's that the brain is the cause of all of our challenges, but our the brain is also the solution, because for me when I was able to see what my brain was doing to me, I was able to realize that that is not who I am as a person, who I wanted to be as a person, that wasn't what defines me as a person. And I think through coaching and metacognition, we are able to - I was able to figure my own brain out.
Because Vanessa talked about expectations, and when we have different expectations about ourselves is it's a living hell. And I always say, if you judge a fish by its ability to climb a tree, it'll believe its entire life thinking that that it's stupid. So, I was trying, I was so frustrated because of my own expectations, because I was trying to climb that tree over and over every single day. And in coaching helped me figure my own brain out, and I was able to see that I am not a fish, that I'm not supposed to climb that tree.
Kelly Skorka:
Thank you, Gilberto. It's - I really liked your analogy of feeling sometimes like an old computer and needing to have that extra time to be able to do whatever it is that you're doing, but that that coaching approach has been so beneficial for you and that's really great to hear and helpful for professionals in particular to know.
I'm gonna pop over to April now and ask you about some of the challenges that Isiaih faces and also, that you face as a caregiver, and some of the supports that you found working well.
April Wilson:
Some of the things that Isiah has challenges with includes memory. So, retaining memory for a long period is challenging, so if you give him tasks, for example, and his processing of that information will be lengthy, so it will take quite a while and he might not even be able to follow up on that. So just like Jess, his executive and adaptive functioning is low, so you have to support him constantly with a lot of things and that includes being able to direct him in suitable clothing, matching clothing up, choosing new clothes, wearing new clothes. He has a resistance to wearing new things, so it's a struggle to make that happen each time, so he could be wearing holey clothes, dirty clothes. And he needs reminders that, you know, you need to put something cleaner on. He doesn't recognize that you have to wash your clothes, do laundry regularly, so it's a lot of that sort of stuff, that is constant.
His language. He has good social language, but he has severe oral language deficits. He has dyslexia. So, he when people speak to him, because he's got good social language, they think that he will understand what they're saying and be able to respond in a timely manner, like we expect, so all of those expectations are just, you know, not what they can manage.
He has anxiety, although not diagnosed formally with anxiety. But some of the things that he used to do at home at night particularly. You remember, you've got to put the bin out for the next morning collection, and it's night-time and I've often done that, so going out the front of my house in the dark, he'll get very anxious about, and he'll follow me out. "What are you doing, get back inside now". So, it's very stressful for him. He will pull the blinds down at the end of the day and make sure all the doors are locked. He does that in getting in the car with my daughter
and my grandchildren who get in the car and go for a drive with them, but before she even has to, is able to move, "Have you locked the doors, have they got their seat belts on". So, it's an intense sort of scenario that happens, along a range of situations.
So sensory things often are quite challenging. Throughout the day he's unable to self-regulate really well and, yeah, expectations people think because he looks like everybody else, he's going to be able to operate at that same level, and so there's a lot of challenges there.
Challenges that I face as his mother, well since diagnosis the lack of awareness within our community about FASD was just a big eye opener for me. In particular the surface level understanding, not really comprehending the complex nature of FASD, and so providing advice resources and the constant support to the sectors like education, health, police and community. And these are all the areas that I’ve had to engage with for him, to build their understanding so they're able to provide the right informed FASD care and support, so wherever it was needed. Isiaih played school soccer for example with a friend of his, and it was only that friend that he was the reason why he did that, but he's not able to engage age in sports like the way we normal society can. So that was a struggle. So having to inform that coach about expectations and what he could actually do, and that occurs to a lot of things that he wants to participate in, that you as the parent, carer have to think about and then provide information to those people. So, this is really exhausting as a carer, parent and for me that took such a long time to understand, what FASD was and then to learn about um him as an individual and what he required.
His explosive behavioural challenges both verbal and physical, so you know we get verbal abuse constantly and it's quite nasty, and in the very beginning before you understand that this is, you know, one of the challenges with FASD, those things were just so hurtful, and you react in a way that you've been raised around social standards and values and behaviours and so on. So, it took a lot to move from that understanding to a different understanding, and that also resulted - those meltdowns also resulted from the lack of understanding that I’ve just mentioned about myself, but also from others. So, understanding the complex FASD characteristics that trigger events and, you know, in the very beginning I didn't know those things, and even though you might have the best understanding and you put in place preventative measures, it doesn't always work anyway. So, it's, you know, there's yeah, it's a constant micromanaging so many aspects 24/7.
Carer wellbeing is another very important one. There's limited respite available and particularly in the disability area. So as a carer of four children with significant, you know, individual diagnoses, that was a real challenge for me. And over the last 10 years of my caring life, I've not had any respite except for what my daughter was able to provide personally, so it impacted myself and my family and my physical and emotional health suffered as a result of that. And also, what the others have mentioned is the lack of FASD-informed supports.
You know, obviously for me at the moment and my family is, the extreme challenge is Isiaih's continuous suicidal ideation, his self-harm which is extreme and constant, and his suicide attempts and mental health.
Kelly Skorka:
Thank you, April. There's certainly a lot going on for Isiaih, and also for yourself and I think it's really important that people remember around supporting the family as a whole, you know, with Isiaih's difficulties, with just doing normal daily activities and needing all that prompting and then in particular again his mental health and that anxiety around safety. But then also how exhausting it is for you as a carer and having to advocate as well as supporting him at home.
So, thank you very much, April.
I'm going to ask Vanessa now around some of the challenges that your son faces and supports that work well for him, and also how things are for you as well.
Dr Vanessa Spiller:
So, in this area I guess the things that we've experienced, there's also the things I guess that many of the parents and carers that i support also talk about, and with the life stage that my son's in currently, our biggest challenge is around employment. You know, when he was at school, and we were very fortunate to have a very supportive and helpful high school that didn't focus on academics but focused on just his well-being and him being there, and they focused on his social skills and, you know, how he engaged with other people. And so that gave him really consistent structure and routine and with around people who were actually really supportive of him. And then when he finishes, he loses that structure and he loses that kind of 'wrap-around community', so finding a job where, that he's doing something that he has some interest in, because he just won't do things that he's not interested in, is mostly around you know finding the right people who will actually understand him and support him and be flexible with the kind of working arrangements. He gets quite fatigued, for example, so there might be days when he just can't get into work because he's just it's built up over time, and of course that's not always something that employers are able to sort of be flexible with. So that's sort of one area that we're hopefully - we're working with an employer at the moment who has some understanding of that, and so also that they can understand him. And a good example is I had a hole in my tire, so we took it in to get fixed, in his new workplace just yesterday, and we went in there and, you know asked them to fix it. And it was towards the end of his workday, so he actually left halfway through getting our tire fixed, because he finishes at three and that's the rule. So again, you know, some employers might see that as you know rude, or skipping off, or you know being a bit lazy. But he was just being very literal and very concrete, and I guess you have to have an employer who can understand what is, what is what, and pull that stuff apart.
We have challenges with him sticking to things, when he has a tendency to make decisions that are really good in the short term. So, he's very led by his emotions in the moment, but they may not have such great long-term consequences. So, you know, that can be, you know, issues around money and how he uses his money. He can get very stuck on things, so we talk about perseveration a lot, and a lot of families I support they talk about perseveration. For him, he'll get very - he'll perseverate around things like gaming and the Xbox, and I think this is a struggle for lots of parents and carers, not only of kids, but also of adults. So, he finds it very difficult to get off things that he really enjoys. He can get really stuck on - you know, COVID, was incredibly confusing for him and continues to be confusing. The constant changes with rules mean that, you know, he'll remember the first set of rules, so you know, you're allowed to do this, or you're not allowed to do that, and when they change he’ll become the policeman and try to give, like, people lectures on what they should be doing. But he finds it hard to move on and understand that the rules have actually now changed.
He also has lots of challenges around friendships. And not so much making friends because he is funny and quite engaging, but he has a lot of difficulty keeping friends, because he can be really blunt and direct, and because he doesn't do things that he's not interested in, and hasn't quite understood the idea of sometimes we do things because it's nice for other people.
So, they're probably some of the big areas that we struggle with, and that again lots of parents and carers tell me about, for us the NDIS. Even though I know it can be a really difficult experience for lots of people, it's actually been incredibly helpful for us and in particular finding the right support workers. So, for our son, he hasn't particularly wanted to engage with professionals, so he finds those sessions very constricting and boring and require a huge amount of concentration and attention. What he works much better with is having support workers that have the right personalities and interpersonal skills that can actually teach him the same kind of skills, but they do that opportunistically rather than sort of in a formal setting. So some of our best support workers um have been, so you know, someone, one of our best support workers was someone who actually started as a cleaner with us, and she was just so well able to engage with him and involve him in decisions and encourage him to do things that, you know, she went in and got registered as a as a support worker, and then helped him with a whole range of other things.
So, they're some of the things that I found really helpful. The other thing I guess that my work with parents and carers tell me is just the supports for parents and carers and just being able to connect with either professional who get it, who they don't have to explain the entire FASD, you know, diagnosis and journey to. But that have an understanding of what that is, but also being able to connect with each other so that they don't feel so alone, and they don't feel isolated and they don't feel like they're the only parent in the world who's having these difficulties. So those kinds of connections I think both formally and informally are super important.
Kelly Skorka:
Thank you, Vanessa. I really liked how you talked about thinking around, you know, the employment side of things. We know a lot around needing people to be um aware of FASD understanding it in many different contexts, and that employment as well, particularly with the literal thinking and the communication side of things, and around those support workers as well being able to assist your child when it's within a more natural context or a more natural activity rather than supporting them in a more formal kind of setting. So, thank you very much, thank you everyone for talking about the challenges that you or your children are experiencing. I am just thinking about time.
I'm aware that um that we only have a short amount of time left, but I would really like to just get a bit of an idea around what the future - what your hopes are for the future. So, if
you could give a really brief summary of what your hopes for the future in FASD are.
I'll start off with you, Jessica. What your hopes for the future are?
Jessica Birch:
Thanks, Kelly. Yeah, make it short and snappy. Really, I hope to hone my skills really in advocacy. I hope to see alcohol harm minimized in Australia, and I want to be part of that team. You know I believe very deeply in the importance of having the public understand, as well as health professionals, of course, understand what the consequences of prenatal alcohol exposure are, and that it is significant and it deeply affects people's lives, like hundreds of thousands, literally hundreds of thousands of Australians. And I just want to be part of this community of wonderful people that shines a light on this, that removes stigma, and opens the conversation for, you know, intervention and support, and harm minimization.
So, I hope to do that alongside, sort of also healing myself and expanding my world through support, and I'm very, very grateful that I have a diagnosis where I can now be given the tools to shape my life. Thank you very much.
Kelly Skorka:
Thank you, Jessica. And that is such an important part of that harm minimization as well, in the future. Thank you, I'll ask you, April, now what your hopes are.
April Wilson:
Understanding the impacts of FASD on mental health across the health sector in particular, but broader obviously. And given that my child does all of these, the fact that he's an Aboriginal adolescent he's got an added risk factor as well. So that's really important to me.
Apart from that a FASD-informed universal management strategy, something we've talked about a bit. For me, you know, a critical care response mechanism or plan, responding to all of these incidents is important because we as the family have to deal with that fallout. Hospitals - they may end up at the hospital and be treated physically, but they're not considered mental health issues. And there is research going on and that indicates there is a connection with FASD and the level of numbers is high. So, to have a strategy that meets and supports families in this way when you've got a very extreme circumstance like that, for me, would be a supportive mechanism.
Education systems recognising the complex nature of FASD and its implications for complex learning difficulties. FASD education incorporated in teaching degrees and other relevant fields. Special educators, disability, for example. And if education is one of the key priorities
to positive life outcomes, then education reform should be a priority that's reviewed regularly.
And I just want to mention the department of education in the UK, day-to-day complex learning difficulties and disabilities research project, and the project feedback indicated that educators were struggling to meet the complex learning needs of students with complex learning difficulties and disabilities. So, you know, they stated that children coming into schools now with needs more complex than ever seen before, so this was my experience too, the amount of work that I had to do with my child's school was so heavy, but it took a good couple of years for them to get to a point of understanding where they needed to change things like the environment. about the school structures. When you think about behaviour as a significant part of people living with - some people living with FASD, then you know their behaviour policy is not appropriate for a child with FASD, for example, and their processes. So, my child went through suspension, exclusion, and going to behaviour services. So, you know, it's a lot of system things I think that need to change across a range of sectors.
Kelly Skorka:
Yes, definitely, and that in so much importance around the knowledge and understanding of FASD across all these different systems, and particularly like you said around raising awareness of the mental health challenges that individuals with FASD can experience. Thank you, April.
How about Vanessa? Can you talk to us about your hopes?
Dr Vanessa Spiller:
Yeah, I want all the things that April wants. I think that was a great answer, they just covered so much, so much scope. I guess in addition, you know, what I want for my son is interdependence, and I want him to have a strong system of supports that can follow him over the lifespan that that doesn't stop when kids stop being kids and they they're adults, so that you know he can contribute to the community in a way that's meaningful for him.
My hope is that, you know, he will have the things that other people have, which is meaningful relationships with people, and that he'll continue to feel loved and supported so that he can do that in you know the relationships he's in, as well.
But I guess in general, what I really would hope is that FASD can be better recognized so that both individuals and their families with the condition don't feel so alone, and so they can actually get the supports that they need across the lifespan. That's kind of what I would hope.
Kelly Skorka:
Thank you. Yes, I liked how you talked about supporting individuals with FASD to have that really meaningful and full life, and to not be feeling so alone. Thank you, Vanessa.
And Gilberto, I'll just finish off with you about what your hopes for the future are.
Gilberto Spencer:
Sure, well, my hope for the future is for no one to ever feel the despair that I felt when I got my initial diagnosis. As I mentioned, it was a bittersweet feeling, and I would like to tell everybody to don't believe everything that you read. Because if you read about FASD, or if you Google it, by definition it's brain damage, brain injury, and those words resonated in my head, like 'irreversible', 'permanent'. And because I was believing all of that, is that I fell through my lowest depression, like a darkest place I have ever been. And I just think about other people who might be going through the same, or mothers who might have drunk because they didn't know they were pregnant, and if you read everything that you find online, how, I mean, that will that makes you feel horrible. So don't believe everything that you read about it.
I want everybody to know that that's not true, that our brains are not like set in stone, that we have room for improvement within our limitations. And I mean, when I was reading about FASD, everything was very negative. I never come across like a successful story, and that's why I want to be a successful or like a like a role model for all the people with FASD, so I can give them hope, so I can so I can prove to them what's possible for someone with FASD. I have improved quite a lot my executive functioning, regardless of being diagnosed with a severe impairment on it. And when it comes to the things that I cannot change, like I cannot change my balance, my coordination, my sensory issues, my hearing issues, like all of these things, i cannot change them, but you have to change like what do you make them mean. I don't make them mean that I'm broken, I just make them mean that I will need to do things differently, and that I will get creative and that I will get there in a different way.
So that's what I hope for the future, I wanna - I wanna become an example of what's possible. I want to help others become an example of what's possible, and I want to help organizations and other people to understand FASD by sharing my story and my experience and how much I have - how much things have changed from that very dark place to where I am today. Thank you.
Kelly Skorka:
Thank you, Gilberto. And you're right, there's so much negative information out there, or information around the challenges of FASD, and it is really important for us all to have that hope and remember that these everyone with FASD, they're people. They have strengths as well as challenges, and they have futures. So, thank you. It is important that we are giving people hope as well, so thank you.
Gilberto Spencer:
I know they're not obvious, but if we if we know how to look, we'll find them.
Kelly Skorka:
Absolutely. Yes, thank you, Gilberto. Thank you, Jessica, April and Vanessa, all of you for your very valuable insights regarding FASD and showing us how diverse FASD can be in the journey, the challenges that individuals and their families may experience, as well as their strengths. It's also so encouraging to hear about your hopes for the future for individuals with FASD and their families.
I'm now going to hand back over to Elizabeth.
Professor Elizabeth Elliott:
Thanks very much, and I just want to echo Kelly’s thanks to you all for being so open and honest. You've really taught us a lot about not only the diversity of FASD, but it's complexity and most importantly that we should focus on strengths and that there is hope for every individual for the future.
Now we do have just a couple of questions. So, I’ll just remind the audience that this session is being recorded, so if you have to leave, you will be able to watch it later. But we've decided that we will proceed with just a few questions live, and perhaps Kelly the first one could be for you. There's a question from one of our OTs online who's asking her what useful strategies do you find as an OT?
Kelly Skorka:
Oh, great question! I think, you know, we have to remember that everyone is unique as we've just talked a lot today about with the diversity. So it's around making sure that we're doing what works for the particular family, but you know, a lot of individuals with FASD can have that anxiety, so making things as predictable as possible, advocating for them with other, you know, the other people around them wherever they're going if it's work or if it's school, talking about, you know, having those routines, having strategies to help reduce that anxiety, help them know what's going on and then, you know, changing the environment, the activity wherever possible to help them be as independent as they can be in what they want or what they need to do.
Professor Elizabeth Elliott:
Thanks so much, Kelly. Vanessa, there was a question for you. You mentioned that your boy, when you have had the assessment and diagnosis, you informed the school about his problems. There's someone online who works with people, kids with FASD, and she finds that schools are very poor to adjust their behavioural expectations. What was your experience and how can we best advise schools?
Dr Vanessa Spiller:
I think it's a really tricky one, and the experience will really vary depend on the school and depending on the personality you have in schools. Our personal experience was represented both ends of that spectrum. You know, I guess initially what we did we were at a school where they didn't have - they knew that he had the diagnosis, but he didn't they didn't really understand how that would convert into the kind of issues that he was experiencing. And so they didn't change their expectations of him very much at all, and expected him to be able to do and follow all of the rules of the school in exactly the same way as everyone else, and so he ended up getting a thousand consequences. We had a very thick file of calls to the school. So, you know, educating and trying to just work as you know, and often it is gently as you can while still being really clear about what it is, because I - you know - I recognize schools are incredibly under-resourced, and they're honestly doing their best a lot of the time. But when they are able to change their expectations, and when they're open to information, and open to education, and I would often offer to give that or send them little bits and pieces and snippets that might be useful, it makes a huge difference. Because our high school experience was really quite amazing. They were really able to take on board that his brain was wired differently, and they did shift the expectations and they shifted um consequences for things as well, which was you know so much that that we could - more than what we were expecting. It was just a phenomenal difference and changed his experience. So, we need to support schools while educating them, and getting it into their curriculum think is absolutely key.
Professor Elizabeth Elliott:
Right, okay, now this is the final question. Jess, someone asks, did you receive other formal diagnoses before you received a diagnosis of the FASD? and do you think this was through lack of understanding of the health professionals you saw?
Jessica Birch
Yes, in short, I did have. Yes, I did feel like it was a lack of awareness and a lack of willingness to inquire, because I had come - I was progressively appearing in my doctor's office with more and more symptoms. The symptoms were becoming more and more severe, and they - it started with, you know, migraines, gut issues, pain in my joints, debilitating fatigue, brain fog, heart palpitations. All sorts of symptoms. I had pages lists of like pages of long of symptoms, and they just were not investigated as being significant symptoms, or that the symptoms that related to each other. And so, I couldn't -I couldn't get a lot of in those initial, sort of, in the initial five years with a clinic. The clinic that I was at I floundered because I wasn't um getting that sort of care. I did - so what sort of happened to me - is that all the issues that I - but not only the cognitive issues that I was having, but also the physical issues that I was having, was blamed on anxiety and depression. I was um uh given a mental health care plan, and I went down the route of having mental health issues. Which, look, I did, but the reason I had the mental health issues is because I had unsupported, undiagnosed FASD. And so - and that experience really is very typical of many people, and I think we would all urge clinicians to think about alcohol as potential exposure in pregnancy, and to ask and really to pursue that as a possible diagnosis while excluding other causes.
Professor Elizabeth Elliott:
Look, we're going to have to wrap up now. Thank you all very much for participating and thank you Tina for helping organize today. So please visit the Hub to learn more about upcoming events and conferences. If you have any more questions for your panellists, you could contact us at contact@fasdhub.org.au
So finally thank you everyone again, and I hope you've enjoyed the webinar as much as I have and learned as much as I have and that you'll be able to enjoy it again on the Hub.