April 4, 2025 • 36 mins
Sophie Harrington is our guest for this episode. Sophie is the CEO of NOFASD Australia, the nation’s peak body supporting people and families living with Fetal Alcohol Spectrum Disorders.
NOFASD presented at the Complex Needs Conference 2025 on the complexities of this hidden disability, sharing research, therapeutic strategies and resources, in particular for health care professionals and support workers.
NOFASD Helpline 1800 860 613
ermha365 co-hosted the conference with ACSO Australia on behalf of Victoria Government’s Department of Families, Fairness and Housing (DFFH), which funded the 2-day conference.
ermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.
Helplines (Australia):
Lifeline 13 11 14
QLIFE 1800 184 527
13 YARN 13 92 76
Suicide Callback Service 1300 659 467
ermha365 acknowledges that our work in the community takes place on the Traditional Lands of many Aboriginal and Torres Strait Islander Peoples and therefore respectfully recognise their Elders, past and present, and the ongoing Custodianship of the Land and Water by all Members of these Communities.
We recognise people with lived experience who contribute to GET REAL podcast, and those who love, support and care for them. We recognise their strength, courage and unique perspective as a vital contribution so that we can learn, grow and achieve better outcomes together.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Get Real is recorded on the unceded lands of the Boon
, Wurrung and Wurundjeri peoplesof the Kulin Nation.
We acknowledge and pay ourrespects to their elders, past
and present.
We also acknowledge that theFirst Peoples of Australia are
the first storytellers, thefirst artists and the first
creators of culture and wecelebrate their enduring
(00:21):
connections to country.
Knowledge and stories celebratetheir enduring connections to
country knowledge and stories.
Speaker 2 (00:28):
Welcome to Get Real talking.
Mental health and disabilitybrought to you by the team at
Burma 365.
Speaker 3 (00:34):
Join our hosts, Emily Webb and Carenza Louis-Smith,
as we have frank and fearlessconversations with special
guests about all things mentalhealth and complexity with
special guests about all thingsmental health and complexity.
Speaker 4 (00:52):
We recognise people with lived experience of mental
ill health and disability, aswell as their families and
carers.
We recognise their strength,courage and unique perspective
as a vital contribution to thispodcast so we can learn, grow
and achieve better outcomestogether.
Speaker 3 (01:09):
Let's stop stigmatising people.
Let's stop blaming peoplebecause they consumed alcohol
and either they didn't know orthey couldn't cease at that time
.
Speaker 5 (01:22):
Welcome to Get Real talking.
Mental health and disability.
I'm Emily Webb as we recordthis.
The Complex Needs Conferencehappened last week and it was
incredible.
Erma 365, co-hosted with AXOAustralia on behalf of the
Victorian Government'sDepartment of Families, Fairness
and Housing, which funded thetwo-day conference.
There were so many fascinatingand important presentations and
(01:46):
discussions and we wanted tocapture some of these for
podcast listeners.
Now Sophie Harrington is ourguest for this episode.
Sophie is the CEO of NoFazDAustralia, the nation's peak
body supporting people andfamilies living with fetal
alcohol spectrum disorder.
Nofas-d presented at theComplex Needs Conference on the
(02:09):
complexities of this hiddendisability sharing, research,
therapeutic strategies andresources, in particular, for
healthcare professionals andsupport workers.
At IRMA 365, some of the peoplewith complex disability that we
support in the NDIS space livewith fetal alcohol spectrum
disorder, so NoFazD'spresentation was of great
(02:32):
interest to us, so let's getinto the conversation.
Welcome, Sophie.
Thank you for your time.
Speaker 3 (02:38):
Hi Emily, Thanks for having me here today.
It's a pleasure to be able tohave a chat with you and talk
through a little bit more aboutFazD and your excellent
conference that's just takenplace.
Speaker 5 (02:47):
Yeah, it was really amazing.
Such a buzz.
It was awesome to see so manypeople talking and a lot of
people know each other too inthis complex needs space.
Sophie, it was great to see noFASD at the Complex Needs
Conference.
Clinical Advisor andCoordinator Sinead Freeman and
project support officer SimoneMcHenry presented, and at the
(03:07):
same time you just got back fromSeattle where you were at the
ninth international researchconference on fetal alcohol
spectrum disorder, so tell meabout how that went.
You presented there as well.
Speaker 3 (03:19):
So, yeah, it was a wonderful opportunity.
I was there speaking to acouple of different
presentations one on behalf ofno Fasdy, australia, as part of
the Every Moment Matterscampaign, which is an awareness
campaign around pregnancy,alcohol planning a pregnancy and
realising the risks ofpotential alcohol exposure in
(03:40):
those early weeks and throughout, as well as breastfeeding and
the risks that can be involvedthere as well, and that was a
fabulous presentation to be ableto actually talk to
international audience about howpowerful and impactful the
Australian campaign has been ledby the Foundation for Alcohol
Research and Education.
The other presentation was anhour presentation to a really
(04:02):
busy room, which I was pleasedto see, and that was looking at
FASD and stigma and talkingabout how a diagnosis of FASD is
a pathway to understanding andsupport.
It's not a label, it's a way ofactually explaining why
somebody has the brain-basedsymptoms that they do and how to
provide them support andgetting it out there talking
(04:22):
about it.
Let's get rid of this stigmathat is related to FASD.
Speaker 5 (04:26):
There are two main functions of no FASD, and you
touched on them just before.
So it's to prevent alcoholexposed pregnancies and improve
the quality of life for peopleimpacted by the condition.
So, firstly, how does fetalalcohol spectrum disorder impact
the lives of people?
Can you talk to your ownexperience with your son too,
(04:48):
because your lived experience isa really powerful part of your
involvement with NoFazD?
Speaker 3 (04:54):
Yeah, yeah, absolutely.
And I mean as an organisation,nofazd Australia have been in
Australia for more than 25 yearsnow as the national voice, so
for living and lived experience,really at the forefront of
advocacy and education andsupport for individuals and
families affected by FASD, asyou've rightly just said, and a
lot of the work that we'reinvolved in, and certainly a lot
(05:14):
in the space where I share mystory, it's really helping
people to understand that we'recomfortable talking about
alcohol, we're comfortableconsuming alcohol and I say we
as the, the royal, we as asocietal group in australia.
It's part of our culture livinghere and you may detect an
english accent coming from theuk yeah, 20 odd years ago, also
(05:36):
part of the culture, and youknow it's celebrated, it's used
for commiseration, we talk aboutit very openly.
We came out of covid withministers referencing you.
Now we can go for a pint andthings like that.
So it's on the national stage.
It's embedded in everything wedo.
But as soon as alcohol is seenas a concern, it's turned into
(05:57):
the person's problem, if youlike, and I say that in inverted
commas.
It's no longer seen as thefault of alcohol, as a highly
addictive substance.
It's seen that somebody has aproblem with it.
It's no longer seen as thefault of alcohol, as a highly
addictive substance.
It's seen that somebody has aproblem with it and it's on them
.
And I think I'm just reallykeen to have that conversation
and talk about it more widely,because the reality is that
prenatal alcohol exposurehappens more often than not,
(06:20):
when people don't know they'repregnant and therefore FASD
often doesn't get diagnoseduntil much later in life.
And for those who do have adiagnosis earlier, it's
generally because it's seen thatthe behavioral symptoms of
their brain-based disability arebeing shown in society.
They're having suchdifficulties in terms of impulse
(06:43):
control, being able to controlemotions they have.
And I'm saying and I'mgeneralising but often
individuals with FASD will havewhat's called age dismaturity.
So you know they could be an18-year-old but their emotional
regulation, their behaviours andhow they present their
communication skills may all befar, far younger, maybe even
(07:04):
half their typical chronologicalage, and we're very accepting.
I think of that when somebody'sa child.
But when they become an adultor an adolescent, it's really
hard to manage what we see asthe behaviours because an
individual doesn't have thesupports in place.
So I'm really open about talkingabout my family story and I
joined NoFansD over seven yearsago and I, like many, had come
(07:28):
to the organisation thinking Iknew a fair bit about FazD,
having worked in the justicesector, out-of-home care sector,
aod sector.
And I came to the organisationand I othered FazD and yet this
whole time I've been parentingmy eldest son, who's my eldest
biological child.
I have two beautiful boys andmy eldest son was exposed to
(07:48):
alcohol before I knew I waspregnant Six and a half weeks
was confirmation but it neverhad occurred to me, nor had it
ever occurred to any of theclinicians that I spoke with,
that he could have beenprenatally alcohol exposed.
It just wasn't on my mindbecause I didn't drink or didn't
consume alcohol throughout mypregnancy, and that's because I
had the knowledge, I had theinformation that to consume
(08:12):
alcohol could be risky todeveloping fetus.
I didn't truly know why, butwhat I did know is that I wasn't
planning to consume alcoholwhen I was pregnant but fell,
fortunately, pregnant veryquickly.
So I share that story verypublicly now.
Speaker 5 (08:25):
To be honest, everyone I know who didn't
realise I was pregnant in theearly weeks has said, oh my God,
like I had like a massive nightor I've got two children myself
and I wasn't drinking at thetime I got pregnant.
But I actually didn't realisethat FASD could impact at that
(08:50):
early stage, because so manypeople don't realise they're
pregnant and might have had acouple of big nights or a few
glasses of champagne.
So that's actually quiterevealing to me.
Speaker 3 (09:02):
It is, I hope, and I should say that our NoFazD
Australia helpline will bementioned and in the show notes
at the end.
So just for anyone who islistening now, as a bio mum
myself who came across therealisation whilst I was doing
my research to present atraining session for NoFazD, I
will just acknowledge that thereare many feelings that go with
(09:23):
the realisation that your childcould be affected by alcohol
exposure and, as you say, emily,I mean generally sort of
pregnancy symptoms are notrecognised until about five or
six weeks, especially ifsomebody isn't planning at that
stage to be pregnant, and atleast 40% of pregnancies in
Australia are unplanned orunintended.
So the likelihood of theincidence of alcohol-exposed
(09:45):
pregnancies being far greaterthan we ever talk about and the
risk and the ongoingmisdiagnosis or missed diagnosis
with FASD is really very commonand this is why I'm so
passionate about speaking out.
It's why I'm so passionateabout sharing my story, not in
any way to make anyone feel anysense of guilt or concern, but
(10:07):
for my family, for me, for myhusband and my son and my
younger son.
We now have some form ofvalidation when we realised why
his behavioural symptoms couldbe as they were presenting.
There's a phrase that's coinedin the FASD world around.
It's not that an individualwon't do something, it's that
they can't.
And you know I'm talking aboutspecific scenarios, not a person
(10:30):
in general.
Obviously, our children andadults living with FASD have
most amazing strengths andskills, but there's also areas
you know that society expectpeople to be able to do certain
things that maybe they can't.
And understanding it's abrain-based disability, a whole
of body.
Brain-based disability, Ishould say, because it's more
complex than just neurologicalimpact.
(10:52):
You know, the more weunderstand and the more we can
actually look at FASDdifferently and realise that you
know what, when people aresupported, when early
intervention is in place, it canmake a major difference to
outcomes for everybody.
Speaker 5 (11:05):
So when was it that you went down the road of trying
to find out what was happeningwith your son and, yeah, like,
how did you come to think thatfetal alcohol spectrum disorder
could have been part of that?
Speaker 3 (11:19):
I'd worked with families who had children with
FASD.
But a number of the individualsI'd been engaged with and I'd
been around had had a number ofsevere or difficult life
outcomes and circumstances.
We just happened to be luckyand I use that terminology.
Lucky because we didn't have abackground of intergenerational
(11:40):
trauma or we weren't living withbackground of intergenerational
trauma or we weren't livingwith trauma.
We had stability, just purelycircumstantial.
We weren't dealing with poverty, we weren't dealing with, you
know, whether we would have adomestic violence situation.
We didn't.
We had so many protectivefactors that we didn't realize.
So our son's behaviours hadbeen, on the whole, had been
managed reasonably well.
(12:01):
Again, luck.
And for us, he was 12 when Ijoined no Fasd Australia and it
was then when I kind of having alittle bit of a joke with a
colleague and saying oh my gosh,my son fits so many of these
different areas and he's got allof these different challenges.
But I didn't consume alcoholwhen I was pregnant because I
too, as you just said beforeEmily, never really thought
(12:22):
about those early weeks.
It wasn't in my mind at thetime.
So it was a startling reality.
It was a moment of recognitionand recollection of talking to
my GP on pregnancy confirmationand actually telling him at the
time that there had been acouple of exposures, I mean my
son's alcohol exposure.
From memory and we know ourmemories are imperfect would
(12:43):
probably have been about threeor four occasions of binge
drinking.
So in our culture that would bemore than four standard drinks,
more than four glasses of 100mils of wine.
Speaker 5 (12:51):
I know, and most, let's face it, most people have
more than that when they're outdrinking.
Speaker 3 (12:56):
I don't think it'd be too untypical for a large
percentage.
For sure you know so he was bythe time we went down the path
of having the recognition.
It was two years to get a fulldiagnosis.
He had seen other cliniciansacross the years for a specific
learning disorder, which hedidn't have.
But I was able to look back atthat report with new insight and
(13:23):
think, oh my gosh, well, forfor FASD, there are 10 brain
domains that are assessed andthree need to be severely
impaired for a diagnosis of FASD.
Now he already had two that hadbeen assessed as severely
impaired.
So I was thinking, okay,there's a few things adding up
here.
So we we then took him for aspeech pathology assessment and
he had severe languageimpairment in his receptive
language.
That would never have beensomething I was aware of.
(13:44):
I wasn't a clinician, I wasn'tclinically trained, and he was
very verbal.
His expressive language wasfantastic.
So we weren't looking forsomething that was there and
hidden in plain sight, I guess.
Speaker 5 (13:56):
Wow, that's so interesting and it highlights
that you even need a little bitof awareness to sort of cotton
on to that and a lot of people,I'm guessing, don't know much
about it.
And I'm going to ask about thepublic education and health
promotion.
I've certainly seen informationabout alcohol use in pregnancy
from, like, the state governmentor the federal government.
(14:16):
I'm sure that I probably gotinformation when I was pregnant
with my daughters I was pregnantwith one of them in the UK and
I can remember the NHS had somestuff and that there's no safe
amount.
But to be honest, that justwent over my head because I'm
like, oh, surely it's fine tohave a little bit like, come on,
do you think people understandthis and what are the challenges
(14:39):
that you've found about raisingpublic awareness about alcohol
use and pregnancy?
Speaker 3 (14:45):
I think, if I'm honest, I think a big part of it
is our love affair with alcohol.
And I think you know, we knowthat the alcohol companies and
I'm not getting at alcoholcompanies they have a product
and they want to sell it, butthey have billions of dollars
that can go into targeting thepeople they want to target.
(15:05):
And you know I'm not using theright terminology, but women
were seen as a gap in the marketabout 20 years ago because they
didn't consume the same levelsas the male population.
So you know there's been a lotmore strategic direction around
promoting alcohol to women overthe last two decades.
I think alcohol is soacceptable, it's available, it's
(15:28):
affordable.
You know I wouldn't use asubstance that this is my
personal choice.
I wouldn't use a substance thatwas not seen as being
acceptable or legal in society.
Alcohol was and is, andtherefore it didn't occur to me
that it was.
I should probably give a littlebit of context to that as well.
A year before we even thoughtabout me ceasing birth control,
(15:50):
I stopped smoking and my smokingwas that I would smoke on a
Friday night with alcohol when Idrank.
So I stopped that part of mybehavior a year before I even
thought about coming off birthcontrol because I had that
public health message.
Yeah, the messaging now and Ithink it's really important to
look at the messaging now isfrom 2020,.
The National Health and MedicalResearch Council updated the
(16:13):
guidelines around alcohol andpregnancy.
So it does clearly say now thatthere is no alcohol to be
consumed, and that's about whenyou're planning as well.
Say now that there is noalcohol to be consumed, and
that's about when you'replanning as well.
And thankfully, there'semerging research and just being
at the conference in Seattlerecently as well, where we're
talking more and more about thepaternal impacts of alcohol
exposure.
So not to say that that causesFASD, but the fact that having
(16:37):
good quality sperm that has notbeen exposed to alcohol is a
protective factor for the fetusas well.
So the message now is reallythree months before you start to
think about conceiving, malesand females should avoid alcohol
completely or, if they can'tavoid alcohol completely, access
some supports to be able tohelp them on that journey for
(16:57):
harm minimization.
We just don't have thatinformation out there, so you,
the more we can talk about it,and opportunities talking with
you, emily, are great to be ableto really push that forward.
Speaker 5 (17:06):
Yeah, I know there's advice you know about, like not
wearing tight undies, you know,help your sperm be free.
But that's actually reallyinteresting.
I didn't realise that either.
And also I think it's importantbecause so much blame or
pressure is on the person who ispregnant.
You know the mother of thechild or the person who's
(17:26):
pregnant.
It's actually good to hear thatthe dads they have to look
after their sperms.
You know if you're planning ababy.
And yeah, when you mentionedthe smoking, I can remember with
our second daughter we werekind of like, oh yeah, maybe
maybe not, and I was having.
Look, I'll be honest, I wasoccasionally having a cheeky
(17:47):
cigarette and I had some.
Yeah, I can remember.
Then I found out I was like, ohGod, yeah.
So I just think it probablyhappens a lot more than we think
.
It's just people don't want totalk about it because you don't
want to be judged.
Speaker 3 (18:03):
Yeah, and something like you've just said there,
emily.
Something that's quite common ispeople will say, oh well, I
drank when I was pregnant and mybabies are fine and my children
are fine, and you know what.
This is the case and this is whyit's a Russian roulette,
because people can have healthypregnancies.
They may have consumed the oddalcoholic drink throughout their
pregnancy or, you know,cigarette, like you've just said
then, and there may be noapparent impacts.
(18:25):
And the thing is, those storiesare compared with people, like
my story, for example, where Iconsume the amount of alcohol
that some people may not thinkwould have been too impactful,
but the binge drinking episodesare the parts that really have a
massive difference.
It's really important Ihighlight that the public health
message is zero, because thereis no proof to say that anything
(18:46):
more than zero is going to beokay.
There is proof in animal modelstudies to say that even one
drink can cause a change,doesn't cause FASD, but can
cause a change to thatdeveloping fetus.
So prenatal alcohol exposure isnever a good thing, but some
people may not be as impacted asothers.
We don't know at this pointthrough research why my
(19:07):
pregnancy, as an example, wouldhave been more impacted than
some.
But because we don't know, wecan't take that risk.
Speaker 5 (19:14):
Wow, I am genuinely.
I had no idea.
I thought I knew a little bitabout it, but I had no idea.
So is there research happeningto try and see, like, why some
people it may happen, why someothers?
I mean, still, I guess themessage is you know, no alcohol
during pregnancy.
But are there studies happening?
Speaker 3 (19:35):
Oh, you know there's a lot that happens in the space
around looking at genetics andDNA and the expression of DNA
like I would do it an injusticeto try and quantify that and
qualify that better without theresearch background.
But certainly there is morehappening in that space.
The bigger, broader, widerissue really is to talk about
(19:55):
our relationship with alcoholand the removing the stigma that
comes with alcohol exposure inpregnancy.
And you know, I don't knowanybody personally and I haven't
heard stories either wheresomebody has intentionally
consumed alcohol to cause alifelong disability in their
child.
The reality is people eitherconsume alcohol because they
(20:18):
don't know they're pregnant,they consume alcohol without
knowing the risks, or they havea dependency or misuse disorder
and they need wraparound supportand telling someone don't drink
is not helpful when they haveand must have support to help
them on that journey.
And I should just say, ifanyone were to be listening
today that is struggling withalcohol dependency or a misuse
(20:41):
disorder, to cease alcoholimmediately if you are pregnant
or could be pregnant is verydangerous for the person who's
consuming and also the baby.
So really important to getmedical advice as soon as
possible.
Speaker 5 (20:55):
That's a really important message because so
often, as you said earlier,misuse or dependency becomes
that person's problem ratherthan looking at all the reasons
why that person might bedependent on alcohol or a
substance.
So I'm really glad you saidthat.
Now.
Is fetal alcohol spectrumdisorder hard to diagnose?
(21:17):
I was reading information onyour website excellent website
that it can look like ADHD orautism.
It can look like a few things.
So is this a challenge todiagnosis?
Speaker 3 (21:29):
Yeah, and that's a really good question, emily,
because the crossover betweenthe brain domains for assessment
for fetal alcohol spectrumdisorder and for autism and for
ADHD do cross over in several ofthe different domains and what
tends to happen and again I'mgeneralising, but a lot of you
(21:50):
know this is not the clinician'sfault, this is not anybody's
fault.
It's about information, it'sabout knowledge, it's about
raising awareness.
The senate inquiry that tookplace and was released in 2021,
I think it was now after thefindings that came out from that
there's something like 33recommendations.
Just in December last year, theAustralian Government
Department of Health and AgedCare released their response to
(22:12):
those findings, and a couple ofthose findings were that
information and knowledge aroundassessment of FASD and looking
for FASD amongst generalpopulation as well, doesn't
exist in the allied healthdegrees.
So somebody may, with all goodintention, have completed a
psychology degree with afabulous remit of content, but
(22:34):
the amount of content aroundFASD would have been minimal and
therefore and I just pickpsychologist as one profession,
but it's similar for equallyacross allied health professions
in terms of the knowledgethat's not embedded.
So when it comes to the case ofassessing for FASD, somebody
either may not be looking for it.
They may not be familiar withit, they may not have actually
(22:55):
experienced the assessmentprocess to work through for
diagnosis.
This is why it's really, reallyimportant for everybody to stay
up to date.
There are courses diagnosticcourses that are run in
different locations around thecountry no, fasd Australia and
the FASD Hub have our websitesthat people you know.
These days I don't need to giveout a website address Google,
(23:17):
fasd Hub, google, no FASDAustralia and you'll be able to
find more information and getreally the support that's needed
.
And I cannot encourage anybodyenough, but particularly
families who think that perhapsthey have a diagnosis for one
particular disorder ordisability, but the
interventions, the strategiesand the approaches aren't
(23:38):
actually meeting the needs ofthat person.
It's really worth consideringthe next step of do we need to
look further Because it'scommonly missed or co-diagnosed
with other disorders?
Speaker 5 (23:49):
And so healthcare professionals, as you said, like
Allied Health, who interactwith children and adults who
need services, so to be speechpathology, OTs, I guess GPs I
have read a fair bit, I think.
Where I have read about FASD,it's often where children are in
foster care and then it becomesapparent.
(24:10):
That's probably the articlesI've seen, but I guess it's a
whole breadth of people whoprobably need to get more
informed.
Speaker 3 (24:17):
Absolutely.
Knowfazd Australia was part ofthe Every Moment Matters
campaign, which I've mentioned.
That was led by FAIR.
We were involved in one of thestreams particularly, which was
stream two, and that was toproduce very baseline
information for the out-of-homecare sector and that's that are
diagnosed.
You know, it's really importantthat people working in those
(24:43):
professions are aware because,sadly, managing the behavioral
symptoms of a child with FASDwho then become an adult can be
incredibly challenging for acarer who does not know the
differences and how they canaccommodate and work with that
individual to really improve thehome scenario and the outcomes
for that child and I say childbecause we're talking out of
(25:05):
home care and equally, so manypeople in the justice system.
You know, one WA study, whichwas back from 2018, but is
representative as a sample, was36% of the individuals that were
currently detained at that timehad a FASD diagnosis after the
intensive assessment processthat was undertaken there.
Speaker 5 (25:24):
I had thought, as you were talking I'm like I bet
there's a lot of people withFASD in jail or going through
courts.
Speaker 3 (25:33):
Yeah, absolutely, and the impacts of the alcohol on
the brain as it develops fromthose very early stages and
throughout the pregnancy.
It affects those areas of youknow, being able to manage
emotions and big emotions andhave you know, in inverted
commas, appropriate responsesthat are needed at the age and
stage of an individual.
(25:54):
It relies on having, you know,good communication skills and
communication is often an areathat's really impacted because
of language, but because ofreceptive processes, auditory
processing, cognition, beingable to manage in different
environments, like there'simpulse attention.
There's so many areas that areimpacted which, if you know an
(26:15):
individual with FASD eachindividual is different.
My son would present verydifferently to the next person.
So it's about really beingopen-hearted, open-minded and
actually being inquisitive inorder to be able to support
somebody and help provide someof those early interventions to
avoid some of those secondaryconditions later on in life.
Speaker 5 (26:35):
Yeah, and of course, I guess the frustration that
someone with FASD has about notbeing able to communicate or how
they're processing informationthat comes out in challenging
behaviours.
And you know, it's aboutunderstanding why.
I'm not a professional, I'm acomms person, but I've learnt
this from working at Irma.
about you know, yeah, which isgreat, but you know, on the face
(26:56):
of it, people would go, oh myGod, you know, like that
behaviour, it's unacceptable,and that's the thing where
people need to understand more.
It's the why, isn't it?
What are the support andadvocacy needs for families and
carers that you see with yourwork and from your own personal
experience?
Because, as you've mentioned afew times, there is a lot of
stigma that comes with it.
You know, external and alsointernalised.
Speaker 3 (27:19):
Yeah, there's so many different supports that really
are just adjusting our lens, howwe see individuals and families
through that makes a massivedifference.
As a biological mum, as afamily of a teenager who has
FASD, really what we needed andI speak to many families who
would say the same is forsomebody to ask the question in
(27:40):
the early stages if they had hadthe knowledge to do so, when
they're building a picturearound history of a pregnancy
and then looking at potentialoutcomes, really being
courageous to include thatquestion around alcohol exposure
as part of a normal historygathering of information.
You know, lifestyle before,lifestyle during, lifestyle
(28:03):
after all of those thingsexercise, smoking, alcohol,
nutrition, trauma impacts allthose sorts of things.
So there's that part of theequation.
I think the area we findourselves advocating for a lot
of the time is with healthprofessionals who may not be
FASD informed.
We've got some amazing healthprofessionals that we engage
(28:23):
with, some really amazing peoplewho really get it and can help
in that space from a point ofview of diagnosis, but from the
perspective of being able to putin supports that work for the
individuals.
I think a key factor, you knowbeing an organisation that's the
voice of families andindividuals for over 25 years.
A big space we find is thatparents and caregivers aren't
(28:45):
listened to.
They may be sharing theirexperiences and trying to advise
.
Let's pick a profession, aneducator within the school, who
has a very busy time, who hasmany children in their class,
but the family really trying totalk about what interventions
might help or what challengesthey're seeing for their child.
So we do see a lot in thatspace and we get involved of
(29:07):
needing to write letters toschools to support families, to
help individual teachers, butdepartments to better understand
the challenges and the supportsneeded for individuals, Equally
with the NDIS.
You know ndis has been afabulous scheme for many,
including for many who live withfasd.
But it's the burden of beingable to provide evidence and
(29:29):
really needing to do to the nthdegree with fasd, which isn't
necessarily the case with manyother disabilities, and we often
find ourselves in a space ofhaving to support families
through, you know, being deniedaccess to the NDIS despite
having a lifelong disabilitywhich would just present
differently across the lifespan.
Speaker 5 (29:47):
It sounds like a lot and I think family life's busy
and then you've got to do allthis stuff and it costs money
and it takes time and it justsounds like your organisation
does such great work.
25 years old, it's going strong.
So where are we at now?
With no FASD Australia?
Speaker 3 (30:05):
Thanks for asking that question because, having
just moved into the hot seat ofbeing the CEO just a month ago.
Thank you.
Having been with theorganisation for a while, I've
been very blessed to be able tobe mentored by Louise Gray,
who's the CEO, who's recentlyleft, and by a fantastic board
who are very FASD informed andhave a real range of backgrounds
(30:28):
and experiences.
For me, the vision, and for usas an organisation, is to
continue with our core visionand mission, which is around
reducing alcohol-exposedpregnancies and around
supporting families to have thebest quality of life.
As part of that, a big piecethat I want to be working for as
we move into the next few yearsis around advocacy.
In a much greater extent, it'sa role that's been embedded
(30:52):
within a number of our roles inthe organisation, and my hope is
that we can actually push morein that direction so that we can
have a louder voice.
As a biological mum myself, I'vebeen speaking for the last few
years and recently have startedto add more that I'm a
biological mum, as opposed toleaving that part out of the
story, and the only reason Ileft that part out was to
(31:14):
protect my son, because thatwasn't something he wanted
shared.
Whenever I talk publicly, I doshare the story of being a
biological mum.
I don't carry.
I won't say I don't carry theguilt.
That would be telling fibs.
There's always going to beguilt because it was something
that could have been preventedhad I have had that knowledge.
But my passion is aboutsupporting other families, other
(31:36):
women, other partners and theindividuals to really make sure
that we're bringing this out ofthe closet.
Let's stop hiding, let's stopstigmatising people, let's stop
blaming people because theyconsumed alcohol and either they
didn't know or they couldn'tcease at that time.
So my mission really is todrive hard on that stigma, to
(31:58):
get it out there.
Because if we talk about mentalhealth concerns, you know,
you've just been involved in theComplex Needs Conference, which
was a wonderful event, and 15years ago people were scared to
talk about mental health andthen, when it came out into the
public domain, it became okay,thank goodness.
And now we need to do that withFASD.
(32:19):
Let's stop blaming people,let's just support, let's move
forward.
So that's a really big push andgoal for me and for the
organisation over the next fewyears.
Speaker 5 (32:29):
Well, you have a friend with us at Irma365 and I
agree, I think that most people,everyone's just trying to do
the best they can, and what youjust said is really important,
because what's the point inblaming someone like that's not
going to help anything.
Is there anything, as we wrapup, that we haven't covered in
this conversation, that you'dlike to share, and definitely
(32:51):
share the details of thehelpline, which I will
definitely put in the show notes?
Speaker 3 (32:56):
I think we just need to normalise the conversations.
I think that's the key.
I think when individuals arediagnosed early, when it is
recognized, when really you know, on the no FASD website and on
the FASD hub there's a languageguide, and I think in the media,
in the public forum, talkingabout FASD and talking about
prenatal alcohol exposure andmaking sure we do that in a way
(33:19):
that we are talking about thealcohol, we're not talking about
the, we're not talking aboutthe woman, we're not talking
about the blame, we're talkingabout misinformation or lack of
support and I think reallythat's absolutely key to get
across to everybody.
And individuals with FASD canlive really productive, really
happy, really positive lives.
But we do need to change ourthinking and we need to make
(33:43):
sure we are putting theappropriate scaffolding and
supports in place to make thathappen.
I will just give that helplinenumber so it's heard as well as
seen in the notes.
So the NoFazD helpline isavailable seven days a week and
that's a 1-800 number.
It's 1-800-860-613.
And, as I say, google NoFaz,fasd.
(34:03):
Many families, particularly ifthey think there could be a
potential that their child hasbeen exposed to alcohol, will
often go to the website first,look at some of the resources
and then give us a call, butthey need to know that that
helpline is there for them andfor everybody, and that includes
practitioners, serviceproviders to find out more, to
come and talk to us.
And, emily, I think you and Ishould be looking at a future
(34:26):
joint webinar of somedescription with complex needs.
Speaker 5 (34:29):
I think definitely, because I've learned a lot.
That's what I'll say, and Idon't work on the front line,
but I love supporting the workthat Irma365 does in the complex
needs space and you know it'sso important to get the message
out there.
So I will be sharing NoFazDAustralia stuff all over our
social media and I just want tosay a massive thank you to you
(34:50):
and good luck in your new roleas CEO.
How long have you been in thehot seat?
Speaker 3 (34:55):
I was coming up a month, so it's pretty fresh.
Oh, you've been to Seattle.
Speaker 5 (34:59):
Oh my gosh, and you're doing podcasts and wow,
okay, you've been busy.
The website nofasdorgau andthat's n-o-f-a-s-dorgau, it's
got so much information, factsheets, your own podcast
episodes, loads of stuff.
It really is a place to go tofind out more.
(35:20):
And, for our listeners, if youhave been affected by anything
in this episode, you can callLifeline on 13, 11, 14, but you
can also call the no FASDAustralia helpline.
Sophie, tell me again1-800-860-613.
Excellent, and that is for alot of things, for support
(35:41):
around.
No FASD, isn't it?
Speaker 3 (35:43):
Absolutely there for everybody and anyone and
confidential, so important toknow.
And, emily, one thing I didn'tsay and I should say as a bit of
a call to action is that inSeptember we now call that FASD
Awareness Month.
We make a big month of it andwe join with many partners
around the country to make thathappen.
So if you see anything lit upin red in September,
(36:04):
particularly around the 9th ofSeptember, representing the nine
months of pregnancy, on theninth day of the ninth month,
then please do take photos,visit our social media.
That's how we get the messageout there is through social
media.
So please do and tag us so thatwe can share your post too.
Speaker 5 (36:22):
Brilliant.
I'll be all over that.
I'm going to put a note in mycalendar.
Awesome, thank you.
I've really really found thisconversation fascinating, sophie
, and I think our listeners willtoo, and, of course, the people
who heard the organisation atthe conference.
So thanks again for your time.
Speaker 3 (36:39):
Thank you, Emily.
Really love the fact we've gotthis platform All the best.
Speaker 2 (36:43):
You've been listening to Get Real talking mental
health and disability, broughtto you by the team at Irma 365.
Get Real is produced andpresented by Emily Webb, with
Corenza Louis-Smith and specialguests.
Thanks for listening and we'llsee you next time.
Get Real is recorded on the unceded lands of the Boon
, Wurrung and Wurundjeri peoplesof the Kulin Nation.
We acknowledge and pay ourrespects to their elders, past
and present.
We also acknowledge that theFirst Peoples of Australia are
the first storytellers, thefirst artists and the first
creators of culture and wecelebrate their enduring
(00:21):
connections to country.
Knowledge and stories celebratetheir enduring connections to
country knowledge and stories.
Speaker 2 (00:28):
Welcome to Get Real talking.
Mental health and disabilitybrought to you by the team at
Burma 365.
Speaker 3 (00:34):
Join our hosts, Emily Webb and Carenza Louis-Smith,
as we have frank and fearlessconversations with special
guests about all things mentalhealth and complexity with
special guests about all thingsmental health and complexity.
Speaker 4 (00:52):
We recognise people with lived experience of mental
ill health and disability, aswell as their families and
carers.
We recognise their strength,courage and unique perspective
as a vital contribution to thispodcast so we can learn, grow
and achieve better outcomestogether.
Speaker 3 (01:09):
Let's stop stigmatising people.
Let's stop blaming peoplebecause they consumed alcohol
and either they didn't know orthey couldn't cease at that time
.
Speaker 5 (01:22):
Welcome to Get Real talking.
Mental health and disability.
I'm Emily Webb as we recordthis.
The Complex Needs Conferencehappened last week and it was
incredible.
Erma 365, co-hosted with AXOAustralia on behalf of the
Victorian Government'sDepartment of Families, Fairness
and Housing, which funded thetwo-day conference.
There were so many fascinatingand important presentations and
(01:46):
discussions and we wanted tocapture some of these for
podcast listeners.
Now Sophie Harrington is ourguest for this episode.
Sophie is the CEO of NoFazDAustralia, the nation's peak
body supporting people andfamilies living with fetal
alcohol spectrum disorder.
Nofas-d presented at theComplex Needs Conference on the
(02:09):
complexities of this hiddendisability sharing, research,
therapeutic strategies andresources, in particular, for
healthcare professionals andsupport workers.
At IRMA 365, some of the peoplewith complex disability that we
support in the NDIS space livewith fetal alcohol spectrum
disorder, so NoFazD'spresentation was of great
(02:32):
interest to us, so let's getinto the conversation.
Welcome, Sophie.
Thank you for your time.
Speaker 3 (02:38):
Hi Emily, Thanks for having me here today.
It's a pleasure to be able tohave a chat with you and talk
through a little bit more aboutFazD and your excellent
conference that's just takenplace.
Speaker 5 (02:47):
Yeah, it was really amazing.
Such a buzz.
It was awesome to see so manypeople talking and a lot of
people know each other too inthis complex needs space.
Sophie, it was great to see noFASD at the Complex Needs
Conference.
Clinical Advisor andCoordinator Sinead Freeman and
project support officer SimoneMcHenry presented, and at the
(03:07):
same time you just got back fromSeattle where you were at the
ninth international researchconference on fetal alcohol
spectrum disorder, so tell meabout how that went.
You presented there as well.
Speaker 3 (03:19):
So, yeah, it was a wonderful opportunity.
I was there speaking to acouple of different
presentations one on behalf ofno Fasdy, australia, as part of
the Every Moment Matterscampaign, which is an awareness
campaign around pregnancy,alcohol planning a pregnancy and
realising the risks ofpotential alcohol exposure in
(03:40):
those early weeks and throughout, as well as breastfeeding and
the risks that can be involvedthere as well, and that was a
fabulous presentation to be ableto actually talk to
international audience about howpowerful and impactful the
Australian campaign has been ledby the Foundation for Alcohol
Research and Education.
The other presentation was anhour presentation to a really
(04:02):
busy room, which I was pleasedto see, and that was looking at
FASD and stigma and talkingabout how a diagnosis of FASD is
a pathway to understanding andsupport.
It's not a label, it's a way ofactually explaining why
somebody has the brain-basedsymptoms that they do and how to
provide them support andgetting it out there talking
(04:22):
about it.
Let's get rid of this stigmathat is related to FASD.
Speaker 5 (04:26):
There are two main functions of no FASD, and you
touched on them just before.
So it's to prevent alcoholexposed pregnancies and improve
the quality of life for peopleimpacted by the condition.
So, firstly, how does fetalalcohol spectrum disorder impact
the lives of people?
Can you talk to your ownexperience with your son too,
(04:48):
because your lived experience isa really powerful part of your
involvement with NoFazD?
Speaker 3 (04:54):
Yeah, yeah, absolutely.
And I mean as an organisation,nofazd Australia have been in
Australia for more than 25 yearsnow as the national voice, so
for living and lived experience,really at the forefront of
advocacy and education andsupport for individuals and
families affected by FASD, asyou've rightly just said, and a
lot of the work that we'reinvolved in, and certainly a lot
(05:14):
in the space where I share mystory, it's really helping
people to understand that we'recomfortable talking about
alcohol, we're comfortableconsuming alcohol and I say we
as the, the royal, we as asocietal group in australia.
It's part of our culture livinghere and you may detect an
english accent coming from theuk yeah, 20 odd years ago, also
(05:36):
part of the culture, and youknow it's celebrated, it's used
for commiseration, we talk aboutit very openly.
We came out of covid withministers referencing you.
Now we can go for a pint andthings like that.
So it's on the national stage.
It's embedded in everything wedo.
But as soon as alcohol is seenas a concern, it's turned into
(05:57):
the person's problem, if youlike, and I say that in inverted
commas.
It's no longer seen as thefault of alcohol, as a highly
addictive substance.
It's seen that somebody has aproblem with it.
It's no longer seen as thefault of alcohol, as a highly
addictive substance.
It's seen that somebody has aproblem with it and it's on them
.
And I think I'm just reallykeen to have that conversation
and talk about it more widely,because the reality is that
prenatal alcohol exposurehappens more often than not,
(06:20):
when people don't know they'repregnant and therefore FASD
often doesn't get diagnoseduntil much later in life.
And for those who do have adiagnosis earlier, it's
generally because it's seen thatthe behavioral symptoms of
their brain-based disability arebeing shown in society.
They're having suchdifficulties in terms of impulse
(06:43):
control, being able to controlemotions they have.
And I'm saying and I'mgeneralising but often
individuals with FASD will havewhat's called age dismaturity.
So you know they could be an18-year-old but their emotional
regulation, their behaviours andhow they present their
communication skills may all befar, far younger, maybe even
(07:04):
half their typical chronologicalage, and we're very accepting.
I think of that when somebody'sa child.
But when they become an adultor an adolescent, it's really
hard to manage what we see asthe behaviours because an
individual doesn't have thesupports in place.
So I'm really open about talkingabout my family story and I
joined NoFansD over seven yearsago and I, like many, had come
(07:28):
to the organisation thinking Iknew a fair bit about FazD,
having worked in the justicesector, out-of-home care sector,
aod sector.
And I came to the organisationand I othered FazD and yet this
whole time I've been parentingmy eldest son, who's my eldest
biological child.
I have two beautiful boys andmy eldest son was exposed to
(07:48):
alcohol before I knew I waspregnant Six and a half weeks
was confirmation but it neverhad occurred to me, nor had it
ever occurred to any of theclinicians that I spoke with,
that he could have beenprenatally alcohol exposed.
It just wasn't on my mindbecause I didn't drink or didn't
consume alcohol throughout mypregnancy, and that's because I
had the knowledge, I had theinformation that to consume
(08:12):
alcohol could be risky todeveloping fetus.
I didn't truly know why, butwhat I did know is that I wasn't
planning to consume alcoholwhen I was pregnant but fell,
fortunately, pregnant veryquickly.
So I share that story verypublicly now.
Speaker 5 (08:25):
To be honest, everyone I know who didn't
realise I was pregnant in theearly weeks has said, oh my God,
like I had like a massive nightor I've got two children myself
and I wasn't drinking at thetime I got pregnant.
But I actually didn't realisethat FASD could impact at that
(08:50):
early stage, because so manypeople don't realise they're
pregnant and might have had acouple of big nights or a few
glasses of champagne.
So that's actually quiterevealing to me.
Speaker 3 (09:02):
It is, I hope, and I should say that our NoFazD
Australia helpline will bementioned and in the show notes
at the end.
So just for anyone who islistening now, as a bio mum
myself who came across therealisation whilst I was doing
my research to present atraining session for NoFazD, I
will just acknowledge that thereare many feelings that go with
(09:23):
the realisation that your childcould be affected by alcohol
exposure and, as you say, emily,I mean generally sort of
pregnancy symptoms are notrecognised until about five or
six weeks, especially ifsomebody isn't planning at that
stage to be pregnant, and atleast 40% of pregnancies in
Australia are unplanned orunintended.
So the likelihood of theincidence of alcohol-exposed
(09:45):
pregnancies being far greaterthan we ever talk about and the
risk and the ongoingmisdiagnosis or missed diagnosis
with FASD is really very commonand this is why I'm so
passionate about speaking out.
It's why I'm so passionateabout sharing my story, not in
any way to make anyone feel anysense of guilt or concern, but
(10:07):
for my family, for me, for myhusband and my son and my
younger son.
We now have some form ofvalidation when we realised why
his behavioural symptoms couldbe as they were presenting.
There's a phrase that's coinedin the FASD world around.
It's not that an individualwon't do something, it's that
they can't.
And you know I'm talking aboutspecific scenarios, not a person
(10:30):
in general.
Obviously, our children andadults living with FASD have
most amazing strengths andskills, but there's also areas
you know that society expectpeople to be able to do certain
things that maybe they can't.
And understanding it's abrain-based disability, a whole
of body.
Brain-based disability, Ishould say, because it's more
complex than just neurologicalimpact.
(10:52):
You know, the more weunderstand and the more we can
actually look at FASDdifferently and realise that you
know what, when people aresupported, when early
intervention is in place, it canmake a major difference to
outcomes for everybody.
Speaker 5 (11:05):
So when was it that you went down the road of trying
to find out what was happeningwith your son and, yeah, like,
how did you come to think thatfetal alcohol spectrum disorder
could have been part of that?
Speaker 3 (11:19):
I'd worked with families who had children with
FASD.
But a number of the individualsI'd been engaged with and I'd
been around had had a number ofsevere or difficult life
outcomes and circumstances.
We just happened to be luckyand I use that terminology.
Lucky because we didn't have abackground of intergenerational
(11:40):
trauma or we weren't living withbackground of intergenerational
trauma or we weren't livingwith trauma.
We had stability, just purelycircumstantial.
We weren't dealing with poverty, we weren't dealing with, you
know, whether we would have adomestic violence situation.
We didn't.
We had so many protectivefactors that we didn't realize.
So our son's behaviours hadbeen, on the whole, had been
managed reasonably well.
(12:01):
Again, luck.
And for us, he was 12 when Ijoined no Fasd Australia and it
was then when I kind of having alittle bit of a joke with a
colleague and saying oh my gosh,my son fits so many of these
different areas and he's got allof these different challenges.
But I didn't consume alcoholwhen I was pregnant because I
too, as you just said beforeEmily, never really thought
(12:22):
about those early weeks.
It wasn't in my mind at thetime.
So it was a startling reality.
It was a moment of recognitionand recollection of talking to
my GP on pregnancy confirmationand actually telling him at the
time that there had been acouple of exposures, I mean my
son's alcohol exposure.
From memory and we know ourmemories are imperfect would
(12:43):
probably have been about threeor four occasions of binge
drinking.
So in our culture that would bemore than four standard drinks,
more than four glasses of 100mils of wine.
Speaker 5 (12:51):
I know, and most, let's face it, most people have
more than that when they're outdrinking.
Speaker 3 (12:56):
I don't think it'd be too untypical for a large
percentage.
For sure you know so he was bythe time we went down the path
of having the recognition.
It was two years to get a fulldiagnosis.
He had seen other cliniciansacross the years for a specific
learning disorder, which hedidn't have.
But I was able to look back atthat report with new insight and
(13:23):
think, oh my gosh, well, forfor FASD, there are 10 brain
domains that are assessed andthree need to be severely
impaired for a diagnosis of FASD.
Now he already had two that hadbeen assessed as severely
impaired.
So I was thinking, okay,there's a few things adding up
here.
So we we then took him for aspeech pathology assessment and
he had severe languageimpairment in his receptive
language.
That would never have beensomething I was aware of.
(13:44):
I wasn't a clinician, I wasn'tclinically trained, and he was
very verbal.
His expressive language wasfantastic.
So we weren't looking forsomething that was there and
hidden in plain sight, I guess.
Speaker 5 (13:56):
Wow, that's so interesting and it highlights
that you even need a little bitof awareness to sort of cotton
on to that and a lot of people,I'm guessing, don't know much
about it.
And I'm going to ask about thepublic education and health
promotion.
I've certainly seen informationabout alcohol use in pregnancy
from, like, the state governmentor the federal government.
(14:16):
I'm sure that I probably gotinformation when I was pregnant
with my daughters I was pregnantwith one of them in the UK and
I can remember the NHS had somestuff and that there's no safe
amount.
But to be honest, that justwent over my head because I'm
like, oh, surely it's fine tohave a little bit like, come on,
do you think people understandthis and what are the challenges
(14:39):
that you've found about raisingpublic awareness about alcohol
use and pregnancy?
Speaker 3 (14:45):
I think, if I'm honest, I think a big part of it
is our love affair with alcohol.
And I think you know, we knowthat the alcohol companies and
I'm not getting at alcoholcompanies they have a product
and they want to sell it, butthey have billions of dollars
that can go into targeting thepeople they want to target.
(15:05):
And you know I'm not using theright terminology, but women
were seen as a gap in the marketabout 20 years ago because they
didn't consume the same levelsas the male population.
So you know there's been a lotmore strategic direction around
promoting alcohol to women overthe last two decades.
I think alcohol is soacceptable, it's available, it's
(15:28):
affordable.
You know I wouldn't use asubstance that this is my
personal choice.
I wouldn't use a substance thatwas not seen as being
acceptable or legal in society.
Alcohol was and is, andtherefore it didn't occur to me
that it was.
I should probably give a littlebit of context to that as well.
A year before we even thoughtabout me ceasing birth control,
(15:50):
I stopped smoking and my smokingwas that I would smoke on a
Friday night with alcohol when Idrank.
So I stopped that part of mybehavior a year before I even
thought about coming off birthcontrol because I had that
public health message.
Yeah, the messaging now and Ithink it's really important to
look at the messaging now isfrom 2020,.
The National Health and MedicalResearch Council updated the
(16:13):
guidelines around alcohol andpregnancy.
So it does clearly say now thatthere is no alcohol to be
consumed, and that's about whenyou're planning as well.
Say now that there is noalcohol to be consumed, and
that's about when you'replanning as well.
And thankfully, there'semerging research and just being
at the conference in Seattlerecently as well, where we're
talking more and more about thepaternal impacts of alcohol
exposure.
So not to say that that causesFASD, but the fact that having
(16:37):
good quality sperm that has notbeen exposed to alcohol is a
protective factor for the fetusas well.
So the message now is reallythree months before you start to
think about conceiving, malesand females should avoid alcohol
completely or, if they can'tavoid alcohol completely, access
some supports to be able tohelp them on that journey for
(16:57):
harm minimization.
We just don't have thatinformation out there, so you,
the more we can talk about it,and opportunities talking with
you, emily, are great to be ableto really push that forward.
Speaker 5 (17:06):
Yeah, I know there's advice you know about, like not
wearing tight undies, you know,help your sperm be free.
But that's actually reallyinteresting.
I didn't realise that either.
And also I think it's importantbecause so much blame or
pressure is on the person who ispregnant.
You know the mother of thechild or the person who's
(17:26):
pregnant.
It's actually good to hear thatthe dads they have to look
after their sperms.
You know if you're planning ababy.
And yeah, when you mentionedthe smoking, I can remember with
our second daughter we werekind of like, oh yeah, maybe
maybe not, and I was having.
Look, I'll be honest, I wasoccasionally having a cheeky
(17:47):
cigarette and I had some.
Yeah, I can remember.
Then I found out I was like, ohGod, yeah.
So I just think it probablyhappens a lot more than we think
.
It's just people don't want totalk about it because you don't
want to be judged.
Speaker 3 (18:03):
Yeah, and something like you've just said there,
emily.
Something that's quite common ispeople will say, oh well, I
drank when I was pregnant and mybabies are fine and my children
are fine, and you know what.
This is the case and this is whyit's a Russian roulette,
because people can have healthypregnancies.
They may have consumed the oddalcoholic drink throughout their
pregnancy or, you know,cigarette, like you've just said
then, and there may be noapparent impacts.
(18:25):
And the thing is, those storiesare compared with people, like
my story, for example, where Iconsume the amount of alcohol
that some people may not thinkwould have been too impactful,
but the binge drinking episodesare the parts that really have a
massive difference.
It's really important Ihighlight that the public health
message is zero, because thereis no proof to say that anything
(18:46):
more than zero is going to beokay.
There is proof in animal modelstudies to say that even one
drink can cause a change,doesn't cause FASD, but can
cause a change to thatdeveloping fetus.
So prenatal alcohol exposure isnever a good thing, but some
people may not be as impacted asothers.
We don't know at this pointthrough research why my
(19:07):
pregnancy, as an example, wouldhave been more impacted than
some.
But because we don't know, wecan't take that risk.
Speaker 5 (19:14):
Wow, I am genuinely.
I had no idea.
I thought I knew a little bitabout it, but I had no idea.
So is there research happeningto try and see, like, why some
people it may happen, why someothers?
I mean, still, I guess themessage is you know, no alcohol
during pregnancy.
But are there studies happening?
Speaker 3 (19:35):
Oh, you know there's a lot that happens in the space
around looking at genetics andDNA and the expression of DNA
like I would do it an injusticeto try and quantify that and
qualify that better without theresearch background.
But certainly there is morehappening in that space.
The bigger, broader, widerissue really is to talk about
(19:55):
our relationship with alcoholand the removing the stigma that
comes with alcohol exposure inpregnancy.
And you know, I don't knowanybody personally and I haven't
heard stories either wheresomebody has intentionally
consumed alcohol to cause alifelong disability in their
child.
The reality is people eitherconsume alcohol because they
(20:18):
don't know they're pregnant,they consume alcohol without
knowing the risks, or they havea dependency or misuse disorder
and they need wraparound supportand telling someone don't drink
is not helpful when they haveand must have support to help
them on that journey.
And I should just say, ifanyone were to be listening
today that is struggling withalcohol dependency or a misuse
(20:41):
disorder, to cease alcoholimmediately if you are pregnant
or could be pregnant is verydangerous for the person who's
consuming and also the baby.
So really important to getmedical advice as soon as
possible.
Speaker 5 (20:55):
That's a really important message because so
often, as you said earlier,misuse or dependency becomes
that person's problem ratherthan looking at all the reasons
why that person might bedependent on alcohol or a
substance.
So I'm really glad you saidthat.
Now.
Is fetal alcohol spectrumdisorder hard to diagnose?
(21:17):
I was reading information onyour website excellent website
that it can look like ADHD orautism.
It can look like a few things.
So is this a challenge todiagnosis?
Speaker 3 (21:29):
Yeah, and that's a really good question, emily,
because the crossover betweenthe brain domains for assessment
for fetal alcohol spectrumdisorder and for autism and for
ADHD do cross over in several ofthe different domains and what
tends to happen and again I'mgeneralising, but a lot of you
(21:50):
know this is not the clinician'sfault, this is not anybody's
fault.
It's about information, it'sabout knowledge, it's about
raising awareness.
The senate inquiry that tookplace and was released in 2021,
I think it was now after thefindings that came out from that
there's something like 33recommendations.
Just in December last year, theAustralian Government
Department of Health and AgedCare released their response to
(22:12):
those findings, and a couple ofthose findings were that
information and knowledge aroundassessment of FASD and looking
for FASD amongst generalpopulation as well, doesn't
exist in the allied healthdegrees.
So somebody may, with all goodintention, have completed a
psychology degree with afabulous remit of content, but
(22:34):
the amount of content aroundFASD would have been minimal and
therefore and I just pickpsychologist as one profession,
but it's similar for equallyacross allied health professions
in terms of the knowledgethat's not embedded.
So when it comes to the case ofassessing for FASD, somebody
either may not be looking for it.
They may not be familiar withit, they may not have actually
(22:55):
experienced the assessmentprocess to work through for
diagnosis.
This is why it's really, reallyimportant for everybody to stay
up to date.
There are courses diagnosticcourses that are run in
different locations around thecountry no, fasd Australia and
the FASD Hub have our websitesthat people you know.
These days I don't need to giveout a website address Google,
(23:17):
fasd Hub, google, no FASDAustralia and you'll be able to
find more information and getreally the support that's needed
.
And I cannot encourage anybodyenough, but particularly
families who think that perhapsthey have a diagnosis for one
particular disorder ordisability, but the
interventions, the strategiesand the approaches aren't
(23:38):
actually meeting the needs ofthat person.
It's really worth consideringthe next step of do we need to
look further Because it'scommonly missed or co-diagnosed
with other disorders?
Speaker 5 (23:49):
And so healthcare professionals, as you said, like
Allied Health, who interactwith children and adults who
need services, so to be speechpathology, OTs, I guess GPs I
have read a fair bit, I think.
Where I have read about FASD,it's often where children are in
foster care and then it becomesapparent.
(24:10):
That's probably the articlesI've seen, but I guess it's a
whole breadth of people whoprobably need to get more
informed.
Speaker 3 (24:17):
Absolutely.
Knowfazd Australia was part ofthe Every Moment Matters
campaign, which I've mentioned.
That was led by FAIR.
We were involved in one of thestreams particularly, which was
stream two, and that was toproduce very baseline
information for the out-of-homecare sector and that's that are
diagnosed.
You know, it's really importantthat people working in those
(24:43):
professions are aware because,sadly, managing the behavioral
symptoms of a child with FASDwho then become an adult can be
incredibly challenging for acarer who does not know the
differences and how they canaccommodate and work with that
individual to really improve thehome scenario and the outcomes
for that child and I say childbecause we're talking out of
(25:05):
home care and equally, so manypeople in the justice system.
You know, one WA study, whichwas back from 2018, but is
representative as a sample, was36% of the individuals that were
currently detained at that timehad a FASD diagnosis after the
intensive assessment processthat was undertaken there.
Speaker 5 (25:24):
I had thought, as you were talking I'm like I bet
there's a lot of people withFASD in jail or going through
courts.
Speaker 3 (25:33):
Yeah, absolutely, and the impacts of the alcohol on
the brain as it develops fromthose very early stages and
throughout the pregnancy.
It affects those areas of youknow, being able to manage
emotions and big emotions andhave you know, in inverted
commas, appropriate responsesthat are needed at the age and
stage of an individual.
(25:54):
It relies on having, you know,good communication skills and
communication is often an areathat's really impacted because
of language, but because ofreceptive processes, auditory
processing, cognition, beingable to manage in different
environments, like there'simpulse attention.
There's so many areas that areimpacted which, if you know an
(26:15):
individual with FASD eachindividual is different.
My son would present verydifferently to the next person.
So it's about really beingopen-hearted, open-minded and
actually being inquisitive inorder to be able to support
somebody and help provide someof those early interventions to
avoid some of those secondaryconditions later on in life.
Speaker 5 (26:35):
Yeah, and of course, I guess the frustration that
someone with FASD has about notbeing able to communicate or how
they're processing informationthat comes out in challenging
behaviours.
And you know, it's aboutunderstanding why.
I'm not a professional, I'm acomms person, but I've learnt
this from working at Irma.
about you know, yeah, which isgreat, but you know, on the face
(26:56):
of it, people would go, oh myGod, you know, like that
behaviour, it's unacceptable,and that's the thing where
people need to understand more.
It's the why, isn't it?
What are the support andadvocacy needs for families and
carers that you see with yourwork and from your own personal
experience?
Because, as you've mentioned afew times, there is a lot of
stigma that comes with it.
You know, external and alsointernalised.
Speaker 3 (27:19):
Yeah, there's so many different supports that really
are just adjusting our lens, howwe see individuals and families
through that makes a massivedifference.
As a biological mum, as afamily of a teenager who has
FASD, really what we needed andI speak to many families who
would say the same is forsomebody to ask the question in
(27:40):
the early stages if they had hadthe knowledge to do so, when
they're building a picturearound history of a pregnancy
and then looking at potentialoutcomes, really being
courageous to include thatquestion around alcohol exposure
as part of a normal historygathering of information.
You know, lifestyle before,lifestyle during, lifestyle
(28:03):
after all of those thingsexercise, smoking, alcohol,
nutrition, trauma impacts allthose sorts of things.
So there's that part of theequation.
I think the area we findourselves advocating for a lot
of the time is with healthprofessionals who may not be
FASD informed.
We've got some amazing healthprofessionals that we engage
(28:23):
with, some really amazing peoplewho really get it and can help
in that space from a point ofview of diagnosis, but from the
perspective of being able to putin supports that work for the
individuals.
I think a key factor, you knowbeing an organisation that's the
voice of families andindividuals for over 25 years.
A big space we find is thatparents and caregivers aren't
(28:45):
listened to.
They may be sharing theirexperiences and trying to advise
.
Let's pick a profession, aneducator within the school, who
has a very busy time, who hasmany children in their class,
but the family really trying totalk about what interventions
might help or what challengesthey're seeing for their child.
So we do see a lot in thatspace and we get involved of
(29:07):
needing to write letters toschools to support families, to
help individual teachers, butdepartments to better understand
the challenges and the supportsneeded for individuals, Equally
with the NDIS.
You know ndis has been afabulous scheme for many,
including for many who live withfasd.
But it's the burden of beingable to provide evidence and
(29:29):
really needing to do to the nthdegree with fasd, which isn't
necessarily the case with manyother disabilities, and we often
find ourselves in a space ofhaving to support families
through, you know, being deniedaccess to the NDIS despite
having a lifelong disabilitywhich would just present
differently across the lifespan.
Speaker 5 (29:47):
It sounds like a lot and I think family life's busy
and then you've got to do allthis stuff and it costs money
and it takes time and it justsounds like your organisation
does such great work.
25 years old, it's going strong.
So where are we at now?
With no FASD Australia?
Speaker 3 (30:05):
Thanks for asking that question because, having
just moved into the hot seat ofbeing the CEO just a month ago.
Thank you.
Having been with theorganisation for a while, I've
been very blessed to be able tobe mentored by Louise Gray,
who's the CEO, who's recentlyleft, and by a fantastic board
who are very FASD informed andhave a real range of backgrounds
(30:28):
and experiences.
For me, the vision, and for usas an organisation, is to
continue with our core visionand mission, which is around
reducing alcohol-exposedpregnancies and around
supporting families to have thebest quality of life.
As part of that, a big piecethat I want to be working for as
we move into the next few yearsis around advocacy.
In a much greater extent, it'sa role that's been embedded
(30:52):
within a number of our roles inthe organisation, and my hope is
that we can actually push morein that direction so that we can
have a louder voice.
As a biological mum myself, I'vebeen speaking for the last few
years and recently have startedto add more that I'm a
biological mum, as opposed toleaving that part out of the
story, and the only reason Ileft that part out was to
(31:14):
protect my son, because thatwasn't something he wanted
shared.
Whenever I talk publicly, I doshare the story of being a
biological mum.
I don't carry.
I won't say I don't carry theguilt.
That would be telling fibs.
There's always going to beguilt because it was something
that could have been preventedhad I have had that knowledge.
But my passion is aboutsupporting other families, other
(31:36):
women, other partners and theindividuals to really make sure
that we're bringing this out ofthe closet.
Let's stop hiding, let's stopstigmatising people, let's stop
blaming people because theyconsumed alcohol and either they
didn't know or they couldn'tcease at that time.
So my mission really is todrive hard on that stigma, to
(31:58):
get it out there.
Because if we talk about mentalhealth concerns, you know,
you've just been involved in theComplex Needs Conference, which
was a wonderful event, and 15years ago people were scared to
talk about mental health andthen, when it came out into the
public domain, it became okay,thank goodness.
And now we need to do that withFASD.
(32:19):
Let's stop blaming people,let's just support, let's move
forward.
So that's a really big push andgoal for me and for the
organisation over the next fewyears.
Speaker 5 (32:29):
Well, you have a friend with us at Irma365 and I
agree, I think that most people,everyone's just trying to do
the best they can, and what youjust said is really important,
because what's the point inblaming someone like that's not
going to help anything.
Is there anything, as we wrapup, that we haven't covered in
this conversation, that you'dlike to share, and definitely
(32:51):
share the details of thehelpline, which I will
definitely put in the show notes?
Speaker 3 (32:56):
I think we just need to normalise the conversations.
I think that's the key.
I think when individuals arediagnosed early, when it is
recognized, when really you know, on the no FASD website and on
the FASD hub there's a languageguide, and I think in the media,
in the public forum, talkingabout FASD and talking about
prenatal alcohol exposure andmaking sure we do that in a way
(33:19):
that we are talking about thealcohol, we're not talking about
the, we're not talking aboutthe woman, we're not talking
about the blame, we're talkingabout misinformation or lack of
support and I think reallythat's absolutely key to get
across to everybody.
And individuals with FASD canlive really productive, really
happy, really positive lives.
But we do need to change ourthinking and we need to make
(33:43):
sure we are putting theappropriate scaffolding and
supports in place to make thathappen.
I will just give that helplinenumber so it's heard as well as
seen in the notes.
So the NoFazD helpline isavailable seven days a week and
that's a 1-800 number.
It's 1-800-860-613.
And, as I say, google NoFaz,fasd.
(34:03):
Many families, particularly ifthey think there could be a
potential that their child hasbeen exposed to alcohol, will
often go to the website first,look at some of the resources
and then give us a call, butthey need to know that that
helpline is there for them andfor everybody, and that includes
practitioners, serviceproviders to find out more, to
come and talk to us.
And, emily, I think you and Ishould be looking at a future
(34:26):
joint webinar of somedescription with complex needs.
Speaker 5 (34:29):
I think definitely, because I've learned a lot.
That's what I'll say, and Idon't work on the front line,
but I love supporting the workthat Irma365 does in the complex
needs space and you know it'sso important to get the message
out there.
So I will be sharing NoFazDAustralia stuff all over our
social media and I just want tosay a massive thank you to you
(34:50):
and good luck in your new roleas CEO.
How long have you been in thehot seat?
Speaker 3 (34:55):
I was coming up a month, so it's pretty fresh.
Oh, you've been to Seattle.
Speaker 5 (34:59):
Oh my gosh, and you're doing podcasts and wow,
okay, you've been busy.
The website nofasdorgau andthat's n-o-f-a-s-dorgau, it's
got so much information, factsheets, your own podcast
episodes, loads of stuff.
It really is a place to go tofind out more.
(35:20):
And, for our listeners, if youhave been affected by anything
in this episode, you can callLifeline on 13, 11, 14, but you
can also call the no FASDAustralia helpline.
Sophie, tell me again1-800-860-613.
Excellent, and that is for alot of things, for support
(35:41):
around.
No FASD, isn't it?
Speaker 3 (35:43):
Absolutely there for everybody and anyone and
confidential, so important toknow.
And, emily, one thing I didn'tsay and I should say as a bit of
a call to action is that inSeptember we now call that FASD
Awareness Month.
We make a big month of it andwe join with many partners
around the country to make thathappen.
So if you see anything lit upin red in September,
(36:04):
particularly around the 9th ofSeptember, representing the nine
months of pregnancy, on theninth day of the ninth month,
then please do take photos,visit our social media.
That's how we get the messageout there is through social
media.
So please do and tag us so thatwe can share your post too.
Speaker 5 (36:22):
Brilliant.
I'll be all over that.
I'm going to put a note in mycalendar.
Awesome, thank you.
I've really really found thisconversation fascinating, sophie
, and I think our listeners willtoo, and, of course, the people
who heard the organisation atthe conference.
So thanks again for your time.
Speaker 3 (36:39):
Thank you, Emily.
Really love the fact we've gotthis platform All the best.
Speaker 2 (36:43):
You've been listening to Get Real talking mental
health and disability, broughtto you by the team at Irma 365.
Get Real is produced andpresented by Emily Webb, with
Corenza Louis-Smith and specialguests.
Thanks for listening and we'llsee you next time.
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