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Alcohol Clin Exp Res. 2025;49:1042–1052.wileyonlinelibrary.com/journal/acer
Received: 24 October 2024
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Accepted: 12 March 2025
DOI : 10.1111/acer.70 040
RESEARCH ARTICLE
Fetal alcohol spectrum disorder identification in Australia:
A qualitative analysis of perspectives from psychologists and
individuals with lived and living experience
Katherine L. Kerimofski | Kirsten R. Panton | Grace Kuen Yee Tan | Carmela F. Pestell
This is an op en access article under the ter ms of the Creative Commons Attribution License, which pe rmits use, distribution and reproduction in any medium,
provide d the original wor k is properly cited.
© 2025 The Author(s). Alcohol, Clinical and Experiment al Research published by Wiley Periodic als LLC on behalf of Research Societ y on Alcohol.
School of Psychological Science,
University of Western Aus tralia, Crawley,
Western Australia, Australia
Correspondence
Kather ine L. Kerimofski, Sch ool of
Psychological Science, University of
Western Australia, 35 Stirling Highway,
Crawley, WA 60 09, Australia.
Email: katherine.kerimofski@research.
uwa.edu.au
Abstract
Background: Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental disor-
der associated with prenatal alcohol exposure (PAE). In Australia, there are several
barriers to assessment, including a limited number of FASD- informed clinicians. This
study aimed to understand the perspectives of psychologists, parents, caregivers, and
adults with FASD on the current assessment process, as well as methods to improve
FASD training and universal screening of PAE.
Methods: Two groups of (1) psychologists and (2) parents, caregivers, and adults with
FASD were interviewed about their experiences of FASD assessment and their rec-
ommend at ions for tr aining and univers al screen ing of PAE. Th ematic anal ysis was em-
ployed to code data.
Results: Five key themes were identified: (1) stigma and stereotypes of PAE, (2) sup-
port for universal screening of PAE, (3) differential, co- occurring, and missed diag-
noses, (4) lack of support following diagnosis, and (5) need for improved training for
psychologists. Stereotypes of women who drink were present across themes, with
both groups discussing the importance of PAE assessment for all women during an-
tenatal care and when presenting for assessment of neurodevelopmental disorders.
The importance of training more FASD- informed clinicians who can understand the
uniqueness of each individual with FASD was highlighted, with hopes of improving
diagnostic capacity as well as support offered by psychologists.
Conclusions: Recognition of the impact of PAE is growing in Australia; however, there
is a need to embed this topic within university training for psychologists.
KEYWORDS
assessment, FASD, lived experience, ND- PAE, PAE, universal screening
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EXPERIENCES AND PERSPECTIVES OF FASD ASSESSMENT
INTRODUCTION
Experiences and perspectives of fetal alcohol
spectrum disorder assessment
Prenatal alcohol exposure (PAE) is an environmental risk factor for
the development of fetal alcohol spectrum disorder (FASD; Bower
et al., 2016). Alcohol acts as a teratogenic agent and can have ad-
verse and varying impacts on a developing fetus depending on the
amount, frequency, and timing of consumption, as well as maternal
factors, such as age, genetics, body composition, and metabolism
of alcohol (Aiton, 2021; Bower et al., 2017). There is no safe limit of
PAE established in the literature, and the risk of harm to the fetus
is higher with increased frequency and amount of PAE (National
Health and Medical Research Council, 2020).
In Austr alia, FASD is a re cog n ize d dis abili t y, with the Au str alian
Guidelines for Assessment and Diagnosis of FASD (Bower
et al., 2016) currently under review following initial stakeholder
consultation (Hayes et al., 2022) and public consultation in April
2024 (FASD Hub Australia, 2024). The esti mat ed glob a l pr eva len ce
of FA SD is 7.7 case s per 1000 in divid ua ls in the ge neral popu la tion
(Lange et al., 2017; Popova et al., 2017, 2018). In Australia, higher
prevalence rates have been established in a juvenile justice setting
(36%; Bower et al., 2018) and in one rem ote Ab or iginal community
(12%; Fitzpatrick et al., 2015), with some calls for focused screen-
ings for FASD in these populations, as well as children in out- of-
home care (Fogliani, 2019; Popova et al., 2023). It is important to
note FASD can occur in families from all types of cultural back-
grounds and psychosocial contexts (Bower et al., 2017; Connor
et al., 2020).
It has recently been established that Australian psychologists
are broadly familiar with FASD as a diagnostic term and are aware
there is no safe time or amount of alcohol to consume in preg-
nancy (Kerimofski et al., 2024). However, the majority of these
ps yc h olo gi s ts wer e not conf ide nt in th eir ab ili t y to as ses s PAE , and
de spi te fe eli ng mor e con fid ent in thei r abilit y to ap ply th e dia gno s-
tic criteria for other neurodevelopmental disorders compared with
FASD, they were largely unaware of clinical guidelines, as well as
state and federal government recommendations to screen for PAE
in assessments for intellectual disability (ID), learning difficulties,
and behavioral concerns (FASD Model of Care, Department of
Health, State of WA, 2010; National FASD Strategic Action Plan
2018–2028, Department of Health, 2018; Kerimofski et al., 2024).
Despite the well- established link bet ween PAE and disruption to
neurodevelopment (DeJong et al., 2019), Australian psychologists
surveyed reported not wanting to shame the biological mother
and not knowing how to assess for PAE as the main reasons
for not asking about PAE during clinical interviews (Kerimofski
et al., 2024).
Stigma and stereotypes have developed about biological moth-
ers and individuals with FASD (Roozen et al., 2020), including pub-
lic stigma about biological mothers being seen as morally culpable
(Roozen et al., 2020) and some condemned as “child abusers” who
“lack empathy” (Corrigan et al., 2019, p. 172). This stigma is also seen
in the false stereotype that FASD is solely an “Indigenous problem”
(Jandu Yani U Project Team, 2019, p. 8). The National Drug Strategy
Household Survey [NDSHS] 2022–2023 (2024) highlighted that al-
cohol consumption in pregnancy is declining in Australia, from 42%
of women aged 14–49 in 2013 to 28% in 2022–2023. Of those who
consumed alcohol in pregnancy, most did not know they were preg-
nant, but 15% continued to consume alcohol once aware of their
pregnancy (NSDHSD, 2024). Women who continued to consume
alcohol in pregnancy tended to be older, have higher incomes, edu-
cation, and socioeconomic status (Anderson et al., 2013; Hutchinson
et al., 2013; Kingsbury et al., 2015; McCormack et al., 2017).
There are a number of barriers to FASD assessment and diag-
nosis, including the aforementioned public stigma (Bell et al., 2016;
Howlett et al., 2019; Mukherjee et al., 2015), as well as a lack of
sufficient training in FASD (McCormack et al., 2022), limited diag-
nostic capacity (Commonwealth of Australia, 2021) and limited
referral pathways (Panton et al., 2022). A further difficulty in diag-
nosing FASD is the overlap with other neurodevelopmental condi-
tions (Tanfield et al., 2024). Attention deficit hyperactivity disorder
(ADHD) is the most common comorbid neurodevelopmental dis-
order (52.9%; Lange et al., 2018), followed by ID (23%; Weyrauch
et al., 2017). Autism was found to be comorbid with FASD at a 2.9%
rate (Lange et al., 2018), although this may be an underrepresenta-
tion as a recent meta- analysis indicated this figure could be closer to
7% when looking at individuals who have PAE but no FASD diagnosis
(Clark et al., 2024). Chasnoff et al. (2015) studied children who were
fostered and adopted and found that 80% of children had a missed
diagnosis of FASD, with their PAE unrecognized prior to the study's
multidisciplinary assessments.
Individuals with FASD, as well as their parents and caregivers,
have expertise in their lives and offer valuable insights into the
assessment process and ways to improve service delivery. Hayes
et al. (2023) conducted a systematic review of studies based on
lived experiences of FASD diagnostic assessments with four over-
arching topics: (1) preassessment concerns and challenges, (2) the
diagnostic assessment process, (3) receipt of the diagnosis, and (4)
postassessment adaptations and needs. It was often reported that
while caregivers were proactive in recognizing concerning behaviors
and contacting health professionals, their concerns were frequently
dismissed, and FASD was not considered or acknowledged by health
professionals. Misconceptions about FASD and PAE by clinicians
were reported in seven studies in Hayes et al. (2023) and stereo-
types about facial features delayed FASD diagnosis. Despite barriers
to accessing FASD assessment and feelings of grief and shame for
some, families also report a sense of hope and relief, with benefits,
including improved understanding of their child, as well as being
a means to access appropriate and individualized support (Hayes
et al., 2023).
By interviewing Australian psychologists, as well as the parents,
caregivers, and adults who have lived experience of the assessment
process, we aimed to better understand the current landscape of
clinical practice assessing PAE and FASD. While lived experiences of
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KERIMOFSKI et al .
FASD assessment have been studied (Hayes et al., 2023), the perspec-
tives of psychologists conducting the assessment s have been missed.
By interviewing both groups, we aimed to integrate the perspectives
and knowledge to understand current practices within Australia, in
order to identify potential training gaps for psychologists.
MATERIALS AND METHODS
Research design
A semi- structured interview guide was developed to examine con-
temporary lived experiences of FASD assessment, as well as the ex-
periences of psychologists with FASD assessment. Semi- structured
interviews comprised three main areas: (a) experiences with FASD
and PAE ass essme nt , (b) trainin g ne eds for psy ch ologist s, an d (c) pe r-
spectives on universal screening of PAE.
Guiding questions are available in Appendix S1. These questions
were guided by and expanded on the existing literature exploring
attitudes of clinicians and those with lived and living experience of
FASD assessment (Bagley & Badry, 20 19; Bell et al., 2016; Corrigan
et al., 2017, 2019; Crawford- Williams et al., 2015a, 2015b; Kerimofs ki
et al., 2024; Roozen et al., 2020). Questions and themes from these
studies were reviewed, and a consensus decision was made about
the interview questions. Additionally, a question was developed re-
garding universal screening of PAE following a recommendation for
screening during infant health assessments and upon children enter-
ing child protection and justice systems from a coronial investigation
in WA highlighting the link between FASD and suicide (Fogliani, 2019).
Participants were interviewed through video calls, which were
recorded and transcribed, then analyzed with NVivo. The re-
search was undertaken with ethics approval from the UWA Human
Research Ethics Committee (2021/ET0 00667).
Participants
The study had two groups of par ticipants: (1) psychologist partici-
pants (PP) and (2) lived/living experience participants (LEP), includ-
ing people with FASD and parents/caregivers who experienced the
FASD assessment process. PP were recruited via professional net-
works, including past and present students of a graduate training
program for FASD diagnosis in Australia, the Australia New Zealand
FASD Clinical Network, LinkedIn, Facebook psycholog y groups, and
the University research repository page of the co- authors. LEP were
recruited via the National Organisation for Fetal Alcohol Spectrum
Disorders (NOFASD Australia) and were a mixture of biological par-
ents, caregivers, and individuals with lived and living experience of
FAS D and FAS D ass essme nt. NOFASD Aust ral ia runs a pare nt , care r,
and individuals with lived experience Expert Advisory Group (PEAG)
with members asked whether they would like to participate in the
project. These members were contacted, and additional people with
lived experience were recruited via professional networks.
Par ticipants were 10 psychologists and nine people with lived ex-
perience, biological parents, caregivers, and adults with FASD. One
psychologist also had lived experience as a caregiver and was inter-
viewed with both sets of questions. In the Lived Experience group,
there were two adults with FASD, seven caregivers of a child or chil-
dren with FASD, and one biological parent of a child or children with
FASD. Two members with lived experience identified as Aboriginal,
and no psycho logists identified as Ab original or Torres Strait Islander.
Data collection
Participants received an information sheet that prefaced the inter-
view information to be collected prior to their interviews. Verbal
consent was obtained prior to the interview and recording, in ad-
dition to completing a separate consent form and answering demo-
graphic questions via Qualtrics. Data collection from this study is
part of a larger project, and demographics were collected to com-
pare responses. Participants answered open- ended questions, and
interviews lasted approximately 1 h. Lived experience participants
received a $50 e- gift card to reimburse them for their time.
Data analysis
Interview recordings were transcribed and de- identified. NVivo was
used to analyze inter view responses and code for themes. Thematic
analysis (Braun & Clarke, 2006) was employed, with six phases: (1)
data familiarization, (2) generating initial codes, (3) searching for
themes, (4) reviewing themes, (5) defining and naming themes, and
(6) producing the report. Team members collaborated on coding,
with two team members (KK & KP) independently coding two ques-
tions for all participants (approximately 30 per cent of the data cor-
pus) and achieving an agreement goal of group consensus through
intensive discussion (Harry et al., 2005).
RESULTS
Results are presented across five key themes for PP and LEP: (1) stigma
and stereotypes of PAE, (2) support for universal screening of PAE,
(3) differential, co- occurring, and missed diagnoses, (4) lack of support
fo llow i ng di agno s is, an d (5) nee d fo r imp roved tr a ini n g for psyc hol ogis t s.
Stigma and stereotypes of PAE
It's ac tually much more prevalent than you might
think. It does not just occur in Aboriginal people. And
there are … the sort of like Champagne triangle of the
upper- class white women that think that it's OK to
drink during pregnancy.
(PP4)
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EXPERIENCES AND PERSPECTIVES OF FASD ASSESSMENT
The myths and stereotypes about drinking in pregnancy were
discussed by both groups of participants. Participants were well in-
formed that “higher educated, older, higher SES women” (PP7/LE1)
were most likely to continue to drink in pregnancy. “People think
that, you know, if there's no facial features, it's not FASD. People
think it only affects low SES populations or only affects Aboriginal
populations” (PP1) “A lot of them, believe it or not, are not Aboriginal
women” (LE10).
Experiences with PAE assessment
Most psychologists reported that their current practice involves
asking about PAE as part of a medical history during a develop-
mental interview. Half of the psychologists interviewed reported
using the AUDIT- C (Bush et al., 1998) to quantify alcohol use, once
they have established rapport. Normalizing alcohol use in context
was a strategy used to understand what was happening in a per-
son's life when they became pregnant. “We tend to drink a lot. So
again, you know, I'm tr ying to so rt of norm alize the f ac t that t his is
Australian culture. There's nothing special about people drinking
a lot when they're not intending to get pregnant … that could be
any of us” (PP7/LE 1).
The experience of PAE assessment varied for biological parents
compared with caregivers. One biological mother reported informing
her GP about two or three binge drinking occasions prior to discover-
ing the pregnancy and being advised to not “drink at that level again,
now that you know you're pregnant” and then she “was never asked
again. Obviously, it was never discussed and the number of clinicians
throughout my son's first 13 years when I was asking questions, no-
body ever asked me about alcohol, and I never thought to mention it”
(LE5). For caregivers, some were aware of the biological mother's sub-
stance use (including alcohol) when their children were placed in their
care or they reported being “lucky” (LE4) that PAE was documented in
medical, police or child protec tion records. The frustrations of a lack of
documentation or birth mothers denying alcohol use due to child pro-
tec ti on concerns were also raised across both gro ups. Particip ants also
reported concern that “There are still doctors who are recommending
women have a drink. Calm your ner ves, set tle you down” (LE7).
Concerns and barriers to asking about PAE
A number of concerns and barriers were raised, including the need
to be sensitive when asking about PAE and not wanting to shame
the biological mother. Psychologists and caregivers also spoke of the
difficulties in getting confirmation about PAE, either where there
are doubts about the information provided by the bir th mother or
in cases where PAE is being confirmed through medical records or
through other family reporting on the birth mother's drinking his-
tory. “When you ask that question, did you drink during pregnancy?
… They'll often say no. And what they also mean is that the minute I
found out that I was pregnant, I stopped drinking” (PP7/LE1). “There
is a really deep problem with the birth mothers in admitting that
they drink. So a lot of people either don't believe that it's a problem.
It doesn't matter if I have a couple of glasses on the weekend, it's
not gonna matter. They don't believe the one glass can do damage
story” (LE7).
For the psychologist s working in private practice, FASD is not a
referral they report receiving. Client s will be referred with ADHD,
learning, and behavioral queries, but the possible impact of PAE is
not considered by referring families, pediatricians, or psychiatrists.
One psychologist working in the private and public sector found that
in “private practice, if I approach that question, it's kind of like, why
are you asking? …Of course not. Why would I?” (PP9). “I think that
they're very afraid, particularly with white upper- class women, to
even bring it up because these women react very poorly because
they think that it is a lower socioeconomic status Aboriginal prob-
lem in society that doesn't concern them and that could not possibly
happen to them or their child” (PP4). Some psychologists were also
actively discouraged by supervisors during their university training
to ask about PAE.
Support for universal screening of PAE
I think it should 100% be compulsory. I think that GPs
and obstetricians who do not ask this are bordering
on breaching a duty of care to an unborn child and
to a mother.
(PP4)
There was broad openness to universal screening of PAE among
both psychologists and lived experience participant s. See Figure 1
for an example of supports and barriers for universal screening of
PAE among psychologists and lived experience participants. Some
participants assumed that pregnant women are already routinely
being asked about alcohol consumption during prenatal care and
being given education about reducing PAE to minimize potential
harm. Concerns were raised about the logistics of routine screening,
with methods, such as blood tests and breathalyzers considered in-
vasive, while concerns about women being truthful in reporting their
alcohol consumption were also raised. The difficulties of recording
and sharing this information were reported as mother and child re-
cords are kept separately, and public and private systems vary con-
siderably. A protocol for obstetricians that included screening and
education about alcohol, tobacco and substance use was discussed
as ideal routine care. “I would hate to see like a potential opportunity
to prevent FASD get missed because a doctor's uncomfor table ask-
ing a hard question” (PP1).
Clinician barriers
The clinician's own relationship with alcohol was discussed as a po-
tential reason for not asking about PAE. “I think why there's so much
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KERIMOFSKI et al .
resistance is because health professionals are, they're just people
and they have their own relationship with alcohol. They probably
know people who have drunk in pregnancy, their parents probably
drank in their pregnancy. They might have had drinks while they
were pregnant. And so they're not going to go. Oh my God, this is
really harmful. This is what it does and tell other people. Because it
actually affects their own, their personal feelings about the choices
they make, and therefore so you actually have to deal with the health
professionals, personal opinions and ideas about alcohol and that's
really hard” (LE3). High risk exposure was discussed in the context of
binge drinking in Australian culture “But when you think about high
risk exposure, all you actually really need to get a 5 on the AUDIT is
1 binge drinking episode and binge drinking, you know it's less than
a lot of us would think, I guess in Australia like I know that for me it's
not unusual if I have like something on a Saturday night to have 4
glasses of wine” (PP1).
Screening in certain populations
Particular populations, such as children in care and youth involved in
the justice system, were discussed as a priority for routine screen-
ing of PAE and FASD, with participants in both groups suggesting
screening via the child health nurse in early years or as part of at-
entry school screening. The associated costs were discussed by both
groups, along with the need for a focus on education and prevention,
given the considerable costs of FASD.
Differential, co- occurring and missed diagnoses
It's been one heck of a journey. And it 's still going.
(LE10)
Both the psychologists and lived experience groups discussed
differential, comorbid and missed diagnoses. For the lived ex-
perience groups, additional diagnoses included anxiety, autism,
ADHD, intellectual disabilit y, depression, dyslexia, dysc alculia, as
well as experiences of gender dysphoria, psychosis and trauma.
Some children were diagnosed early with global developmental
delay, with caregivers reporting a reluctance on behalf of the
pediatricians to diagnose FASD and preferring to diagnose GDD
or Autism because “it's a lot easier to get that type of diagno-
sis, yeah, than it is to do the multidisciplinary approach to FASD”
(LE10).
The lived experience group participants reported early signs that
their child was not developing typically, including physical health
concerns, as well as developmental delays and difficult behavior.
Some caregivers began to question FASD early, based on known
PAE, with some children in the group diagnosed prior to starting
school. Other parents and caregivers reported “knowing there was
something” (LE5) but being dismissed by clinicians. “I was made very
much in those early years to feel like an anxious parent, a helicop-
ter parent” (LE5). “CAMHS (Child and Adolescent Mental Health
Services) just wiped it off as bad parenting” (LE7).
The sense of missed diagnoses was also reported by psychol-
ogists, who reported that “Once you've done the FASD training,
you then look back on … kids that you've worked with or done
assessments for and you kind of realize … oh yeah, I totally missed
that. This is actually FASD happening for them” (PP3). The idea
th at th e more diag nos e s a chi ld has , the mo re likel y it is to be FASD
was discussed frequently. “I think it would be good for psychol-
ogists to know, like, hey, if you have a child with this shopping
list of diagnoses that includes ADHD, language disorder, opposi-
tional defiant disorder, you know, depression, anxiety, … maybe
it's a good idea to star t thinking about FASD” (PP1). The contin-
ued stigma and varied presentation of FASD were discussed as a
FIGURE 1 Thoughts about universal screening of prenatal alcohol exposure. The overlap in the center indicates shared ideas and
concerns by both groups.
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EXPERIENCES AND PERSPECTIVES OF FASD ASSESSMENT
reason that psychologists feel other clinicians “doubt the validity
of it (FASD) as a diagnosis” (PP1).
Barriers to assessment and diagnosis
Additional difficulties of getting diagnosed included a lack of
FASD- informed clinicians, difficulties confirming PAE, and the
le ngt h of tim e it too k fro m discoveri ng PAE an d begi nni ng to quer y
FASD to getting a diagnosis. “It took five years from that point
to actually obtain the diagnosis” (LE3). For the adults with FASD,
it was particularly difficult to find clinicians that would assess
adults, as most Multidisciplinary Team (MDT) clinics in Australia
are designe d to suppor t children. The adults had to self- source as-
sessments via several different clinicians, most of whom reported
having no FASD knowledge or training. One adult was ultimately
diagnosed by a specialist pediatrician. One adult reported being
turned away by a university clinic for psychological assessment,
being told “Your case seems complex, and I don't think we can
help you” (LE2).
Diagnosing FASD and autism in aboriginal populations
Misdiagnosis of Autism and FASD was discussed by both groups,
with psychologists discussing an article by a prominent Aboriginal
psychologist that “FASD is damaging to Aboriginal communities”
(PP1). The same participant reported that “my hunch is that FASD
is probably just as common in white populations as it is in Aboriginal
populations probably just diagnosed less, but I don't think the an-
swer is like, stop diagnosing it in Aboriginal populations.” This dif-
ference in diagnostic formulation was also reported to be seen in
Pediatricians—“I've heard a couple of pediatricians say quite openly.
You know, there's a lot of non- Indigenous children with autism diag-
nosis, and yet it's strange ‘cause the strategies don't quite fit. There
seems to be so much more that's happening” (LE5).
Lack of support following diagnosis
Mixed feelings following diagnosis
For some participants, there was a sense of relief following a
FASD diagnosis, “Once I got the diagnosis and once, I unders tood
that it was outside of my control to for like certain functioning
was outside of my control and that I could get help to fix it or that
… it was a weight off my shoulders. I was deeply depressed, and
depression lifted straight away” (LE3). Others spoke of the isola-
tion, shame, and a lack of understanding from the people around
them, as well as clinicians involved in their care or the care of
their children. There was a sense that individuals were receiving
a diagnosis and then needing to find their own supports because
“their job is about assessment ” (LE4). It was widely agreed that
a diagnosis did not guarantee support, with participants citing a
lack of NDIS (National Disability Insurance Scheme) and school-
based funding. “A lot of kids don't get their plans (funding) for
FASD” (LE6).
School supports and experiences
Parents and caregivers spoke about their need to advocate for their
children, particularly in the school setting. “Unless the parent is pre-
pared to get up and actually help educate people from within the
school themselves, there's not really any stuff put into place for that
to happen” (LE10). There was a widespread lack of understanding of
FASD in schools, with parents and caregivers reporting they were
the ones to educate the teachers and school leaders about FASD
in order to support their children. Issues with engagement and sup-
portive planning were also highlighted, with a sense that because
FASD was not recognized as a funded disability across most school
systems, their children were being disadvantaged. “The school sys-
tem is not set up for them” (LE8).
School psychologists were discussed by both groups, with
varied experiences. One caregiver described them as being “so
overworked and they're not actually able to do assessments”
(LE8). Another felt that “school psychologists actually can have a
lot of influence in being able to get the right supports in place
in schooling for these kids, because schooling is such a massive
issue, it really is” (LE4). Psychologists had mixed feelings about
school psychologists conducting assessments. “I had several con-
versations with school psych(ologist)s last year who told me that
FASD did not exist, and they said it's not a thing. It's just ADHD
or it's just autism, or it's just a really complex psychiatric case.
They've probably got PTSD. And they absolutely do not think that
FASD is a condition and those children are going to be severely
disadvantaged if that's the psych(ologist) that is assessing them”
(PP4). One participant working in a school does assess for FASD
but was clear “it's not our role we've been told to hy pothe size that
it could be FASD. You would ask in the histor y taking, but it's not
our role because the sensitive nature of it, that it must come from
a medical forum first. So if I get a referral from pediatricians here,
then I will go ahead with that. But it doesn't occur the other way
around” (PP6).
Lack of support for secondary conditions associated
with FASD
One caregiver highlighted the lack of support for both individuals
and caregivers. “Lack of support for carers and parents to help
us with how to manage it. Because it is such a difficult disabil-
ity to manage. The life expectancy for these kids, for people with
FASD is 35 because they commit suicide. These are very, very at
risk people. Probably the most at risk people in the society” (LE7).
One adult highlighted the difficulty of their employer becoming
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KERIMOFSKI et al .
aware of their FASD diagnosis and the stigma and stress involved.
Additional difficulties included children understanding and ac-
cepting their diagnoses, particularly as they became teenagers.
Secondary impacts became more prevalent in this age group, in-
cluding needing support to live independently, suicide attempts,
significant mental health support needs, and difficulties with the
law. For the psychologists who do assess FASD, they did not also
offer therapy services. “The assessment is one part of it. But then
it 's ki nd of like, OK , well , wher e to fr om he re? You kn ow, what sup-
ports are available and how do I actually provide accommodations
for this young person?” (PP5).
Need for improved training for psychologists
I remember thinking when I was at the training, I re-
member thinking back to past assessments I've done
and going, Oh my God, I can't believe I missed that,
that's what was going on for that child.
(PP3)
Both groups discussed the lack of training at university for psy-
chologists and other health professionals and the importance of
training more FASD- informed professionals. The psychologists inter-
viewed reported having at most one workshop during their Master's
degree that included FASD, with no information about FASD or PAE
discussed at an undergraduate level. Some psychologists were told
explicitly by super visors in their courses not to ask about PAE. “My
adult and pediatric internal supervisors did not provide any training
in that and one of them suggested that we don't even ask” (PP4).
Additional barriers include not being in the DSM (APA, 2022) and
debate about whose role it is to assess and diagnose FASD. Most
psychologists reported their current training and knowledge of
FASD being due to th eir own researc h, atten ding prof es sional devel-
opment or having a supervisor that was passionate about the impact
of PAE. The psychologists wanted training to include information on
appropriate supports and interventions, when to assess and when
to refer on and when to consider FASD in their case formulation for
both assessment and therapy clients.
For both groups, there was debate centered around single clini-
cian versus MDT diagnosis. While some psychologists were trained
to assess facial features, they expressed a preference for input from
a pediatrician and other allied health clinicians. “Although I techni-
cally can do it, I don't like to do things like measure head circumfer-
ence or measure facial (features). I don't feel that that's within my
scope and I would prefer to leave that to someone who is an expert
in doing … the medical and obviously refer for genetic testing if we
need to rule out other genetic syndromes. They can diagnose any
… comorbid neurological stuff… I think they need to have a role in
it. I don't want to see it turn into a single clinician diagnosis the way
autism has” (PP1). For those with lived experience, “a one stop shop
woul d be ideal” (LE10), although both group s spoke directl y of ex pe-
riences where FASD had been overlooked by MDTs.
Additional discussion around training included differing opinions
about whose role it is to assess and diagnose FASD. Some psychol-
ogists expressed that “neuropsych(ology) is specialized and people
who don't have neuropsych(ology) training, I see them do (assess-
ments) badly… But I think that to expect every single psych to do
(assessment) is a bit of a big ask” (PP1). Other psychologists were
more open to upskilling psychologists with general registration or
other areas of endorsement. “I think, that there needs to be better
training not only for neuropsychologists in FASD, but also anybody
who is when it's within their scope to do an assessment, such as
a school psychologist, because they're expected to by their school
and understand what they're administering and how to interpret the
findings and how to report on it, and also knowing when to refer
on” (PP4). The LE participants were less focused on the endorse-
ment of psychologists and more focused on clinicians being FASD-
informed. One adult reported that despite seeing “a well- respected
and prolific working neuropsychologist,” she “probably was aware
of FASD, but she was not someone that could assess and make a
diagnosis of FASD,” highlighting the need for further training across
endorsements.
Training priorities from a lived experience perspective
The lived experience group had some key priorities for FASD train-
ing. “Rapport building is everything and that psychological safety
and physical safety of that person coming into that interaction”
(LE5). Understanding FASD through the lens of “brain- based behav-
ior” (LE10) and respecting lived experience were critical. “It's not just
a foster child to me. I'm invested in making a difference for their fu-
tures. I don't have any specialized training, but please acknowledge
me as someone that has his best interest s at heart and work with
me. And don't just dismiss me because you have that training and
expertise” (LE9).
Additionally, they stressed the uniqueness of individuals with
FASD and the stereot ypes that persist around facial features. “Still
on the NOFASD helpline, you'll have parents who've been waiting
for six months, nine months, to get to see a pediatrician, and then
they get told when they see the pediatrician, that it, well, it can't be
FASD ‘cause they don't have facial features. That's still happening
today” (LE5).
DISCUSSION
This exploratory study aimed to understand the current landscape of
PAE and FASD assessments in Australia for psychologists, as well as
parents, caregivers, and individuals with FASD. Participants across
both groups appeared to have a good understanding of the impact
of PAE and the stereotypes about drinking in pregnancy, particularly
the populations most at risk of FASD, as well as sharing concerns
about the need for psychological safety and building rapport to tr y
and reduce shame and stigma when asking about PAE.
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EXPERIENCES AND PERSPECTIVES OF FASD ASSESSMENT
Universal screening of PAE
The Australian drinking culture was discussed as a way for psy-
chologists to reduce shame and provide context for the normali-
zation of alcohol consumption, particularly prior to discovering a
pregnancy. In Australia, alcohol consumption is widespread, al-
though alcohol consumption in pregnancy is declining, from 42%
of women aged 14–49 in 2013 to 28% in 2022–2023, and for those
who consumed alcohol in pregnancy, 64% did not know they were
pregnant (NDSHS 2022–2023, 2024). Addressing and reducing PAE
is an impor tant issue in public health, given the social and economic
costs associated with secondary conditions of FASD (Greenmyer
et al., 2018; Popova et al., 2016). Only 47% of women were ad-
vised not to consume any alcohol, typically by a doctor, nurse, or
midwife (NSDHS 2022–2023, 2024). This echoes the findings of
Payne et al. (2005) that only 45% of health professionals routinely
ask about alcohol use in pregnancy, as well as the results from the
lived experience group who reported not being asked about PAE or
being given misinformation that it is safe to drink certain amounts
or at certain times in pregnancy. Clinicians, such as obstetricians,
midwives, and GPs would likely benefit from training on the im-
portance of screening for PAE, as well as how to ask about PAE in
a sensitive and culturally informed way for all pregnant women, in
order to increase the number of women asked about PAE and ulti-
mately reduce PAE.
Participants from both groups recommended all women should
be ask e d ab out PAE and the informa tion reco rded in medical recor ds
during routine antenatal care. The AUDIT- C (Bush et al., 199 8) is an
appropriate tool to address and record PAE; however, participants
noted that there would need to be careful consideration around
how this information is then used. Opportunities were also identi-
fied to screen for PAE and FASD in early child health settings and
at school entry. For example, in Victoria, maternal and child health
nurs es we re tr ained to use the So cial At ten tion an d Com mun ic atio n
Surveillance (SACS)- Revised and SACS- Preschool tools during well-
child checkups at 12, 18, 24, and 42 months of age for early autism
detection, with the SACS- R having an 83% positive predictive value
and 99% negative predicted value of identifying autism (Barbaro
et al., 2022). Screening tools for FASD exist; however, a systematic
review by Grubb et al. (2021) identified most have weak psycho-
metric properties and have a significant risk of bias. Thus, there is a
need for further research to develop clinically validated screening
tools.
Limited diagnostic capacity
Both groups identified limited diagnostic and support services in
Australia, consistent with Hayes et al. (2023) systematic review of
FASD assessment experiences. The lived experience group high-
lighted concerns around the lack of FASD- informed clinicians lead-
ing to missed diagnoses, as well as long journeys to assessment. In
Australia, the demand for FASD diagnosis is far greater than the
availability of diagnostic services, with no consistency in the model
of service (Panton et al., 2022). While the traditional multidiscipli-
nary team (MDT) approach is considered the gold standard (Bower
et al., 2016), training clinicians outside of this approach can improve
access to assessment and diagnosis (Burd & Popova, 2019). In par-
ticular, the adults with FASD interviewed highlighted that there
were no MDTs for adult FASD assessment in Australia, and not all
states have dedicated FASD clinics.
Developing FASD training
In addition to a lack of diagnostic services, participants with lived
experience highlighted the lack of FASD- informed clinicians avail-
able to offer therapeutic support. The psychologists inter viewed for
this study considered FASD to be a niche area of both assessment
and intervention, with the psychologists' knowledge about FASD
coming from professional development that they had sought out
or from an informed supervisor at university. Both groups stated
the importance of embedding teaching about the impact of PAE on
neurodevelopment at both undergraduate and postgraduate levels
in Australia. For practicing psychologists, there have been recom-
mendations to allocate government funding for training in FASD
assessment, test interpretation, and diagnosis (Commonwealth of
Australia, 2021; Reid, 2018; Reid et al., 2020). Online training has
previously been reported to be the preferred option for Australian
psyc hol og ist s; ho we ve r, thi s was in th e conte xt of psycho logis t s who
already work in the field (Kerimofski et al., 2024).
When considering developing further FASD training, there
was an emphasis from par ticipants on recognizing that assess-
ments and interventions should be individualized. Culture was not
discussed directly by participants in the interviews; however, the
FASD Indigenous Framework (Hewlett et al., 2023) suggests ways
for non- Aboriginal clinicians and Aboriginal peoples to access
healing- informed, strengths- based, and culturally responsive FASD
assessments and supports. The framework establishes elements of
knowledge for clinicians, “knowing,” such as understanding the leg-
acies of colonization and Aboriginal perspectives, as well as ways of
being, “unlearning” and doing, “yarning” and applying a strengths-
based approach and advocacy.
Additional consideration for future training should be given to
the diagnostic terminology. Eliason et al. (2024) raised concerns
that the term FASD contributes to a culture of racism and discrim-
ination and should be revised to a broader diagnostic term, such as
“neurodevelopmental disorder” as it is difficult to confirm that PAE
is the primary cause of neurodevelopmental impairment. Others
argue that by replacing the term FASD, the FASD community may
be further marginalized and the impor tant public health messaging
about the risks of PAE will be impacted (Kachor, 2024). Currently,
there is no unified diagnostic approach, with more than 10 different
diagnostic criteria globally (Reid et al., 2022). Inclusion in the next
edition of the DSM (APA, 2022) could support a cohesive approach
to diagnostic criteria and terminology.
1050
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KERIMOFSKI et al .
LI M I TATIONS
This study was limited by the sample size and generalizability of
results. The lived experience participants were derived from the
NOFASD PEAG and are actively involved in support and advocacy
for FASD. They are not necessarily representative of all individuals,
parents, and caregivers affected by FASD.
Similarly, the psychologists interviewed had a higher baseline
level of FASD knowledge than psychologists previously surveyed in
Kerimofski et al. (2024). This was helpful in terms of achieving pro-
ductive discourse about FASD and their experiences but may not
reflect most Australian psychologists' experiences.
CONCLUSION
The importance of asking about PAE in a sensitive manner, in-
cluding universal screening opportunities, was highlighted by
both groups of participants. A call to increase the number of
FASD- informed clinicians to offer both assessment and individu-
alized support will require embedding knowledge about FASD
and PAE within all university training programs for psychologists,
as FASD is currently considered a niche area of assessment, with
clinicians holding outdated views at times. Future research could
focus on developing culturally appropriate and sensitive screen-
ing tools for PAE and FASD, as well as training for psychologists
in t hese asses sm ent s to im prove e ar ly id entif icati on an d sup po r t.
Additionally, the broad support for universal screening of PAE
suggests training clinicians involved in antenatal care to con-
sistently screen for PAE in a sensitive and culturally informed
manner.
ACKNOWLEDGMENTS
The authors would like to acknowledge the members of the
NOFASD PEAG and the psychologists interviewed for their valu-
able contribution to this project. Open access publishing facili-
tated by The University of Western Australia, as part of the Wiley
- The University of Western Australia agreement via the Council of
Australian University Librarians.
FUNDING INFORMATION
This research received no specific grant from any agency in the pub-
lic, commercial or not- for- profit sectors.
CONFLICT OF INTEREST STATEMENT
The authors declare no conflict of interest.
DATA AVAIL AB ILI T Y STAT EME N T
Data will be made available upon request.
ORCID
Katherine L. Kerimofski https://orcid.org/0000-0001-6187-8245
Carmela F. Pestell https://orcid.org/0000-0002-1737-7774
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SUPPORTING INFORMATION
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Suppor ting Information section at the end of this article.
How to cite this article: Kerimofski, K.L., Panton, K.R ., Tan,
G.K.Y. & Pestell, C.F. (2025) Fetal alcohol spectrum disorder
identification in Australia: A qualitative analysis of
perspectives from psychologists and individuals with lived and
living experience. Alcohol: Clinical and Experimental Research,
49, 1042–1052. Available from: htt ps ://doi.org/10.1111/
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