1. Connecting Foster and Kinship Carers SA Morning Tea: Fetal Alcohol Spectrum Disorders
Stewart McDougall

2. Outline of the today’s session
Overview of Fetal Alcohol Spectrum Disorders (FASD)
Diagnostic process
Supporting children and families living with FASD
Overview of my research
Q and A session

3. What is FASD?
“Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe the impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individual with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD with FASD is unique and has areas of strengths and challenges.”
(CANFASD Language guide, 2019)

4. What is FASD?
“Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe the impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individual with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD with FASD is unique and has areas of strengths and challenges.”
(CANFASD Language guide, 2019)

5. FASD in Australia
Fetal Alcohol Spectrum Disorder is the diagnostic term, with two subgroups:
Fetal Alcohol Spectrum Disorder, with the three sentinel facial features
Fetal Alcohol Spectrum Disorder, with less than three sentinel facial features
Diagnosis is based on three criteria:
Prenatal alcohol exposure
Neurodevelopmental assessment
Presence or absence of the three sentinel facial features
(Adapted from the Australian Diagnostic Guidelines, Bower and Elliott, 2016)

6. Cognitive and behaviour domains
Brain Structure
Academic Achievement
Motor skills
Memory
Executive Function, including impulse control and hyperactivity
Attention
Affect Regulation
Adaptive behaviour, Social Skills or Social Communication
Cognition
Language

7. FASD in Australia Accurate prevalent rates haven’t been established
Prevalence in the US, Canada, and Italy estimate between 2%- 5%
Recent UK study suggests as high as 17%
Higher prevalence amongst children in out-of-home-care, and in youth justice settings
FASD diagnosis and assessment is in its early years in Australia but moving forward at a rapid pace

8. Everyday difficulties for children with FASD
Trouble learning and remembering new information
Difficulties understanding consequences to their actions
Difficulty paying attention
Impulsive behaviour, taking things which don’t belong to them
Slow to move from one task to another
Difficulties with language;
Sleep
“Young for their age”
(Adapted from McLean and McDougall, 2014).

9. Reframing behaviour
What behaviours might you see? What might you think?
What might actually be going on for the child?
He won’t listen, he can’t be taught
Slowed speed of thinking, poor language comprehension and poor memory makes it hard for children to comply with requests in a timely way.
He doesn't take responsibility for behaviour ..."
Difficulty in linking actions with consequences. Difficulty in remembering events.
She takes everything literally, has no sense of humour.
Poor language skills mean the child can't understand double meanings in jokes. The child interprets every word in terms of its concrete meaning. Difficulty in thinking in abstract terms, and in recognising similarities and difference
"She won't obey, she does it on purpose."
Poor understanding of instructions means the child does not know what to do. Difficulty in linking cause and effect means making the same mistake again and again.
(Adapted from McLean and McDougall, 2014)

10. Supporting children with FASD
8 Magic Keys
Concrete terms
Consistency
Repetition
Routine
Simplicity
Specific Language
Structure
Supervision
Evensen, D. & Lutke, J. (1997). 8 Magic Keys
(Adapted from the Australian Diagnostic Guidelines, Bower and Elliott, 2016)

11. My research
Aim of the research was to develop a new screening tool to identify children at risk for FASD, focusing on the 4 to 12 age group due to the benefits of early intervention
Identify the children who would benefit most from referral for assessment with a multi-disciplinary team
Reviews of the literature, interviews with caregivers and clinicians, developing the items, and pilot testing

12. Content validity phase
Scoping review
Clinician interviews
Caregiver interviews
Develop conceptual model to identify relevant disease-specific domains and issues
Item generation based on conceptual model
Content validity phase
Expert review of proposed items
Refine measure based on expert review and format validation ready version
Conduct validation study and refine measure based on findings
Measurement property psychometric phase
Final measure
Adapted from Brod et al (2009).

13. Content validity phase
Scoping review
Clinician interviews
Caregiver interviews
Develop conceptual model to identify relevant disease-specific domains and issues
Item generation based on conceptual model
Content validity phase
Expert review of proposed items
Refine measure based on expert review and format validation ready version
Conduct validation study and refine measure based on findings
Measurement property psychometric phase
Final measure
Adapted from Brod et al (2009).

14. What did caregivers tell us about the strengths and difficulties of their children?

16. What’s next?
We developed a questionnaire from the literature review and interviews
Caregivers and clinicians reviewed the questionnaire, and we revised it based on their feedback
Revised questionnaire is now out in the world, being trialled to start to answer questions about how well (if) it works

17. Where to go for more information?
If you have any concerns about your child/rens health or development, please speak with your health professionals.
FASD Hub (
NOFASD (
RFFADA (

18. Australian FASD Diagnostic Instrument
Available on-line, clinician focused, but the Appendices are full of useful information: ets/pdfs/australian-guide-to- diagnosis-of-fasd_all- appendices.pdf

19. Thank you
We are currently recruiting for the final study, if you are interested in participating come and see me after this presentation or visit:
Protection/Research/Testing-a-new-screening-tool-for-children-living- with-FASD/
Stewart McDougall
Australian Centre for Child Protection, University of South Australia