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

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

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)

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)

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)

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

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

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).

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)

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)

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

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).

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).

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

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

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 (https://www.fasdhub.org.au/) NOFASD (https://www.nofasd.org.au/) RFFADA (https://rffada.org/)

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

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: https://www.unisa.edu.au/Research/Australian-Centre-for-Child- Protection/Research/Testing-a-new-screening-tool-for-children-living- with-FASD/ Stewart McDougall Australian Centre for Child Protection, University of South Australia www.unisa.edu.au/accp stewart.mcdougall@unisa.edu.au