#28 FASD Families with Dr Natalie Phillips

In this episode of “Pregnancy, Alcohol and FASD: The Surprising Reality”, host Kurt Lewis speaks with Emma McDougall, a FASD-informed occupational therapist and Clinical Advisor at NOFASD Australia. Emma discusses what it truly means to be FASD informed, moving beyond simply knowing about FASD to understanding how it affects each individual’s daily life. They explore the importance of a strengths-based and brain-based approach, the value of listening to lived experience, and how professionals can adapt environments, expectations and supports to better meet the needs of people with FASD. Emma also shares practical advice for clinicians working with people with FASD, including considerations for NDIS reports and advocacy. The conversation highlights a key message: awareness is important, but genuine understanding, compassion and action can make a meaningful difference in the lives of people with FASD and their families. For more information about FASD, please go to: https://www.nofasd.org.au/ Producers: Kurt Lewis, Julie Flanagan and Sophie Harrington Narrator: Frances Price Interviewer: Kurt Lewis Interviewees: Emma McDougall The copyright is owned by NOFASD Australia. All rights reserved - No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia. The views expressed in this podcast are those of the interviewees. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.

Kurt is joined by Dr Vanessa Spiller; an experienced Clinical Psychologist with around 30 years of practice who is dedicated to supporting individuals with Fetal Alcohol Spectrum Disorder (FASD). She shares her personal and professional journey with FASD - from discovering the condition through parenting her son, to seeing how lived experience has shaped her clinical practice. Dr Spiller explores why FASD can be a “chameleon” condition, often resembling Autism, ADHD, intellectual disability and other diagnoses, and why recognising the brain-based differences behind behaviour is so important. She discusses executive functioning, memory, comprehension, confabulation and suggestibility, and the particular risks these vulnerabilities can create for people with FASD in the justice system. The conversation also offers practical advice for caregivers and professionals, including how to respond to confabulation and perseveration with empathy, regulation and problem-solving rather than confrontation. Dr Spiller highlights the importance of ensuring that people with FASD have appropriate support when interacting with police, medical professionals and the justice system. If you live in Australia and would like to receive some of the free “Police Information Cards” mentioned in this episode, please register your interest and provide your postal address at: https://www.nofasd.org.au/contact-us/ For more information about FASD, please go to: https://www.nofasd.org.au/ Producers: Kurt Lewis, Julie Flanagan and Sophie Harrington Narrator: Frances Price Interviewer: Kurt Lewis Interviewee: Dr Vanessa Spiller The copyright is owned by NOFASD Australia. All rights reserved - No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia. The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.

Kurt is joined by Professor Anita Gibbs, of the University of Otago, New Zealand and Julie Flanagan. NOFASD’s National Projects and Communications Manager. Together they discuss a research article based on the outcomes of the Families Linking with Families program and the benefits of the program as confirmed by participating caregivers.. The Families Linking with Families program is an online support group developed by NOFASD Australia in conjunction with Professor Gibbs, to provide education and peer support for those who are caregivers for individuals living with Fetal Alcohol Spectrum Disorder (FASD). Key points about the Families Linking with Families program: - It is a structured and guided 7-week online support group which is led by trained facilitators, each of whom is a parent or caregiver for an individual with FASD. The main benefits include: - Enabling caregivers to connect with others who are going through similar experiences, thereby lessening the sense of loneliness experienced by many carers. - Providing a safe and confidential space for caregivers to share their specific situation and challenges without judgement - Increasing caregiver knowledge about FASD, effective parenting/caregiving approaches and FASD-informed strategies. - Empowering caregivers and building their resilience. The online format makes the program accessible across Australia, even for those in remote areas. The program is delivered several times a year and is refined based on participant feedback and issues of concern tabled during meetings. Australians interested in participating in a future support group should contact the NOFASD Australia helpline on 1800 860 613 or visit our website through this link to express interest. The research article discussed in this episode is: “An Australian Online Training and Support Program for Caregivers of Children and Youth with Fetal Alcohol Spectrum Disorder: Families Linking with Families” by Anita Gibbs, Julie Flanagan and Louise Gray is freely accessible. It's an open access article in the Journal of Intellectual and Developmental Disability. The full article can be read at: https://doi.org/10.3109/13668250.2023.2271757. For more information about FASD, please go to: https://www.nofasd.org.au/ Producers: Kurt Lewis, Julie Flanagan and Louise Gray Narrator: Frances Price Interviewer: Kurt Lewis Interviewees: Professor Anita Gibbs & Julie Flanagan The copyright is owned by NOFASD Australia. All rights reserved - No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia. The views expressed in this podcast are those of the interviewees. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.

Kurt is joined by Dr Jeffrey Wozniak; a clinical paediatric neuropsychologist at the University of Minnesota and Dr Blake Gimbel; also a paediatric neuropsychologist and Assistant Clinical Professor at Nationwide Children's Hospital and the Ohio State University. They discuss their recent research which includes using brain imaging techniques, using online cognitive assessment tools to aid in FASDdiagnosis, and examining the role of sleep disturbances in FASD. One promising intervention they have studied is choline supplementation, which has been shown to have small, but measurable benefits in improving memory and cognitive function in young children with FASD. Overall, the researchers emphasise the importance of hope and continued research to support those living with FASD and their families. For more information about FASD, please go to: https://www.nofasd.org.au/ Producers: Kurt Lewis and Julie Flanagan Interviewer: Kurt Lewis Interviewees: Dr Jeffrey Wozniak and Dr Blake Gimbel Narrator: Frances Price The copyright is owned by NOFASD Australia. All rights reserved - No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia. The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.

Kurt is joined by Katelyn Mullally, a PhD Candidate in Clinical Child and Adolescent Psychology at the University of Guelph in Canada, who is researching youth justice, legal decision-making and FASD. They discuss her research on guilty pleas and plea understanding in youth and young adults with FASD. She found that individuals with FASD had difficulty understanding the terms and consequences of guilty pleas compared to those without FASD. She also emphasises the importance of legal professionals being aware of FASD and adapting their practices to support defendants with FASD.