Meeting the Challenge of FASD in Australia's Fitzroy Valley: The Lililwan Project
Meeting the Challenge of FASD in Australia's Fitzroy Valley
Under the dark and starry sky of the Southern Hemisphere, gum trees and bird life abound, and a unique and compelling Aboriginal culture exists. This culture is deeply rooted in a long and continuous, linked flow of spiritual and daily life, though also connected with mainstream Australian society.
Community members want to preserve the oral tradition of their many language groups and culture, and pass this onto their children. This means promoting the health and learning potential of the younger generation.
But the community had growing concerns about their children’s struggles with memory, learning and behavior regulation. Members of the community started an impressive and long-term project called "Marulu: The Lililwan Project." This project was an FASD prevalence study across the remote Fitzroy Valley, the first study of its type. "Marulu” is a word meaning "precious, worth nurturing" in Bunaba, one of 4 Aboriginal language groups in the Fitzroy Valley. "Lililwan" is a Kriol word meaning "All the little ones."
In Australia, according to the project report, “the problem of alcohol abuse in Indigenous communities has been the subject of much research, reportage and debate. But the impact and severity of its offspring, fetal alcohol spectrum disorders (FASD), remains largely unknown.”
In late 2007, spurred by serious community concerns about alcohol’s societal impact, alcohol restrictions were introduced in the main town of Fitzroy Crossing, and later in smaller communities. These restrictions were evaluated a year later to show major improvements in safety, health education, cultural strength and economic potential. The community was determined to build on this, with a focus on children’s health and well being. "They believed too many children were suffering from permanent physical and mental health problems resulting from alcohol use, including during pregnancy."
In mid-2009, the communities of Fitzroy Valley invited the George Institute for Global Health to work with them on their project: "Overcoming FASD and Early Life Trauma in the Fitzroy Valley: A Community Initiative." School staff, health workers and community leaders were interested in how the Families Moving Forward (FMF) Program ideas of “reframing” and “accommodations” can provide a way to realistically address children’s problems.
Reframing means understanding how a child’s profile of strengths and weaknesses explains learning and behavior. This prompts a creative process of coming up with accommodations — creatively adapting caregiving, home and school environments, and organization of community activities for children. Reframing and accommodations can be done in any community in the world, even communities with limited resources like the Fitzroy Valley.
In 2011, FMF Program staff member, Heather Carmichael Olson, was invited to live and work in the Fitzroy Valley during the Lililwan Project FASD Prevalence Study. Besides working on the FASD diagnostic team, her role was to mentor local community members and workers, acting as a resource about the latest research and intervention ideas.
While in Australia, Heather said, "This is an amazing opportunity to be part of community-initiated research. I'm excited to be trying to make a meaningful difference in a community that has stood up and decided to tackle head-on the problem of how alcohol and drinking affects community life."
The Lililwan Research team was headed by physicians and researchers, Liz Elliot and James Fitzpatrick, and by researcher Jane Latimer.
As of 2014, the FASD prevalence study has been completed and the community consulted on research findings. Scientific articles have been published and the Australian government informed about the concerning scope of the problem of FASD. Prevalence data are under review for publication. Now members of the team are working with community leaders to tackle the challenge of moving forward to support families and teachers of children in the valley who have neurodevelopmental difficulties. The communities of the Fitzroy Valley, together with researchers and FASD educators, continue their efforts to shed light on the problem of FASD and to set an example for other local communities, and those around the globe facing these invisible disabilities.
Participating institutions in the partnership for the FASD Prevalence Study, many of whom are continuing their efforts to find and provide interventions:
Marulu FASD/ELT Strategy Leadership Team
Nindilingarri Cultural Health Services
Marninwarntikura Women’s Resource Centre
The George Institute for Global Health
The Discipline of Paediatrics and Child Health at Sydney Medical School
The University of Sydney
The Telethon Institute of Child Health Research, Western Australia
In collaboration with Indigenous Community Volunteers
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Where do I begin to tell this story? I honestly feel that I’ve been inspired and touched by each of the families affected with FASD with whom I’ve worked, and that each family has their own compelling story.