June Oscar is one of the women elders who has led the campaign in the Fitzroy Valley to restrict the sale of full-strength alcohol. The restrictions five years ago transformed her community but Fetal Alcohol Spectrum Disorder (FASD) was now the great challenge before them.
It’s a challenge they do not face alone. Dr James Fitzpatrick, has developed tools to diagnose FASD in the valley and helped the community find ways to prevent and treat the condition.
It’s been a powerful experience for the 40-year-old, who is attached to Telethon Kids Institute.
“The change has come from within the community. They put their hands up and said we have a big problem here; our kids’ future and the continuation of our culture are at risk,” he said.
“The community leaders were courageous and clever enough to say we can do most of it ourselves – we can get community support against FASD using our own organisations such as the women’s centre and the Aboriginal Medical Service to run activities but we need research partners and agents of change to partner us.”
Responding to rural kids
“To make FASD history we want to drive down drinking in pregnancy to below 10% by 2017 and the community is well on the way to do that.”
“We are also mindful of the children already affected by FASD and how it impacts on their lives both at home and school. These families need support to understand the strengths and limitations of FASD-affected children, which means they can accommodate their needs better. It’s hoped the long-term cycle of mental health, alcohol abuse and contact with the justice system will reduce two to fourfold with early intervention and supportive family environments.”
“The school-based Alert program is across eight schools in the Kimberley. Child, parent, and teacher all have strategies to deal with behaviour working largely with sensory strategies. None of them is rocket science but they help.”
“Working around memory impairment with step-by-step visual routines help children to carry out their daily tasks. Sometimes these visual cues need to go into adolescence and adulthood.”
He said drugs don’t work in FASD but some sleep disturbance, severe behaviours, ADHD may respond. Approach to therapy needs to be individualised.
Alcohol tackled head-on
The Fitzroy community’s resolve to control drinking has strengthened.
“I know anecdotally that young women are pressuring each other not to drink particularly in pregnancy. FASD has allowed the community to talk about alcohol, which takes the blame and shame off everyone. Their message to each other is ‘We need to settle down for our children and the continuity of our culture’. There has been a change in the social norms.”
“In 2010, 65% of women were drinking in the first trimester; in 2013 it has reduced to 35%. This is real change which empowers the community to work towards that 10% by 2017 goal.”
The lesson of the Fitzroy Valley is that ambitious goals can be met when everyone works cohesively – a model that is being followed in other communities. He said communities just need to be aware of the problem and be willing to do something about it.
“Delegates from communities of the Western Desert have travelled to Fitzroy to talk to June Oscar, Maureen Carter and Emily Carter and that peer-to-peer support is most powerful. When Halls Creek worked through alcohol restrictions, they received enormous support from Fitzroy. Now five years on, there has been a 50-80% decrease in alcohol-related hospital admissions and police activity.”
“What we can do as researchers is generate data to support the need for restrictions by showing their effectiveness. In 2006, sales of pure alcohol from one takeaway outlet alone in Fitzroy Crossing was 37,000 litres or 750,000 cans of full-strength beer in a town of 1500 people. Six months post-restrictions and that sales rate had dropped by 75%.”
“Just imagine the benefits of that seismic change in chronic alcohol sales.”
Their assessment of affected kids has four components:
• Alcohol exposure in pregnancy (quantified).
• Assess growth, which may be related to alcohol use in pregnancy.
• Facial features.
• Complex central nervous system assessment. For small children, paediatric assessment; and school-aged children assessments by psychologist, speech therapist, OT and paediatrician.
“We assess where the strengths and weakness of the individual lie and if the neurological weaknesses are significant enough to classify as neural-development impairment, it would be called FASD.”
“We don’t want to over-diagnose this problem because there are a lot of people exposed to alcohol during pregnancy who are doing fine, or are not significantly impaired. However, neurological impairment of others with no known cause, may be alcohol exposure.”
The Australian Paediatric Surveillance Unit 2000-2005 gives FASD prevalence as 0.68%.
“Our job as doctors is to encourage the best health outcomes for our clients and there is no time of life more critical than in pregnancy and early childhood. To make our jobs easier, there needs to be a simple, united and strong voice on the importance of no alcohol during pregnancy.”