Helping Families Overcome Fetal Alcohol Syndrome
In 2011, Dr. Heather Carmichael Olson had the research opportunity of a lifetime.
Remote communities in the Australian outback had come together to try to end fetal alcohol spectrum disorders (FASD) among their children. At the request of community leaders, researchers were designing a project to diagnose FASD, and to then support affected children and their families. The researchers invited Olson, an FASD expert who develops innovative treatments, to spend six months helping them.
It meant dropping everything and travelling to Aboriginal communities, where Olson would sleep on schoolhouse floors and have close encounters with some of the world’s deadliest snakes. It also meant a chance to improve the lives of children with FASD throughout Australia, where at least 20% of women drink alcohol at very risky levels during pregnancy.
“I had spent years trying to make people aware that FASD was a problem, and here was a community that noticed something wrong with their children and was doing something about it,” says Olson, a psychologist and principal investigator in the Center for Child Health, Behavior and Development. “I wanted to help in any way I could.”
Taking a Stand Against Alcohol Abuse
The effort to understand FASD started after community leaders in the Fitzroy Valley – a rugged area in the Western Australia desert – took a stand against alcohol abuse. Alcohol-fueled violence and crime had become common in the valley, and in 2007 there was a dramatic spike in alcohol-related deaths and suicides.
Parents and teachers also noticed a more insidious problem: more children were having memory, attention and learning problems. These can be symptoms of alcohol exposure during pregnancy, and they’re especially worrisome in an Aboriginal culture that uses songs and oral histories to transmit traditions.
“People were afraid their culture was going to disappear,” Olson says.
Some communities introduced strict new alcohol controls, while others banned alcohol entirely. And Aboriginal leaders started working with researchers, including Dr. Elizabeth Elliott of the University of Sydney, Dr. James Fitzpatrick of the Telethon Institute and Dr. Jane Latimer of the George Institute for Global Health, to find ways to help children.
As Fitzpatrick and the team started designing an innovative study of FASD prevalence, he came to Seattle to learn from Olson and her colleagues. Fetal alcohol syndrome (FAS) was first characterized at the University of Washington and Seattle Children’s, and Olson has spent more than two decades investigating the disorder, and working with affected children and families. She and her husband took Fitzpatrick to dinner and talked for hours about how to construct his study, and about the best ways to diagnose and treat FASD.
“Then, two months later, he called and said ‘How would you like to come to Australia for six months?’” Olson remembers. “It was pretty sudden, but my colleagues were amazingly supportive and we found a way to make it happen.”
Diagnosing Children with Fetal Alcohol Spectrum Disorders
On that first trip, Olson helped investigate how many children born in the Fitzroy Valley in 2002 and 2003 were affected by FASD. Olson traveled to communities with the clinical team and Aboriginal “community navigators,” testing children and assessing their memories, problem-solving abilities, behavior, physical features and other key factors.
Olson remembers one test being interrupted when a large, venomous snake was captured outside her door. Another time, she tested a child on a dusty, shaded sidewalk in 100-degree heat, after a power outage stalled a school’s air conditioning.
“I was working with these adorable kids who spoke languages I didn’t understand, and we’d end up in these odd situations and just smile and laugh,” Olson says. “It was so much fun.”
So far, data from the 108 children tested show that 14.8% show full or partial FAS, an alarmingly high rate.
This FASD prevalence study is called the Lililwan Project. Lililwan means “the little ones” in an Aboriginal language called Kimberley Kriol. The project is part of a long-term FASD action plan developed by the community called the Marulu, or “precious ones,” Strategy.
An Innovative Program to Help Children with FASD
Olson recently went back to Australia to help analyze and publish the Lililwan Project’s results. She is also sharing insights from Families Moving Forward (FMF), a family-focused intervention Olson developed with colleagues at Seattle Children’s and the University of Washington, and now directs.
FMF aims to teach families how to reduce FASD’s impact. FMF is based on the idea that children with FASD have important neurological issues that affect their learning and behavior – and that each child has unique issues and strengths. FMF practitioners coach parents and caregivers on the best ways to understand children and improve their learning and behavior.
For instance, when a child has trouble remembering, it’s common for parents to repeat themselves and use more words to drill their point home. But for a child with “brain-based” communication and memory disabilities, it’s actually more effective to slow down and use fewer words, and to show children what to do.
“The idea is to figure out the conditions under which the problem is happening, and then you change those conditions in a way that helps the child,” Olson says.
In a randomized controlled trial, the FMF Program improved caregiver attitudes, met family needs and decreased disruptive child behavior.
With funding from the Centers for Disease Control and Prevention, Olson’s team developed an FMF training program, and clinicians in Washington state, New York, Florida, Minnesota and Canada are incorporating FMF into their work.
In Australia, Olson is using her knowledge of FMF to help researchers tailor FASD interventions. In February, she and her Australian colleagues met with the nation’s children’s commissioner and Aboriginal/Torres Strait Islander social justice commissioner to build support for a broader effort to reduce FASD’s impact throughout Australia.
“Everywhere I go, these kids and their families are incredibly engaging and just remarkable,” Olson says. “My job is to help them achieve their potential. It’s such an honor.”