Adapting the home and school environment improves life for families raising kids with Fetal Alcohol Spectrum Disorders.
Children with Fetal Alcohol Spectrum Disorders (FASD) are born with a painful legacy of lifelong neurological issues. Their families contend with complex and diverse symptoms ranging from learning deficits to social communication problems. Helping parents raise children facing these challenging issues is the focus of an ongoing research effort launched in Seattle.
Dr. Heather Carmichael Olson, a clinical and developmental psychologist at Seattle Children’s, noticed that the whole family benefits when parents recognize neurodevelopmental disabilities in their child and learn how to adapt to them. Her innovative approach to FASD intervention is helping caregivers find new ways to cope – and is gaining traction across the nation. Her work also shows promise in helping prevent long-term secondary disabilities associated with FASD, including mental health problems, inappropriate social behavior and trouble with the law.
The intervention model designed by Carmichael Olson connects families of preschool- and elementary-age children with behavioral specialists trained in neurodevelopmental and fetal alcohol issues. Together, over the course of nine months, the specialists and caregivers follow a planned treatment course and develop individualized plans to meet the specific needs of each child and family.
Participating parents say their family’s overall quality of life improves and they report feelings of parenting success. They have a more positive view of their child and the parent-child relationship, and they see fewer behavioral problems after treatment. The intervention was developed as part of Carmichael Olson’s work with the Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network (FAS DPN) based at the University of Washington. Called the Families Moving Forward Program, the research has far surpassed its original goals and is being sought by care providers around the country.
Intervention adopted throughout the country
In 2010, Carmichael Olson and her team at the Seattle Children’s Research Institute’s Center on Child Health, Behavior and Development established consultation sites in California and Florida. In Alaska, she trained providers from seven agencies now using the intervention. She also developed a Web-based resource for providers and is securing CDC and other funding to make training and materials more widely available. In addition, the Midwest FASD Regional Training Center in Missouri asked her to adapt the intervention to help shape a new program for adolescents and young adults.
The four articles published by Carmichael Olson in 2010 described problems shared by children with FASD and laid the groundwork for others to develop interventions for concerns like significant sleep disorders.
“Families really struggle to raise these kids, and Families Moving Forward is a major contribution,” says UW epidemiologist Dr. Susan Astley, co-founder and director of the FAS DPN. “It’s focused on the whole family unit – particularly on the parent – and can measurably improve quality of life for these families.”
Adapting the environment can improve function
“Adapting the environment can lessen the impact of neurodevelopmental deficits and improve a child’s day-to-day function,” says Carmichael Olson. “Caregivers are able to change their view of the child, and begin to feel more positive.”
Take for example the working memory problems that are common among these kids. When a parent asks a child with FASD to get dressed, they might forget or become distracted on their way to the closet.
“Parents look at an 8- or 9-year-old doing this and think they’re misbehaving, when in fact the child may not be able keep the request in mind long enough to complete it,” Carmichael Olson says.
Parents learn how to identify the memory problem and are taught ways to address it, such as showing the child what to do, giving them a memory-jogging picture card, or hanging a poster on the bedroom wall as a visual cue.
“There are hundreds of creative ways to adapt the environment so it works better for everyone,” Carmichael Olson says. “Finding the best solutions for each child is a creative, collaborative process.”
Individualized interventions work better
The program also targets the school environment. Educators often have difficulty recognizing the neurodevelopmental challenges facing a child with an average-range IQ, good vocabulary and reasonable academic achievement. But children with FASD can have hidden learning and cognition difficulties that may not show up in school testing and are often misinterpreted as behavioral problems. Specialists and parents meet with teachers to help them identify the symptoms and find ways to address a child’s special needs.
Parents feel stuck because our systems are not set up to recognize people with brain-based disabilities that are not linked with IQ." ~Dr. Heather Carmichael Olson
“It can be an ‘aha’ experience when the teachers see the research results showing working memory problems, sensory sensitivities, and organizational and social communication issues in a difficult student,” says Carmichael Olson.
“Parents feel stuck because our systems are not set up to recognize people with brain-based disabilities that are not linked with IQ,” she continues, also noting that these children are often not eligible for services that they deserve, and that mental health techniques that work for children with disruptive behavior or mental retardation are often not as effective for children with FASD.
Pioneering research and care
Children’s and the University of Washington have been partners in pioneering FASD diagnosis, intervention and prevention research since 1968, when Children’s chief resident Dr. Christy Ulleland first noticed common characteristics among infants with alcoholic mothers. Research that followed led to identifying and naming Fetal Alcohol Syndrome (FAS) here in 1973. (Note: FASD refers to the overall range of neurodevelopmental disabilities that can result from drinking while pregnant; FAS is a clinically diagnosed birth defect caused by maternal alcohol use during pregnancy.)
Twenty years later, Dr. Sterling Clarren, a Children’s fetal alcohol research pioneer, and Astley co-founded the Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network of interdisciplinary clinics. Clarren now works at University of British Columbia and continues to play a leadership role in FASD research and policy. And Astley has developed diagnostic, screening and surveillance tools that have documented the high prevalence of FAS in King County foster care (1 in 100 children) and its significant reduction over time through effective primary prevention. The organization they created has trained hundreds of clinical teams worldwide through its Web-based tools, programs and online training course.
“Helping families one by one is an incredible achievement, and we’ve also been able to impact public policy because of the credibility of the research done at Children’s and UW,” says Carmichael Olson, who was appointed to the Congressional Taskforce on Fetal Alcohol Syndrome.
Pediatrician Dr. Julia Bledsoe is working to increase recognition and treatment of these disorders by raising awareness in the international adoption arena. Her efforts have led to increased FASD screening in international adoptions. Bledsoe directs the Center for Adoption Medicine at UW Medical Center and is a member of Children’s Research Institute’s and the UW FAS DPN clinic.
Children’s geneticistDr. Margaret Adam is part of a multicenter Fetal Alcohol Syndrome epidemiologic project studying the prevalence of the syndrome in the U.S. and other countries. In areas with high FAS occurrence, her team is exploring the causes and building community education programs around their findings.
Collectively, their work places Children’s and the UW at the forefront of FASD research and advocacy, contributing to nearly a half century of leadership in this arena.