FASD forum sheds light on recent research and parent expertise
A Vancouver workshop focusing on the latest developments in early diagnosis and treatment of FASD showcased Canadian research organizations and their work to community organizations and parents, who in turn shared their own expertise.
NeuroDevNet's Neuroethics Core hosted the community gathering at the Child and Family Research Insitute, drawing a small crowd of parents, community organizations, and trainees.
PI James Reynolds gave an overview of the scope of FASD research within NeuroDevNet in the Network's second five years, including screening using eye movement tracking technology, collaboration with child protection agencies, looking at live interventions for children in foster care, evaluation of programming that teaches emotional self-regulation to teens with FASD, and collaboration with Avertus Technologies, examining "a novel way of assessing brain function in the home with wireless EEG."
Reynolds' discussion of the Strongest Families FASD project, that provides families in the intervention arm of the study with progressive modules of customized curriculum around behavioural support, teamed with one-to-one consultation with a trained coach, captured curiosity and attention among the attendees, especially those parenting children and teens with FASD. The mother of a teen who participated together in the pilot evaluation of Strongest Families FASD was present, and spoke to the need for specialized guidance for navigating the challenges of adolescence.
CanFASD Executive Director Amy Salmon discussed her organization's research agenda and scope of work, highlighting the collabration that produced updated diagnostic guidelines for FASD in Canada. "This is a case of research informing changes in practice," she said. "Before, about 1,000 people per year could be diagnosed. Now, it's about 3,000."
CanFASD also produces resources on key issues to help guide policy in FASD. "Evidence is one among many factors guiding the policy process," added Salmon. "This is something we all care about - how can we create those links better between families, research and policy."
Neuroethics Core Manager Nina DiPietro spoke to the Core's research on the ethics of meconium screening for FASD. "There are series implications," she said. "Mothers have been incarcerated, and lost their children when their baby's first stool shows signs of alcohol. We exammined how we can move forward in a more ethical manner." A second analysis, said DiPietro, looks at stigma in prevention advertisements and addresses the risk of mother-blaming in messaging.
The event provided an opportunity for parents to engage with one another, as well as the researchers. "I was hoping to come away with a bunch of tips and pointers," said the new adoptive mother of an eight-year-old with FASD, as she photographed the url of the Strongest Families study with her Smartphone. Other parents quickly stepped forward to connect her with the mother of an older child who lives in her home community.
Multiple comments from community organization workers and parents pointed to the difficulty in accessing services, and the absence of expertise in FASD they encounter.
Reynolds acknowledged the seeming disconnect between emphasis on diagnosis, and the absence of interventions for children and youth who have already been identified as having FASD. Things are changing, he said, because granting agencies are interested in research that will actually change the individual health of Canadians. "The best way we can do that," he said, "is to ask people like you what they need."