Vanessa Hrvatin is the recipient of the 2018 Lang Fellowship in Journalism. She sat down for an interview with Dave Brackenridge, the host of 10/3 podcast series, to talk about the risk of FASD, who is most affected, and how myths and stigma alter understanding of the disorder.
Vanessa was assigned a story on FASD about 2 years ago, but was limited to 500 words. After completing the story, she felt that there was much more to explore and talk about, as there is limited media attention on FASD. In her interview, she talks about FASD being both a brain-based and whole-body disorder, as well as how the Canadian prevalence rate is ~3% (which is likely an underestimation). CanFASD uses a 4% prevalence rate, see the prevalence rate issue paper here.
FASD is very difficult to diagnose, as you need confirmation of prenatal alcohol exposure, which can be hard to obtain from the birth mother if the child is in foster care or has been adopted. Also contributing to undiagnosed FASD is stigma. Vanessa talked about a study performed in the United States, where in a child welfare system, 86% of children were misdiagnosed with ADHD, or went undiagnosed. This stigma affects birth mothers in particular.
Brackenridge asks Vanessa how to approach prevention of FASD, to which she answers that it is not as simple as telling people to stop drinking. In many instances, women are pregnant for several weeks before discovering that they are pregnant, at which point, alcohol exposure may have already affected the fetus. For others who have a substance use disorder, no amount of messaging may alter their drinking behaviour, so we have to support these women through their pregnancy, encourage a healthy pregnancy and “meet them where they’re at”. She emphasizes that through hearing stories of several parents (birth mothers and adoptive parents), no mother drinks to intentionally hurt their child.
One of the biggest myths described about FASD was FASD being more prevalent among those with a lower socioeconomic status or Indigenous women. In fact, there is no data to suggest that women in these populations have more children with FASD compared to other populations. This myth has contributed to stigma and has slowed progress, as FASD is often viewed as something that cannot affect any/every woman.
While interviewing parents of children with FASD over the last year, Vanessa encountered many positive stories. She says that although they face their fair share of challenges, the parents have done an amazing job at supporting their kids, and the kids have had many successes. From her work, she ultimately wants people to become more aware and informed about FASD, and that by telling these womens’ stories, we can reduce the stigma around the disorder.
You can listen to the full podcast and interview here.
I know that we like to end on a positive note when discussing troubling subjects. But I worry that by saying ‘parents have done an amazing job with their kids with FASD’ it understates the huge pain that families go through in supporting these children. It is important to remember the families that have not survived, the number of these kids who end up in institutional care because families couldn’t cope, the overrepresentation in jail and on the streets who people with FASD. I worry that by presenting a rosy perspective we fail to make the point that many of these families and people need help every day and that services are severely lacking especially for adults with FASD. Those FASD individuals who are successful are so because they have been fortunate enough to have a strong advocate who supported them and fought for them throughput their lives. With all that I do appreciate Vanessa’s work on this subject. Greater public understanding is greatly needed.