The FrameWorks Institute completed a report on the overlaps and gaps between expert and public understandings about FASD. Access the full report on the CanFASD website here and read on for highlights from this excellent project.
Interviews were conducted in Manitoba with members of the public and with FASD experts. The main questions were:
- What is FASD?
- How does alcohol affect fetal development?
- What are the causes of alcohol consumption during pregnancy?
- What are the effects of FASD?
- How can FASD be prevented and addressed?
What are the gaps between expert and public understandings of FASD?
- Causes of FASD:
- The public believes strongly that a woman’s individual choice to consume alcohol is the only relevant cause of FASD.
- Experts focus on contextual factors and social determinants (e.g., the environment in which a woman lives, her past experiences of trauma, chronic stress, discrimination, etc.) and biological factors (e.g., a woman’s metabolism, sensitivity to alcohol, etc.)
- Fetal response to alcohol:
- The public believes that the effect of alcohol on a fetus can be explained simply: a woman consumes alcohol, a fetus absorbs it, and because the fetus is so small, the effects are substantial and devastating. When the public is uncertain about why some mothers can have a drink or two during pregnancy without any ill effects, they default to “fate” as their explanation.
- Experts know that whether alcohol has a greater or lesser effect on the fetus depends on many factors, including the biology of the pregnant woman and her susceptibility to alcohol, the biology of the fetus, and the woman’s social environment (e.g., experiences of trauma or chronic stress).
- Brains:
- The public believes that once anything disrupts normal development, the damage is done, and nothing can change.
- Experts know that cognitive systems show great plasticity in the early phases of development and throughout childhood.
- Pre-pregnancy experiences:
- The public reasons that once a woman becomes pregnant, her identity changes so fundamentally that she should be able to stop drinking or cease any behaviour that may be harmful to the fetus.
- Experts understand that a woman’s challenges (e.g., addiction) do not simply disappear when she becomes pregnant.
- Communities affected by FASD:
- The public thinks of FASD as largely the problem of communities living in poverty, especially Indigenous communities.
- Experts understand that, given Manitoba’s drinking culture, FASD is the possible outcome of any pregnancy, regardless of socioeconomic status, cultural background, and race and ethnicity.
- Stigma:
- The public believe that stigma can, in fact, be a useful tool to force women to make better choices regarding alcohol use.
- Experts stress that it is crucial that women who consume alcohol while pregnant be accepted without judgment when they seek supports.
- Solutions:
- The public is highly fatalistic when thinking about programs and policies that might improve life for people with FASD and prevent future cases.
- Experts believe that people with FASD can lead productive and fulfilling lives and, importantly, that prevention is possible.
- Prevention:
- The public believes that FASD is a matter of women’s individual choices and the only preventive approach that will work is to restrict those choices, either directly via policies and law or indirectly through stigma. The public believes that stigma and shame are important tools to pressure women into choosing not to drink during pregnancy.
- Experts believe that to prevent FASD, it is crucial for all women to be able to access accepting, non-judgmental, and culturally competent services. Experts are adamant that stigma and shame are corrosive, counterproductive, and inhumane. Punitive practices only make it more difficult for women to get help and for diagnoses to be made.
- FASD in Indigenous communities:
- The public believes that society must address discrimination and racism, but sees these goals as only tangentially related to FASD prevention.
- Experts explain that, to address FASD, society must address colonization and systemic racism to repair the cultural, social, and economic harm inflicted on Indigenous communities.
What are the overlaps between experts and the public understandings of FASD?
- They see FASD as an important issue that encompasses a range of physical, neurological/cognitive, and behavioural challenges. The public generally understands the broad contours of the disorder and its biological cause: prenatal alcohol exposure.
- They know that FASD is largely an “invisible disability.” Both experts and the public understand that most people with FASD do not have distinguishing physical characteristics, and it is not always possible to know that someone has FASD based on a brief interaction.
- They see that prenatal exposure to alcohol affects the process of fetal development, which has long-term consequences.
- They believe that women use alcohol during pregnancy for many of the same reasons as nonpregnant people, especially to cope with mental health issues and stress.
- They understand that addiction affects a woman’s ability to control alcohol use during pregnancy.
- They think that Indigenous communities face contextual disadvantages that translate into disproportionately high rates of FASD in Manitoba. Both experts and members of the public understand that Indigenous communities face higher rates of poverty, isolation, and discrimination and that these experiences can contribute to FASD.
- They understand that FASD affects communities by taxing social services.
- They agree that social services should be available for adults and children with FASD.
- They consider education important to the prevention of FASD.
This is getting long, so I’ll share the communication recommendations in another post! In the meantime, take a look at the full report here.
Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta. I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences.