Stigma against fetal alcohol spectrum disorder (FASD) can lead to prejudice and discrimination or impact self-esteem for individuals with FASD and their families. A recent study by NeuroDevNet neuroethicists published in the journal Public Health Ethics, suggests that public health practices or policies may inadvertently increase the stigma experienced by those affected by FASD.
A number of public health strategies, both supportive and punitive, have been used to prevent alcohol consumption by pregnant women. Concerns have been raised about the effectiveness of some of these strategies, as well their potential negative effects on underlying beliefs about FASD and the experiences of those affected, including children and adults with FASD, biological and adoptive parents, and foster caregivers.
“Very little research has been conducted on the factors that contribute to stigma for individuals with FASD and how it impacts their lives,” says co-author Dr. Eric Racine, Director of the Neuroethics research unit at Montreal’s IRCM. “Yet, stigma can act as a barrier to acceptance, social interaction, health care or adoption, and can become an important ethical consideration for assessing public health practices and policies for FASD.”
For “It’s a Shame! Public Stigma Against Fetal Alcohol Spectrum Disorder,” Racine, and lead author Dr. Emily Bell conducted a literature review consulted with NeuroDevNet FASD investigators on the issue of stigma to propose a descriptive model based on three themes: personal responsibility and blame towards biological mothers; felt and enacted stigma experienced by children and families; and anticipated life trajectories for individuals with FASD.
“We suggest that three main categories of stigma exist in FASD,” explains Bell, a Research Associate within at NeuroDevNet and the IRCM. “The first is about directing all blame and responsibility towards the mothers, despite the fact this simplifies by leaps and bounds the context that often surrounds and influences women who drink. The second stigma, towards the child and families, is similar to that associated with autism and is based on assumptions that a child with FASD is a troublemaker. Finally, stigma is linked to negative stereotypes about the life path destined for youth with FASD and perceptions that they are likely to encounter trouble with the law.”
To address concerns associated with inadvertent stigmatization by public health initiatives for FASD, the researchers examined public awareness campaigns and diagnostic practices.
“Awareness campaigns aim to prevent the only known cause of FASD, drinking during pregnancy,” says Dr. Bell. “In doing so, however, they may also unintentionally increase the blame towards biological mothers and impact the broader experiences of all those affected by FASD. For example, if such campaigns fail to address social factors surrounding alcohol and neglect circumstances surrounding the behaviour (i.e., when a woman drinks before realizing she is pregnant), they could cause anxiety for women and increasereluctance to seek medical care for their pregnancy or drinking.”
“As for diagnostic practices, Canadian guidelines developed in 2005 were a good starting point for the standard diagnosis of FASD across the country, but our research suggests clinicians must strive to minimize biases in diagnosis, despite the fact that the label might knowingly be stigmatizing,” adds Dr. Bell.
“We recommend further analyses to examine whether public health policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD,” concludes Dr. Racine. “Nevertheless, we believe public awareness campaigns should explicitly work to avoid increasing stigma. In addition, to address potential biases in clinical practices, training about FASD prevention, diagnosis, interventions and lifespan trajectory should be incorporated into professional education.”
Fetal alcohol spectrum disorder (FASD) describes a range of adverse developmental outcomes resulting from exposure to alcohol during pregnancy. Individuals with FASD can face a range of physical and mental health issues, which can include difficulties with organization, planning and cognitive flexibility that are important for adapting to the demands of daily adult life. The secondary effects of FASD (such as difficulties at school, trouble with the law, challenges living independently) influence the life experiences and quality of life for persons with FASD and their families. The primary prevention of FASD has been challenged by a lack of consensus, particularly around what policies to adopt in advising women about acceptable levels of alcohol during pregnancy.
“It’s a Shame!” was supported by NeuroDevNet, the Networks of Centres of Excellence of Canada and the Fonds de recherche du Québec – Santé (FRQS). Collaborators on the study include Network Investigators Gail Andrew from the University of Alberta, Nina Di Pietro from the University of British Columbia, Albert E. Chudley from the University of Manitoba, and James N. Reynolds from Queen’s University.