Participants in a pregnant flash mob repeatedly cross Yonge and Dundas Streets as part of Fetal Alcohol Spectrum Disorder (FASD) Awareness Day in Toronto on Tuesday, September 9, 2014. FASDay, started in Toronto 15 years ago, is celebrated in 42 countries around the world. FASD affects one in one hundred Canadians. The Canadian Press Images PHOTO/FASworld Canada
Fetal alcohol syndrome a complex problem:
Shame-and-blame approach won’t work
Brian Giesbrecht has raised interesting observations and suggested some solutions to the issue of fetal alcohol spectrum disorder (Inquiry needed into fetal alcohol syndrome, Dec. 19). His article is important in that it again brings up the argument FASD is a disability and the fact that we have not been successful in preventing its occurrence.
To read Brain Giesbrecht’s article, click here
Recent data in Europe and the U.S. suggest the prevalence is higher than what we estimate in Canada as being one per cent of the population; in fact, the prevalence may be several times higher, approaching four to five per cent. We know certain genetic variants increase risk and make some unborn children more vulnerable to the prenatal effects of alcohol.
Giesbrecht’s assertion that researchers have avoided studying the role of genetics in FASD is contrary to the reality that, in fact, in Canada and Manitoba, researchers have indeed been studying the genetic and epigenetic changes that may be associated with an added risk for FASD (epigenetic changes refer, in part, to life circumstances that can affect the way genes are expressed). For some time now, research has demonstrated that maternal stress, poor nutrition and negative experiences in early life are contributing factors to adverse outcomes in FASD. Fetal alcohol syndrome is not a race-based disorder that affects only indigenous people.
Prenatal alcohol use affects thousands of children in Europe, Africa and in all countries in which FASD prevalence studies have been undertaken.
What is objectionable is the unfair and misplaced blame Giesbrecht attributes to the mothers of these children. Solutions that involve aggressive tactics and measures such as detaining pregnant mothers who drink do not work and further alienate women from seeking medical and other professional help.
These measures only add to the stigma that affects these women. Women do not drink to harm their unborn children. They often come from and live in chaotic situations with a history of neglect and abuse in their own upbringing. They are often part of unhealthy relationships. They frequently suffer from depression, anxiety, post-traumatic stress disorder and have addiction issues. Some drink as a form of self-treatment for depression or low self-esteem or they drink without realizing they are pregnant.
None of this deserves our scorn. A shame-and-blame approach makes matters worse. Availability of treatment programs is very limited and does not meet the huge need.
It is true there is an over-representation of First Nations children in FASD clinics in Manitoba, but this is, in large part, due to a bias in referral patterns. We are more likely to see the children referred by Child and Family Services agencies than at the request of birth parents. A high percentage of children in care in Manitoba are First Nations. There are very few Caucasian children referred to the diagnostic clinic. This is because those agencies are proactive in referring kids in care they believe are affected with FASD, which may not be top of mind for some physicians examining non-aboriginal children with similar symptoms. They may come up with a less inflammatory diagnosis, such as one connected to attention-deficit or learning disorders.
We need to recognize that several generations of First Nations, Inuit and Métis children have suffered because of colonization, residential-school trauma and discrimination. This has resulted in generations of poverty, mental-health issues and addiction disorders. These realities are a major reason that we see generations of affected children among our First Nations people.
We believe Giesbrecht has missed the larger issue of the responsibility of the alcohol industry in the matter of FASD. A greater proportion of profits from sales of alcoholic beverages would go a long way in improving funding for prevention and treatment research in FASD. The industry promotes its products and increasingly directs its advertising at youth and women. We have witnessed rising rates of binge-drinking among younger women and teenagers. It is hard to control or regulate this targeted advertising because of the availability of the Internet and social media.
Our governments should consider removing themselves from marketing and promoting the sale of alcohol. This is clearly a conflict of interest. The Manitoba government has supported FASD research, diagnosis and treatment and should be lauded. To date, the effort has not stemmed the tide of affected children in Manitoba.
Whatever efforts we have taken to prevent FASD, we have clearly failed. Giesbrecht may be right that we need an inquiry, which may help us examine the results of our past efforts and see what we need to do differently. We hope if this happens, an inquiry would include the question of discrimination and racism, and the liquor industry’s and government’s role and responsibility.
Ab Chudley is a pediatrician and medical geneticist with a long-standing clinical and research interest in Fetal Alcohol Spectrum Disorder. Sally Longstaffe is a pediatrician and developmental specialist with years of clinical experience and research in FASD. The views expressed are their own and do not reflect the views or position of the Winnipeg Regional Health Authority or the University of Manitoba
Republished from the Winnipeg Free Press print edition December 22, 2015 A7