More than a million Canadians could have fetal alcohol syndrome disorder. Many children with FASD are misdiagnosed or not diagnosed at all. 'One of the risk groups is actually professional women who binge drink'
Many children with FASD are misdiagnosed or not diagnosed at all. 'One of the risk groups is actually professional women who binge drink' Up to three per cent of Canadians — or about one million people — could have fetal alcohol spectrum disorder, and researchers say this is probably an underestimate.
A report released on Tuesday by the Centre for Addiction and Mental Health upends current estimates of the prevalence of FASD prevalence in Canada to date. The results are based on a survey of 2,555 seven- to nine-year-olds in the Greater Toronto Area, one of the largest sample sizes used in a Canadian study and according to the team’s lead researcher, Dr. Svetlana Popova, the first survey reflective of Canada’s diverse population.
“We are more confident now,” she says, that “FASD can happen to anyone, regardless of race, ethnicity, socioeconomic status.”
Previous Canadian studies on FASD have focused on narrow groups such as kids in care. They have also relied on medical records to estimate the prevalence of the disorder.
But as Popova explains, many children with FASD are misdiagnosed or not diagnosed at all. So her team — which included leading geneticists, psychologists and paediatricians — independently assessed each student.
PREVALENCE* OF SUSPECTED FASD
Among elementary school students, Greater Toronto Area, Ontario, Canada, Estimated Rate Per 1,000 Students
*The prevalence estimates took into consideration the selection rate, which accounted for the students and their mothers who dropped out or were lost to follow-up during each respective phase of data collection.
Source: Centre for Addition and Mental Health
Mothers also filled out questionnaires regarding alcohol consumption, although Popova and other experts believe the stigma of drinking during pregnancy may have discouraged some women from accurately reporting their intake (or participating in surveys at all).
Previous estimates of the prevalence of FASD hovered around one per cent. The survey by Popova and her team suggests it may be more common than autism spectrum disorders, which according to a recent report affects 1.5 to two percent of young people in Canada.
Popova’s study also suggests that the risk of FASD is not confined to marginalized groups.
“One of the risk groups is actually professional women who binge drink,” says Deborah Goodman, the director of the Child Welfare Institute at Children’s Aid Society of Toronto. “It’s easy to keep at a distance and say, ‘That’s not me — it relates only to those in poverty and despair,’ but that’s just not the case with FASD. It’s an equal opportunity brain injury.”
Mean Composite Index Scores Among Students with Suspected Fetal Alcohol Syndrome (FASD) and Typpically Developing Control Children, Canada
*WASI-II = Wechsler Abbreviated Scales of Intelligence, 2nd edition
**WISC-IV = Wechsler Intelligence Scale for Children, 4th edition
Source: Centre for Addiction and Mental Health
Goodman says children as young as 12 need to be educated about the potential consequences of alcohol. A larger cultural shift among adults is vital as well.
“Look at the prevalence of alcohol — it’s not just in the low income areas, alcohol is consumed by all strata of society,” she says. “So in tackling FASD it actually means tackling the bigger problem of ‘let’s together and have a drink,’ which is part of our culture.”
There is no safe amount of alcohol to drink while pregnant, says Popova. The impact of prenatal alcohol exposure depends on several factors, including the amount of alcohol a fetus is exposed to, the genetics passed on by both parents and other environmental influences.
Fetal alcohol syndrome is the most severe form of the disorder, and can include growth deficits, problems with coordination, visual motor difficulties, significant developmental delays, attention deficit and hyperactivity. The mildest disorder on the spectrum, which may also cause behavioral and cognitive difficulties, is alcohol-related neurodevelopmental disorder.
Children with FAS made up 14 percent of the cases Popova’s team suspected of having the disorder. The majority, however, about 75 per cent, fit the profile for alcohol-related neurodevelopmental disorder.
Popova has estimated resources consumed by Canadians with FASD — including educational, medical, legal — cost $1.8 billion in 2013 alone. But according to Dr. Kaitlyn McLachlan, a professor at the University of Guelph who studies FASD in prison populations, that number could be drastically reduced if effective policies and intervention programs existed.
“I’m glad to see we’re getting past the ‘why should we do this research’ to the ‘we need to do this research’ stage.”
Greater Toronto Area Compared with Ontario and Canada, 2015
*Defined by CAMH Monitor as current drinkers (those reporting drinking alcohol in past 12 months) plus former drinkers (those drinking alcohol in their lifetime, but not in the past 12 months).
Source: Centre for Addiction and Mental Health