A new study suggests fetal alcohol spectrum disorder is more common than previously thought – and may even be more common than autism.
The study, conducted by the Centre for Addiction and Mental Health (CAMH), estimates the prevalence of FASD is between 1.8 and 2.9 per cent in Canada.
That’s higher than the previous estimate of one per cent. It’s also higher than the prevalence estimate of autism (at 1.5 per cent), spina bifida, and Down syndrome.
Although the study focuses on kids in the Greater Toronto Area, the researchers say their findings likely apply to other Canadian cities as well.
FASD -- the term for all severities of fetal alcohol syndrome -- is a form of incurable brain damage that occurs when an unborn baby is exposed to alcohol in the womb.
The effects can range from mild to severe and typically include learning disabilities, behavioural and physical problems.
Many with FASD have trouble with impulse control, anger, understanding the consequences of their actions, and learning new skills. The disorder can lead to troubles with law enforcement and the need for lifelong care and mentorship.
Understanding the true prevalence of the disorder has been difficult in part because in mild cases, the condition often goes undiagnosed. So CAMH agreed to conduct a prevalence study as part of global research by the World Health Organization and U.S. National Institute for Alcohol Abuse and Alcoholism (NIAAA).
The study included 2,555 children between the ages of seven and nine, from 40 schools in five Greater Toronto Area school boards.
During the first phase, students were pre-screened to assess their behaviour and learning problems, as well as screened for the facial features characteristic of FASD, which can include a thin upper lip, a flat nasal bridge, and a small head circumference.
Children who met one or more of the criteria then underwent a neurodevelopmental assessment. Eligible mothers were also invited for interviews.
Based on their assessments, the team of Canadian experts in FASD diagnosis estimated the prevalence of FASD to be between 1.8 and 2.9 per cent.
Dr. Svetlana Popova, the study's principal investigator who is also a senior scientist at CAMH's Institute for Mental Health Policy Research, says her team’s findings show the need for greater supports for people with FASD and their families.
Equally important is the need to remind women that FASD is entirely preventable, which is why she says women need to avoid all alcohol during their pregnancies and even before.
“Women should abstain completely for full nine months and they should abstain when they are trying to get pregnant,” she says.
Linda Boyd understands the effects of FASD because her 10-year-old granddaughter Jen has the condition.
She says Jen often has trouble controlling her behaviour and becomes angry and frustrated easily. Her granddaughter has destroyed several iPads and TV remotes, often chews holes in her clothes, and hits herself repeatedly in the head when frustrated.
“She will hit herself and that is indicating that something is going on there that she can’t deal with right now and she has to vent that out,” Boyd says.
Boyd says Jen’s problems began in infancy. She was late meeting all the usual milestones of crawling and walking, had trouble feeding, and was rough and angry around pets. When Jen was diagnosed with FASD, it finally made sense to her grandmother.
“I can’t say I was surprised,” she said. “It is not a great feeling. You know they are going to need lifelong help.”
But she says even with all her granddaughter’s outbursts of anger, she can often be loving and affectionate, even if she doesn’t grasp her own diagnosis.
“It’s sad because it is not her fault. She doesn’t understand herself sometimes and she does feel a lot of remorse after she has done some the things she has done,” Boyd says.
She says caring for someone with FASD is emotionally, physically and financially draining, which is why she hopes this study helps demonstrate the scope of FASD in Canada, and leads to more funding for supports for those with the condition.
For now, Boyd says she manages, but she wonders about the future for her granddaughter.
“My fear is as she gets older, who is going to be looking after her?”
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip
