EDMONTON — On International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day, advocates warn shaming women may be doing more harm than good for at risk mothers and their babies.

“When we focus on FASD as simply being woman drinks alcohol causes FASD, we do a disservice to women as well as to the infants. FASD is a community issue, so awareness really needs to focus on what are the reasons behind a woman’s alcohol consumption while she’s pregnant,” said Lisa Rogozinsky, co-ordinator of the Edmonton and Area Fetal Alcohol Network on Sunday.

According to provincial estimates, nearly nine in every thousand babies in Alberta are born with FASD — around 500 every year — meaning there are more than 46,000 Albertans with FASD.

FASD describes a wide range of physical and mental disabilities caused when a mother consumes alcohol during pregnancy, including physical birth defects, developmental delays, learning disabilities, memory problems, as well as difficulties in communicating their feelings and understanding consequences.

“When we don’t support people with FASD the way in which they need, what we see are these secondary challenges that can be devastating,” said Rogozinsky.

Those with FASD can sometimes struggle with learning from past experience and understanding risks or consequences, making them vulnerable to high risk behaviours.

For children, their symptoms can disrupt their ability to learn and interact with their classmates at school.

In adults, it can cause issues with maintaining employment, addiction, homelessness and trouble with the law.

A 2011 study of Canadian inmates found 10 per cent suffered the effects of FASD despite not having been diagnosed before intake into the prison system.

“People who have FASD, they have brain differences. That means how they learn, how they respond is going to look a little bit different than a neurotypical brain. The more we recognize this, we can support the individual the way they need,” said Rogozinsky.

While messaging that FASD is one hundred per cent preventable is often repeated, Rogozinsky said FASD needs to be treated as a community issue rather than a moral failure on the part of a mother.

“We need to take a social determinative health perspective when it comes to prevention. Prevention is not about telling women not to drink, it’s about supporting them so that they capacity to abstain from alcohol,” Rogozinsky said.

For example, she would like to see those trying to prevent FASD look at other factors that may influence a woman’s ability to abstain from alcohol during pregnancy, such as homelessness or domestic violence, and provide targeted resources for pregnant women with chronic alcohol addiction issues.

“Resources are lacking for women who are pregnant and have substance abuse concerns, resources that are sensitive to their needs,” said Rogozinsky.

Just like messaging warning about the dangers of drinking and driving starts well before a child can drive a car, Rogozinsky said messaging about planning pregnancies and the importance of abstinence before and during pregnancy — for mothers and supportive fathers alike — needs to start earlier.

“Let’s start really young with kids in elementary school,” Rogozinsky suggested.

For those with FASD or who believe they or their loved one may be affected by the disorder, Rogozinsky said the Edmonton and Area Fetal Alcohol Network is a collective of resource providers working together to offer a full suite of support.

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With early diagnosis, intervention and one-on-one support, Rogozinsky said those with FASD can recognize differences in their cognitive abilities or behaviours before they cause much larger problems.

On FASD Awareness Day, in a written statement Alberta Minister of Community and Social Services Irfan Sabir said, “we are dedicated in our efforts to raise awareness and educate Albertans on how to prevent FASD. And we want individuals affected by FASD to feel they can reach out for help without fear of shame or stigma. Across the province, there are 12 FASD service networks that offer diagnosis, assessment, prevention and support for those impacted by FASD.”

“We remain committed to providing funding to support FASD assessment and diagnosis, prevention and support programs for those living with FASD throughout the province,” Sabir continued.

Claire Theobald is an Edmonton-based reporter who covers crime and the courts. Follow her on Twitter: @clairetheobald

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