Ending FASD’s Worst Stigmas

Around 50 per cent of pregnancies in Canada are unintended. This could mean a person might not be looking for any of the signs and could only find out later in the term that they’re expecting. Without knowing, a person will likely continue with their lifestyle — including medical and recreational substances.  

More than a decade ago, the Red Shoe Walk kicked off to start discussions about Fetal Alcohol Spectrum Disorder (FASD) – a condition that affects upwards of four per cent (4%) of Albertans. This is a condition where a fetus is exposed to alcohol and delays development physically and mentally — which can affect a person for the rest of their lives. FASD is widely misunderstood as a condition, but it’s not only the people living with it who face misconceptions — the worst treatment is often reserved for their mothers.  

Cryptic pregnancies and missing hormones 

The real reasons why someone might drink while pregnant are always much more nuanced. While there is a knee jerk reaction to assume malice or gross irresponsibility, there is a very real likelihood that they never knew they were pregnant at all.  

Approximately one in 2,500 women experience what’s called a cryptic pregnancy. This means everything typically associated with the experience of being pregnant (morning sickness, weight gain, pains, etc.) are not present at all for the duration of their pregnancy — often only learning that they’re pregnant once they’ve delivered their new child.  

This can happen for a myriad of reasons. One common reason occurs in approximately one in 475 pregnancies where the body doesn’t produce the HCG hormone that tells the body it’s pregnant. And while there are biological reasons why someone may not know they’re pregnant and might ingest alcohol while pregnant, the social conditions can play a much larger role. 

Misinformation and social pressure 

Misinformation concerning alcohol and pregnancy is rampant. From alcohol helping pregnant people to sleep, to red wine being a healthier choice, it can be easy for people to rationalize drinking alcohol while pregnant — after all, western culture does have a strong emphasis on normalizing alcohol.  

When bad information reaches vulnerable populations, it can lead to disastrous decisions. Some individuals experiencing poverty (around 10 per cent of women in Canada live on low incomes) are susceptible to misinformation like anyone else. With added stresses like housing insecurity (which affects 28 per cent of women), bad information can begin to pass through one’s better judgement filters. Issues around online media literacy is rampant across our society today and this is only one more area where inaccurate content can do incredible harm.  

Adding to the issue is access to sound medical advice from reputable sources. Many vulnerable people might not have access to a medical professional for advice — whether that’s because of location or even trust in medical establishment. Depending if a person carries trauma around medical institutions (as many vulnerable people do), they could distrust medical experts and instead lean on advice from social platforms. 

While organizations like us, as well as drink manufacturers and establishments are all working to better inform people on the harms of drinking alcohol while pregnant, the social pressures to drink alcohol and potentially misinformed outside influence could lead a person to thinking they are making a fully-informed decision.  

Supporting those affected by FASD 

This is where shaming individuals who drank while pregnant can do even more harm. The frequently cited four per cent of the population is likely an underestimate — because people avoid talking about something that leaves them feeling ashamed. This could even prevent people from seeking out any further supports that could help with their and their child’s quality of life. 

What’s most important is ensuring anyone affected by FASD has the supports they need. This is why Bissell has its Fetal Alcohol Spectrum of Services (FASS), working with the Edmonton and Area Fetal Alcohol Network (EFAN) program providing supports for individuals and families alike with referrals for FASD diagnoses and system navigation to help people find the best services and supports for their individual needs. We also run Hope Terrace — a first-of-its-kind permanent supportive housing complex specifically designed for people with FASD. With wraparound supports in place, the folks who call Hope Terrace home can learn to lean on their strengths to give back to their larger communities.  

While the Red Shoe Walk started to spark conversations about FASD, it’s worth talking about everyone affected by the condition. This includes those who live with FASD and their mothers who may have an experience worth sharing and learning from. Reducing stigma around all dimensions of FASD will help lead us to a better quality of life for those affected by FASD, and better tools to help prevent any future risks of FASD.