An educator in the field of Fetal Alcohol Spectrum Disorder (FASD) is sharing on the importance of breaking the stigma when it comes to dealing with the condition and having conversations about the topic.
“Fetal Alcohol Spectrum Disorder is caused by pre-natal alcohol exposure,” says Jen Willes, a registered nurse who works with Prairie Central FASD Association.
Willes explains it shows up in a range of issues and “looks a little different in everybody.”
“The alcohol that is consumed during pregnancy actually damages the cells of the developing baby.”
The FASD educator notes people on this condition face a variety of life-long challenges but have a multitude of strengths.
Strong points
Willes says people with FASD are “immensely kind, generous, helpful and very lovely human beings.”
“The best we can do for someone with FASD is to provide support to help our communities understand what FASD is and to surround them with people that understand their brains and behaviour.”
The educator says behaviour is always a way of communicating for someone that may not have the words.
Challenges
Stigma is a big challenge that individuals with FASD face, says Willes.
“FASD is a hard subject. It is not well understood. One of the things that I do is try to help people understand it in a way that’s really kind and helps to break down some of the stigma.”
Prevalence
On the issue of prevalence, FASD affects about 200,000 Albertans according to the 2023 Canadian Substance Abuse Survey. Those numbers also indicate about 1.5 million Canadians are affected across the country with about 79.4 per cent of Canadian women reporting that they consumed an alcoholic beverage.
“FASD has a higher prevalence rate than autism, Tourette’s, cerebral palsy, and down syndrome all put together. More people have FASD than all four of those,” says Willes.
About 60 per cent of pregnancies are unplanned, putting many unborn babies at risk of exposure to alcohol during pregnancy.
Breaking the stigma
Willes adds part of breaking down the stigma is understanding the reasons that women consume alcohol while pregnant.
“It’s for the same reason that everybody else consumes alcohol. Just because we are pregnant does not mean that all those reasons go away.”
Also, at the instant of conception, a woman does not know that she is pregnant, notes Willes.
“So, if you have a habit of consuming alcohol, you may not know that you’re pregnant for weeks. During that time, alcohol can still be damaging that baby. Lots of women stop drinking when they find out they are pregnant. But how much time has passed.”
Noting, we are not “walking a mile in her shoes,” Willes says, “We have to break down the stigma and stereotypes around FASD.”
Willes started her nursing career in 2001. She has worked at the Royal Alexandra Hospital with expecting families. Also, lactation consulting with mothers, along with community and pre-natal practice prior to her FASD educator role.
“Part of the work that I do now is how do we as professionals in healthcare, addiction services and mental health have conversations with women about substances and pregnancy in a way that is really open and kind.”
Willes says her language has shifted to having a more open-ended conversation. For example, she may ask, “What were your habits around alcohol before your pregnancy? When did you find out that you’re pregnant? Have your habits around alcohol changed?”
Willes adds one of her peers has a more direct approach pointing out that “alcohol is bad for our babies, let’s talk about it.”
Legal substances
Substances that are legal like alcohol are more socially acceptable compared to illegal substances. Willes refers to alcohol as “one of the big four.” The others being:
- Cannabis
- Smoking/vaping
- Prescription opioids
“Legal substances that potentially can be very harmful for us as adults and very harmful for our babies as well,” says Willes. “Just because a substance is legal does not mean that it’s safe.”
Resources
The FASD networks of Alberta cover the province. Also, there is the Saskatchewan Prevention Institute.
“All of the resources across the country can be found at the Canada FASD Research Network,” says Willes. “They help us to disseminate the most current information.”
