FASD: Understanding the lack of understanding (and making progress)

By Austin M. Davis, Leader-Post May 12, 2015

The University of Regina hosted a conference on Monday targeted at frontline workers who deal with people who suffer from Fetal Alcohol Spectrum Disorder.

Having “spectrum” in its name should indicate there is no single solution to making life easier for those living with Fetal Alcohol Spectrum Disorder (FASD).

On Monday, Michelle Stewart, professor at the University of Regina’s Department of Justice, hosted a workshop and training session on FASD for community workers and professionals. It included a hands-on workshop with strategies to improve communication between workers and those living with the stigmatized disorder.

For those without experience dealing with people with FASD, here’s a snapshot of what’s going on in Saskatchewan and what is being done to improve the lives of those whose development was affected by alcohol before they were born.

The realities

FASD has existed as long as there has been alcohol, but science and medicine did not understand the cause and effect of alcohol on fetuses. As scientific research and technology advance, more information is being gathered to help experts and the public develop a better understanding.

” FASD is a highly-stigmatized condition. It raises a lot of challenges in identifying who has FASD. It’s not a disability that you can easily recognize,” Stewart said.

She said members have indicated there might be as many as 55,000 people in the province subject to FASD. Again, because there’s a spectrum, the symptoms and experiences are unique to each individual.

“The constant refrain is: If you’ve met one person with FASD, you’ve met one person with FASD,” Stewart said.

The problems

FASD can affect any part of the body — including the brain or central nervous system — that is developing during the time of exposure.

“People with FASD struggle in understanding social behaviours of what’s acceptable,” said Cheryl Channon, manager of the FASD Centre at the Regina Community Clinic who led Monday’s workshop and training.

She said people with FASD do not always have the capacity to make the best decision out of a given situation. As a result, they’re very vulnerable without proper supports in place.

“They end up in the justice system because of poor mistakes, poor memory, vulnerability and because of the social influences at play — their own addictions or friends who aren’t the best for them,” Channon said.

She also discussed how emerging research suggests people with pre-natal alcohol exposure experience alcohol differently and may be more prone to addictions.

The efforts

Channon said there are provincial and national corrections conversations about finding better ways to reduce the number of people with FASD who may be in prison for reasons that don’t make sense.

“We’re not saying FSAD is an excuse for any crime, but it’s to find the right setting to find the right sentence that makes sense,” Channon said.

She acknowledged the importance of communication between various support networks, but even a simple step comes with difficulties.

“Confidentiality is a human right and we have to honour that, but we have to find a way where the confidentiality does not sabotage the client,” Channon said.

She said there are support workers, families, doctors and lawyers who do care about helping those with FASD, but it’s taking time to get everyone pushing in the same direction because “we don’t have enough of those people yet.”

The solutions

For Mike Greensides, career facilitator at the Neil Squire Society, Monday’s workshop and training gave him more information and more tools to use when he’s working with a person with FASD.

He learned about how to break information down into more easily digestible pieces and gained a better understanding of the distractions people with FASD have to deal with.

“I wasn’t aware that they get distracted easily, like simple noises like a fan running could throw them off,” Greensides said.

Creating a goal for those living with FASD can be difficult, but Channon’s ideal would be to see those affected be able to reach out to a knowledgeable, positive support person at any time.

“It’s really that simple,” Channon said.