FASD an ‘invisible’ disorder, experts say

Fetal Alcohol Spectre Disorder effects 140 Manitobans each year

CHRISTINE LEONG STAFF

FASD is a result of prenatal exposure to alcohol that can cause damage to the developing brain, which can then lead to deficits in cognitive functioning. The prenatal damage is permanent, and is associated with impaired reasoning skills and difficulty controlling one’s behaviour.

“In Manitoba, we estimate that a minimum of 140 children are born affected each year,” said Dr. Albert Chudley, a physician and geneticist of the University of Manitoba and Health Sciences Centre, and author of a primer on FASD in Manitoba. “Some of these children with Fetal Alcohol Spectrum Disorder look normal, but have a brain dysfunction.”

There is no cure for FASD. However, Chudley pointed out that early diagnosis and intervention are the first steps to moderating the effects of FASD and “the earlier the diagnosis, the better it is for the child.” People with FASD are often supported by an interprofessional team of specialists including a physician, psychologist, social worker, and speech pathologist among others.

“There are no accurate statistics. We estimate that [the number of people affected] can be very high. It’s an invisible disorder in a lot of cases,” said Judge Mary Kay Harvey.

Harvey noted that individuals with FASD who come into conflict with the law may require a different mode of punishment. “These individuals are often present with high verbal skills and with an eagerto- please attitude. They are difficult to pick up in court.”

FASD can result in a range of neurobehavioral deficits including the inability to understand the consequences of one’s behaviour, which according to Harvey poses a challenge to the system. Harvey noted that resources are scarce in the community for people with FASD and stated that “there is this expectation from them to learn from past behavior,” when in fact they do not have the mental capacity to do so.

“Many times people think it’s a mental health disorder or something other than it really is,” asserted Brenda Bennett, founding director of FASD Life’s Journey, one of the two agencies in Canada that focuses specifically on FASD in late adolescents and adults. “It’s a physical disability because the central nervous system is damaged,” she explains.

Bennett noted that FASD is a disorder that is often misunderstood and that “there is so much negative stigma” related to it.

Chudley highlighted the importance of having a “paradigm shift” in the perceptions of individuals with FASD by being able to see that a child is “frustrated and challenged” rather than “bad.”

There is also a need to shift the negative views of mothers with affected children.

“I’ve never met a woman who intentionally sat down and said, ‘I’m going to hurt my child by drinking,’” said Don Shackel of Manitoba’s First Nations Education Resource Centre. “Everyone desires to not have a child with FASD. It’s something we all share.”

According to Chudley, there may be a two- to three-week “grace period” after conception during which women can drink without significant consequences to the developing fetus. However, it often takes five to six weeks before a woman finds out she is pregnant. It should be noted that the provincial government’s FAS strategy states there is no safe time to consume alcohol during pregnancy.

Future aims for FASD prevention and intervention in Manitoba include establishing financial support for adolescent and adult diagnosis, more support for families and advocacy and mentorship programs.

Programs such as Stop FAS, the Manitoba Youth Justice project, and increased community and government involvement are just a few of the strengths and successes for helping people with FASD in Manitoba.