Children born with Fetal Alcohol Syndrome (FASD) often go undiagnosed for years because of a persistent and hard to dispel stigma attached to the condition. That stigma is most often borne by mothers, passed along to their offspring, and, all too often, wreaks havoc on normal family life. It’s hidden away and whispered about in all too many households.
What’s it like to raise a child diagnosed with FASD? Speaking at the opening of the recent Canadian FASD Conference held June 9 in Moncton, New Brunswick mother Nadia Mallet provided a pithy and revealing answer: “It’s like starting a blender without a top.” You can expect a mess and cleaning it up can and does become a mother’s full-time job.
Adoptive mother Alicia Munn of Fredericton, Chair of the N.B. FASD Parent Advisory Committee, went into more graphic detail in a recent exclusive interview and later at the conference. “There’s a lot of stigma, shame and humiliation associated with FASD,” she told me. “Brain damage adversely affects the child’s neurological development, all too often leading to lifelong dependence on social supports and, in some cases, a life marred by criminality.”
Advocating for, and supporting her 21-yer-old son Joseph Munn, was an exhausting thirteen-year struggle to get a clinical diagnosis that lasted from age 5 to 18 years of age. She guided, rescued and put him back on track multiple times, as he moved from school to school in Fredericton, five or six times.
Munn’s a nurse by profession and she also speaks with a ton of lived experience. Supporting and encouraging a FASD teen through the ups and downs is particularly stressful and unpredictable. “It’s like dealing with a half-wired house with a short circuit,” she says. “Things go off track and it requires periodic interventions to provide executive function support.” Not every teen with FASD has a resilient “super mom” like Munn.
Alcohol and drinking are very much a part of our lives and so much so that we do not always recognize its adverse societal consequences. One of the most debilitating and lesser known is FASD affecting at least 4 per cent of all live births, or 250 children out of the province’s 6,200 births each year. That’s more than Autism Spectrum Disorder (ASD), cerebral palsy, and Down Syndrome combined.
Talking openly about FASD is far more common in Western Canada, particularly in Alberta, where the national organization is most deeply rooted. First diagnosed in 1974, FASD is gradually gaining acceptance as a recognized clinical condition eligible for social supports. Most of the medical research and health reform advocacy stems from the University of Alberta and the Institute for Health Economics.
The Canada FASD Research Network (CanFASD) was established in 2005 and since then has been acting as a catalyst for developing and expanding support programs for families affected by FASD right across Canada. The Executive Director, Audrey McFarlane, founder of the Lakeland Centre for FASD, is based in Cold Lake, Alberta, and has devoted over twenty years of her life to community outreach, prevention, and support program development.
Securing funding for FASD research and advocacy has been a challenge, McFarlane told me in a recent interview. Competition for governmental support in terms of funding is fierce and FASD currently receives a fraction of what is provided to Autism SD research and programs from province-to-province across Canada. “We don’t have any national plan or strategy to focus our resources,” she says. “Most of our efforts are local, offering pre-natal programs to alert mothers to the dangers of drinking and supporting changes in behaviour to reduce the incidence.”
Mothers are most susceptible during the first six weeks of their pregnancy and, as a result, a large proportion of those babies affected are born to women with unplanned pregnancies. High incidence of FASD was first discovered and documented in Indigenous communities. “We know,” McFarlane says, “it’s related to high rates of alcoholism as a terrible legacy of colonialism affecting larger numbers of Indigenous children.”
Programs and systems of support are gradually emerging to improve life outcomes for impacted children. Without such interventions, FASD children and teens experience high rates of incarceration and suicide, and this is particularly true on Canada’s East Coast. What’s encouraging is that New Brunswick is ahead of Nova Scotia and other Atlantic provinces in tackling the unaddressed problem.
Talking openly about FASD is far more common in Western Canada, particularly in Alberta, where the national organization is most deeply rooted. First diagnosed in 1974, FASD is gradually gaining acceptance as a recognized clinical condition eligible for social supports. Most of the medical research and health reform advocacy stems from the University of Alberta and the Institute for Health Economics.
New Brunswick is definitely the lighthouse province in Atlantic Canada. A real pioneer and powerful advocate for FASD awareness was former Moncton MP, the late Claudette Bradshaw, who cleared the path for pediatrician Dr. Nicole LeBlanc, the leading medical researcher who established the clinical guidelines for diagnosis, putting FASD on the provincial medical and social services agenda. Action central for the provincial effort is the Centre Excellence NB, opened in 2012, managed by Vitalité Health Network and based in Dieppe, N.B. Health Minister Dorothy Shephard chose the Moncton CanFASD Conference as a convenient event to announce some $800,000 in additional funding for the Centre for Excellence.
One of the most passionate advocates for FASD prevention and support is Mi’kmaw Elder Noel Milliea of Elsipogtog who opened the CanFASD Conference with a plea to “let our humanism shine though today.” He also provided some rather astute guidance to the predominantly white audience of some 200 parent activists, medical professionals and social workers. “Find the spirit in the child,” he said, “It’s about the children, not just increasing your toolbox. Let’s be careful we don’t stop at labelling them.”
Educators in New Brunswick are increasingly aware of the prevalence of FASD affecting children in the schools. Some 250 children affected by FASD enter the provincial school system each year. In the average school, with some 300 students, a dozen or so students are affected by the condition. It’s visible to those on the front lines of education.
Some of these FASD affected students are diagnosed, but not many, particularly outside of the three major cities. Few, if any, supports are put in place and most are insufficient, so the burden falls back mostly on parents and families, where they are in a position to help their children. A huge FASD support service gap needs to be closed in the province and elsewhere in our region.
*Reprinted from The Telegraph-Journal, Brunswick News, June 17, 2022.
Why do Fetal Alcohol Syndrome Children still go undiagnosed? Why is it such a challenge to secure support in our social service network? Given the prevalence of FASD among kids and teens why is it so hard to attract funding and research dollars? Why are some provinces so much more advanced in providing FASD support compared to others?
Educhatter 