Those living with fetal alcohol spectrum disorder, FASD, face a future with little support, and a lack of understanding that is rife with racist assumptions.
That is the finding detailed in a recent report by the Representative for Children and Youth, Dr. Jennifer Charlesworth, and echoed by Caitlin Toews, operations director of the Asante Centre in Maple Ridge.
The Asante Centre supports those living with FASD, a term, according their website, that describes the level of developmental diversity a person may experience due to prenatal alcohol exposure.
Toews called the report “refreshing”.
“Having been in this sector for a decade myself, honestly there were no surprises here. We have seen these same challenges over and over again,” she said.
The Government of Canada reports about 3,000 babies a year are born with FASD, and around 300,000 people across the country are living with the condition.
Effects can differ greatly depending on how much alcohol was consumed during pregnancy, how often, and when.
According to the government website, health effects can include: learning disabilities, particularly mathematical concepts; difficulty understanding the consequences of actions; depression; obsessive-compulsive disorder; physical disabilities like kidney and internal organ problems; and skeletal abnormalities like facial deformities.
And, the website states, “research suggests that the occurrence of FASD is significantly greater in Aboriginal populations,” in addition to those living in rural, remote and northern communities.
However, there are many assumptions people make when it comes to FASD, and as highlighted in the report, the assumption that FASD is an Indigenous issue is one of them, said Toews.
“FASD does not have a tie to any specific group or culture,” she explained.
Also, FASD is not a result of alcoholism. There are many reasons that women drink while pregnant. And, it is not 100 per cent preventable, she said.
“To believe that it is 100 per cent preventable is simplistic at best,” noted Toews.
“The fact of the matter is that approximately half of Canadian pregnancies are unplanned and approximately 80 per cent of women drink alcohol, so unless and until there are pregnancy tests that can test at conception, and reliable supports in place for women who may become pregnant, FASD will not be 100 per cent preventable,” she asserted.
The report, Excluded: Increasing Understanding, Support and Inclusion for Children with FASD and their Families, detailed the inequities in services available to children with FASD, the general lack of understanding about the condition, and examined the “structural racism” that, “skews the referral process for First Nations, Métis, Inuit and Urban Indigenous children toward an assessment of FASD.”
It called for immediate and long-term action by the provincial government to improve supports and services to children living with the condition, along with their families.
Charlesworth called current supports and services for children with FASD “meagre”, in comparison to other children with special needs.
“FASD has been left undefined in the B.C. special needs service delivery model. Those living with FASD, whether diagnosed or not, can and do slip through the cracks of almost every program stream. That’s unfair, and I’m calling on government to take much-needed action to rectify this,” she said.
Toews believes that society has come a long way over the past 20 years, but, she added, there is a lot of room for improvement when it comes to support services.
She would like to see better education around FASD in the school system and FASD-informed support in the addictions treatment and recovery sector.
“FASD and problematic substance use can go hand in hand and traditional treatment approaches can be very difficult for a person with FASD to engage with successfully – this is true of many brain-based disabilities,” Toews said, adding she believes more support services are urgently needed, and more funding is necessary to tackle wait-lists for those waiting to access services.
“For a lot of people we see who are coming for an assessment, the diagnosis and potential supports that may accompany the diagnosis can mean the difference between life and death, or at the very least a big difference in quality of life,” she said.
“But until there are adequate supports for people who get a diagnosis, the diagnosis itself does not translate to tangible action.”
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