After years of planning and a Memorandum of Understanding signed at last year’s Annual General Assembly, the first Foetal Alcohol Spectrum Disorder (FASD) Diagnostic and Intervention Clinic in the province of Quebec is coming to Eeyou Istchee. The Grand Council of the Crees, in partnership with the Cree Board of Health and Social Services (CBHSSJB) and the Cree School Board (CSB), announced the creation of the clinic September 9, International FASD Awareness Day.
Because FASD by definition is a spectrum disorder – meaning it involves many different disorders related to the mothers having consumed alcohol during pregnancy – it is very difficult both to diagnose and to treat. For that reason, the new FASD clinic will consist of a group of doctors and caregivers, including a pediatrician, a neuropsychologist, a speech-and-language psychologist, an occupational therapist and the team coordinator.
“In order to diagnose, you need a team of professionals. It’s not just one diagnosis,” said Evike Goudreault, coordinator for Special Needs Services to the Cree Health Board. “It’s a clinic of professionals who are going to be travelling to the northern Cree communities and doing the diagnoses, but also putting in the care plans for the individuals who will be diagnosed.”
The team includes professionals based in Montreal as well as those who live in the communities of Eeyou Istchee. As the clinic moves from community to community, the doctors and caregivers will study the cases together to determine their actual diagnoses.
Goudreault says that the clinic will visit each of the communities once a year for periods of several days, during which the clinic will be able to see several children.
“Right now we have certain children who have been identified as being at risk for having FASD and the other diagnoses,” she said. “So what we’re doing is we have the more critical children we’ll want to see and diagnose right at first. Within the year, it’s hoped that we’ll have made one visit per community. It depends on the communities. And we’ll definitely have to go back around to the communities again in the following years.”
However, Goudreault underlines, the clinic will do more than simply provide diagnoses.
“We didn’t want to start diagnosing before we had some means of supporting the children and the families,” she said. “Our main priority is supporting them, not just labelling them. We want to help to give them services that’ll help them achieve their full potential.”
Following diagnosis, team leaders will remain in each community to work with members of the Cree School Board and the Cree Health Board in providing continuing care to the children already treated by the clinic.
FASD affects roughly 1% of children in communities all across North America, both urban and rural, Indigenous or not. Its effects include behavioural problems and learning disabilities that later in life can lead to difficulties finding and keeping work and housing, confronting day-to-day problems, and staying out of legal trouble. By helping diagnose young people early on, the FASD clinic will be able to provide children with treatments that help smooth their path in the world by illuminating for them the nature of their disability.
“Children who are diagnosed [with FASD] feel relief in knowing that it’s not their fault, and that there’s something that can be put in place to support them,” Goudreault said. “A lot of the kids go through life thinking, ‘Something’s wrong with me. I want to be like the other kids. I know I’m not. I don’t know why.’ [A diagnosis of FASD] gets them to understand that their brains work differently. They learn strategies to adapt.”
The clinic will also be useful for parents, teachers and caregivers, Goudreault says, because too often symptoms of FASD get written off as simple misbehaviour, or leave parents confused about why children are acting the way they are. Diagnosis and treatment, she says, includes explanations of the different disabilities related to FASD and provides parents with strategies for dealing with FASD-based behaviour.
“One example is sensory integration problems,” she said. “[Children suffering from FASD] hear a lot of noises, they see a lot of visual things. It’s over-stimulating to their brains, and they just can’t sit still. Understanding why they behave that way enables to better understand those behaviours and accept the fact that the child is not misbehaving because he’s a bad child, but because he has a certain amount of brain damage due to the alcohol.”
While in some cases, children can take medication for FASD-related Attention-Deficit Disorder, Goudreault points out that most of the treatment for FASD has to do with changing behaviours and approaches.
“The child will live with FASD for the rest of his life,” she said. “It’s an adaptation that they have to go through – teachers have to adapt their strategies with these children, parents have to adapt as well. The kids will have it for life, but it doesn’t mean they will have disability that will prevent them from functioning. They can function, and using the best practices and the better strategies, they can function much better.”