Services for adults and children with Autism Spectrum Disorder is the focus of a project underway at the Cariboo Chilcotin Child Development Centre (CDC) in Williams Lake.
With funding from the Canadian charity, Autism Speaks, the CDC is collaborating on the project with the University of British Columbia, the University of Calgary, and the Autism Society of Alberta.
“We are trying to learn more about the experiences of families living in a rural or remote community who have someone with ASD,” said Dr. Anthony Bailey, chair of child and adolescent psychiatry at UBC.
Bailey was in Williams Lake to meet for the first time with CDC staff about the project.
Williams Lake was one of the sites chosen for the project because the CDC has taken the initiative to set up the Cariboo Autism Centre, Bailey said.
“Also because they are going to be the first satellite site for the Pacific Autism Family Centre, which is a new initiative where the hub is in Vancouver.”
Another reason for selecting Williams Lake is because of the region’s First Nations population.
“We know across Canada that there is probably under diagnosis of autism spectrum disorder in First Nations communities, and we’d quite like to know what factors lead to that.”
The two other sites for the project are in Fort McMurray, Alberta and a nearby First Nations community.
Under diagnosis also exists in rural communities generally, said CDC executive director Nancy Gale.
“Not every rural community has a child development centre and not every rural community has an autism centre,” Gale said. “That’s why we want to look at Fort McMurray and at Williams Lake because they are in different stages of evolution in development of services for adults and children with autism.”
Part of the project will involve setting up focus groups with representatives from families and other people who have involvement with people who have ASD to get a better idea of their experiences, Bailey said.
“We want to hear particularly what services people are not getting, to identify the gaps.”
Shirley-Pat Chamberlain, who is presently a PhD candidate with the University of Edinburgh, has come on board to help run the focus groups for the project, she said.
The other half of the project will be to use the process as a catalyst to help develop more services and infrastructure, Bailey said.
Before opening the Cariboo Autism Centre in Williams Lake in May 2015, there were nine children involved in the CDC’s autism programming, Gale said.
Today there are 57 children with a diagnosis accessing the centre’s services.
All of the children live in Williams Lake, with the exception of one that travels in from 100 Mile House.
“Typically they come for behaviour intervention which is a service provided to three to five year olds,” Gale said. “We also have school-age programs for six to 19 year olds.”
Bailey hopes the project will raise the profile of autism in the mind of the public.
“We heard from one of our behavioural interventionists this morning that families of young kids still come across a lot of stigma if they take their child to the super market and the child reacts badly to something,” he said. “It’s a problem world wide.”