Tracking autism in Newfoundland
New agreement between province, federal agency could help improve services and resources
An agreement between the provincial government and the Public Health Agency of Canada to create a national autism surveillance system is a step in the right direction, according to two advocates in Port aux Basques.
Joan Chaisson and April Billard co- founded Autism Involves Me, a support group for families with children diagnosed with autism spectrum disorder (ASD).
Chaisson said the system could be a valuable tool to determine how many people in the province are on the spectrum.
“When we asked how many children there are on the island ( on the spectrum), the only stats they had were for St. John’s,” Chaisson said.
She said there should be more data available based on children who do an applied behaviour analysis before they go to school.
“That’s government-paid, so how can they not know even how many are taking part?” she asked.
Billard said having data would help make the case for more resources in a particular area.
She said it’s difficult to argue successfully for more support staff in a school if there aren’t numbers to back it up.
“For example, when they give out resources for schools, it’s always based on population,” Billard said.
She said needs-based assessments would lead to better distribution of resources, and this new system could help support those cases.
According to a joint press release from the Departments of Education and Early Childhood Development and Health and Community Services and the Autism Society, the system was described as allowing the sharing of information provincially and nationally.
Education Minister Dale Kirby said the agreement, which has already been signed by three other provinces and one territory, will ensure access to the most up- to- date and accurate information to support the government’s decision-making process.
The objectives of the agreement are to estimate the number of children and youth who have ASD, track the incidence and prevalence of ASD within school- aged children and youth, describe the basic characteristics of children and youth with ASD and provide ASD estimates to help support policy, program and service development.
According to the release, information gathered and shared with the Public Health Agency of Canada won’t include personal information that could identify individuals.