Tuesday, April 2, is autism spectrum disorder awareness day in Yellowknife.
Acting mayor Adrian Bell made that offical on Monday; his ‘proclamation’ reflecting a growing public awareness of the disease.
The Yellowknife Association for Community Living has been holding its annual Light it up Blue campaign on April 2 – which is world autism awareness day – for three years now. YKACL executive director Lynn Elkin said the day is a great way to show support for those living with ASD.
“We have many people across all of our programs that live with ASD and I think having world autism day is a great way to reflect and show support for (them),” Elkin said. “People with ASD are involved in all areas of life. The disease is not a bad thing or a good thing, it’s just something (people) live with and we need to support them.”
Bell said making Tuesday ASD awareness day was a proactive step by the city to “further the discussion.”
“Increasing awareness and showing support for people’s health and disabilities is important to keep top of mind,” he said. “I believe Yellowknifers are very accommodating and caring people.”
The idea for a city-sanctioned ASD day was brought to councillors by Autism Society NWT president Denise McKee in March.
McKee said she was pleased the city had officially recognized the day to show support for those living with ASD, but she also wanted people to use it as an opportunity to talk about personal experiences and public services.
“Every person’s needs when living with autism are unique,” said McKee. “As people age there are less and less services available for the people who need them.”
The Public Health Agency of Canada released the National Autism Spectrum Disorder Surveillance System report on Thursday – the first comprehensive review of the prevalence of ASD in the country.
According to the agency, one in 66 children and youth (aged 5 to 17 years) are living with autism in Canada. The disease is five times more common in boys than in girls.
While those numbers give an indication of how common autism is in Canada, the Department of Health and Social Services said there is no way to accurately account for the amount of people living with autism in the NWT specifically.
“The Congenital Anomalies Registry includes data only from diagnoses after Jan. 2011 among those born in the NWT and who are under 19 years of age,” said DHSS spokesperson Umesh Sutendra.
“If the diagnosis was prior to 2011, or if a diagnosis occurs after age 18 years, or if the place of birth is not within the NWT, the case will not be captured in the registry.”
ASD affects families and friends as well, said NWT Health Minister Glen Abernethy, who believes important work is being done at the territorial level to make sure those living with and alongside ASD are supported.
“Through our ASD action plan we are ensuring those living with ASD and their families will have access to speech pathologists and occupational therapy, which is autism specific,” Abernethy said.
“We put $848,000 into the 2018-2019 budget to help develop our disabilities framework and create the action plan, which we are hoping to release before the next budget is released.”
Abernethy said he knows families who have left the NWT because autism services were inadequate. He hopes that will change.
DHSS is planning to hire coordinators to accommodate families impacted by the disorder. Abernethy said one will be rolled out next year, followed by a second coordinator in 2021-2022.
“It’s a lot of work and it’s important work,” said Abernethy. “Having the legislation in place will help us move forward to providing better care for people with ASD.”
McKee said there are already a lot of speech pathologists and occupational therapists in the NWT. She said parents want a different approach.
“Parents are worried about getting specific treatment that covers the entire spectrum of autism,” said McKee.
“Currently there are great services for children between birth and six-years-old … left out are the youth, adults, and aging population who have ASD.”