Parents of children with autism say Yellowknife and the Northwest Territories, in general, don’t have much to offer their children in terms of support.
“It’s mostly health and social services, ECE and the departments within the GNWT that would direct services and supports,” said Denise McKee, executive director of the NWT Disabilities Council and president of the Autism Society for the NWT. But even then, there’s nothing identified as autism-specific, she said.
Often autism gets lumped in with fetal alcohol spectrum disorder (FASD) because they share outward symptoms, despite being very different diagnoses.
“And although these services exist and there are navigators to tell the parents to go to these places, the services are extremely overburdened,” said McKee, adding many people face long wait times. “There’s not the maximum benefit that can be given because there’s far higher demand than there are available services.”
Through the Stanton Child Development Team, children identified as having autism are linked to services primarily in Yellowknife, including occupational therapy, physical therapy and speech therapy. But parents first need an autism diagnosis, which is something they can’t get in Yellowknife.
The nearest autism clinic is in Edmonton, 1,500 km away.
The lack of support in Yellowknife and the North is something the NWT Disabilities Council has brought attention to on more than one occasion, said McKee. As a parent of a 20-year-old son on the severe end of the autism spectrum, she has been dealing with these issues herself.
“In the early years, advancements have been made in terms of early intervention and getting children connected,” she said, which the NWT Disabilities Council delivers. “So that’s from birth to age six and it gives one-to-one specialized support to work on developing those skills, many of which fall in some developmental delays, from social, behavioural, straight on through to motor skills, fine motor skills, those kinds of things.”
Once children are school-aged they enter a different forum, where services are directed through their school, and a higher degree of services are available, said McKee.
However, when these children leave high school, many of them fall off the edge. Some become isolated and have limited employment or underemployment, especially when combined with any sort of mental health issue or intellectual disability, according to McKee.
“The transitional stages are not well met,” she said.
When these children become adults, the supports available for them decline even further.
“There’s nothing specific to them,” said McKee.
Adults with autism often struggle to find employment. Those who are employable may only need limited support.
“The problem is when there’s (multiple health conditions) or any kind of intellectual issue, oftentimes there aren’t supports,” said McKee, adding that at a younger age those with autism may be redirected to southern placements. “This is a real critical issue.”
Both the NWT Disabilities Council and the NWT Autism Society work together to fill a gap left by the lack of support, and help parents advocate for themselves and their children.
The society has developed resources like a wandering toolkit, which has been adapted in Nova Scotia and promoted through Autism Canada, said McKee.
“So it’s really only in the North that there’s a failure to recognize the impact of autism,” she said.
Why is the North so far behind?
In the North, disabilities are treated as an anecdotal sidebar to other issues, said McKee.
“Whereas, in general, people with disabilities, in general, are the highest risk of any group,” she said. “Whether it be women, whether it be impoverished, whether it be families, disability heightens the person’s risk factors and puts them at greater risk within whatever group. They should have a distinct group and they should have a distinction of being recognized for their own needs as opposed to being sub-groups of other issues that come forward.”
One cannot, and should not, just look at the statistical number of people with autism in the territory, but rather in terms of the impact they have on the system, McKee said.
“Sometimes the need for some of these children and some of these youth and adults are so high, that they have the same impact on the system as multiple numbers of other people,” she said.
It’s not uncommon for families to be thrown into economic turmoil due to a lack of support resulting in one of the parents having to stay at home and fill the gap, McKee explained.
“Oftentimes that becomes the woman because the female is expected to be that caregiver,” she said.