Autism is a condition that affects many people. There are several types of autism, including Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder, Kanner syndrome and pervasive developmental disorder.
While you may not have heard about most of those types, you may have heard the term neurodivergent. According to the Cleveland Clinic, it describes people whose brain differences affect how their brain works.
And that’s what the NWT Autism Society is expanding its scope toward.
The society has adopted a new name and will now be known as the Neurodiverse North Alliance. It will be launching a new website that day and it will host its first annual general meeting virtually at 12:30 p.m.
Denise McKee, chair of the current autism society board of directors, said the board decided to make the name change to extend its outreach.
“It’s about incorporating the larger spectrum and a new way to approach neurodivergence,” she said.
She also said like most disabilities, autism has been underfunded for years; the first time autism was even mentioned in a territorial budget was during the 2018-19 fiscal year, she said.
“(Former Health and Social Services minister) Glen Abernethy proposed $848,000 for autism and FASD (fetal alcohol spectrum disorder),” she said. “Almost all of it went to FASD and there was nothing specific for autism. We did have two positions identified — an occupational therapist and a speech specialist — but it was on and off for both of those.”
McKee did note that the federal government has been working on a plan to deal with autism directly and that’s been in the works for several years.
Another took that is available is what’s known as a wandering kit, which includes tips for first responders when someone with autism goes missing, and a checklist for what to do if a loved one with autism is missing.
“Those with autism may wander off and they may not respond to people,” said McKee. “There was a recent case in Saskatchewan where a non-verbal person ended up being arrested by police and so that’s the right move in our opinion.”
While there are services available to parents of young children diagnosed with autism, it tends to drop off once they reach adulthood, she added.
“A lot of those people end up not being engaged in their community and they may be under-employed or not employed at all,” she said. “When it comes to younger people, there’s the effect of not being able to get into school. There are examples of parents being called to come and pick up their child because of their behaviour. They’re told there’s no support available at the time.”
When that happens, McKee said people begin to give up and lose hope.
“What happens is a parent has to become a caregiver, so you start to begin dealing with economic issues,” she said. “It affects women more than men because of the social structure we have. There’s the loss of income and now you have a family that is thrust into poverty. That creates mental health stress and it just compounds the problem.
“It’s especially harder here in the NWT because of the geography,” she continued. “There’s the isolation and you don’t get the same level of services, so people are left with nothing.”
McKee spoke about the experiences of her own family when they lived in Aklavik for three years. Her son, Conlan McKee, was diagnosed with autism at the age of two and the family moved to the NWT from Ontario when he was 11.
“We lived there for three years and the community was very supportive, but the resources were almost non-existent,” she said. “He had an amazing classroom assistant that worked closely with the family but he wasn’t able to progress without the supports.”
Without the consistency in care, Conlan’s progress stalled, so the family moved to Yellowknife believing they could access more support.
As soon as he turned 18, like thousands of Canadians with health concerns, he fell through the gaps in care. Support workers talked about sending him south.
McKee said that wasn’t even an option.
“Parents are told that there are better services down there, but we didn’t want to do that,” she said.
The NWT Disabilities Council, where McKee works as its executive director, provides as much support as it can, she said, with its summer camp, respite programs, learning supports and connecting families with programs that are there to help.
McKee said one big thing people can do to help families of autistic people is be accepting.
“Don’t grab your child’s hand and pull them away because that frightens them and makes them think that something is really wrong with them,” she said. “Tell your children that they’re just different. We’re all different and that’s alright.”