Since the last federal budget was released three years ago, no additional funding has been allocated for autism support in the NWT, said Denise McKee, executive director of the NWT Disabilities Council.

“We are one of the only territories or provinces without a supported autism initiative,” said McKee. “We need to start putting the oversight dollars into services that directly support families and listen to families as to what they need.”

The first time autism was ever identified in a federal budget was in 2018-‘19 and it was paired with fetal alcohol spectrum disorder (FASD).

From the $848,000 that was allocated to autism and FASD in the territory, a position was created for an occupational therapist that specializes in autism, “which has sat vacant,” McKee said of the role. “The Autism Society NWT reached out to indicate families need direct support and to see how much of that money was designated for autism and was never answered.”

McKee is campaigning for more autism-specific support, including diagnostic services, early intervention and employment support.

“Disabilities as a whole is underfunded in NWT,” she said. “There’s millions being spent sending people down south for treatment rather then in their community, where, by their own human rights, (they) should be able to receive treatment.”

Policymakers say they do not have the resources to provide support within the territory, said McKee, “and we really challenge that speculation.”

McKee is also president of the Autism Society NWT, which is run by volunteers and has no funding.

“There’s a long wait-list for families that need support and many are told to go down south for supports,” she said. “This puts them dire and critical situations.”

She understands this issue well — her 24-year-old son, Conlan, has non-verbal autism and his need for support far outweighs what the government can provide him, she said.

“As a family we struggle to get supports and opportunities for him despite the fact that we have a better understanding of the system and navigation simply because there are so few resources and services and almost all are for children,” she said.

Conlan was born in Ontario and was diagnosed at 2.5 years. He received early child intervention until age five, and was supported by an education assistant and the autism team until the family moved to the NWT when he was 11.

For a short period, the family lived in the small hamlet of Aklavik. Although the community was supportive, the resources were almost “non-existent,” according to McKee. “He had an amazing classroom assistant (CA) that worked closely with the family but he was not 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.

“He did have CAs that worked closely with the family and we were able to develop school programming which helped,” McKee said. “However, his communication and need were never met to allow him to progress due to limited resources and supports by the time he entered secondary school.”

When Conlan left high sch0ol, he was able to work for a period with support, but that ended when the pandemic hit.

Conlan’s siblings moved away to attend university, and the family was again left scrambling for support.

“We had to fight for every opportunity and any support he received. This has affected every aspect of our life, from career choices to where we can live,” said McKee.

As soon as he turned 18, like thousands of Canadians with health concerns, he fell through the gaps in care.

“It was as if he no longer mattered,” McKee said.

Support workers talked about sending him south.

“That seems to be the go-to when any complex needs are presented,” said McKee, who considers her family fortunate enough to try to manage his challenges at home.

She’s concerned for other families in her situation who are given no other option but to send their loved ones away.

“This is not how we should be supporting people and families in Canada and the Northwest Territories,” she said. “All people should be supported in their community among family and people that care.”

McKee is calling for more funding and a long-term, sustainable home-based solution.

“The answer is to work with families for planning throughout that will meet the needs of the individual across the lifespan,” she said.

What is Autism?

According to the Autism Society NWT, “Autism is a lifelong neuro-developmental disorder that affects the way people interact and communicate with those around them. Each child and adult with an ASD (autism spectrum disorder) is unique and has their own strengths, gifts and support needs. First identified in 1943 by Leo Kanner, Autism Spectrum Disorder is one of the pervasive developmental disorders of childhood onset.

“The symptoms of autism may be present from birth, but they may not be noticed until a child is two or three, when language normally develops. ASD is characterized by difficulties in communication and impairments in social interactions, a unique and restricted range of interests and activities. These neurological characteristics are common to all ASDs, but symptoms can vary widely among individuals.”

According to Canada.ca, around 1 in 66 children and youth is diagnosed with ASD in Canada, and “an ASD diagnosis can involve significant emotional and financial challenges.”

Autism Awareness Day is marked on April 2.

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