AIDE is coming for Canadians living with autism spectrum disorder

British Columbia will soon be home to the headquarters of a new national autism support network meant to address significant gaps in our knowledge surrounding autism spectrum disorder.

As outlined in the federal 2018 budget, $20 million will be provided over five years to new initiatives aimed at helping families affected by autism spectrum disorder. 

More than half — $10.9 million — of the funding will go toward the creation of the Autism-Intellectual-Developmental Disabilities National Resource and Exchange Network (AIDE). 

AIDE will be led by the Pacific Autism Family Network (PAFN), which operates out of Richmond, B.C., and the Miriam Foundation, out of Montréal.

"What we're hoping is that [AIDE] will help families access information. It will connect them across the country," said Sergio Cocchia, co-founder of PAFN,

Cocchia said it can be incredibly challenging for Canadian families when a child is diagnosed with autism spectrum disorder.

A huge challenge

"It is daunting. It's not something anybody prepares for, it's not something you're aware of until it's diagnosed. It's a huge challenge."

Cocchia said the federal funding is huge boon for families who are affected by autism spectrum disorder. According to Autism Speaks Canada, the disorder is the fastest growing and most commonly diagnosed neurological disorder in the country.

Because autism is a spectrum disorder, it presents differently in different people, which can make it difficult to nail down accurate information. An estimated one in 68 children in Canada are affected.

For Cocchia and other autism advocates, one of the biggest concerns is the lack of easily accessible and accurate information surrounding the disorder. One of the goals of AIDE is to create a centralized information network that will address that concern.

Cocchia said there is already a lot of information about autism spectrum disorder on the internet, and while some of it is useful, much of the information is debatable. 

"Unfortunately, [the existing information] is not all science-based, it's not all accurate," said Cocchia, who pointed to a recent study that showed the lack of accessible information is the top concern for 74 per cent of families that include a person with autism.

'Horror stories'

"You go online and start researching it and all you're reading are horror stories ... Stories that families should not be reading about autism because they're not accurate," he said.

Cocchia said accessing government resources for a child's assessment and treatment is incredibly difficult, and often families turn to exorbitantly expensive privatized options. He said since families typically will do anything to help their child, under the current system, they are often left open to financial exploitation by "charlatans."

Another problem, said Cocchia, is that when AIDE succeeds in creating a comprehensive and reliable database, there still won't be enough services in Canada available to people living with autism spectrum disorder. He said while the federal funding is a big help, it won't solve that problem.

The 2018 budget also said $9.1 million will be provided to the Public Health Agency of Canada to help reduce stigma around autism spectrum disorder and create new innovative programs that support those living with it.

With files from The Early Edition