AIDE is coming for Canadians living with autism spectrum disorder

British Columbia will soon be home to theheadquarters of anew national autism support network meant toaddresssignificant gaps in our knowledge surrounding autism spectrum disorder.

As outlined inthe federal2018 budget, $20 million will be provided over five years tonew initiatives aimed athelping families affectedby autism spectrum disorder.

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

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

"What we're hoping is that [AIDE]will help families access information. It will connect them across the country," saidSergioCocchia, co-founder ofPAFN,

Cocchiasaid it can be incrediblychallenging forCanadian familieswhen a child isdiagnosed withautism 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."

Cocchiasaid the federal funding is huge boon for families who are affected byautism spectrum disorder. According toAutism 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 downaccurate information. An estimated one in 68 children in Canada are affected.

For Cocchiaand other autism advocates, one of the biggest concernsis thelack 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.

Cocchiasaid there is already a lot of information aboutautism spectrum disorder on the internet, and while some of it is useful, much of the information is debatable.

"Unfortunately, [the existing information] isnot all science-based, it's not all accurate," saidCocchia, who pointed to a recent study that showed thelack of accessible information is the top concern for74 per cent of families thatinclude 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, andoften families turnto exorbitantlyexpensive 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 acomprehensive and reliable database,there still won't be enough services in Canadaavailable topeople living with autism spectrum disorder. He said while the federal funding is a big help, it won't solve thatproblem.

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