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REBUTTAL: Autism community needs united front in pushing for reforms

I work directly with individuals and families touched by autism and I know all too well of their roadblocks and challenges. I felt empathy and compassion reading about Mr. Kavchak’s journey as a parent and caregiver to a child diagnosed with autism. However, I feel equally compelled to address some of the misinformation in his opinion piece to ensure Canadians are being appropriately informed about the CAP project’s mandate and structure. 
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Cynthia-Carroll
Cynthia Carroll: 'Future generations, the child sitting in a doctor’s office receiving a diagnosis today, need a unified community fighting together as one.'

By CYNTHIA CARROLL

As chair of the Canadian Autism Spectrum Disorder Alliance (CASDA), which led the Canadian Autism Partnership Project (CAPP), and as the executive director of Autism Nova Scotia — a role that allows me the opportunity to work directly with autistic individuals, their families and caregivers — I wish to provide clarity to some of the statements in Andrew Kavchak’s recent opinion piece in Local Xpress. 

Over the past year, led by a working group of experts representing the diverse sectors of the autism field and by an advisory committee comprised of seven autistic self-advocates from across the country, the CAPP team reached out to more than 5,000 Canadians to collect their input on the development of a business plan to support a Canadian Autism Partnership model.

We heard from autistic individuals, families and caregivers, researchers, service organizations, health practitioners, government representatives and policy-makers. Their voices were united and their message was painfully clear: Collectively, as a country, we are failing Canadians with autism, as well as their families, friends and communities. 

The inequities and failure to systematically address the complex needs pertaining to autism across the lifespan come at an enormous cost to all levels of government, service providers and, most importantly, individuals and families. These issues are not exclusive to autism treatment; they include education, housing, community safety, access to primary health and dental care, employment and issues around aging. The list is long and the gaps are enormous.

It’s been 10 years since the Canadian Senate report “Pay Now or Pay Later — Autism Families in Crisis” was released by senators Jim Munson and Art Eggleton. Mr. Kavchak is correct when he states that since the release of this report, we’ve continued to see a significant increase in the number of Canadians being diagnosed with Autism Spectrum Disorder (ASD) — yet, across the country, in our provinces and territories, the services, supports and resources have not kept up with the increasing need. 

Mr. Kavchak states emphatically that “what we need instead from the federal government is real leadership on autism — and we need it now.” We couldn’t agree more. Our community does need leadership if we are to sustain our hope and deliver on addressing the needs of Canadians with autism. 

Far from being “another bureaucracy,” a Canadian Autism Partnership model was created as a solution to the challenges being faced across the country. Mr. Kavchak suggests that the federal Department of Health, Public Health Agency and their provincial counterparts be tasked with conducting consultations, collaboration, problem-identification and political decision-making. The reality is they currently are tasked with that, yet we have not seen the movement we so desperately need. 

He claims that the plan for CAPP “does not mention specific gaps in policy or issues that need to be addressed on a priority basis, and it does not give concrete examples of how such issues could be resolved with the new model or when.”

This couldn’t be further from the truth — in fact, the business plan not only outlines the complex lifespan issues related to autism, it prioritizes five key complex issues, identifies the best starting points for action and details a collective impact model to address them. An overview of this collective impact model and the priorities it seeks to address are easily accessible on our website.

I work directly with individuals and families touched by autism and I know all too well of their roadblocks and challenges. I felt empathy and compassion reading about Mr. Kavchak’s journey as a parent and caregiver to a child diagnosed with autism. However, I feel equally compelled to address some of the misinformation to ensure Canadians are being appropriately informed about the project’s mandate and structure. 

For far too long, our community has been disjointed — a result of the isolation, fear, anger and hopelessness that often fills the void left in the absence of necessary life-changing supports and resources. Mr. Kavchak’s cynicism is understandable; the current system has let down not only his son, but thousands of Canadians on the autism spectrum. We share his disappointment, and we stand in solidarity to support his call for action. 

In return, we ask for the opportunity to share with him the merits of a Canadian Autism Partnership; the Canadians who provided input into this project deserve that respect. More importantly, the future generations, the child sitting in a doctor’s office receiving a diagnosis today, need a unified community fighting together as one.

Jessica Pigeau, an autistic member of our self-advocate advisory committee, framed the need for this partnership more passionately and eloquently than I could ever attempt to: “It is taking all of our hopes, all of our wishes, all of our pain .... all of our efforts and all of our skills — and we are putting it towards a single purpose, we are moving as one.” 

Cynthia Carroll is chair, Canadian Autism Spectrum Disorder Alliance, and executive director of Autism Nova Scotia. She lives in Halifax Regional Municipality.



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