For years, families with loved ones who have autism have been pleading with the federal government to issue a national autism strategy, a frame work for how provinces and territories should deliver autism services.
That process is now one step closer to the finish line.
The Canadian Academy of Health Sciences (CAHS) released its assessment of the autism report on Tuesday, outlining structural and systemic gaps facing people with autism and their families.
The organization was selected by the Public Health Agency of Canada to help inform policymakers in the development of a national autism strategy.
“It includes a lot of practical ideas about short and longer-term approaches to actually address these issues in substantive way” said Lonnie Zwaigenbaum, chair of the oversight panel that produced the report. He added that the report “highlights the importance of collaboration across sectors and within the community to move things forward.”
The 412-page report points to key findings that highlight much-needed supports for people with autism and their families. It focuses on five themes:
Diversity: The importance for autism supports to meet the extra needs that may come with some differences including, language, learning and housing needs.
Social inclusion: Generate ways for people to feel safe and accepted within the community including transportation, workplaces and job training.
Diagnosis and supports: Train more health professionals to diagnose autism, develop tools specific to a person’s needs, transparency on diagnosis wait times, more online supports.
Economic Inclusion: Government financing, financial support for families, easier access to government support, help for employers to hire and keep workers with autism.
Research: More research will help improve support, include diverse groups during research, and follow participants throughout their lives.
The report is the result of 19 months of work by an expert panel. CAHS calls the process unique, involving existing literature, emerging practice and unprecedented consultations with more than 6,000 people.
“It’s a window in terms of the breath of opportunities, as well as challenges that are experienced by autistic people and their families and a guide in terms of the way forward to enable positive change” said Zwaigenbaum.
The assessment comes months after its expected release in January 2022, and years after the Trudeau government committed to a national autism strategy in 2019.
Without a national strategy, some autism researchers believe Canada is failing this section of the population.
“We have so many gaps right now in how our services are delivered across the country, we have so much inequity in how autistic Canadians are accessing critical supports they need to live their best lives,” says Deepa Singal, the director of scientific and data initiatives at the Canadian Autism Spectrum Disorder Alliance (CASDA).
Singal told CTV National News that “a child born in one province can have a completely different outcome and future depending on the services they were able to access, compared to a child born in a province that didn’t have those sorts of supports or were harder to access.”
This report, while not a full strategy, was highly anticipated for people within the autism community, giving them reassurance the government is committed to moving forward and that a strategy will soon follow.
Many Canadians say the federal government’s long-promised national autism strategy isn’t coming fast enough, with affordable and accessible support varying drastically between provinces and even communities.
Some families who have spoken with CTV News have moved to the United States for better care. Groups including Autism Nova Scotia say they have seen families move across the country in search for better services.
Autism Nova Scotia’s Executive Director Cynthia Carroll says the new report synthesizes the information that has been reported by people across the country. However, she says she would have liked to have seen “more direct and concrete next steps.”
The report points to key findings, but doesn’t offer any “recommendations” for a national strategy. Zwaigenbaum says their directive was to establish an assessment infused with lived experience.
“Ultimately recommendations should be informed by the assessment as well as the key community partners but it wasn’t the role of the academy to make specific recommendations. I think people will find if they read the report it’s quite clear what the next steps need to be,” he said.
Carroll believes the federal government and policy makers would have benefited from more specific recommendations.
“It may not have been their mandate to make recommendations, but if they’re not going to make recommendations after the extensive consolations and the fact they are some of the most esteemed researchers in Canada, who is going to make those recommendations?” she said.
PHAC says the report from CAHS will be considered “along with all other information gathered through a variety of mechanisms.”
When asked for a timeline on when Canadians will see a national strategy implemented, the government would not commit to a date, only pointing to a national conference in November “to build consensus on the priorities for action under a national autism strategy.”
“Addressing the complex and diverse needs of Canadians on the autism spectrum requires a coordinated effort with all levels of government and service providers,” PHAC said in a statement to CTV News. “We are working collaboratively with provinces, territories, families, Indigenous organizations and other stakeholders to accelerate the development of a national autism strategy.”