World Autism Awareness Day in Ottawa: celebrating Canadian leadership in autism research

April 2, 2014

World Autism Awareness Day (WAAD) in Canada is being acknowledged starting at noon today in Ottawa with an event on the Hill celebrating research advances.

NeuroDevNet and 13 other stakeholder organizations have gathered, to raise awareness with the help of parliamentarians including the Hon. Minister of State for Social Development Candice Bergen, MP Mike Lake (C) Edmonton-Mill Woods-Beaumont, Senator Jim Munson, and MP Glenn Thibeault, (NDP) Sudbury on the steps of the Capitol.

“Canada’s leading role in early diagnosis and cross-lifespan intervention will be highlighted on World Autism Awareness Day on Parliament Hill,” said Tom Collins, president of the Sinneave Family Foundation, whose Calgary-based Ability Hub offers a range of evidence-informed programs, focusing on transition planning as well as life and work skills. "World Autism Awareness Day is moving public knowledge and government policy forward around the globe.”

“This is an unusual opportunity to connect with lawmakers and organizations that are committed to making a difference for individuals with autism and their families,” added NeuroDevNet’s Scientific Director, Dr. Dan Goldowitz. “We can share how each of us are trying to be a positive force for change and create synergies through our joint efforts. NeuroDevNet has much to share about its research into early diagnosis and the early application of therapeutics to help children on the spectrum, and it is important that we get affirmation from this community that we are on the right path.”

The Network is charting that path in the midst of what is has been described by UBC Professor Pat Mirenda as a public health emergency. In the week leading up to WAAD, the US CDC released 2010 prevalence figures representing a 30 percent increase in the rate of ASD in the United States. Announcing the now much-publicized 1:68 estimate, the CDC’s Colleen Boyle urged more research to “better understand the why” behind the statistics. “There’s also an urgent need to put these findings to work for children and families,” she added.

Dr. Mirenda is part of a national study tracking the development of 400 children with autism and their families across five provinces since 2004, starting at the time of diagnosis. The research seeks to document indicators that show why some of the participants do really well, and why others progress more slowly. “The research isn’t complete,” said Dr. Mirenda, “but some of what we do know is that most parents spot autistic behaviour in their children around 18 months but are often not given a diagnosis until the child is three or four, and parents remain stressed about the disorder even if their child improves.

“South of the border,” added Dr. Mirenda, “there’s a huge commitment at the federal level for autism research and intervention.” In Canada, a national surveillance program is being launched by the Public Health Agency of Canada (PHAC) to help grapple with scope and nature of the challenges posed by autism in this country.

Provinces and territories are developing regional plans for participation in the program, which will track the number and characteristics of people who develop ASD on an ongoing basis, as well as document risk and protective factors, and available treatments and services.

“There’s ongoing consensus that ASD affects people throughout their lives, so supports and services are needed across the lifespan,” said Dr. Lonnie Zwaigenbaum, a clinician researcher based at the University of Alberta who sits on the steering committee for the PHAC initiative. As early as 2006, news reports began documenting relocation trends in Canada led by availability and funding of early intervention services. “There is considerable variability in service models across the country and access and availability also vary,” acknowledged Dr. Zwaigenbaum. “Although progress has been made particularly on early intervention, there is still much that needs to be done to ensure timely access to effective, evidence-based interventions across the life span and across the country.”

In addition to placing renewed emphasis on promising early interventions for ASD, NeuroDevNet continues to invest in research that will lead to widely available, accessible diagnosis for autism and other neurodevelopmental disorders. Significant steps forward have been made during the life of the project to date. Dr. Stephen Scherer, based at SickKids and the McLaughlin Centre in Toronto, has championed affordable genetic testing, first through microarray diagnostics, as well as the “next step – exome sequencing – which means sequencing all the genes in one experiment,” said Dr. Scherer. “This is being set up as we speak in the SickKids Hospital Diagnostic Lab. We anticipate in the near future the provincial ministry in Ontario will cover this cost in the same way it does for microarrays, but that is still to be seen. Once this rolls out in Ontario the other provinces would likely follow, as happened with microarray testing.”

“Canada is leading the world through collaborative stakeholder coalitions that help the research community stay focused on helping individuals living with autism today,” said Dr. Margaret Clarke, the Sinneave Family Foundation’s senior vice president of policy and programs.

The contributions of the Federal Government are part of that global leadership, said Tom Collins. “They are leading the way in demonstrating that individuals with disabilities can be full participants in Canadian society,” he said. “As a significant employer of individuals with disabilities in its own right, the Government has also provided about $250 million per year to support job skills development for people with disabilities. For the hundreds of thousands of Canadian families, these Federal Government programs are a beacon of hope.”