Learning to better understand autism spectrum disorder
The understanding of autism spectrum disorder (ASD) is coming into the light. The science is advancing and with increased understanding, there is hope that earlier identification, intervention and evidence-based services will follow.
The promising research not only comes as encouraging news – it isalso a testament of the dedication of Autism Speaks Canada (ASC), an affiliate organization of Autism Speaks (AS), the world’s largest autism science and advocacy organization. ASC and AS have committed $9.3-million to Canadian research. Through the ASC Family Services Community Grants program, ASC has also contributed $2.5-million toorganizations providing services to those impacted by ASD across the country.
Improving the autism landscape remains a daunting task. The prevalence of ASD has increased 100 per cent in the last decade and one in 68 children is diagnosed with the disorder.
Canada’s autism advocates recognize that much work needs to be done, but they believe they are on the brink of even more dramatic strides. “I think our path forward is clearer than ever. For example, we know that early intervention can make a significant difference in people’s lives,” says Marc Murnaghan, chair of ASC’s board of directors.
“We know it’s important to get information on the early signs of ASD into the hands of parents and physicians to support earlier identification, within the first year, while continuing to fund services throughout [the entire] life,” Murnaghan adds. “What’s also vital is continued research into understanding the role of genetics in autism.”
The organization supports research by Dr. Stephen Scherer, director of the Centre for Applied Genomics at the Hospital for Sick Children and director of the McLaughlin Centre for Molecular Medicine, University of Toronto. Dr. Scherer’s work involves the sequencing of whole genomes of individuals and families affected by ASD.
“Ten years ago, autism was a black box. The most important progress has been awareness of what ASD is. A large part of the awareness came from research. Our group and others have shown that autism, a behavioural disorder, can have a biological basis – that genes can be involved,” he says. “This is ground-breaking, since we can use the genetic information to facilitate more accurate clinical diagnosis and sometimes for early identification, which is critical for optimal outcomes.”
Dr. Scherer is now leading the international MSSNG project – a collaboration between Google and Autism Speaks – aiming to create and share through open science the world’s largest genomic database on autism. In its biggest fundraising campaign to date, Autism Speaks seeks to raise $25-million for the project worldwide, including $10-million in Canada.
“This is the biggest whole genome sequencing project in the world and the only one I know of that is making the data available via an open-source format,” he says. “This is the most amazing project, since we are bringing together families, doctors, geneticists and information scientists to further illuminate the role of genetic factors involved in autism.”
“As we continue to learn about ASD, Autism Speaks Canada recognizes the importance of collaboration,” explains ASC executive director Jill Farber.
“Along with our partners, we help to disseminate information about what we know to the community, including families, service providers, health-care professionals, educators and the general public,” says Farber.
The organization and its partners, including the Canadian Autism Spectrum Disorders Alliance (CASDA), work collaboratively to identify and address the needs of the ASD community across the country.
“As important as early detection is, we also have to remember that individuals with autism grow up,” Farber says. “We have to address needs along the lifespan and across the spectrum. Our goal is to improve the lives of those impacted by autism today through building capacity and enhanced services while transforming lives tomorrow by funding important research like the MSSNG project.”
MSSNG is Autism Speaks’ biggest fundraising campaign to date, with a goal of $25-million in total and $10-million from Canada
Autism Speaks and Autism Speaks Canada
Autism Speaks (AS), along with Autism Speaks Canada (ASC), is the world’s leading autism science and advocacy organization and has invested over $200-million into scientific research.
Autism Speaks Canada is committed to raising the funds necessary to improve lives today and transform lives tomorrow across the autism spectrum and along the lifespan.
AS and ASC have committed $9.3-million to Canadian research. Since 2010, when the ASC Family Services Community Grants program began, ASC has contributed $2.5-million to organizations across Canada to increase their capacity to support individuals and families impacted by autism spectrum disorder.ASC is committed to building the capacity for research and services across the country, to raising public awareness about autism and to building a larger autism leadership community through advocacy efforts.
View full report online at globeandmail.com.