Statements & Speeches

Speech on Bill S-211, An act respecting World Autism Awareness Day

April 20, 2010

Honourable senators, it is my pleasure to rise today to speak to Bill S-211, an act respecting World Autism Awareness Day.

I know that the sponsor of this bill, Senator Munson, is a tireless advocate for those affected by autism, and I commend him for his efforts and commitment to this important issue that we are only beginning to understand.

Bill S-211 was introduced in the last session of Parliament where it received the support of senators and was sent over to the other place, adopted at second reading and sent to a committee of the other place.

This government recognizes that autism spectrum disorder is a serious health and social issue affecting many Canadian families and individuals from all walks of life. That is why the Minister of Health, the Honourable Leona Aglukkaq, last year declared April 2 as World Autism Awareness Day across Canada.

Speaking on that occasion, the minister said:

The Government of Canada is pleased to recognize World Autism Awareness Day and to pay tribute to the many individuals and families in Canada who struggle with the disorder every day. We join many nations around the globe in marking this day and using it to raise important health and social issues related to autism.

Indeed, honourable senators, the sooner we can find effective ways to treat and mitigate the symptoms of autism, the better.

A 2007 study published in Archives of Pediatrics & Adolescent Medicine estimates that the total social cost of autism in the United States is $35 billion, and that the lifetime per capita incremental societal cost of autism is $3.2 million. However, honourable senators, numbers never tell the whole story. Studies show that autism puts greater strain on marriages and families. Caring for an autistic child requires a great expenditure of time, which always leads to less time for other family members and adds another layer of pressures to daily living activities.

For parents and families, ASD presents a life-long challenge of caring for their loved ones and ensuring they are accessing the most effective treatment.

For researchers, ASD is an especially complex topic, as it affects individuals differently and has far-reaching implications. A great deal of valuable research has been completed to date to uncover the origins of ASD, as well as the most effective treatments and the long-term implications of this disorder. However, more research needs to be undertaken to gain a more solid understanding of this complicated condition.

I want to share with honourable senators today some recent activities in the area of autism research. The Canadian Autism Intervention Research Network, CAIRN, is a group of researchers, clinicians, parents and policy-makers dedicated to ASD research as a way to find better treatments and diagnostic techniques.

While many treatment and diagnostic methods have proved to be effective, some still do not have a sound evidence base. As such, some children with ASD may not receive the most effective treatments for their condition because much about ASD remains unknown. This situation points to the need to have the most up-to-date research available, and institutions such as CAIRN are contributing to this research.

The government supports the important work of CAIRN, as well as other research initiatives and institutions. In 2007, the government provided funding to CAIRN to translate its website into French. The CAIRN website is among the best-known sources of up-to-date, evidence-based information on ASD. I am pleased to say that it is now available to Canadians in both official languages.

Furthermore, in 2008 the government committed $75,000 to the Offord Centre for Child Studies to support the 2009 CAIRN conference held in early October and to enable CAIRN to revise its website to make up-to-date information available to all Canadians.

The 2009 CAIRN conference provided an important forum for parents of children with ASD, individuals with ASD, researchers, clinicians and policy-makers to come together to share new research, different points of view, challenges and stories, but all with a view to raise awareness about autism. It was also at this conference that the early exciting findings of the Pathways in ASD study were shared. The Pathways in ASD study is a one-of-a-kind collaborative research study that focuses on understanding how children with ASD grow and develop over time.

The Canadian Institutes of Health Research is one of the funders of this existing initiative, led by Dr. Susan Bryson, Eric Fombonne and Peter Szatmari of McMaster University. They are working to understand the different developmental pathways that children with ASD follow and to identify predictors of good outcomes that can be used to develop new intervention programs.

To date, approximately 440 children from five different locations across Canada have been enrolled in this study, making it the largest of its kind in the world. The study will examine a number of factors, including social competence, communication skills, behaviour and ability to function independently that influence areas of development related to the child, the family and the community as a whole. The results of this study will be a valuable resource in ensuring the best outcomes for children with ASD, both through the development of new programs and interventions, as well as by furthering our understanding of their needs and strengths. I understand that this project has been designed to fill important evidence gaps on the developmental pathways of children with ASD. Pathways in ASD will also provide important evidence-based information for policy-makers and researchers alike.

Substantial resources have been devoted to ASD research. Since 2000, the Canadian government has invested approximately $35.3 million in autism-related research projects through Canadian Institutes of Health Research.

CIHR is supporting a strategic training initiative in health research, led by Dr. Eric Fombonne from McGill University, which will contribute to training the upcoming generation of autism researchers and will aim to uncover the mysteries of autism. Building on the autism research training program that trained over 40 PhD and post-doctoral students conducting autism research in various disciplines, from molecular genetics to outcome-intervention studies, this latest project will expand the program. The program will address the pressing needs of Canadians affected by autism, as well as their families and service providers, by building research capacity in this area.

CIHR is also funding the autism research of Dr. Susan Bryson and Dr. Lonnie Zwaigenbaum and their team at the University of Alberta, who are examining early development of autism by following infants at increased risk of the disorder because they are siblings of children with autism. The ultimate goal of their research is earlier identification and treatment. Research such as this is building our understanding of autism and our capacity to treat it.

Furthermore, along with Genome Canada, CIHR provides support to the Autism Genome Project. This initiative will help to increase our understanding of the genetics of ASD, which could, in the long term, lead to earlier diagnoses.

While research is an important aspect of the work being done to better understand ASD, another pillar of knowledge is in the area of surveillance. As was announced in November 2006, the federal government, through the Public Health Agency of Canada, is developing options for ASD surveillance. Recognizing that autism surveillance is new globally and may be technically challenging, the Public Health Agency of Canada has been working with researchers to see what can be done in Canada.

Indeed, between November 2007 and May 2008, the Public Health Agency undertook a consultation process to examine options for the development of an ASD surveillance program for Canada. As well, in December 2008, the Government of Canada approved funding for Queen’s University to expand their existing ASD surveillance program. This activity now includes children in Manitoba, Southwestern Ontario, Prince Edward Island, and Newfoundland and Labrador.

It is important to remember that all stakeholders in ASD want the same thing — better treatments and early diagnosis for those affected by ASD, so that ultimately they can enjoy better outcomes. This government is pleased to be supporting this by working with partners and stakeholders to promote autism awareness by investing in activities that support a stronger evidence base.

The more we share, the more we gain, and by translating discoveries and knowledge into new, effective, evidence-based therapies, we can provide true hope for Canadians living with autism and their families.

I know that in declaring April 2 as World Autism Awareness Day, the minister has contributed to raising awareness of this condition across Canada.