Hi Folks,
Autism came up twice in the Senate yesterday. For those who are interested in the movement of some autism advocates to get either Health Canada or the Public Health Agency of Canada to create an autism "division" or "branch" or whatever, the government's official reply is: "no".
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Senate Hansard
Tuesday, March 3, 2009.
Delayed Answer to Oral Question
Hon. Gerald J. Comeau (Deputy Leader of the Government): Honourable senators, I have the honour to table a delayed response to an oral question raised by Senator Jim Munson on February 5, 2009, concerning health, autism.
Health
Autism
(Response to question raised by Hon. Jim Munson on February 5, 2009)
The federal government is undertaking a range of initiatives to help address Autism Spectrum Disorder (ASD); for example, it encourages high-quality scientific research while supporting the sharing of best practices and communication amongst partners, stakeholders, and the population at large. Activities in this regard will improve knowledge about autism so that future action by provincial and territorial governments, service providers, and families will be well informed.
For example, on October 20, 2007, the Government of Canada announced $1M, over five years, for a National Chair in Autism Research and Intervention at Simon Fraser University. This chair will support research regarding interventions for individuals with autism.
As well, Health Canada provided $50K in 2007/2008 to the Canadian Autism Intervention Research Network (CAIRN) web site to support the development of updated material and the translation of information into French. Canadians can now log onto the popular and respected site and access French or English summaries of autism research presented in terminology that is useful to families who need it. An additional $75K is being provided to CAIRN to enhance the content of this website, conduct a survey of research priorities and to host a conference to support research across this country.
Further, since 2000, the Canadian Institutes for Health Research (CIHR) has committed approximately $27.1M for autism-related research, and, in November 2007, a national symposium on autism research was held to share knowledge and to support dialogue on future research priorities. The report from this Symposium is now available on the CIHR web site.
In addition, the Public Health Agency of Canada has completed a consultation on ASD surveillance. The results will be incorporated into the Agency's planning process for new work on national surveillance of developmental disorders. This work will start in earnest in the spring, with the new fiscal year.
While screening and treatment services are a provincial/ territorial responsibility, the Government of Canada is committed to supporting the development of the autism evidence-base, and is confident that these activities will contribute to and enhance Canada's capacity to address this important issue.
In December 2008, the Minister approved a contribution of $147,863.00 to Queen's University to expand their existing ASD surveillance system to include children in Manitoba (Queen's currently collects data from Southwestern Ontario, Prince Edward Island, and Newfoundland and Labrador). This is another step that towards creating a national surveillance system for ASD, which is a key request from autism stakeholders.
There is no immediate plan to establish a division of autism within the Public Health Agency of Canada. The Minister wishes to assure her colleagues that the health portfolio acknowledged the importance of ASD, and as indicated by the above noted activities, is an issue that is being taken very seriously by this Government.
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World Autism Awareness Day Bill
Second Reading
On the Order:
Resuming debate on the motion of the Honourable Senator Munson, seconded by the Honourable Senator Milne, for the second reading of Bill S-210, An Act respecting World Autism Awareness Day.
Hon. Wilbert J. Keon: Honourable senators, I am pleased to rise today in support of Bill S-210, which establishes World Autism Awareness Day in Canada, to be celebrated each year on April 2. We are fortunate in this chamber to have had an opportunity to learn a great deal about autism in recent years. In particular, I am referring to the study undertaken by the Standing Senate Committee on Social Affairs, Science and Technology, on which I was greatly honoured to serve as deputy chair, and the resulting report, Pay Now or Pay Later, Autism Families in Crisis. Autism has also been kept on the agenda through the nurturing efforts of Senator Munson.
I would be remiss if I did not point out that the Senate study on autism was the result of a motion by Senator Munson, in which he called the attention of the Senate to the issue of funding for the treatment of autism. I would like to thank Senator Munson not only for his work in this area but also on behalf of all Canadians with intellectual disabilities. These are people who offer much to the richness of our society but who lack a voice and far too often are without advocates in the community.
I also want to thank Senator Oliver who seconded this bill. He has spoken often on the topic, both inside and outside this chamber. Such cross-party cooperation is an indication of how members of this chamber can join together effectively on matters of great importance.
Through the studies and work undertaken in the Senate, we have had the good fortune to learn much about autism, its impact on families and communities and how it is treated by medical professionals, as well as other individuals and government.
We have learned that autism itself is complex. Autism spectrum disorder, ASD, is a neurological difference that begins in early childhood and persists throughout adulthood. ASD includes five pervasive development disorders, the most commonly known of which are classic autism and Asperger's syndrome.
As a spectrum disorder, the symptoms range from mild to severe, but generally include difficulty with social skills, communication problems, behavioural issues such as repetitive movements and restrictive interests, as well as difficulty with audio and visual processing. Some people who are more severely affected lack any ability at all to communicate with others, and may exhibit forms of extreme aggression and seek to injure themselves.
We learned that the prevalence of autism has increased greatly in recent years as the preamble to this bill states, "the number of Canadians diagnosed with autism spectrum disorders has grown by 150 per cent in the last six years."
Such increases translate to some 48,000 autistic children up to age 19, and 144,000 adults in Canada a staggering number. By way of illustration, adding together the men, women and children represented, we would have a city almost as big as Kitchener, Ontario. That number would not include the family members of these individuals whose lives are so deeply affected by autism on a daily basis.
I remind the chamber that during the committee hearings, we were told that families must adapt their whole lifestyle to meet the needs of children who have autism. If we were to include family members of people with autism in the numbers I have given to honourable senators, we would have a more complete picture of the extent to which autism impacts on the lives of Canadians.
We learned about the wide variety of ways to manage the treatment of autism, from applied behavioural analysis to intensive behavioural intervention, to an integrated multidisciplinary approach involving biomedical and nutritional treatments, in addition to behavioural interventions.
We learned from the experiences and concerns of people who have autism that their families and others such as clinicians and researchers live lives immersed in a world that is, generally speaking, foreign to us. Access to treatment is uneven across the country, in part because of issues relating to funding, wait times and disability supports. As well, it is the case, as with the rest of our health care system, that treatment is in the hands of the provinces and territories, which compounds the inequality.
Generally speaking, medical wait times are exacerbated by the continuing reliance on paper records, as opposed to electronic records. The article in The Globe and Mail on June 14, 2007 by columnist Andre Picard gave an all-too-accurate description of how the health care system far too often ends up working so inefficiently because of paper records.
I am pleased that the government saw fit to include $500 million in the budget to address this problem. We will see enormous progress over the next two years with electronic records for half our population.
A major concern in our study on the funding of autism treatment was the high cost to the families of treatment sometimes as high as $60,000 per year. The lack of adequate funding and high cost of treatment can be an impenetrable barrier for many families.
As Jason Oldford of Fredericton, New Brunswick argued before our committee:
. . . if you pay for it now, look at the return you get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money to keep them there.
I have spoken many times on the need for research because we really do not understand what this entity is. Research is the foundation upon which proper care must be built. Generally speaking, if the research is not adequate, the treatment on which it is based will also be inadequate.
We are well aware that a great deal of work is taking place, and the Senate report reminded us of some of the broad resources that have been directed to autism research, stating:
According to the Canadian Institutes of Health Research (CIHR), funding for autism-specific research has increased from just over $1 million in 2000-2001, to $3.5 million in 2005-2006. In total, CIHR has invested $15 million during this period. The Committee also heard that Genome Canada, the Canadian Foundation for Innovation and Health Canada invest federal funds into autism research. Witnesses commented on the excellence of the Canadian autism research community, highlighting collaborative spirit and collegiality.
I want to point out a few examples of the support for autism research and work that is being undertaken. In October 2007, our government announced the establishment of a national Chair in Autism Research and Intervention at Simon Fraser University with $2 million in funding from the provincial and federal governments. The Autism and Developmental Disorder Laboratory at Simon Fraser University is led by Dr. Grace Iarocci, who is studying cognitive and social development among children and adults with autism and other development disabilities.
On the other side of the country is the Joan and Jack Craig Chair in Autism Research at Dalhousie University, led by Dr. Susan Bryson. Dr. Bryson was a founding member of the Canadian Autism Intervention Research Network, and worked to establish the Autism Research Unit at the Toronto Hospital for Sick Children.
Senator Oliver pointed out the fine work being conducted through the Craig Chair and the tremendous support that Joan and Jack Craig have thrown behind this research.
Another example is Kilee Patchell-Evans Autism Research Group, which is a Canadian multidisciplinary team located at the University of Western Ontario in London and directed by Dr. Derrick MacFabe.
Scientists are looking at the causes of autism, which could include genetics, brain function and prenatal factors. Other factors could be environmental toxins, viral infections and immune system deficiency.
In addition, the Autism Research Training Program recruits and trains researchers in the field of autism in such medical disciplines as genetics, brain imaging, epidemiology, neurology and psychology.
Allow me to put on my other hat for a moment, which is the one I have worn as Chair of the Standing Senate Committee on Population Health. I believe it is highly appropriate to look at autism through the lens of population health and the determinants of health.
As honourable senators are aware, the committee has been involved in examining the impact of multiple factors and conditions that contribute to the health of Canada's population known as the social determinants of health.
These determinants include factors such as income, social status and education, working conditions and social support networks. This work involves not only understanding the impact of social determinants of health, but also translating that information into policies that will improve the overall health of Canadians in general, and in this case, provide more opportunity and hope for people with autism.
Dr. John Lynch from McGill University called for such policy-relevant research when he came before the committee and said:
I would also suggest that there is a fairly poor evidence base on what are most effective and most cost-effective interventions. I do think we can build a better policy-relevant evidence base, and that should be the priority in Canada.
For an example of work in this area, I would like to draw the attention of honourable senators to Columbia University sociologist Peter Bearman, who received a $2.5 million National Institutes of Health Director's Pioneer Award to support the study of the social determinants of autism. A September 2007 press release from the Institute for Social and Economic Research and Policy at Columbia University quotes Dr. Bearman as stating:
The autism epidemic is a huge and complex puzzle which impacts hundreds of thousands of children and families. . . . It is one of the most pressing population health problems of our time. The Pioneer award makes it possible for us to think new thoughts and take big chances in our understanding of the epidemic and hopefully to make major contributions to public health.
A little closer to home, we see the work of Dr. Peter Szatmari, a child psychiatrist who works with children with autism. He is Director of the Offord Centre for Child Studies and a founding member of the Canadian Autism Intervention Research Network. According to the 2008 Biennial Research Report of Hamilton Health Sciences, he is conducting a:
. . . multi-site, cross-Canada study of the developmental trajectories of very young children with autism/PDD from the point of diagnosis to their transition into Grade 1, a critical point in their lives. The study will attempt to identify important factors in the child, family, and community and in the interventions they received that were associated with the best outcomes.
Also involved in this extensive study are investigators Susan Bryson at Dalhousie; Eric Fombonne at McGill; Pat Mirenda at the University of British Columbia; Wendy Roberts at the University of Toronto; Isabel Smith at Dalhousie; Tracy Vaillancourt at McMaster; Joanne Volden at the University of Alberta; Charlotte Waddell from Simon Fraser University; and Lonnie Zwaigenbaum, also at the University of Alberta.
The depth and breadth of this research is precisely what is needed to more fully understand autism and the mechanisms that are associated with good outcomes for children. However, the need for research must constantly be supported. As an example, 40 years ago, we had little understanding of heart disease, strokes, cancer and type 2 diabetes. Today, about 50 per cent of heart disease, strokes, cancer and type 2 diabetes are preventable in the first place and the remainder are curable in large numbers of cases. This is all because of the knowledge base that unfolded over the last 40 year through Canadian and global research.
We must now do the necessary research to understand what autism is; then we must eliminate it as we did with smallpox and polio.
In addition to these efforts, there is a great role for Ottawa to play in the area of education and public awareness. During the committee's study, it was made very clear to us that there is a gap when it comes to an awareness about autism. The committee report stated that:
Throughout the course of the hearings on this difficult subject, witnesses identified a clear need for a national public awareness campaign. The Committee agrees that there is a great lack of understanding among Canadians about autism and its spectrum of disabilities and feels that a greater understanding of ASD by all Canadians could help to reduce the stress experienced by these individuals and their families.
Public awareness is vitally important in all areas of health, from encouraging people to garnering support. This need for public awareness brings us to the point of Senator Munson's Bill S-210, which will designate the second day of April each and every year as World Autism Awareness Day. It was celebrated for the first time this year, as the United Nations stated in a press release, "to highlight the need to help improve the lives of children and adults who suffer from this disorder."
In November 2007, the United Nations General Assembly unanimously declared April 2 as World Autism Awareness Day. Canada has, of course, already joined in the celebration of World Autism Awareness Day. This past April 2, former Minister of Health Tony Clement issued a press release.
The Hon. the Speaker pro tempore: I am sorry to interrupt the Honourable Senator Keon. Does he wish to ask for more time?
Hon. Gerald J. Comeau (Deputy Leader of the Government): He may have five more minutes.
The Hon. the Speaker pro tempore: Is it agreed?
Hon. Senators: Agreed.
Senator Keon: His press release marked the "first annual Autism Awareness Day launched by the United Nations and recognized worldwide." However, our participation was by virtue of membership in the United Nations.
Through the passage of this bill, we are showing that we truly respect Canadians with autism. I would like to remind honourable senators that the conclusion of the committee's report states:
Members of the Standing Senate Committee on Social Affairs, Science and Technology are profoundly aware of the challenges facing those with autism and their families.
The recognition of World Autism Awareness Day is a clear and unequivocal affirmation of that sentiment.
The Hon. the Speaker pro tempore: Does any senator wish to continue debate?
It was moved by the Honourable Senator Munson, seconded by the Honourable Senator Milne, that Bill S-210, An Act respecting World Autism Awareness Day, be read the second time now.
Is it your pleasure, honourable senators, to adopt the motion?
(Motion agreed to and bill read second time.)
Referred to Committee
The Hon. the Speaker pro tempore: Honourable senators, when shall this bill be read the third time?
(On motion of Senator Munson, bill referred to the Standing Senate Committee on Social Affairs, Science and Technology.)
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