Thank you, Madam Chair.
I want to thank you and all of the members of the subcommittee for including autism on your agenda today. To have autism formally and finally recognized as a health issue, and one that needs to be included in the neuroscience agenda, is indeed a significant step in the right direction.
Autism spectrum disorders are now being diagnosed at a rate of one in every one hundred and ten children. One in seventy boys is being diagnosed with an ASD. I should note that these statistics are quoted from prevalence studies generated, as Laurie has mentioned, by the CDC in the United States. Dr. Eric Fombonne, who is the director of psychiatry at Montreal Children's Hospital and a world-renowned autism researcher with particular expertise in the field of epidemiology, confirms that the statistics are not significantly different here in Canada.
We don't know with any certainty how many individuals live with autism in Canada. We do know that the federal government, through the Public Health Agency of Canada, is embarking on a surveillance initiative that will ultimately provide us with a clearer picture. This is another step in the right direction, and we, again, applaud this necessary investment.
We do know that autism is a lifelong condition, and when you factor in immediate and extended families, employers, teachers, therapists, neighbours, and friends, it's very difficult to find someone who is not directly or indirectly impacted by autism. It is an epidemic and one that is not going away.
Autism is an incredibly heterogeneous disorder that impacts every individual in a unique way. This makes it very difficult to describe and even more difficult to study in a research lab.
Despite its heterogeneity, there are commonalities that are faced by Canadian families with a loved one who is on the autism spectrum. There are lengthy wait lists to receive a diagnosis, sometimes up to two years, depending on where you live in Canada--two years, just to get a piece of paper that says your child has autism so that you then have the privilege of sitting on a wait list for even longer for treatment. If you have personal wealth, you could access a privately funded diagnosis, which will cost you between $2,000 and $4,000, depending on where you live in Canada.
Then the real fun begins. Then the torture begins as you sit on a wait list for treatment. And that's if you're lucky enough to live in an area of Canada that provides the type of treatment that is required by your child, and then lucky enough again if you qualify to receive those treatments.
As an example, if you live in Nova Scotia as a family, your name is put into a lottery and you wait to see if your name comes up in the lottery to receive medically necessary treatment for your child's autism. If you live in Ontario, you are judged upon how severe your child's autism is to see if you qualify for services.
If you'll allow me, I have this comparison. You have two families, one with a child with cancer and another with a child with cancer. For this family with the child with cancer, the cancer is not maybe as grave an issue as it is for this other child's family. Who makes that determination? I don't know. But this is the case with autism, that the families who have a higher-functioning child are denied access to treatment. They're not even given the opportunity to sit on a waiting list.
We know that the sooner we recognize the early warning signs and the sooner we get a diagnosis and begin intensive treatments, the better opportunity we provide for a productive, meaningful life that will be less of an economic burden to society in the future. “Pay now or pay later” actually should be reworded to be “pay now or pay much more later”. It's just that simple. The costs of providing timely diagnosis and effective intervention may be high when viewed through the overall lens of increasing health costs, but the cost of doing nothing or doing not enough is even higher. There have been some cost-benefit analyses conducted in the U.S. that suggest early intervention could save one million dollars per individual per lifetime.
Too many children arrive on the steps of their local public school to start kindergarten not having received any form of treatment or one minute of therapy. We are setting our children up for failure. We are setting our teachers up for failure, and we are undermining the quality of education of all students. And ultimately, our families are failing as well.
There is extreme financial and emotional hardship placed on families who receive this devastating diagnosis, significant stress placed on the siblings of affected children, and, of course, the drain on Canada's workforce when parents must leave work temporarily or permanently to stay at home to care for their child who can no longer be accommodated in a typical preschool, daycare, or school-based environment.
Then our kids grow up. There are thousands of adults living with an ASD with virtually no access to any meaningful employment or community services. That's not to say that our kids don't have the potential; they do. They are just not given the opportunity.
In a recent supplement of Autism Speaks Canada published in The Globe and Mail last April in recognition of World Autism Awareness Day, Dr. Fombonne called the autism situation in Canada a disaster. He is not alone in his assessment.
So that's the bad news. There is good news.
Where we excel in this country is in the global research agenda. Canadian researchers from coast to coast continue to play a critical role in global consortiums that are making significant headway in all key areas of autism research: causes, diagnosis, and treatment. A pillar of our mission at Autism Speaks is to accelerate the pace of autism research, and this remains our key focus. In the last five years, over $142.5 million has been committed by Autism Speaks to global research initiatives through 2014, and that includes a significant investment right here in Canada.
So what do we know? What has been the return on our investment? We have made significant progress over the last five years in the area of early diagnosis. Through research led by Canadians in the baby sibling studies, we now see some of the earliest warning signs in children as young as eight months, and we've used this research to empower parents who suspect their child may be showing some early warning signs to not take no for an answer.
The heightened awareness of autism through awareness campaigns generated by Autism Speaks, coupled with resources now available to families, means that when family doctors tell parents to wait and see, parents know not to wait, because waiting could mean years on a waiting list for diagnosis and for treatment. We've seen remarkable results in early interventions through grant funding provided by Autism Speaks Canada and its Toddler Treatment Network, which is led by Canadians Dr. Wendy Roberts and Dr. Susan Bryson. We know that with timely, appropriate, innovative, flexible, and child-focused treatments we can change the trajectory of the development of some children who show early warning signs of autism.
We have identified some ASD-causing genes and copy number variations that could account for about 15% of individuals with autism. We know that autism is likely not caused by one gene, but by hundreds of genes. If you ask Dr. Stephen Scherer and Dr. Peter Szatmari, two Canadians who lead the global autism genome project, what is holding us back from even more discoveries in the area of genetics, the answer is simple—money.
I've included a recent summary of a special two-day conference on autism held prior to the annual meeting of the Society for Neuroscience in San Diego, giving scientists an opportunity to focus on ASD and share ideas. The conference was called “The Emerging Neuroscience of Autism Spectrum Disorders: Etiologic Insights; Treatment Opportunities”, and offered an overview of current autism research from many of the world's leading autism researchers. One of the keynote speakers was Dr. Stephen Scherer, a Canadian.
Individuals with autism invariably suffer from a host of co-morbid medical issues, seizure disorders, GI issues, sleep disorders, gross- and fine-motor development problems, and nutritional deficits. Until recently these medical issues were often treated in isolation from autism. ATN, the Autism Treatment Network, is funded by Autism Speaks and is developing best practices for treatment of medical issues associated with autism.
Without sounding too much like a broken record and a very un-Canadian way of giving ourselves another pat on the back, it has to be noted that one of the key sites of the global ATN is right here in Canada, jointly led by Sick Kids, Bloorview, and Surrey Place Centre in Toronto. And one of the principal investigators is sitting right here beside me, Dr. Wendy Roberts.
We hope to expand the Canadian presence of the ATN to other sites in this country and continue to grow this important field of study that gives families access to a range of specialty practitioners in each of these medical areas and also informs the global research agenda.
Each year, Autism Speaks publishes the top 10 research innovations in autism. I've included the 2009 version in the folders I've provided to the clerk, and 2010 will certainly be another extraordinary year.
Autism Speaks holds its many research funding partnerships with CIHR in the highest esteem and showcases its public-private partnership all over the world. At Autism Speaks we know that partnership and collaboration will ultimately lead us to the answers faster and more efficiently.
To conclude my introductory remarks, there are clearly some ways that the federal government can have an impact on the autism community.
First, it can continue and grow its support of research in all areas of the study—causes, diagnoses, treatment, biology, and knowledge transfer of the research results—thereby attracting and supporting emerging scientists to work in this very exciting and fast-paced field.
It can continue its efforts through the Public Health Agency to initiate a national surveillance program.
Moreover, it can make the development of a national autism strategy a priority, using willing and respected partners, like my colleagues and I, to garner stakeholder input to ensure that identified priorities are addressed and put into action.
At Autism Speaks Canada, our goals are very simple. We will continue to raise funds to support autism research in Canada and to partner with CIHR to leverage the support needed to find the answers to the autism puzzle.
We will continue to raise awareness of autism, in particular the early warning signs. Awareness will also heighten the consciousness of the unaffected population to enhance its acceptance of the incredible autism community and the value that each individual with autism brings to society.
We will continue to raise money to fund community grants and other family services initiatives, such as our First 100 Days Kit.
We will work with current partners across the country to further enhance our autism resource database to provide quick, easy, and reliable access to information on all things about autism in Canada—anything from where to get a diagnosis, where to access funding, where to find a speech pathologist or an occupational therapist, all the way through to where to find a dentist who specializes in special needs populations.
It's our goal to make the path, which is a very windy path right now for families, as straight as we possibly can. We need to do this for our families. We need to do this for our teachers, for our researchers, and for our service providers.
We will continue to advocate and be a willing partner with all levels of government in developing strategies and system changes to reduce wait times for diagnosis, to ensure immediate access to intensive evidence-based treatments that are flexible and meet the needs of each individual child, and to ensure that these treatments and supports continue across someone's lifespan, and are not cut off by their age.
We will continue to advocate and be a willing partner with all levels of government in the discussions of how we service the needs of our adult and our caregiver communities. This is a huge, huge void in Canada.
This is a very large and very daunting task—