Bill S-206 (Historical)

World Autism Awareness Day Act

An Act respecting World Autism Awareness Day

World Autism Awareness Day Act

[Matthew Kellway, NDP, Beaches—East York, ON]

Mr. Speaker, I am pleased to rise in the House today to speak in support of Bill S-206, An Act respecting World Autism Awareness Day.

On December 18, 2007, the United Nations General Assembly, through resolution 62139, designated April 2 from 2008 on as World Autism Awareness Day. My colleague for Vancouver Kingsway has already put forward Bill C-351, which also calls upon the Government of Canada to recognize April 2 each year as World Autism Awareness Day. In a sense, this bill is playing catch-up. Nevertheless, obviously the value of such a designation is in raising awareness about the condition, the challenges faced by those living with an autism spectrum disorder and the importance of improving research, diagnosis and treatment options for this disorder.

Autism is the most common neurological disorder in children and impacts many Canadian families, with as many as one in every 110 children having some form of autism spectrum disorder. It has been estimated that there are approximately 35 million people living with autism around the world.

In Canada, although there is a lack of detailed epidemiological data, there are currently around 48,000 children and 144,000 adults with some form of autism. It is known that the rate of autism has been increasing without explanation with each passing year; in fact, it is estimated that the rate of autism has increased about 600% in the last 20 years. When one looks at this data, what becomes obvious is that autism is a widespread and growing issue about which we know very little.

What we also know is that living with it is an enormous challenge. Friends of mine, Michelle and Brett, have a beautiful daughter, Tennyson, just Tenny to friends and family. Tenny is the younger sister to Ethan and Stephanie.

Michelle, Brett, Steph and Ethan's love and devotion for Tenny is infinite, unconditional, inspiring and so very patient. The image that stays with me is one that has repeated itself many times over the years. It is of Brett and Tenny passing by my house slowly, Tenny with her headphones on, absorbed and happy in her music, and Brett happy alongside, enjoying the day in the company of his beautiful blue-eyed companion Tenny.

However, I asked Michelle and Brett to share with me, so that I could share with members, what it is like to raise Tenny. This is what they would like members to know:

“Our daughter Tennyson is 11 years old and she is one of our biggest joys. However, having an autistic child presents many challenges and stresses for our family.”

“Tennyson requires constant assistance with eating, bathing, dressing, toileting, et cetera. As if this is not enough, every stage of her life requires an almost full-time effort to navigate the system for what she needs. During her preschool years we spent countless hours and dollars on IBI therapy, as the Ontario government wait-listed Tennyson for three years.”

“Today our biggest challenge is finding appropriate schooling for her now and in the future. Today Tennyson attends a remarkable TDSB school, Beverley. Finding our way to Beverley was fraught with bureaucracy—as if we have time. We need more schools like Beverley with OT, speech and language, communication tools, and excellent staff under one roof.”

“Our imminent fear is finding a comparable high school. Oh, and what about the future? Proper care, affordable care, safety, et cetera. Families like ours have little time, money and mental energy. We need help.”

I should note for the House that those last three words, “we need help”, came to me in upper case font with more than one exclamation mark attending them.

This is the unvarnished truth of the matter. The love of a family can overcome a lot. Knowing Michelle, Brett, Steph and Ethan as I do, Tenny will never want for that in all its manifestations. However, it is our love that is also required, not just for autistic kids and adults but for the moms and dads and brothers and sisters who need our support.

While it is important to bring awareness of the impact of autism on the lives of so many Canadians, we collectively, through our government, are still failing to show measurable and meaningful support for those living with autism spectrum disorder. Instead, the government chooses symbolism over real action.

There is much that we can and should do. Through the testimony of witnesses at both Senate committees and the Standing Committee on Health of the House, we as parliamentarians have been told directly what needs to be done, or at least where we need to start.

We can start first with my colleague from Sudbury's private member's bill, Bill C-219, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorders. This very simple but important bill would, among other things, establish national standards for the treatment and delivery of autism-related services and create a system to monitor autism prevalence.

My colleague from Sudbury has a second private member's bill, Bill C-218, that would also qualitatively change the lives of kids and adults with ADS as well as their families. Bill C-218, An Act to amend the Canada Health Act (Autism Spectrum Disorders), would mandate the inclusion of ABA and IBI treatments under the Canada Health Act.

These bills would go a long way to redress what Kathleen Provost, an executive director with the Autism Society of Canada, called in her testimony before the Subcommittee on Neurological Disease of the Standing Committee on Health, “a two-tiered health system for Canadians living with an ASD”.

According to Ms. Provost:

There is a health system that is inconsistent because of where you are, what province you live in. There's also a health system that's not equally accessible....We seem to have a public health system versus a private health system.

Ms. Provost cited in evidence the difference in cost of diagnosis between provinces. She also talked about the extraordinary cost of treatment, a cost so high that it was financially ruinous to the majority of Canadian families.

The multidisciplinary approach necessary for the treatment of autism is not covered currently under the Canada Health Act. However, it can cost families well in excess of $50,000 per year. Those kinds of costs inhibit, first, early diagnosis and, second, effective treatment once diagnosed. That means so many kids and so many parents are forced financially to live and struggle with a condition and in circumstances that can be ameliorated and treated.

There are other solutions as well that are readily available to us to relieve the stress, both emotional and financial, for families. These have to do with income tax treatment and amendments to labour and employment standards.

At the end of the day, what is at issue and what is absent here is federal leadership on the issue of autism.

The last word on the federal role I give to Kathleen Provost, because she captured this issue so well in her testimony to the health subcommittee. She said:

We think the federal government is in a unique position as a national facilitator engaging provinces and territories. The federal government can stage and maintain a national agenda for autism....The challenge before us is to find effective ways to leverage the strength of our federal-provincial system to advance the autism agenda in Canada so we can provide universal access to treatment and services.

I will support Bill S-206, An Act respecting World Autism Awareness Day. However, it needs to be remembered that those who need our support are already aware all too intimately, and too often painfully, of the challenges of autism spectrum disorder.

In the words of Tenny's mom, Michelle, “They need help”. Therefore, I urge the government to get on with what the Canadian government is supposed to do, which is supporting Canadians who need support.

[Élaine Michaud, NDP, Portneuf—Jacques-Cartier, QC]

Madam Speaker, it is a great privilege to rise today in the House to speak to Bill S-206, An Act respecting World Autism Awareness Day.

This cause is particularly close to my heart and I know this debate directly relates to thousands of Canadian families.

Bill S-206 calls on the government to designate April 2 as World Autism Awareness Day across Canada.

On December 18, 2007, the United Nations General Assembly declared that April 2 of every year would be dedicated to efforts to increase our understanding of autism spectrum disorders. Autism Society Canada and other civil society groups already recognize this important day. It is time for the federal government to do the same.

Autism is the most common childhood disease and is four times more common in boys than girls. It is estimated that more than one in every 110 children is born with some form of autism and that there are currently nearly 35 million autistic people around the globe. In Canada alone, there are approximately 200,000 autistic people, including 48,000 children.

Over the past 20 years, there has been a drastic increase in the number of diagnoses of autism disorders, without any clear explanation for this increase.

Despite the ever-growing number of diagnoses, autism is a disability that remains unfamiliar to a large number of Canadians. The many forms of autism are part of a group of conditions referred to as autism spectrum disorders.

Each case of autism is unique. The intensity of symptoms is different for every autistic person, and the symptoms may also vary over time.

Generally speaking, autism disorders are characterized by deficiencies in verbal and nonverbal communication, and there may be learning disabilities. Without early intervention, nearly 40% of autistic individuals will never learn to speak.

Autism disorders are also characterized by problems with social interaction, and by repetitive and stereotypical behaviours.

It is not yet known what causes autism spectrum disorders, nor how they can be treated. However, it is known that early diagnosis and specialized intervention can greatly improve the quality of life and the social abilities of an autistic individual and his or her family.

The passage of Bill S-206 will help shed light on autism and the other pervasive developmental disorders, and this is a step in the right direction.

However, we must go far beyond merely raising awareness among Canadians. The government must take action.

At the present time, Canadian families who are affected by autism spectrum disorders have difficulty obtaining the help they need and they may not have equal access to health care services and social services, depending on the area of the country in which they live.

This situation is unacceptable. As parliamentarians, we have the duty and the power to provide assistance to these families who really need it.

I am very familiar with the day-to-day situation facing families affected by autism spectrum disorders. My 23-year-old brother, Philippe, was diagnosed with a pervasive development disorder not otherwise specified, a PDD-NOS, when he was 17 years old.

Philippe is a cheerful and generous person, who likes to help others and for whom family is very important. However, things were not always easy for him at school and he always had difficulty with social integration.

For many years, my parents did everything they could to help him, without knowing the cause of his problems. There were very few services available to help them in the schools and they had to do almost everything on their own.

They consulted a large number of specialists, without ever really getting a proper answer. There were countless visits to doctors, pediatricians, neurologists, psychologists, speech therapists and occupational therapists over the years, but the questions remained. Of course, most of these tests were not covered by private medical insurance or by Quebec's Régie de l'assurance maladie. My parents had to cover all the costs themselves. It took 12 years to get a formal diagnosis for my brother.

Thanks to a psychologist who knew about pervasive developmental disorders and who had just been hired at Philippe’s secondary school, Philippe was finally diagnosed. It was sheer chance.

After the diagnosis, my brother was able to enrol in a specialized class with more personalized support, but the program was available in only one of the town's four secondary schools. As a result, he had to change schools and build a new social network, which is quite difficult for people living with pervasive development disorder.

My parents have looked for programs targeting people living with autism spectrum disorders, but these programs are virtually non-existent.

My brother was lucky enough to have access to socialization courses offered at a hospital in the region, as well as to regular follow-ups with a psychiatrist, but nothing more. The only program in the region catering to teenagers was full. He was never able to enrol.

As far as job placement is concerned, there are absolutely no programs to help people living with autism spectrum disorders.

Since my brother does not have an intellectual disability, most of the programs were not available to him. He had to apply for social assistance in order to get access to a program that enabled him to do an internship in the workplace. Without his perseverance and that of my parents, Philippe would not have had this opportunity to develop, to validate himself and to acquire new skills.

It is high time that Canada had a national strategy on autism spectrum disorders, and took practical steps to help people with autism and their families.

Currently, it is the provincial governments, health promotion organizations and families that provide the necessary care to people with autism.

However, the federal government also has a responsibility to people with autism and their families. This government must provide sufficient resources to the provinces and territories so that they can provide treatment and services to people with autism spectrum disorders, including specialized education and professional training.

It does not make sense that in our society, people who are able to hold jobs and fit in must rely on provincial social assistance to be able to access job opportunities. I think that is counter-productive. The provinces are not investing resources in the right places. Families need direct access to these resources. There are job opportunities and integration opportunities for people with autism spectrum disorders. We must offer those to them.

We must also ensure that testing and treatments are covered by public health insurance plans. This is not the case right now. The various specialists required to diagnose pervasive developmental disorders are not included in the list of specialists paid by the current plan. Parents must sometimes pay vast amounts of money to get answers to their questions and come up with a plan to help their children.

As I mentioned earlier, in the case of my brother it took 12 years to get a diagnosis—12 years of tests, appointments and uncertainty. That is a heavy investment and a great deal of anxiety for the families and the people with autism spectrum disorder, who understand that some things about themselves do not work the same as they do in other people. They are looking for answers and may not have access to them, perhaps because of the cost or where they live.

We therefore have a responsibility as parliamentarians to consider this issue and offer families opportunities that are not currently available to them.

Programs must be put in place to allow people with autism to develop their skills and reach their full potential. With attention and programs and assistance adapted to their needs, people with autism are able to accomplish many things and can develop social networks that they might not be able to access without additional help that cannot always be provided by charitable organizations in the community. These resources are not always available. I know that these resources are lacking in the Outaouais region and other areas of Canada. Families are speaking out about this need. We must quickly address this need and find solutions.

There is still much work to be done in order to help Canadian families affected by autism spectrum disorders. I hope that the government will finally hear the pleas of families such as mine, who are desperately waiting for their government to take concrete action.

Canadians sent us here and they have confidence in us. In each of our ridings, there are families that face these situations every day, and they deserve our support and our help. We are in a position to do that.

The world autism awareness day bill is a step in the right direction. I am very proud to support the bill, as are my colleagues and several other members who have indicated that they will also support it.

However, much remains to be done. We cannot stop there. Autism spectrum disorders affect the lives of thousands of Canadian families. It is our responsibility to help them now.

Today, I spoke about my own family. But others are in the same situation and have the same problems as me, my family and my parents, and they expect us to act quickly on their behalf. Today, I hope that this will be just the first in a series of steps that will finally meet their expectations.

The House resumed from February 28 consideration of the motion that Bill S-206, An Act respecting World Autism Awareness Day, be read the second time and referred to a committee.

[Jacques Gourde, Conservative, Parliamentary Secretary to the Minister of Public Works and Government Services]

Mr. Speaker, I appreciate this opportunity today to speak to the issue of autism in light of Bill S-206 by the hon. Senator Jim Munson, to institute a World Autism Awareness Day.

This bill draws attention to a major problem that affects all layers of society, from Canadians with autism, to their families, their friends or their caregivers.

The government has designated April 2 as World Autism Awareness Day to mark the importance of better understanding this disease and its repercussions on Canadian families.

It is essential that we become aware of the major challenges facing people with autism, that we understand the exceptional devotion of the caregivers and that we recognize the remarkable work of those who contribute to enhancing our scientific knowledge about the diagnosis and treatment of this disease.

I am going to pick up on what others have said and emphasize that, although autism is often considered a problem that affects children, we must not forget the Canadian adolescents and adults who have not benefited from early diagnosis and quick treatment.

Teenagers are all too aware of their limitations and differences, which can make them feel marginalized, vulnerable and isolated.

Easy access to reliable information can make all the difference in how families react to the situation.

If Canadians know which treatments have been deemed effective and can get results from the most recent studies on what works and what does not, they will be able to understand and choose the treatments that best suit their needs.

The federal government wants Canadians to have access to the same high-quality, evidence-based information on autism.

[Harold Albrecht, Conservative, Kitchener—Conestoga, ON]

moved that Bill S-206, An Act respecting World Autism Awareness Day, be read the second time and referred to a committee.

Mr. Speaker, I appreciate this time today to speak to the issue of autism in light of Bill S-206, an act respecting world autism awareness day. It is good for us in the House to have the opportunity to discuss this health issue that affects people all over the world. This bill was tabled in the other place by Senator Munson and I am pleased to support the bill.

This government recognizes that autism spectrum disorders, referred to as autism or ASD, represent a serious health and social issue affecting many Canadian families and individuals from all walks of life. In just a few short decades so much has changed regarding our awareness and understanding of autism.

Regarding Bill S-211, the predecessor bill to Bill S-206, I stated in the House that when I joined the Waterloo County School Board as a trustee in 1978, one of our superintendents mentioned the word “autism”. To be honest, I had not even heard the word before that time. I certainly did not understand it. I remember how our officials grappled to address the needs of the children and their families who were facing the challenges of dealing with autism. Since that time, it is obvious that we have come a long way in addressing this issue, but that we also still have a long way to go.

Today, our government is pleased to have the opportunity to express our support for Bill S-206, an act respecting world autism awareness day. Since I have the honour of sponsoring the bill in the House of Commons and therefore being the first speaker, I will briefly review some of the very basic and elementary facts about autism.

Autism is a complex, life-long, neurobiological condition that is part of a group of disorders known as autism spectrum disorder, or ASD. Autism affects a person's ability to communicate and relate to others. It is characterized by repetitive behaviours and the need for strict routines. Symptoms can range from mild to severe. Autism can impair the development of speech and an individual's ability to relate to people, making it hard for them to make friends and to be socially accepted.

Autism impacts the way individuals react to what is happening around them. They are often oversensitive to certain stimuli, such as noise or being touched, and they can have difficulty adapting to new situations or any activity out of the ordinary. For those with milder symptoms, they will appear like any other individual , but still often seem very socially awkward. They may have puzzling behaviours in otherwise normal situations making it difficult for others to understand or know how to react to them. I want to stress that no one person with autism is the same as another. Each has varying abilities, skills and needs like all of us. Each individual is unique and must be viewed, recognized and treated as such.

Right now we do not know how to prevent autism, nor is there a cure or any single treatment. This represents a significant challenge to health care providers, to families and to policy-makers. So, where are we on this issue? We find there are many important questions to be addressed. What are the best methods for a diagnosis? How many Canadians have autism? What are the causes of autism and how can we prevent it? Why are boys four times more likely to be diagnosed with autism than girls? What are the best treatments and intervention? How can we best support individuals with ASD and their families?

Although there are many unknowns, I do not want to sound pessimistic. There has been much progress over the past decades. There have been many advances. As one example, we know that the earlier the diagnosis is made, the earlier the interventions can begin in order to maximize the benefits and outcomes. Diagnosing ASD is not easy because of the complexity of the condition and the range of the autism spectrum. There is no simple biomedical test. We need a team of specially trained professionals observing and assessing specific behaviours. These professionals will use a variety of different screening tools that assess development and the level of disability.

Currently, most children with autism are diagnosed within the first three years of life. However, we know that research is helping to improve the diagnostic tools such that some of the signs of autism can now be detected as early as 12 to 18 months of age. This makes it possible to intervene much earlier, thus leading to better outcomes.

Diagnosing autism is difficult when so much is still unknown about its causes. It is commonly believed that there are likely many causes including: environmental, biological and genetic factors.

Regarding treatment, it is commonly understood that there is no single intervention for all patients. Current interventions focus on specific aspects of the disability, such as developing communication and social skills. Research into this area continues and our understanding is increasing.

Current data indicates that autism is the third most commonly reported chronic condition among children under the age of four, after asthma or severe allergies and attention deficit disorder. However, these are the numbers diagnosed and reported, not numbers of children actually affected by autism. With so many unknowns, it is important to build on our knowledge and evidence about ASD. We can then apply this information to improve diagnosis and treatment and to raise awareness among Canadians. To ensure that we have sound scientific knowledge of ASD, the Government of Canada is focusing efforts on surveillance and on using the data to provide useful information to families and health care providers.

Let me provide a few more details. First, surveillance is the systematic collection of data about health conditions, disorders and illnesses in a population, including trends over time. Information from surveillance is used to inform and direct public health action. Establishing a surveillance system is not an easy task but it is an essential one if we are truly to understand the magnitude of any health issue. To be effective, surveillance must be built on a foundation of agreed-upon and achievable objectives. Case definitions, surveillance standards, data collection tools and a framework need to be developed to ensure that data collection, analysis and reporting provide reliable and timely information.

The standing committee on social affairs, science and technology from the other place recognized the importance of surveillance for autism diagnosis in its report entitled “The Enquiry on the Funding for the Treatment of Autism. Pay Now or Pay Later. Autism Families In Crisis”. That report called for a national surveillance of autism and recommended that key stakeholders be consulted.

This government is already taking action in this area. I am pleased to report that the Public Health Agency of Canada is currently consulting with provincial and territorial representatives to determine current priorities, practices, data availability and plans related to the surveillance of ASD and other developmental disorders. An expert advisory committee is being created to guide the development of this new surveillance system. The first meeting of this committee is scheduled for March 2012. This expert advisory committee will review the information collected from the provinces and territories to determine the best way to capture information on ASD across Canada. Over the next year, the Public Health Agency of Canada, through the expert advisory committee, will continue working with provincial and territorial partners, national stakeholders and experts in health, education and social community services to design, develop and implement pilot projects across the country. This will enhance national surveillance of autism and other developmental disorders in Canada.

This work will bring us that much closer to answering that most important question of how many. It will also go a long way to providing vital information to support policy and program development across the country. Knowing the magnitude of the problem and the issues around it will help governments and communities identify how best to direct resources to improve the lives of those living with autism. Over the next year, the Public Health Agency of Canada, working with the expert advisory committee, will develop a framework and national standards for surveillance and will identify pilot sites for a surveillance system. These activities build on previous investments by the federal government in the research and surveillance of autism. It is crucial work that will bring together key players to help overcome the challenges of autism in Canada.

Finally, we cannot underestimate the power of scientific evidence when it is translated into useful information for raising awareness and taking action. Much effort is being focused on early diagnosis and early intervention for children. While this is a laudable and right thing to do, we must not forget the teens and adults with autism. While many adults with this condition lead successful lives, others will need ongoing support. This latter group needs our special attention, as little is known about the best ways to support them and their families. By working with our partners to raise awareness of what it is like to live with autism, we can support the adolescents and adults of today and tomorrow to reach their full potential and take their place in our communities.

Individuals with autism and their families want what everyone wants, to fulfill their aspirations and flourish with the support of their family, friends and society as a whole. All too often, however, they and their families face the stigma and lack of understanding of the challenges they face and the support they need in order to reach their full potential.

Families can feel that they are on their own. They might not know which way to turn or where to seek the best advice. However, through their personal advocacy efforts, individuals affected by autism and their families have shown us how resilient they are. People affected by this condition can and do succeed with the right support. It is important that these individuals and their families know that the federal government is working with its partners and other stakeholders to support the autism community by enhancing the evidence base and increasing awareness.

Many times over the last six years since I have served here in Parliament, and again today, my friend and colleague, the member for Edmonton—Mill Woods—Beaumont has shared his very personal journey with this House. He has demonstrated how a family deals effectively with the enormous challenges faced by those dealing with autism. It has been a real honour, not only for me and my colleagues on this side of the House but for all members, to have met Jaden, to see the fantastic enjoyment that he gets from life and to experience the joy that he gives to each of us as members.

I am amazed at the perseverance and tenacity that is needed by every family and community that deals with autism on a daily basis. It is clear that we need to do all that we can to raise awareness and work toward effective support and solutions. Through public dialogue on autism spectrum disorder, and through our support for activities to increase knowledge, we are helping to increase awareness not only of the challenges faced by those with autism and their families, but also of the potential of these individuals.

I am grateful for the opportunity today to speak on autism and to share the ongoing work that is taking place to support Canadians.

[The Chair, Conservative, Harold Albrecht]

—in a future House, in a future spot.

Are all in favour of Bill S-206 proceeding? Seeing no objections, so ordered for Bill S-206.

Next is Bill C-377. I'll ask our analyst to comment on it.

[Michel Bédard]

With respect to An Act respecting World Autism Awareness Day, the House of Commons has not already voted on a similar bill in the current Parliament. Therefore, I see no reason to recommend to the subcommittee that it be designated non-votable.

[The Chair, Conservative, Harold Albrecht]

Yes.

Back to the issue at hand, Bill S-206, we'll ask our analyst to comment now on the one criterion that exists for Senate bills coming to the House.

[The Chair, Conservative, Harold Albrecht]

Okay, I think we're coming to a consensus. All those in favour of allowing Bill C-350 to be considered votable?

Okay. Bill C-350 is deemed votable.

On Bill S-206, we'll ask our analyst to comment.

[Harold Albrecht, Conservative, Kitchener—Conestoga, ON]

moved for leave to introduce Bill S-206, An Act respecting World Autism Awareness Day.

Mr. Speaker, I rise today to introduce Bill S-206, an act respecting world autism awareness day.

I think all of us in the House have met or have had personal contact with those who are struggling with autism. We are very much aware of our colleague, the member for Edmonton—Mill Woods—Beaumont, who has done such an incredible job of raising the awareness, understanding, acceptance and desire to help people and families struggling with autism. I am continually amazed at the perseverance and tenacity demonstrated by every family and community that has to deal with autism on a daily basis.

We need to do all we can to raise awareness, to work toward effective solutions and to finding ways to support them.

(Motion agreed to and bill read the first time)

Message from the Senate

[The Acting Speaker, Conservative, Bruce Stanton]

I have the honour to inform the House that a message has been received from the Senate informing the House that the Senate has passed the following bill: Bill S-206, An Act respecting World Autism Awareness Day.