House of Commons Hansard #143 of the 41st Parliament, 1st Session. (The original version is on Parliament's site.) The word of the day was trade.

Topics

World Autism Awareness Day Act
Private Members' Business

5:30 p.m.

NDP

Élaine Michaud 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.

World Autism Awareness Day Act
Private Members' Business

5:40 p.m.

Liberal

Francis Scarpaleggia Lac-Saint-Louis, QC

Mr. Speaker, first I would like to salute Shawn Murphy, the former member of Parliament for Charlottetown who retired just before the last election. I should add that the current representative for that riding is an excellent member who has obviously taken much inspiration from Mr. Murphy in terms of the sincerity of his efforts and the intensity of his work ethic.

Shawn Murphy tabled bills and motions several times in this House calling on the federal government to create a national autism strategy. The bill we are debating today, courtesy of Senator Munson, is calling on the government to officially enact in Canada April 2 as world autism awareness day. It is but one item in a suite of federal actions needed to address the growing and still poorly understood autism spectrum disorder, which affects a growing number of children and their families every year in this country.

In turn, we can only have a concerted national action on autism if first we create a critical level of awareness among the general Canadian population. This awareness will lead to overwhelming public consensus on the need for such action, followed logically by political pressure at the grassroots that, at the end of the day, should produce concrete government measures on autism.

To many of us, autism appears to have come out of nowhere. Personally, I do not recall talk of autism when I was growing up. I do not know if this is because autism had not been properly diagnosed or whether it is because new factors are at work that have increased the incidence of autism.

As we know, approximately 1 in 110 Canadian children are diagnosed with autism. The number of new cases is increasing by 10% to 17% per year. Another fact of which I was not aware is that boys are four times as susceptible as girls to be diagnosed with autism. Just this past Sunday, I spent the afternoon with a friend whose son is autistic. Today I meet numerous parents and families who are nurturing an autistic child with extraordinary love, dedication, intelligence, creativity and patience. What all these parents have in common is a fierce and indefatigable determination to create a powerful community of interest around those directly or indirectly affected by autism and to push for a proper public policy response to autism at the local, provincial and national levels. I will take this opportunity to salute these parents.

One of the reasons I have chosen to speak today in the debate on the bill is that the region I represent on the island of Montreal, what is commonly referred to as the West Island, is home to a higher percentage of people with intellectual disabilities and autism than any other region in Quebec. If this is so, it is testimony to the extraordinary civic-mindedness and volunteer spirit of my community, I can proudly say. This spirit has been the historic hallmark of the West Island and lives on today, perhaps on an even wider scale as primary and secondary schools, for example, make community service part of their curriculum.

One of the most eloquent examples of how citizens of the West Island coalesce to meet social and health needs is through the West Island Association for the Intellectually Handicapped, which operates under the vision and energetic leadership of Natalie Chapman. WIAIH, which in 2008 celebrated its 50th anniversary as a community organization, provides support to people with intellectual disabilities or autism. Its mission is to maintain and develop innovative services and to sensitize the community to available services and the need for greater government support for people impacted by intellectual disabilities and autism.

If the West Island of Montreal includes such a large number of families with children with intellectual disabilities or autism, it is because of the scope and quality of WIAIH services. In other words, families move to the West Island expressly to access those services. As a side benefit, our community attracts extraordinary citizens to live and work in the community and surrounding region. These are dynamic people who help us grow in so many different ways.

Incidentally, WIAIH has served as an incubator for the development of other local organizations in the same sector, namely, West Island Citizen Advocacy, Placement Potentiel, AVATIL, the West Montreal Readaptation Centre, the West Island Residences for the Intellectually Handicapped and the John F. Kennedy School.

While we are fortunate in the West Island to house a critical mass of organizations like WIAIH, our success in constructing an enviable social and health infrastructure underscores the fact that other regions lack a comparable level of support. In other words, while WIAIH is a beacon of hope and assistance for those suffering from autism and their families, at the same time the organization's success illuminates the fact that in other regions a greater level of need persists and goes unmet.

One should not, for a moment, think that WIAIH has all the resources it needs at its disposal. Whenever I have the opportunity to meet and speak with Natalie Chapman, she reminds me of the overwhelming pressure on our community. She reminds me of the weight under which families are labouring and how diagnosis is not being conducted early enough in those crucial years for children with autism. She reminds me that post-diagnosis intervention still does not occur early enough, and that families desperately need respite.

What is needed today at the federal level, and urgently so, is best captured by the Autism Society of Canada. It says, “We need increased funding for provinces and territories to provide critical no-cost treatment, education, professional training and required supports for Canadians with autism. What is also needed is a mandate for the Public Health Agency of Canada to make autism a national priority by initiating surveillance and reporting, and setting national standards for treatment and service delivery. Also needed is an allocation of significant funds targeted for autism research to Canadian funding organizations, such as the Canadian Institutes of Health Research. Finally, we need improved financial and other supports to individuals with intellectual disabilities and autism, and their families, through the federal tax and labour systems.”

In conclusion, issues of common concern to Canadians from coast to coast to coast need to be addressed through national coordination and with standards of service delivery that are consistent for all citizens, wherever they may live in this great country.

Autism is such a matter of common interest and national priority. Declaring April 2 of each year world autism awareness day would be a small but meaningful step in the direction of eventually, hopefully, creating an effective national approach to learning all we can about autism and providing the services children with autism and their families need, and this as early as possible.

World Autism Awareness Day Act
Private Members' Business

5:45 p.m.

Edmonton—Mill Woods—Beaumont
Alberta

Conservative

Mike Lake Parliamentary Secretary to the Minister of Industry

Mr. Speaker, today I am not going to get into a whole bunch of statistics and definitions. Instead I am going to talk about my own experience as the father of a now 16-year-old boy with autism, my son Jaden. Before I do that, though, I would like to extend some recognition.

First of all, I would like to thank Senator Munson for moving this important legislation forward in the first place. I would like to thank my good friend and colleague from Kitchener—Conestoga for sponsoring the bill in the House.

I would particularly like to thank the Minister of Health, who declared that as of April 2, 2009, each April 2 will be known as World Autism Awareness Day in Canada. That is an important step. That is what the bill addresses in legislation today.

I would also like to thank colleagues from all parties, who have been very supportive of my family. They have met Jaden and wanted to know more about the situation, know more about autism, so that they can be more informed as they go out into their own constituencies.

First and foremost, I want to thank my son Jaden, who is a tremendous example for me and obviously one of the most important people in my life.

I also want to thank my wife Debi and my daughter Jenae, who hold the fort down at home.

My daughter is now 13 years old. When she was four or five, she did a little interview with the autism newsletter. One of the things that she said is “I'm Jaden's little sister, but I'm like his big sister”. She went on to say that she had to protect him and keep him safe from things like permanent markers and hot stoves. At 13 years old, Jenae is still keeping Jaden safe.

My proudest moments as I think about my daughter are the moments when she does not know that we are watching. We hear her playing games with Jaden, interacting with him, keeping him out of harm's way or helping him because he is upset with something and trying to talk him through it. She is an amazing little big sister to him.

Why is autism awareness so important? It is important because early diagnosis is critical for people with autism. There is a short window of time when kids are young. We have more and more information about autism. There has been more and more research that shows that early treatment is absolutely essential for people with autism. In order to get that early treatment, we need doctors to be aware of the signs of autism, we need parents to be aware of them and we need the broader public to be aware of them.

Looking back in our own circumstance, when Jaden was 18 months old and knowing what we know now, we could have recognized the signs of autism had we been more aware, but even at the time, the doctors suggested that some boys just talk late, so they sent us for speech training and workshops and things like that.

It was six months later, after we had lost six months of that window, that we read a book about autism and recognized what we were dealing with. It was autism. A cousin mentioned it to us as well. It was six months later that we finally received a diagnosis. Thankfully, that delay does not happen as often today as it did over a decade ago, because people are more aware.

Another reason that awareness is so important is that families need support. I remember one particular circumstance when I was having a discussion about respite with someone who knew my son had autism but did not know what we dealt with on a daily basis. He asked me, “Why should the government provide a babysitter for your son?” It was one of those things that made me realize that people do not understand it the way we live it. They do not see the 24/7 stress that families are under, the constant need to be on high alert for fear of the child's safety or for the other kids.

Jaden is like a three- or four-year-old in a 16-year-old's body now. The difference from when he was three and four, though, is that he is much quicker and much stronger than he was. When he sees a dog across the street, he still has no concept of traffic, but he can get to that dog very quickly. If we are not paying constant attention to him when we are out, he will just run across the street if he sees a dog.

In fact, when we were on Parliament Hill a couple of years ago for Canada Day and a man was walking a German shepherd dog across the lawn, we had our eyes off Jaden for a second, and he bolted to this German shepherd. Before we had time to even think about it, he had grabbed the German shepherd by the neck and was sticking his face into the German shepherd's face.

It turned out that the man who was walking the German shepherd was a security guard and the German shepherd was a trained dog. The man happened to know Jaden and made sure he got in between so that the dog would not react to him, but we can imagine if it was some other dog; Jaden would have no awareness of that.

The same things apply in relation to water, traffic and those types of things. We have to be constantly vigilant that Jaden does not get himself into trouble because he sees those things like a three- or four-year-old would see them, not like a regular 16-year-old would see them.

We also need to be aware of the things they do see but maybe do not understand. A common story is that a child at six or seven years old looks like any other child, but when the child throws himself down in a grocery store or acts up in a restaurant, people wonder why the parents are not disciplining the child or doing something about it. There was a story of a family that got kicked out of a restaurant in Edmonton because of a situation like that. As families, we need people to understand that.

There are some funny stories that go along with that, and every family has their own. In my case, I remember one particular time when Jaden was about eight years old and we were walking through a parking lot. He walked up behind a lady who was walking on her own and grabbed her hand. Jaden was a very cute eight-year-old, and she thought it was very cute. Then he proceeded to take her fingernail and pick his teeth with it, at which point she was not thinking he was quite as cute any more and went running off with a little scream. There are moments like that.

There was the time that I was at an Oilers game. I worked for the Oilers before I was elected and decided to take Jaden to an Oilers game. He was probably in that same timeframe of six or seven years old at the time. We were sitting in the seats watching the game and everything was good. All of a sudden, out of the blue, he decided to reach over the shoulder of the five-year-old girl in front of him and grab the ice cream off of the top of her cone, stick it in his mouth and eat it straight out of his hand. It took a few seconds for me to explain to the father what was going on, and, as usual, he was good with it once he understood.

These are the things that happen, and we need people to understand.

When Jaden was 13 years old, just three years ago, he went through a time when he was experiencing an absolutely debilitating anxiety, a time that was very difficult for us as parents. There were times when he would go through two hours of absolute stress and anxiety. His body would get rigid, he was scared and he could not explain what was going on because he could not talk. We would just have to hold him and hope the anxiety subsided. It was a very difficult time for the family. Those are the things that people do not see, and sometimes family members need a break from those things. Families need people to understand what they are going through.

I notice, as always happens when I talk about my son, that time is slipping away quickly, so I am going to move on to a couple of other things that I want to talk about. I want to talk about people with autism contributing and give one more example from our family's life.

As people with autism get older, they can contribute in vocational things. In Jaden's case, he can work in the library. There are many who can contribute as artists or researchers or computer programmers.

Something that has happened recently in Jaden's life that has been really meaningful to us is that he is now in a regular grade 10 classroom, and his classmates chose to include him in a musical theatre production of Oliver that they were doing. These kids practised for dozens and dozens of hours as they got ready for this performance. One would think that they would be laser-focused on having the smoothest performance they could possibly have. The choreography was fantastic and took a lot of work to coordinate. However, instead, they invited Jaden to be a part of this process.

There was a scene of Jaden dancing a little off the beat from the rest of the kids, from time to time meandering a bit to the side of the stage and wandering off. One of his friends grabbed his elbow and brought him back to the rest of the group so that he could continue to participate. They worked hours helping him to understand what the steps were and to include him in what they were doing.

I cannot say how much it meant to my family and Jaden that they included him, but also how much it meant to those kids in the end, who really benefited from learning that important life lesson at that stage in their lives, a life lesson that will move them to include people in employment in the future and to look for opportunities for people like Jaden to contribute throughout their lives.

I will conclude by recognizing all of the people who have autism themselves, as well as their family members and friends who live with this disorder each and every day of the year. I want to let them know how much I admire them for their perseverance and for what they contribute to make the lives of those around them better. God bless them.

World Autism Awareness Day Act
Private Members' Business

5:55 p.m.

NDP

Matthew Kellway 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.

World Autism Awareness Day Act
Private Members' Business

6:05 p.m.

NDP

Matthew Dubé Chambly—Borduas, QC

Mr. Speaker, I am pleased to rise in this House in support of Bill S-206.

On a personal note, I too would like to commend the Parliamentary Secretary to the Minister of Industry for sharing his personal experience. I think stories like those are rather exceptional, especially for someone like me who has never had this personal experience. I want to commend the hon. member and wish him well.

It is exactly this type of situation that makes a seemingly symbolic gesture so important because, like many mental or brain-related illnesses, there are many unknowns. Increasing public awareness gives us the opportunity to do more research and more work to help the friends and family of individuals with autism. Their family members become their caregivers for their entire lives. It is not like other situations where people become ill at a certain age and their family needs to care for them at that stage. In this case, we are talking about children whose families want to watch them grow like any other child in this world and in our community.

I would like to take a more personal approach to this topic by looking at the work of Emergo, which is located in my riding. This organization is very well known in Quebec and provides respite services. One of their summer respite camps is located in my riding of Chambly—Borduas, in Otterburn Park.

A very long time ago, when I was in elementary school, I had the opportunity to visit this camp because Emergo shares this land with the public. The elementary school I went to had rented part of the camp for us to celebrate the end of the school year. It was in Les Bosquets. That was my first experience meeting kids with autism. It really opened my eyes, because I saw people and the organization working with them. Even at a young age—I do not want to delude myself by saying that I understood the complexity of the issue—I thought it was something special to see. That really helped me much later when I became the member of Parliament for the region. I was able to return to Les Bosquets and visit this organization, this time to work with them and help them with their work.

The respite service they offer gives parents and family members of children with autism the opportunity to take some time off in the summer because caring for an autistic child is a major challenge. As I said at the beginning of my speech, we can never truly understand what parents and families in this situation are going through. We can never understand and speak on their behalf because this is such a unique challenge. Emergo is one of the organizations that has the courage and conviction to help these people, and the work it does is very important.

When I had a chance to meet with representatives of the organization, they had a lot to say about their efforts to raise awareness. During the most recent election campaign in Quebec, people were very interested in the interviews with the political party leaders on Tout le monde en parle. During one episode featuring an interview with a party leader, there was another guest, Roxanne Héroux, a former LCN reporter, who has two autistic children. She had a lot to say about the importance of community, family, parents and others working together, raising awareness among themselves and supporting people who are coping with these problems.

She talked not only about autism, but about all kinds of problems and crises that families may go through with their children. It was extremely touching as testimony to this experience and a powerful interview. When I talked about the interview with people from Emergo, they said it was very interesting that I was touched by this interview, because this demonstrated to me just how much more awareness is needed among the general public so that we can provide those affected with the help they need. There is nothing glamourous about Emergo's work. Unfortunately, it gets very little recognition in the community. This is not because of bad faith, or because the community does not want to recognize that work.

It is primarily because people are simply not aware of everything that goes on or the various services that are available. The very fact that people are unaware undermines Emergo's work, because it makes it difficult for that organization to secure funding.

I must say very sincerely that I would not dare play politics with this. In my opinion, the funding problem is not necessarily the problem of any one level of government or any one political party. I think this is a collective problem that we must all face together.

People do not understand, and it is the responsibility of parliamentarians, the members who represent various communities, to educate them. That is the purpose of this bill. Members from all political parties realize that this is merely a first step, but it is an important step, because it opens such an important dialogue.

April 2 is already recognized as World Autism Awareness Day elsewhere around the world. I think it is very important that we follow suit and do the same here in Canada. Some degree of coherence and consistency is needed in the message in order to continue this work.

I would like to talk about another very personal example, one not necessarily related to autism. However, it relates to caregivers, who face similar challenges. I spoke a little about this when I talked about a Liberal colleague's bill to establish a national epilepsy day, which was also intended to promote awareness.

I do not want to make too many comparisons because, as I said earlier, I plead ignorance. I do not know very much about the two disorders. I have heard from caregivers and families who courageously deal with these challenges. I am going to share these stories because, although they unfortunately show how little I know about these challenges, they are the reason why I support the bill.

I will not name the man in question, to protect his privacy. I met this man just before Christmas, during the holidays, when I was grocery shopping in my riding. It is sad that it was at that time of year. This man is a family friend. He told me that his wife had suffered from a malignant brain tumour at the end of her life and that he had become her caregiver. He had to take care of her at the end of her life. It was very difficult because brain cancer can affect “normal” life in different ways. The word “normal” is in quotes because it not the right word in this case.

What society considers to be normal behaviour is not the norm. In my opinion, a parallel can be drawn with the situation we are discussing today. Once again, I am being very careful. I am not saying that these are not normal behaviours, but those are “society's rules”.

The man in my example said that it was a very trying experience. What I want to bring to the debate today is that the man told me he did not blame any political party or ideology. The issue is that there is a certain lack of understanding behind our way of proceeding.

Such occasions allow people to rally behind a non-partisan issue and make an initial symbolic gesture in order to improve our understanding in the hope of providing better assistance. That is what our society does best.

That is why I am very pleased to support this bill. This is not an issue that I fully understand, but I commend the work of Emergo, an organization that does so much for my riding and with which I want to continue working. I am committed to continue supporting it and to continue supporting, in a broader sense, my colleagues who will introduce similar bills. This is a very important issue.

I also want to take this opportunity to commend my colleague opposite, who lives with this situation, and all Canadians going through this experience, this challenge, in the shadows. I commend their courage and I want to thank Senator Munson and the hon. member who introduced this bill in the House.

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 6:15 p.m.

NDP

Dany Morin Chicoutimi—Le Fjord, QC

Mr. Speaker, before beginning my speech, I would like to thank my NDP colleague from Chambly—Borduas for sharing with us this very touching story, this very heartbreaking story, about people living in this kind of situation. As a member of the Standing Committee on Health, I would like to tell them that the New Democratic team is working hard on the committee to ensure that the government provides greater assistance to informal caregivers through a tax credit or a tax benefit that will help low-income families and lower middle class families. We have to help families that are taking care of their loved ones, the members of their family.

Clearly, the government can do something. The government must demonstrate leadership in this area. I do not see any leadership by the Conservatives today. However, I am optimistic that they will increase the assistance available to families who are taking care of their loved ones.

To begin my speech officially, I would like to mention the fact that Bill S-206 will officially designate April 2 as world autism awareness day. This awareness day will increase awareness among Canadians of the challenges faced by autistic individuals and the importance of improving their opportunities and the treatments for autism.

Organizations such as the Autism Society Canada and the United Nations already mark this very special day.

For those who may perhaps be less familiar with autism, I will provide a summary of it. Autism is the most common neurological disorder among children. Many people do not know this, but it truly is the most frequently occurring neurological disorder affecting children. It affects millions of Canadian families, because one child in 110 is affected by some type of autism. There are many different types of autism that I will not describe in detail. I do not think this would be relevant to the type of discussion we want to have today concerning world autism awareness day.

Autism disturbs the brain's operation. Consequently, it is characterized by abnormal social interaction and communication, as well as by restricted and repetitive behaviours.

Autism is also referred to as autism spectrum disorder. I just want to clarify that these terms are used interchangeably. This disorder affects all aspects of childhood development and the symptoms usually appear during the first three years of life. It can manifest itself a little later than that, but usually it is within the first three years. It is the parents, who spend most of their time with their children, who notice that their child may be a little different than the others developmentally speaking. Just because a child is different does not necessarily mean that he or she has autism spectrum disorder, but it is a good indicator for parents. They must pay special attention to the situation and to the development of their child because he or she could be autistic.

As I mentioned, the symptoms usually appear in the first three years. The seriousness of the disorder, the number and type of symptoms, the age at which the disorder manifests itself, the level of functionality and the challenges posed by social interaction vary greatly from one person to the next. Science has not yet determined an exact cause of autism. It is still a grey area. Research is placing a particular emphasis on genetic, biological and environmental factors, but that is still a lot of ground to cover.

It is also important for all levels of government to support research to determine the real causes of autism spectrum disorder. It would be great news for families and their children if we were eventually able to prevent the disease in one way or another as a result of medical advances. If we cannot prevent the disease, we must at least help these families to live with the disorder. I think that would be very much appreciated by our society.

There are approximately 35 million autistic people worldwide. In Canada, although epidemiological details are rare, approximately 48,000 children and 144,000 adults live with one form or another of the disease.

It is quite possible that people in your neighbourhood, or in your surrounding area, are living with an autism spectrum disorder and so are their family members. This demonstrates to what extent it is prevalent in our society and why we must act.

These figures do not take into account the millions of parents, family members, health care providers, employers, teachers, researchers, and other people who have to manage this kind of situation and help these people.

The NDP is in favour of having a day dedicated to recognizing autism and its impact on Canadian families. However, the NDP is calling for concrete measures to be taken. NDP members have introduced bills in an effort to move forward. I am referring to my colleagues from Sudbury and Vancouver Kingsway.

The NDP will support World Autism Awareness Day, but I hope that the government will move forward in the future, and will do more to support families and people living with autism spectrum disorder.

World Autism Awareness Day Act
Private Members' Business

6:25 p.m.

Conservative

The Speaker Andrew Scheer

I will now go to the member for Kitchener--Conestoga for his five-minute right of reply.

World Autism Awareness Day Act
Private Members' Business

6:25 p.m.

Conservative

Harold Albrecht Kitchener—Conestoga, ON

Mr. Speaker, it is a privilege to rise once again to encourage the House to support autism awareness, to support a world autism awareness day and to support Bill S-206, legislation raised by my colleague, Senator Munson, in the other place.

There are many reasons to raise awareness of this condition. In my opening comments I noted the benefits of early diagnosis, of proper surveillance and that autism spectrum disorders, or ASD, is the third most commonly reported chronic condition among children under the age of 4.

I also reminded the House of actions our Conservative government has already taken in this area. I praised the efforts of early diagnosis and early intervention and I asked that we not forget teens and adults with autism as we focus our attention on children.

In that speech, I also said though:

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.

To me, that is the most important benefit of establishing and recognizing world autism awareness day, breaking the stigma.

In my research, I found a blog entry by Julie Cole, an entrepreneur and a mother of a child with autism, who shared how even everyday well-meaning comments can be hurtful. She prefaced by saying “If you’re curious about what common and harmless things you are saying that make my ears bleed, here goes:”.

One such comment came from expectant mothers, “All I want is a healthy baby”. I will share Ms. Cole's response. She said:

...It makes sense to me - health is the most important gift we can ask for. But, bring out my psycho sidekick self and you want to know what it hears? It hears that the very last thing you want is a child like mine. I know that’s not really what’s being said, but it’s what the little friend in my head is hearing!

Another very innocent comment that caused her pain was obviously meant as a compliment, “He's lucky to have you.” Once again, Ms. Cole's response is heartfelt and honest. She said:

The thing is, I’m lucky to have him. When I hear how fortunate he is to have me, it makes me feel like you see him as a burden. Please remember, I feel like I picked a four-leaf clover on the morning of his birth.

A four-leaf clover: I view each of my children and each of my nine grandchildren the same way, and I am sure all parents do.

The question is why Canadians would assume that other parents could view their child differently. That assumption is not based on Canadians' understanding of autism. That assumption is based on ignorance.

The recognition of world autism awareness day will increase our understanding, reduce our ignorance and lead to better outcomes for our society in general.

As Ms. Cole, the member for Edmonton—Mill Woods—Beaumont and other parents of children with ASD would all attest, the diagnosis brings many challenges. My colleague has spoken about these eloquently in the House several times and again tonight.

I truly appreciate the greater understanding I have gained of ASD since being elected to represent the good people of Kitchener--Conestoga. I am especially grateful to the member for Edmonton—Mill Woods—Beaumont for sharing his experience with me through debates in the House and especially for introducing me to his son Jaden.

I am grateful to people like Julie Cole, parents who are willing to speak from their heart publicly about their experiences to help break down the stigma surrounding autism spectrum disorders.

I humbly ask the House to stand with Canadians like these to promote awareness of autism and to formally designate April 2 of each year as world autism awareness day.

As I said yesterday in comments on another topic altogether, often the most important role members of the House can play is as leaders of conversation. Bill S-206 provides the House with the opportunity to lead a national conversation on a subject that desperately requires more dialogue.

I ask all hon. members to vote in favour of Bill S-206.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Conservative

The Speaker Andrew Scheer

The time provided for debate has expired. Accordingly, the question is on the motion. Is it the pleasure of the House to adopt the motion.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Some hon. members

Agreed.

No.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Conservative

The Speaker Andrew Scheer

All those in favour of the motion will please say yea.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Some hon. members

Yea.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Conservative

The Speaker Andrew Scheer

All those opposed will please say nay.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Some hon. members

Nay.

World Autism Awareness Day Act
Private Members' Business

6:30 p.m.

Conservative

The Speaker Andrew Scheer

In my opinion the yeas have it.

And five or more members having risen:

Pursuant to Standing Order 93, the recorded division on the motion stands deferred until Wednesday, June 20, immediately before the time provided for private members' business.