Bill S-206 (Historical)

World Autism Awareness Day Act

An Act respecting World Autism Awareness Day

World Autism Awareness Day Act

[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.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

Mr. Speaker, World Autism Awareness Day is a step in the right direction, but I think other steps must follow in terms of funding and awareness.

I would like to know whether my colleague believes the two bills introduced by the hon. member for Sudbury, namely Bill C-218—which would ensure that the cost of applied behavioural analysis and intensive behavioural intervention for autistic persons is covered by the health care insurance plan of every province—and Bill C-219—which provides for the establishment of a national strategy in order to coordinate service delivery for autistic persons—are steps in the right direction to continue the work being done on this disease. I would also like to know whether he then intends to recommend to his Conservative colleagues that they support these two private member's bills.

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

Mr. Speaker, I admit that I am not intimately familiar with the bills that my colleague is referring to. However, let me say that our intention in promoting this bill is to create and increase awareness surrounding autism and the challenges that it causes.

If there are issues that are included in the bills that have been referenced that relate to provincial authority, obviously the federal government cannot mandate to the provinces how they would implement their care for autism or its needs. Further, as members will know, a private member's bill cannot commit the government to the additional expenditure of funds. But as it relates to a national framework or a national strategy, there are ways that this could be implemented within the health department. I would certainly like to look at that further before I would commit myself either way.

[Dominic LeBlanc, Liberal, Beauséjour, NB]

Mr. Speaker, I commend my colleague for his speech and for taking the important initiative to bring this bill before the House of Commons. Senator Munson has often talked about the importance of this issue. I hope the House will support this initiative.

I just have one question. I am wondering if our colleague has reflected on it in preparing to introduce this bill. Although anecdotal and not based on any scientific information, I have the sense that there is an increase in the number of cases where autism has been diagnosed. In New Brunswick, three or four of my friends have children who have been diagnosed with Asperger syndrome or autism spectrum disorder. Is my colleague of the view that it is because there is a greater awareness and more medical research? Or are there reasons to think that the number of people being diagnosed is increasing, and there might be other factors leading to an increase of this very difficult condition?

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

Mr. Speaker, I certainly am no expert in terms of increases that have occurred. As I mentioned in my speech though, back in 1978, which was not that long ago, honestly, I did not even know what autism meant. Here we are a few years later, and we have so much more information on it.

Obviously, there are a couple of factors at play. There may in fact be an increase in the number of incidences of autism. That is probably true. I think another factor that often comes into play, not just with autism, but with many of the medical issues that we face today, is that we have far better diagnostic tools. Our medical practitioners are more aware of these early signs and can actually help us identify earlier. Therefore, there is probably a two pronged answer to that question.

I do not profess to be an expert on autism. I think part of our job here as parliamentarians is not to be medical experts but to get the medical experts to the table and to raise awareness with the public, so that we as individual members, and Canadians, are more aware of the challenges that families who are dealing with this are facing on a daily basis.

[Blaine Calkins, Conservative, Wetaskiwin, AB]

Mr. Speaker, I want to thank my colleague from Kitchener--Conestoga for bringing this issue forward. He is the epitome of what members of Parliament should be. When people back home look at the House, he has always conducted himself with dignity and grace in the execution of his duties. I thank him for his continued service to the people he represents and, obviously, for the service he is providing here for all Canadians.

He had an eloquent speech. What was his personal inspiration in choosing this as part of his private member's business? Could he enlighten the House on any groups or agencies that have contacted him and supported him that would help further my ability to research this particular issue in my support of my colleague?

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

Mr. Speaker, I thank my colleague for his very kind remarks.

I stated in the outset of my speech today that this initiative owes its momentum to the work of Senator Munson in the other place. It is his work that has brought this bill to the attention of the House on a number of occasions. I was more than pleased to be the sponsor here in the House of Commons.

Every member of Parliament has the honour of presenting a private member's bill. In addition, they have up to one Senate bill that they can sponsor in the House. When I was approached to take this on, it was an honour for me to do it. To be honest, that is partly because of my connection with my colleague, the member for Edmonton—Mill Woods—Beaumont.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

Mr. Speaker, it is a pleasure for me to speak about this particular issue. When the debate centres on health issues or a bill concerning a health issue, it is always a wonderful opportunity for me, as a nurse, to speak in the House on the subject. We must understand that, unfortunately, autism is a widespread and common condition, a grave condition not only for the person affected, but also for the family and friends of the individual. It is an illness that unfortunately has no cure.

It is a neurological disorder that affects millions of Canadian families, especially children. Autism affects how the brain works and results in behavioural disorders that are more or less severe, depending on the case, an inability to have normal social interactions and communication, and repetitive and very structured behaviours. Symptoms vary in severity from one person to the next and can change over time. There can be a small to moderate improvement depending on the behavioural therapy and assistance provided to the child from a young age, although the symptoms never go away.

It is estimated that 1 in 100 children is affected, which makes autism the most common neurological illness in children. It is more prevalent than childhood cancer, AIDS and diabetes combined. It is estimated that autism affects 35 million people around the world. In Canada, 48,000 children and 144,000 adults have autism. If we factor in family members, friends and people in the circle of those affected, the number of Canadians who have to cope with the consequences of this condition on a daily basis is very high.

At present, we do not know what causes autism, even though some factors or statistical congruences point to certain things. The research is focusing on certain genetic, biological and environmental factors. However, to date, researchers have been unable to determine the causes with certainty or ascertain whether there is a way to treat or prevent this condition. Thus, it truly is an important Canadian health issue and it should definitely be a major national concern.

The symptoms include the lack or absence of socialization and communication. This is manifested in trouble communicating and delayed development of language, which can be more or less serious depending on the severity of symptoms. It should be understood that autistic children are not like other children. Autistic children will not understand other children. They will not understand their interests. They will not understand their behaviour, their games. It is very difficult for autistic children to interact with other children because they do not understand them.

There are also other symptoms. In fact, these children can have severe crises, become agitated, go silent, and act in ways that are incomprehensible to everyone but themselves. It makes family and social life very difficult.

Here is a concrete example. When a 3 year-old child has a severe crisis and becomes violent, the parents are able to cope. However, when a young man of 16, weighing 250 pounds, has a crisis and his mother intervenes, it is much more serious. Parents sometimes get hurt. The child injures the parent, and the parent does not understand why. This has a major impact on families. I wanted to share this concrete example because I believe it is important to understand what parents go through.

There is another important point that needs to be made. Most children without autism—normal children, if I can call them that—do not understand autistic children or the way they behave. It is very hard for them to understand why the next door neighbour, their friend, behaves in a particular way. Consequently, most children are not inclined to socialize with autistic children. This is but another example of a breakdown in the autistic child’s ability to socialize, communicate and interact.

I have spoken about the implications of having an autistic child and how difficult it is for families to cope. Consequently, these families tend to isolate themselves.

Communication with the outside world is almost nonexistent because everything has to be managed to the nth degree. It involves constant care and the parents have a lot of trouble coping. Parents often tend to live in a little bubble. There is so much to do at home that they do not have time to see their friends, to unwind and to think of other things. Their life tends to revolve around the illness.

When the diagnosis is made, the family’s life changes forevermore. When the pediatrician, psychologist or psychiatrist assessing the child diagnoses her with autism, it is understood that the child will have to be looked after for the rest of her life. Even when the child reaches adulthood, she will still require help and support. A family member will have to provide care for the rest of the autistic person's life. This places a huge burden on families.

Let me give a concrete example. When a child starts yelling and flailing about at the supermarket, or when a parent wants to take a child shopping, or to a friend's place, or to see the doctor, and the child throws a tantrum, the parent does something about it. Usually, after one or two attempts—if the parents are capable—the situation is resolved and the child has understood. It is not like that with an autistic child. The crises are unpredictable, and it is impossible to know when they will occur. Moreover, they could occur anywhere.

No one within earshot understands what is going on, nor do they understand why the child is acting out. To outsiders, it seems that the parent of an autistic child has no control and no idea what to do with the child. It is extremely hard to cope with these kinds of situations. Every outing is an adventure and it is impossible to know how the child is going to behave. Everything must be planned to the nth degree. Playing things by ear is not an option; everything must be structured to ensure the best possible outcomes and the least negative consequences for the child. It is extremely hard to find that structure, hence parents' social isolation.

In most cases, when both parents work, life becomes virtually unmanageable. One parent has to stop working and look after the child because it is too big a task. It is no secret that looking after an autistic child requires very specific skills. Unfortunately, I do not think that caregivers are breaking down the doors to go and help the parents of autistic children, because it is really difficult.

The implications for parents, brothers and sisters include burnout, a feeling of isolation, and uncertainty about the future of the child. They have no idea whether the child will be capable of performing a particular task or if the child will one day enjoy some degree of autonomy. There is also a form of discrimination insofar as the other children do not receive the same attention. Things can get really tough, and some parents even commit suicide or attempt to do so. Looking after an autistic child is no mean feat.

This bill proposes a World Autism Awareness Day. No one will vote against the bill because it is a good piece of legislation. It must be passed. Even if the World Autism Awareness Day is instituted, we must go further and take action to encourage research, access to care, support, financial, psychological and family assistance, as well as education and work life skills for people living with autism.

I would ask people to not make do with simply passing this bill. We need to walk the talk and take serious steps to truly relieve what I believe is an excessive burden on families.

I call on my colleagues to support this bill and to follow up with action.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Mr. Speaker, I am pleased to speak in support of this private member's bill by the member for Kitchener—Conestoga. Here I would also refer to the fact that the bill originated in the other place and was brought forward by Senator Jim Munson.

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139 that would recognize April 2 of each year as World Autism Awareness Day. One hundred and ninety-two United Nations representatives agreed that World Autism Awareness Day would draw the attention of people around the world to this neurological disorder.

As we have heard colleagues say, much about the disorder is a mystery to the general public. Any way to raise awareness and understanding of the disorder, the developmental disabilities and the behavioural issues that occur with this disorder, is going to be very important.

We do know that 1 in 150 Canadian children is diagnosed with some form of the autism spectrum disorder. The number of new cases, we think, is increasing anywhere from 10% to 17% a year. Boys are four times more susceptible than girls.

Autism spectrum disorder is a neurological disorder resulting in a developmental disability that affects communication, social understanding, behaviour, activities and interests. As with any spectrum disorder, we are looking at a range from mild to severe and moderate or in-between levels. We are talking about very different levels of issues and problems with these young children.

It is the most common neurological disorder among children. There is no cure, but there are methods of dealing with the disorder through recognition of early symptoms and getting testing done. We know that it can be recognized in children as young as six to twelve months old.

Once a child is diagnosed, it is important to get the necessary health team in place. This is a complex team made up of physicians, specialists, therapists, psychologists and teachers who are trained to understand the complexity of autism.

One problem that we have in Canada, which we must raise awareness about, is the unequal access across the country to spectrum disorder care. Some provinces provide it but some do not. There is an inability to deal with this issue across the country in a similar way. Here we know that Canada Health Act tells us that we need to have accessibility no matter where one lives and regardless of one's ability to pay. Therefore, it is unacceptable that Canadians do not have the same access to care regardless of where they live and regardless of their socio-economic status.

While we know that many people can afford to pay for the care, to get the teachers and to pay for the psychologists, we also know that in some instances the problem is the following. The Canada Health Act deals with physicians and hospitals, but because many children with autism spectrum disorder do not have to be in a hospital or do not have to be treated by a physician only, psychologists, therapists, or other kinds of help not covered under medicare or the Canada Health Act are not paid by medicare and people then have to pay out of their pockets. There are many families who cannot afford this. Therefore, the ability to have access to care based on the ability to pay is a real problem for many of these families.

The Autism Society of Canada is calling on the federal government to take a leadership role. What we see here today is a private member's bill that speaks to the issue of a day of awareness.

Awareness is not enough; we need to know what that awareness will lead to. As soon as we are aware of something in the country, especially something that deals with children, we need to think of the fact that Canada is a signatory to the United Nations Convention on the Rights of the Child and that children should have the right to access the care they need when they need it. Recognizing and being aware of the day will lead us into thinking what we are going to do about it. How will the federal government take a leadership role in coordination across the country so we do not have a disparity in terms of people's ability to access care based on the province they are living in?

Among the things that the Autism Society of Canada is suggesting is that we increase funding for provinces and territories to provide critical treatment as defined under the Canada Health Act, even though many of the caregivers are not actually defined within the Canada Health Act, and that we also provide education, professional training and the required supports for Canadians with autism spectrum disorder.

The Public Health Agency of Canada, as we heard earlier, is going to look at this from a national pan-Canadian priority. It will look at surveillance, reporting and how we gather data. Do we know for sure that there is an increase of 10% to 17%? Are we diagnosing appropriately? Are we able to track how many people have been diagnosed or missed because they happen to be on the mild end of the spectrum disorder? This is the kind of information we need to gather. This is something the Public Health Agency of Canada can do, not only surveillance and reporting but setting national standards for treatment, such as what constitutes treatment for this disorder and how we deliver the services appropriately to children across the country.

We need to look therefore at allocating significant funds targeted for autism spectrum disorder research and to find out more about how the Canadian Institutes of Health Research can determine cause, early detection and ways to deal with treatment. As we have heard, improving financial and other supports to individuals is key. A lot of this is not covered under the Canada Health Act. Caregivers are not covered under the act. This is part of what we have talked about with the Canada health accord: how we expand the way we care for people with chronic disease; and how we manage these diseases so people have the ability to live with dignity within our society and be given the best opportunities to realize their potential. This is a core piece of what we are talking about.

We need to look at ways to improve financial and other supports to individuals who cannot afford it, especially through the federal tax and labour systems. As we know, for many families, one parent has to stay at home, give up a job and the family loses a significant amount of income. Therefore, we need to look at that kind of assistance. In many instances, even if one parent can can stay at home to look after a child, there will be stress on that family member and there will be a need for some kind of respite care. We need to look at that kind of built-in way of helping families cope.

One thing we need to talk about is how to develop a national strategy on autism spectrum disorder. This bill seeks to raise awareness and understanding, especially among children of this disorder. As they see their playmates or those who should be their playmates behaving in a very disruptive manner or strangely sometimes, young kids need to understand. We have seen this happen in the past. We have helped young children understand persons with other physical and mental disabilities. People now take for granted young people with other mental disabilities being in their classrooms. They learn to live with them, understand them, make allowances for them and bring them into the system of education and care.

What we hope to try to do in many ways is normalize and integrate young children into society with this disorder. Helping kids understand the behaviour of other kids is a key part of it, as well as training teachers and helping them understand early diagnosis and helping parents learn what to look for in a young child and to pick it up very early.

Given that all members of the House seem to support this private member's bill, we need to do what is required, which is better screening, early intervention, accurate and timely diagnosis, equal access to care across Canada, educational needs and supporting adults and seniors with ASD and their caregivers.

[Lois Brown, Conservative, Parliamentary Secretary to the Minister of International Cooperation]

Mr. Speaker, today I rise before hon. members to discuss a health issue of great importance to Canadian families, autism spectrum disorder, or ASD. This is an issue that affects individuals and families across Canada, regardless of social or economic circumstances. ASD is a lifelong challenge for those who have it and for their caregivers.

The range of autistic disorders fall on a spectrum, with symptoms ranging from mild to severe. These symptoms often include repetitive behaviour and difficulties with social interaction, communication and learning. There is no standard type or typical person with ASD. Each one is unique. It is important to also realize that because they are at different places on the spectrum, individuals with autism vary widely in their needs, skills and abilities.

In recent years, our knowledge about ASD has increased tremendously. For instance, we now understand the importance of early intervention, treatment and support. While diagnosis remains a challenge because of the complexity and range of autism disorders, research in early diagnostic tools has improved and has shed light on the first signs of autism.

Currently, most children with ASD are diagnosed within the first three years of life. However, because symptoms vary along the spectrum and between individuals, some children, such as those with Asperger Syndrome, are often not diagnosed until they reach school age.

It is clear that autism spectrum disorder is an especially complex topic, with multiple causes, varying effects and ripples of impact that spread through our society. To date, significant research has been done to determine the origins of ASD. There has been a great deal of meaningful progress, but there remains much that we cannot yet explain. More research is needed to gain a better understanding of this complicated condition, and we need to understand the rates and trends of these conditions.

That is why our government is taking action. We are working to improve scientific understanding of autism, to enhance surveillance of all ASDs in Canada, to accelerate the translation of new knowledge into better treatments and care and to raise awareness and public understanding of ASD.

To begin with, we recognize that strengthening the knowledge base is the first essential step. We need to improve our understanding of autism so we can know how it is caused, how it affects the individual and the relative effects of different treatments. Building this understanding makes it possible for people with autism to get the best care possible based on the latest evidence. It also helps those with autism to make the most informed choices.

Recognizing the need for more information on autism and its causes, the Government of Canada supports a number of activities to promote the enhancement of knowledge and to build awareness and understanding of disorders such as autism.

Through the Public Health Agency of Canada, we are developing a national surveillance system to collect basic data to better understand how many Canadians are living with ASDs. This system will support policy and program development, as well as research.

This government is also encouraging high-quality scientific research, while supporting the sharing of best practices and communication among partners, stakeholders and the population at large. Activities in this regard will improve our knowledge about autism to ensure that future action by provincial and territorial governments, caregivers and families will be well informed.

With respect to scientific health research, the Government of Canada has made significant investments in autism-focused research projects through the Canadian Institutes of Health Research, the CIHR.

One of CIHR's main priorities, as stated in CIHR's current strategic plan, is to promote health and to reduce the burden of chronic disease and mental illness. Autism-related research is an important component of CIHR's work on this priority.

The Canadian Institutes of Health Research has invested $39.5 million to autism-related research since 2000.

Work in the area of autism spectrum disorder at the CIHR is led by one of its 13 institutes, the Institute of Neurosciences, Mental Health and Addiction. This institute leads efforts to support autism-related research and is working with partners in the autism community to set research priorities and coordinate action. The institute also works to accelerate the speed at which knowledge is translated into improved help for those Canadians with autism and their families.

I would like to take this opportunity to highlight some of the groundbreaking projects this government is supporting.

An excellent example is CIHR-funded research led by Dr. Susan Bryson, Dr. Eric Fombonne, and Dr. Peter Szatmari at McMaster University. These dedicated researchers are working to understand the different development pathways followed by children with autism spectrum disorder. They also seek to identify predictors of good outcomes.

The answers to the questions they are investigating can be used to develop new intervention programs. That means better lives for those living with autism and their families. This project has the potential to fill important evidence gaps on the developmental pathways and treatment of children with ASD.

In Halifax, the IWK Health Centre, another CIHR-funded study is investigating the effectiveness of early intervention behavioural intervention programs for children with autism. Led by Dr. Isabel Smith, this research promises Canadians much needed information that will guide policy and facilitate more effective service delivery.

At York University, Dr. Adrienne Perry and her team are conducting studies to address outstanding questions regarding outcomes for children with severe development disabilities, including autism, and their families.

The study titled, “Great Outcomes for Kids Impacted by Severe Development Disabilities”, is funded under CIHR's emerging team grant program for a three year period. The answers to these researchers' questions will have important implications for policy and service allocation.

These are three examples of excellent projects with the promise for concrete improvement to the lives of Canadians living with autism. These are important endeavours. They serve to advance current autism research in Canada, to build international collaboration and to strengthen autism research capacity for today and tomorrow.

Additional investments are targeted at encouraging the translation of research findings into better health services and health outcomes. While this is achieved to some degree through funding for ASD research, CIHR programs also support research on health services and knowledge translation more generally.

For example, CIHR's Institute of Health Services and Policy Research is designed to advance research and knowledge translation initiatives to improve the way health care services are organized, regulated, managed, financed, paid for, used and delivered. In this way, new information resulting from research can be translated into improved health and quality of life for all Canadians.

Furthermore, CIHR has worked with Health Canada and with the Public Health Agency of Canada to support the dissemination of autism information. An early example of these efforts is the National Autism Research Symposium.

The purpose of the symposium was to provide an opportunity for governments, community members, researchers and those affected by autism spectrum disorder to network and identify gaps in the available scientific evidence. Identifying the missing pieces is the first step toward developing evidence-based treatment.

The symposium served an important role of building linkages between different stakeholders and became the road map for many of the actions on ASD that I am discussing today.

As I mentioned earlier, increasing the knowledge base and accelerating the translation of new knowledge into better treatments and care is only part of our efforts. We also need to increase awareness of this challenging health issue.

To this end, in 2009 the Minister of Health declared that Canada would join jurisdictions around the world in recognizing April 2 as World Autism Awareness Day. In doing so, our government made a lasting contribution to ensuring that Canadians were aware of the struggle faced by those affected by autism. In addition, October is internationally recognized as Autism Awareness Month.

I am thankful for the opportunity to speak to this complex issue. I would also like to express thanks to the hon. members of the other place for their support on these measures.

[Sana Hassainia, NDP, Verchères—Les Patriotes, QC]

Mr. Speaker, I am pleased to rise in the House today to salute this initiative, which has been brought forward again by our distinguished colleague, the hon. member for Sackville—Eastern Shore. He first introduced a bill on World Autism Awareness Day in 2005. Six long years later, it looks as though people with autism and the families of children with autism spectrum disorder will finally get the recognition they so greatly deserve.

For interest groups working in the field, an annual day would be a date around which activities could be organized and would provide the groups with the motivation to focus their efforts around a day to work with parents and people with autism spectrum disorder.

Autism is the most common brain disorder among children since one in every 110 children has some form of autism. There are an estimated 35 million people living with autism throughout the world. Although detailed epidemiological data are rare, in Canada, approximately 48,000 children and 144,000 adults suffer from some form of the disorder. Furthermore, the rate of autism has increased each year for no apparent reason. It is estimated that the rate of autism increased by 600% over the past 20 years.

It is important to understand the reasons behind this dramatic growth, but it is also important to help Canadians gain a better understanding of autism. There are a number of types of autism but, generally speaking, autistic disorders are marked by difficulty with social interaction. Some forms of autism do not completely limit the individual's ability to interact with others; however, other forms of the disorder cause individuals to show no interest whatsoever in other people.

People with autism generally have a great deal of difficulty engaging in and maintaining a conversation. The disorder makes communication extremely difficult. Forty per cent of autistic children will not learn to speak without intensive and early intervention. This type of intervention requires resources that must be made available to the families that need them. Unfortunately, the government is doing almost nothing to help people with autism. The recognition of World Autism Awareness Day is important, but it is really just the beginning.

Members on this side of the House have suggested numerous measures to support families that are already making countless sacrifices for a relative with autism. For example, the treatments that autistic individuals depend on to promote their social development should be covered by public health insurance. These treatments can have a significant impact on the lives of individuals with an autistic disorder. Countless experts have said that if autism is diagnosed early enough—before the age of two—and if the family has the necessary tools to support the child, the child may be able to attend school normally without requiring special assistance.

Such measures can have a significant impact, and that is why the government should develop a national strategy to coordinate services for people with autism. Canadian families affected by autism living in different parts of the country do not all have the same access to health and social services. Currently, there is no comprehensive national strategy to help Canadians with autism. As a result, help for people with autism is available primarily from provincial governments, health promotion organizations and families.

Some people with autism function relatively well and are independent, while others need substantial social and educational support. For years, the Conservatives have failed to show leadership on a number of important health issues, including funding for autism research and services in that area. Rather than have an awareness day, why not implement a national strategy to offer more help to people with autism and their families?

Government support for World Autism Awareness Day does not give provincial governments any funding to carry out effective, evidence-based preschool interventions, to provide autism training to teachers and teacher aides, or to provide appropriate residences and treatments for young people and adults with autism.

Frankly, I am disappointed that this is not the first time we have had to rise in the House to talk about an issue that we all seem to agree on. This bill has been introduced and reintroduced repeatedly since 2005. Maybe it is just because I am new here, but am I the only one who finds it odd that a bill everyone agrees on has to be debated for six years before seeing the light of day?

I understand that the procedure is what it is, that we have had consecutive minority governments in this House, and that a bill must pass through several steps before it becomes law. However, should it really take six years just to give the parents of autistic children and people with autism spectrum disorder the recognition they deserve, if only for one day a year?

This government has no problem rushing through a bill to spend billions of dollars to toss young offenders in prison, no matter how minor the crime. This government wastes no time destroying the data from the firearms registry, ignoring the interests of Quebec taxpayers who paid for the registry for years and want to keep it. But when it comes time to commend the courage and determination of parents of kids with autism spectrum disorder, for once will the government hurry up and help pass this bill once and for all?

Fortunately, civil society did not wait all this time to offer this recognition, albeit only symbolic, to the people in question. For instance, the Autism Society of Canada already celebrates World Autism Awareness Day in April. The NDP has also been recognizing World Autism Awareness Day for some time now; we did not wait for the government to get on board. We hope the bill will pass this time and we will finally be able to make this gesture, however symbolic, to support Canadian families and community organizations that help those with autism disorders.

Despite the importance of this gesture, it nevertheless remains merely symbolic. No government resources will be earmarked to support families and organizations. No resources will be made available to organizations that can help us understand why autism has become so much more common over the past 20 years. We are all well aware of this government's aversion to research, but considering such a strange phenomenon of such scope and with such a serious impact on the people affected, it is high time more action was taken.

It is unfortunate to note that this government has chosen to help its friends, to reward those close to power, to walk away from helping the families of autistic children and has failed to make appropriate investments in the health system by increasing provincial transfers or helping community organizations in their work. It has also backed away from funding research in general, as well as autism research.

We are hoping that the situation will change. We are hoping that this government will finally assume its responsibilities and help those in need. We hope that it will respect Canadians' values of solidarity and show respect for the devoted families looking after autistic children. We hope that, after six years, this bill will finally pass and that it will be just the first step towards greater recognition of the sacrifices and the passion of parents, community workers and volunteers who look after those with autism.

Although we deplore the fact that this bill lacks consistency and does not provide resources for families in need, we nevertheless salute the awareness that it will raise. It is a sign of things to come that gives hope to all these families and volunteers and the people affected by autism spectrum disorder.

Therefore, we salute this bill, and I am proud to say today that it was brought forward by a member of the NDP. I hope that it will finally be passed by the members of the House.

[The Acting Speaker, Conservative, Bruce Stanton]

Before I give the floor to the hon. Parliamentary Secretary to the Minister of Public Works and Government Services, I must inform him that I will have to interrupt him at 6:59 p.m., when the time allowed for Private Members' Business expires.

The hon. Parliamentary Secretary to the Minister of Public Works and Government Services.

[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.

[The Acting Speaker, Conservative, Bruce Stanton]

The hon. parliamentary secretary will have seven and a half minutes when the House resumes debate on the motion.

The time provided for the consideration of private members' business has now expired and the order is dropped to the bottom of the order of precedence on the order paper.

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.

[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.

[Francis Scarpaleggia, Liberal, 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.

[Mike Lake, Conservative, 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.

[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.

[Matthew Dubé, NDP, 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.

[Dany Morin, NDP, 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.

[The Speaker, Conservative, Andrew Scheer]

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

[Harold Albrecht, Conservative, 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.

[The Speaker, Conservative, 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.

[Some hon. members]

Agreed.

No.

[The Speaker, Conservative, Andrew Scheer]

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

[Some hon. members]

Yea.

[The Speaker, Conservative, Andrew Scheer]

All those opposed will please say nay.

[Some hon. members]

Nay.

[The Speaker, Conservative, 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.

[For continuation of proceedings see part B]

[Continuation of proceedings from part A]

The House resumed consideration of the motion that Bill C-24, An Act to implement the Free Trade Agreement between Canada and the Republic of Panama, the Agreement on the Environment between Canada and the Republic of Panama and the Agreement on Labour Cooperation between Canada and the Republic of Panama, be read the second time and referred to a committee, and of the motion that the question be now put.