World Autism Awareness Day Act

An Act respecting World Autism Awareness Day

This bill was last introduced in the 41st Parliament, 1st Session, which ended in September 2013.

Status

This bill has received Royal Assent and is now law.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Votes

  • June 20, 2012 Passed That the Bill be now read a second time and referred to the Standing Committee on Health.

World Autism Awareness Day Act
Private Members' Business

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

NDP

Dany Morin Chicoutimi—Le Fjord, QC

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

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

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

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

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

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

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

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

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

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

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

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

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

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

World Autism Awareness Day Act
Private Members' Business

June 19th, 2012 / 6:25 p.m.
See context

Conservative

Harold Albrecht Kitchener—Conestoga, ON

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

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

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

In that speech, I also said though:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6 p.m.
See context

Conservative

Harold Albrecht 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:10 p.m.
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NDP

Christine Moore 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:10 p.m.
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Conservative

Harold Albrecht 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:10 p.m.
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Liberal

Dominic LeBlanc 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?

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:15 p.m.
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Conservative

Harold Albrecht 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:15 p.m.
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Conservative

Blaine Calkins 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?

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:15 p.m.
See context

Conservative

Harold Albrecht 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:15 p.m.
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NDP

Christine Moore 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:25 p.m.
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Liberal

Hedy Fry 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:35 p.m.
See context

Newmarket—Aurora
Ontario

Conservative

Lois Brown 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:45 p.m.
See context

NDP

Sana Hassainia 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.

World Autism Awareness Day Act
Private Members' Business

February 28th, 2012 / 6:55 p.m.
See context

Lotbinière—Chutes-de-la-Chaudière
Québec

Conservative

Jacques Gourde 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.

World Autism Awareness Day Act
Routine Proceedings

December 1st, 2011 / 10:05 a.m.
See context

Conservative

Harold Albrecht Kitchener—Conestoga, ON

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

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

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

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

(Motion agreed to and bill read the first time)