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.