World Autism Awareness Day – Bill S-237

World Autism Awareness Day Bill

Second Reading—Debate Adjourned

Hon. Jim Munson moved second reading of Bill S-237, An Act respecting World Autism Awareness Day.—(Honourable Senator Munson)

He said: Honourable senators, it is late in the evening and all have been patient in listening to serious debates on issues dealing with children and issues dealing with the military. I am determined to deliver my speech on an issue that is very important to me and, I believe, to this country.

Honourable senators, I am proud to present Bill S-237, An Act respecting World Autism Awareness Day. I am also pleased that my Conservative friend, Senator Don Oliver, is supporting this initiative in a major way.

Bill S-237 would make April 2 world autism awareness day, which would bring the attention of all Canadians to the issue of autism, a problem that affects at least one in 165 families in this country. Autism, a neurological disorder that isolates people from the world around them, is on the rise in Canada and affects more children worldwide than paediatric cancer, diabetes and AIDS combined. A generation ago, autism was considered to be a psychiatric response to parents, in particular mothers who were cold or not loving enough.

Thank goodness that nonsense has been dispelled.

Unfortunately, no hard knowledge has been gained. Autism remains a mystery. We do not know what causes it. We do not know how to cure it. We do not know why the number of children affected is growing. We do not have consensus about what constitutes adequate or appropriate treatment, and we do not know how to pay for that treatment.

When it comes to autism, honourable senators, we are in the dark. Families across the country are on their own, struggling to find treatment and struggling to pay for it. Marriages are breaking up. The stress is tremendous. Canadian families with autism have to go it alone.

This became abundantly clear to me and other honourable senators when the Standing Senate Committee on Social Affairs, Science and Technology conducted its inquiry into autism. As you may remember, the Social Affairs Committee studied autism. The title of our report, Pay Now or Pay Later -Autism Families In Crisis, spoke volumes.

Intensive behavioural intervention, one of the treatments that has proven to be effective for many people with autism, is very expensive. It costs from $50,000 to $65,000 a year.

People with autism who receive little or no treatment often require full-time care or institutionalization. In addition to these not inconsiderable costs, there are moral costs; the loss of the potential of a human being. People with autism who get the treatment and support they need can contribute to society. Those who do not receive treatment and support retreat into themselves and some become aggressive and violent.

I have met some extraordinary people in investigating this very sensitive issue. I met young Joshua Bortolotti, as has the Leader of the Government. His little sister has autism. This young man, just in middle school, has circulated petitions, spoken publicly about autism and collected money for the cause. There is nothing that he will not do for his little sister.

Honourable senators, there is just about nothing that I will not do for Josh.

Some Hon. Senators: Hear, hear!

Senator Munson: It is emotional to talk about these children and families.

I also met Stefan Marinoiu who walked all the way from Scarborough to Ottawa this past winter. He did not get headlines for that. He walked from Scarborough to Ottawa just to draw attention to the plight of families with autism. He has a son aged 15 who is no longer eligible for treatment. Stefan said that from birth to age 13 he could handle his son, but now his son has become very aggressive. He is a big man, and he cannot handle him anymore. This man is so desperate that he also went on a hunger strike in front of Queen’s Park. He does not know what to do anymore for his son.

I met Andrew Kavchak, a lonely protester with a sandwich board on Parliament Hill who told me about autism and its devastating impact on families.

As I speak tonight, a gentleman by the name of Jonathan Howard is walking across this country. He is not like Terry Fox, to whom we all paid attention. Jonathan Howard started walking a month ago from St. John’s and is walking to Victoria. I do not know who is paying attention to Jonathan right now, but he is walking to try not only to create awareness, which we all want to do, but also to secure a national strategy to deal with autism. He may be in New Brunswick or somewhere in Quebec, but he is still walking.

Josh is strong and brave and a fighter; Stefan is brave and a fighter; and Andrew is brave and a fighter. However, for every Josh, Stefan, Andrew and Jonathan, there are countless brothers, sisters and parents who feel alone, who think we do not care. That is why a day like World Autism Awareness Day is important.

Autism is on the rise around the world, and we do not know why. April 2 has been declared by the United Nations as World Autism Awareness Day. There was consensus among 192 countries that there is a need to draw the attention of people around the globe to this neurological disorder that is affecting more and more families.

I remind honourable senators that Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities. These international conventions bind us to take action to see that children with disabilities enjoy a full and decent life in conditions that ensure dignity, self-reliance and full participation in their community.

It is clear, honourable senators, that if we want to honour the commitment of these international conventions, we must get to work. Children with autism in Canada do not receive the protection they require, the protection we said we would provide. This is Canada, the country of Tommy Douglas, of health care, of a social safety net that provides security for citizens and a quality of life that is the envy of the world.

We need to recognize autism for the health problem that it is, one that is urgent and demanding of our immediate action. Canada’s most vulnerable children are falling through the mesh of our social safety net. Every province has a different approach to treatment and funding. Parents need patience and persistence to understand the intricacies of what they are entitled to, which list to get on and where, and where to ask for help.

Honourable senators, these families have enough on their plate. We need to make it easier and recognize that autism treatment is an essential health service that should be funded through our health care system.

Some Hon. Senators: Hear, hear.

Senator Munson: Honourable senators will remember that the Subcommittee on Population Health traveled to Cuba earlier this year as part of our work. In Cuba we went to a school for children with autism. It was impressive. Everyone can talk about Cuba and say that teachers do not get paid very much, and so on, but this was impressive. There were 21 teachers for 21 children with autism.

I was in that school. One could cry to see them. The teachers were not talking about money; they were just talking about caring. The children in that school came from countries in Central and South America, not only from Cuba. If Cuba, a poor country with so little, can do so much for their children with autism, surely Canada, with a budget surplus, can step up to the plate.

I do not like to play politics, but in our report Pay Now or Pay Later we said something. We asked for a national strategy.

We need help for these children. World Autism Awareness Day that I am asking for is a small thing we can do. It will be an opportunity to raise public awareness of autism and the need for research, early diagnosis, access to treatment, increased training of medical personnel and support for people with autism and their families for as long as they need support.

I remind honourable senators that the Centers for Disease Control and Prevention in the United States have called autism a national public health crisis. It is a crisis. I am fully aware that declaring April 2 as World Autism Awareness Day will not fix things overnight. Families will still struggle with the demanding and difficult task of finding and buying care for their children. Parents will still worry about the future. Parents will still worry about the day when they are gone, about who will care for their children with autism. Nine out of ten children who do not receive treatment for autism are institutionalized. This cost to our society is huge, a tragic loss of potential and a moral travesty.

If these children had cancer, would we not take immediate action? Would we debate whether they deserved chemotherapy, whether we had the responsibility to treat them? Of course, we would not.

Honourable senators, I have learned a few things in my four and a half years here in the Senate. The most important one is that small steps lead to historic journeys. When I walked across Parliament Hill and I met a lonely protester, a public servant with a sandwich-board calling on the government to devote more resources to autism, I had no idea that within a year I would ask the Senate to study autism in depth. I did not know. I had no idea that tonight, after all these debates, which are extremely important — I wish the gallery were full of media — I had no idea that I would be tabling a bill to make April 2, World Autism Awareness Day. It is a simple thing. I think that by declaring April 2, World Autism Awareness Day, we will make an important statement.

I want to salute Senator Oliver for his strong support for this bill. Senator Oliver, I want to say thank you for what you do in Nova Scotia and this country, and I know the families that you work with in Nova Scotia. It is important for where we will take this debate. I have 13 more years here, hopefully, and we will fight for this cause. We will fight for a national program and national leadership. I hope that we will say to people with autism and their families: Yes, you matter; and yes, we care. We will say to all Canadians that autism is a growing problem that affects their community, their schools, their workplace, their neighbourhood, and their country. Declaring April 2, World Autism Awareness Day is one small step in a journey to see that all people with autism and their families have the care and support they need. I hope, honourable senators, that you will support this bill so that we can take that step and walk with Canadians with autism and their families and say, “You are not alone; we are here with you; and together we will make things better.”

 

Hon. Gerald J. Comeau (Deputy Leader of the Government): I must advise honourable senators that the 45-minute period of time normally reserved for the second speaker is reserved for a senator on the government side.

 

The Hon. the Speaker pro tempore: Senator Keon, do you wish to speak on the bill?

Hon. Wilbert J. Keon: Honourable senators, the hour is late. I will speak briefly. I want to add my support to Senator Munson for everything he has done for this subject. I want to mention again something I have said before in our conversations, and that is the tremendous need for research.

Senator Munson will recall I drew an analogy between autism and AIDS when we first confronted AIDS. There were five patients that I operated on who died mysteriously back in the 1980s, and we had no idea what we were dealing with. Then we heard about AIDS. I was the vice-president of the Medical Research Council at the time, and, indeed, I was acting president for a while when Dr. Ball was sick. We tried to do something to deal with this situation when it hit the horizon. We did not have a single scientist in Canada who knew anything about retroviral research.

We asked for submissions, and the submissions we received were awful. We could not fund any of them because the science was so bad. However, we persisted and recruited into Canada retroviral experts, and now Canada has one of the strongest research bases in the world in retroviral studies. AIDS, while it has not been cured, has been converted to a chronic disease.

When we deal with the unknown, the tendency is always to jump in desperation to try to treat a situation, and that is fine; I have no objection to that at all. However, more important than that is, we make a strong initiative to build appropriate scientific expertise in our country, coupled with America and other countries, to solve this, because we do not have the scientific knowledge we need at this point in time to manage this entity on an intelligent basis.

Everything Senator Munson said is absolutely true. For some reason, in the Western world, autism is growing in leaps and bounds. The interesting thing is that in Cuba, it is not. It is there, but it is not growing at the same rate.

Until we have a research establishment to target this disease, we will not make much progress in its management.

Senator Munson, I encourage you to keep hammering at that, and I can assure you I will support you in any way I can.

Hon. Donald H. Oliver: Honourable senators, I am delighted to rise tonight to add my support to this important initiative undertaken by Senator Munson. For many years now, our colleague has vocalized his concerns for Canadian families coping with autism. Time and time again, he has emphasized the need for a national autism program, a strategy that will ensure our most vulnerable citizens receive the necessary health care and social support that we Canadians value most.

Senator Munson’s dedication to the well-being of Canadians with autism inspires us all to lend our voice to this cause. This bill, to recognize April 2 as World Autism Awareness Day, is yet another example of Senator Munson’s commitment to raise awareness about autism.

Autism spectrum disorders, ASD, are an important health and social issue in Canada. Approximately one in every 165 Canadian families is affected by ASD. This complex lifelong developmental disability affects individuals regardless of their race, religion, socio-economic status or geography. It has no known cause and no known cure.

 

Bill S-237 is of particular importance since the number of Canadians diagnosed with ASD has increased by 150 per cent in the last six years. In fact, there are currently 48,000 children and 144,000 adults with autism in Canada right now.

This bill proposes that we join the global effort to focus the world’s attention on autism. On World Autism Awareness Day, communities around the world will speak up about autism by coordinating events to acknowledge the daily realities of people living with this condition.

World Autism Awareness Day stems from United Nations Resolution 62/139 which was passed on December 18, 2007. April 2 has become one of only three disease-specific UN days.

This day expresses the UN’s deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges. In fact, more children worldwide are affected by autism than pediatric cancer, diabetes and AIDS combined.

This day will also acknowledge the ongoing struggles and extraordinary talents of the approximately 35 million people living with autism in our international community.

The UN resolution is an active way of encouraging member states like Canada to emphasize the importance of universal human rights and, more specifically, the rights of the disabled.

When speaking on the objectives of World Autism Awareness Day, UN Secretary-General Ban Ki-moon said:

. . . let us dedicate ourselves to enabling the family, the most basic unit of society, to fulfill its role ensuring that persons with disabilities enjoy full human rights with dignity, and flourish as individuals.

Within our Canadian communities, individuals with ASD and their families are longing for our support. Bill S-237 reaffirms the government’s commitment to the health and social well-being of all Canadians. Individuals with ASD are equal members of our community, and they need to know that they are not alone.

By increasing autism awareness, World Autism Awareness Day will address social misconceptions associated with autism. It will also discourage the stigmatization and discrimination of autistic individuals. By highlighting their incredible talents and potential, we are working to ensure that all Canadians are respected.

When testifying before the Standing Senate Committee on Social Affairs, Science and Technology, Dr. Jeanette Holden of the Autism Spectrum Disorders Canadian-American Research Consortium emphasized the importance of increasing awareness about Autism Spectrum Disorders. She explained:

We need to appreciate the gifts they have and their ability to be happy. We also have to understand that many of these kids are suffering from medical conditions that are not recognized. They may be acting out or having problems because they are in pain from unrecognized conditions. We must ask what is causing these behaviours. Is it because they just want to be naughty kids and be a nuisance? No. There is a reason. They are either intellectually frustrated or medically compromised. All of these factors must be taken into account.

Autism Awareness Day will sensitize our communities on the difficulties of raising a child with autism. It will create a greater support network for Canadian parents.

As honourable senators can imagine, parenting a child with autism can be quite challenging. It requires great patience, strength and devotion. In fact, research has shown that families of children with autism experience high levels of stress, more than families with other types of disabilities. This stress can sometimes lead to despair, depression and, in the worst cases, suicidal thoughts. These caregivers need our support.

I wish to take a moment to speak about the significant work that is being done in Nova Scotia.

Joan and Jack Craig of Nova Scotia have done tremendous work to support Canadian families in the Atlantic region. They are known for their devotion and dedication to finding answers and increasing our understanding of ASD.

Their vision and generosity led to the establishment of the Joan and Jack Craig Research Chair in Autism at Dalhousie University, which was founded in 2001. It is the first endowed chair in autism research in Canada.

Its chair holder, Dr. Susan Bryson, is recognized internationally as a leading expert on autism and related disorders of development. The chair is working on attention and emotion in children with autism. They are also conducting a groundbreaking, comprehensive, multinational study on infant siblings of children with autism. They are charting the first signs of autism in order to develop modules for frontline physicians to use in their practices.

Jack and Joan Craig have also founded a provincial autism centre in Halifax, Nova Scotia. This professionally-run resource centre is focused on helping parents and professionals access quality education about autism spectrum disorders. The centre welcomes approximately 2,000 people a year, including individuals with autism, their parents and siblings, students, and people interested in learning more about ASD. It is the largest source of information on ASD in Eastern Canada. Its extensive library and resource centre is in high demand, so much so that they can hardly keep the material on the shelves.

The centre provides social activities for teens and young adults with ASD, many of whom have never had social activity with peers before. Weekly events allow individuals to interact and socialize. The centre also focuses on introducing young people with ASD to the community as volunteers. The outcomes of this initiative have been extremely positive since it allows the community to better understand autism while providing individuals on the spectrum with valuable opportunities.

The centre is also increasing awareness in Canadian workplaces and universities. Only 12 per cent of people living with autism are employed, and only 1 per cent of these individuals will find employment in their area of specialty. The centre is working on bridging this gap. By working with teachers and employers, the centre hopes to identify strategies to help create a positive learning environment for individuals with autism.

The centre has had many successes since its 2002 opening. For instance, the young adults in the centre publish their own newsletter called Autism Aloud and they can chat one-on-one on the supervised chat-line.

Thanks to the Craigs’ passionate perseverance and dedication to the well-being of all Canadians, I am certain that the centre will have continued success in the future. Their work continues to provide credible information and life-changing opportunities for Canadians in need.

As parents of a 54-year-old with autism, the Craigs understand the challenges and rewards of parenting a child with ASD. Like any parent, parents of a child with ASD want what is best for the child. They question whether their child is receiving the necessary support and whether he or she will be able to live an independent life, yet trying to find and access necessary services, effective treatments and support networks are an ongoing challenge.

Carolyn Bateman, who is the mother of a 24-year-old son with autism and co-founder and past president of the Autism Society of P.E.I., explained to the Standing Senate Committee on Social Affairs, Science and Technology:

Families want older children to be independent and feel self-worth, a sense of belonging and to know that someone cares enough that they will not be sent to an institution or an inappropriate setting when their parents are not around. No human being should be expected to live without that in this country.

This bill acknowledges the challenges that I have just described. It demonstrates that we, as Canadians, care about these individuals. More importantly, it proves that we want to increase dialogue and identify strategies to improve their situation, yet many of us do not know the challenges related to living or caring for an individual with ASD.

Dr. Eric Fombonne, Director of Child Psychiatry at McGill University, explained:

. . . the typical pattern is that parents become aware of problems at age 16 or 18 months on average, and then they must wait. They go to their paediatricians, and there is a waiting time of six to eight months before they are taken seriously. Then they refer the child to us, and they wait in my centre for 12 months at this point in time before they can be seen.

 

Anne Borbey-Schwartz, a former senior therapist and trainer in Intensive Behaviour Intervention, explained that this waiting period often leads to parents becoming skeptical towards “the system.” She said:

. . . through months of waiting and struggling to come to terms with the situation, their trust in the system has faltered.

The Autism Canada Foundation has also reported that, “unfortunately, many paediatricians and other physicians are not experienced in diagnosing autism.” They also explain that many health professionals guide parents with a “wait and see” approach or promises that the child will “catch up” one day.

Yet, early diagnosis and early intervention of ASD are keys. During his December 7, 2006 testimony, Dr. Bernand Deslisle, a member of the Franco-Ontarian Autism Society, explained to the Senate committee that:

. . . all the experts agree that autistic children and adolescents are children at risk and thus their needs are commensurately great. It has been proven that the quality of life for autistic children can nonetheless be improved through early diagnosis and treatment, combined with subsequent support from appropriate programs and services.

Yet, Canadians with autism spectrum disorders have unequal access to services across the country and they are required to wait for assistance. This cannot continue.

More worrisome still were the statements to the committee which indicated that “the service system for adults is woefully inadequate. The recognition of the mental health needs of adolescents and adults is very important and often missed and misunderstood.” Parents of “adult children” are left with very few health and social support networks and continue caring for their children as they themselves age.

Our own Senate committee “recognized that family caregivers are struggling to provide the best care possible for persons living with autism. Their emotional and financial hardships are very real, and a solution must be found.”

Clearly better knowledge about autism is needed for all Canadians who deal with this disorder. This includes parents, siblings, family members, service providers and policy-makers. In advance of any strategic work to address autism, it is essential that governments and stakeholders better understand its causes and optimal interventions.

While services to screen and treat autism remain a provincial/ territorial responsibility, the Government of Canada is committed to supporting the evidence base on this important issue so that future action by provincial and territorial governments, caregivers and families will be well-informed. The government is therefore collaborating with a range of partners to support those with autism and their families through research and knowledge-based activities.

For example, on October 20, 2007, the Government of Canada announced the establishment of the National Chair in Autism Research and Intervention at Simon Fraser University. The chair is jointly funded by the Government of British Columbia, Health Canada and is contributing $1 million over five years on this initiative. Moreover, a web page with links to relevant information on autism has been included on the Health Canada website, and will continue to be enhanced as new developments arise.

The Canadian Institutes for Health Research has also done significant work in autism. From 2000 to 2007, it spent or committed approximately $26.1 million for related research. This research is exploring many relevant issues, including autism’s causes, origins, and treatments.

The National Autism Research Symposium, which took place on November 8 and 9 in Toronto, was also a positive development in autism research. Service providers, policy-makers, researchers and people with autism and their families gathered to share knowledge and to support dialogue and to discuss future research priorities.

In addition to activities which support improved knowledge and awareness of autism, the federal government already provided significant transfers to provincial and territorial governments for health care and social programs through the Canada Health Transfer and the Canada Social Transfer respectively. This is good news for Canadians. I am confident that these activities will contribute to greater evidence and awareness of autism, and will enhance Canada’s capacity to address this important issue.

Honourable senators, in conclusion, I would like to leave you with the words of Anne Borbey-Schwartz. When testifying before the Senate committee she said, “It takes a community to raise a child.” She emphasized that a child with autism deserves no less. I could not agree more.

I would like to thank Senator Munson for calling on us all to recognize the unmet needs of this community. He has lent his voice to this important cause by reminding us that individuals with ASD and their families are in desperate need of our support.

Honourable senators, Senator Munson’s bill is our opportunity to send a clear message to all Canadians that individuals with autism are a valuable part of our community. By officially declaring April 2 World Autism Awareness Day, we are giving them a voice. Let us join with other UN member states in declaring April 2 World Autism Awareness Day.

Hon. Marilyn Trenholme Counsell: Honourable senators, I know the hour is very late, but I have to say this: I want to give great praise to my fellow New Brunswicker, Senator Munson, for not only this bill but all of his work on autism. It shows his passion and his compassion.

I also want to say that I applaud Senator Keon for his comments about research because that is really the number-one thing at this time. The World Autism Awareness Day will help, but the research is fundamentally necessary.

I did hear mention made of an autism school in Cuba. I know that Senator Keon will bring to us valuable information in his report on population health based on Cuba, but I want to say this: One of the very last things that Premier Hatfield did — former Senator Hatfield — was to introduce a bill in the Government of New Brunswick that would end segregated schools. He closed the William F. Broadford School and it was left to the government, of which I was a part, to bring in full integration. In the last two years, we have had another study by a learned academic, in which New Brunswickers said yes to full integration.

I will now tell honourable senators a little story. I know a child very well who has autism. Up until a few months ago, he was able to have his lunch with all the children in the school, in the cafeteria. Then, because resources were cut, they said no, there will be a table where children like him will have their lunch. His parents got very upset because he did not eat. He was not eating and he was crying about his lunch and the lunch can was still full when he came home. They looked into the matter and it was because he had been separated with other autism children. They fought a hard battle, and I helped them, and they got that additional teacher assistance back and the child was able to eat in the cafeteria with all the children.

That is the message: Inclusion is so important. The awareness is important and the knowledge that Senator Keon will bring from a country that is doing better probably than we are. Research, yes, but let us always have inclusion. I pay tribute to former Premier Hatfield and former Senator Hatfield for breaking down those barriers and saying yes to inclusion in New Brunswick.

Hon. Terry M. Mercer: In light of the late hour, I will adjourn the debate quickly, except that I do want to associate myself with comments by Senator Munson and Senator Oliver, and also to support the Jack and Joan Craig Foundation in Nova Scotia.

People do not understand how important are these days of recognition. By declaring April 2 World Autism Awareness Day in this country, it brings a focus to a problem that we have been dealing with. It took Senator Cochrane two years to get it done. We drew the attention of this chamber and the entire country to World Blood Donor Week, which was celebrated last week, and it brought a whole new focus to this issue. This is extremely important.

As a former executive director of the kidney foundation and the diabetes association, and some of us worked for the lung association over the years, I understand how these days help focus the public’s attention, and how these days focus what we are doing.

I have had the privilege of knowing several families with autistic children. The parents of these children, who must manage the difficulties they experience to raise these children, are some of the most special people in the world. We need the compassion and we need to bring to this debate the compassion that goes beyond this place. We need to carry it out into the community, as Senator Trenholme Counsell has talked about, with her case of the child who was segregated in the cafeteria.

On motion of Senator Mercer, debate adjourned.