Bill S-206

Margaret Spoelstra Executive Director, Autism Ontario

Madam Chair and committee members, thank you very much for the opportunity to speak with you and the Standing Committee on Health.

As a director at Autism Ontario, one of the largest advocacy organizations in Canada, it's my honour to be working for such an organization that is led by 300 volunteers, mostly parents, through 28 chapters throughout Ontario.

People with autism spectrum disorders and their families in Ontario have been waiting a long time for national recognition as full citizens of Canada. They have tremendous gifts to offer despite their significant challenges with social understanding, sensory sensitivities, and fitting into a neuro-typical world, a world that seeks out novelty and yet finds the novel, sometimes unusual mannerisms and unconventional social responses of people with ASD to be uncomfortable or, at worst, unacceptable.

For many years, the media has portrayed autism as a condition associated with children. In their early years, their parents are desperate to find clear, accurate diagnoses, assessment, and evidence-based intervention that will help their children to get the best possible start in life. Canadians need to know that far too many families are waiting for these services and intervention, and missing vitally important and comprehensive supports.

In school years, children and teens with ASD have unequal access to quality, individualized education that meets their unique learning needs. They are frequent targets for bullying by peers, and often fail to achieve their potential through kind, but untrained, professionals in evidence-based practices. It has been said that when you've met one person with autism, you've met one person with autism. ASDs are complex. In addition to the difficulties they face in navigating social environments and societal demands, over 50% of people with ASD will also experience mental health challenges in their lifetime, many already beginning in their youth. With quality individualized health and education supports and tailored environments, these children can grow up to have jobs, make friends, and enjoy their families and communities.

Children with autism grow up to be adults with autism. Their parents worry, “What on earth will happen to my son or daughter when we're gone?” Caregivers of children, young and adult, face enormous stress in raising their children across the lifespan. We can improve the experiences of these families through a day such as World Autism Awareness Day in Canada, so that there is greater understanding in communities across the country, and so that people with ASD might take their places as full contributing citizens of Canada.

In 2007, Senator Jim Munson sought a national strategy for supporting people with ASD and their families. The “Pay Now or Pay Later” paper identified the same points being made today. Such a strategy includes the funding of excellence in research, clinical services, education, and the creation of inclusive, welcoming communities. With one in 88 children being diagnosed in the U.S., and one in 100 children in Canada, in recent studies, the numbers are growing daily to crisis proportions. We must not fail to support people with ASD, our most vulnerable citizens. Autism Ontario strongly supports the passage of Bill S-206, An Act respecting World Autism Awareness Day as an important step in achieving acceptance and opportunities for all people with ASD.

Thank you very much.

Richard Burelle Executive Director, Autism Society Canada

Good morning. My name is Richard Burelle, and I am the executive director of the Autism Society of Canada.

Madam Chair, committee members, Senator, members of Parliament, and guests, I want to thank you for allowing me to represent Autism Society Canada as we give our wholehearted support to Bill S-206, An Act respecting World Autism Awareness Day.

Last night I sat down, pen in hand, ready to make some notes about what I wanted to speak to you about today regarding our support for Bill S-206. I gathered my notes—they're all right here beside me—including the number of committees the ASC has; the challenges and successes we have gone through; the news on advances we have made at the federal level; and the list of hurdles that are still ahead.

But I hesitated, because what I really want to talk to you about is people. I especially want to talk to you about family members and caregivers, those very people who are challenged on a daily basis to support and care for loved ones living with an ASD, an autism spectrum disorder.

Let me share with you a story. A little while ago, Autism Society Canada received a memorial donation for someone who had, I suspected, wanted to send a gift to a charity in lieu of flowers. We're always appreciative of those who think of us at a time that must be extremely difficult.

The next day we received a few more donations in memory of the same person. Her name was Susan.

A couple of days passed, and yet a few more memorial donations came in for Susan.

This is not totally uncommon. Our organization may receive quite a few gifts in memoriam during the course of a year. However, I thought to myself that Susan must have been a pretty special person to have so many friends and family members who cared about her. I felt as if Susan herself was sending us all her flowers.

As is often the case with memorial gifts to national organizations, I normally do not know the deceased personally, and I'm often unaware of their connection to Autism Society Canada. This case would be different.

A couple of weeks after that first memorial gift, I received a letter from Jan, who is Susan's mother. She wrote to me to tell me about Susan.

You see, Susan was the mother of a child living with an autism spectrum disorder. Jan told me about how Susan fought for five years with her local school board to get her child in an appropriate class. She told me how Susan's child did not have friends at school, nor in the neighbourhood. She told me how Susan felt: that she had failed as a mother and as an advocate for other children with autism. Jan told me that Susan had taken her own life.

Losing Susan should not have happened.

I have chosen to recount this tragedy, which is an extreme case, to illustrate a point. There's a misnomer out there that autism is not deadly. I would beg to differ. Autism awareness is clearly lacking.

I applaud Bill S-206, An Act respecting World Autism Awareness Day, which by definition takes on this issue. Ignorance of autism can no longer be an excuse.

For Canada, this act is essential to support the many autism organizations striving to work together on behalf of individuals living with an autism spectrum disorder and their caregivers across this great country.

Bill S-206 also gives Canada a unique opportunity to demonstrate leadership in this area to the international community.

In closing, I would like to reaffirm the need to raise awareness on autism spectrum disorders so that tragedies like Susan's never reoccur.

Autism Society Canada has a broad reach. Our member societies work in direct contact with families, caregivers, individuals living with an ASD, across this country. Our societies inform us that access to services from one province to another is indeed unequal. There exist glaring gaps in treatment and resources across this country. We believe it is time for this to be addressed. We believe it is time for a national autism strategy in Canada.

Madam Chair, I would like to thank you and members of this committee for your invitation to be present today. I would also like to thank you, Senator Munson, for your unwavering dedication to pursuing Canada's full support of World Autism Awareness Day.

Thank you very much.

Jim Munson Senator, Lib., Senate

Thank you, Madam Chair. It is really a pleasure to be with my parliamentary colleagues this morning. It's Tuesday, October 16. It has been a long journey, but a very positive journey for me, my team, and my office, and for senators—Conservatives and Liberals on the Senate side—in working with the autistic community.

As we know, this bill deals with An Act respecting World Autism Awareness Day. This bill has had quite a journey. We've had a number of prorogations and one general election among the events that complicated what I believe should have been a straightforward passage. But this happens in politics. Being a former journalist and covering the Hill—I can't believe it—in the 1970s and 1980s, I understand that in a democratic system elections do get in the way from time to time.

I'm here as a parliamentarian. I've been tremendously encouraged by the reception this little bill has received at various stages and from all parties throughout its circuitous journey. It would not be where it is today, attending consideration by your committee, were it not for all the individuals here on the Hill and throughout this country who recognize the implications of and the need to address the mounting autism crisis.

On October 19, 2011, almost exactly one year ago, I stood in the Senate chamber when the bill was moved to second reading. I felt it was important on that occasion to recognize some of the people who have supported the bill in efforts to help Canadians become more sensitive to the realities of autism.

In the Senate we've worked together with Conservative Senator Keon, who's been a great supporter, along with Senators Oliver, Eggleton, Mercer, and Trenholme Counsell. I have to say at this particular point that one of the good things about working in Parliament is working with politicians from all sides. It has been a pleasure working with Mike Lake, and in particular, Jaden, who has been an inspiration in all of our lives. I'm also heartened by working with my colleagues from the New Democratic Party, from Peter Stoffer to Glenn Thibeault and many more who have supported this particular bill.

Dany Morin, who brings so much to this committee, I understand, covered the key strategic issues related to autism. These include the necessity for all levels of government to support research on the real causes of ASD. Jacques Gourde reminded those present of the Canadian adolescents and adults with autism who did not have the benefit of early diagnosis and prompt treatment, illustrating just how important it is to have easy access to reliable information. Monsieur Gourde described their experiences this way: “Teenagers are all too aware of their limitations and differences, which can make them feel marginalized, vulnerable, and isolated.”

For me it's been 10 years. I walked onto the Hill. I was appointed in 2003. There was a gentleman on the Hill who was wearing a billboard. He said, “Munson, you're not going to walk by me. You used to work at CTV. You should see this as a news story.” I looked at him and saw that he had a billboard saying, “Please help my son.” I was not that familiar with autism, and I said, okay, let's sit down and chat.

So it was because of that gentleman, Andrew Kavchak, and many others that I said, “What should I do about this?” I made a statement in the Senate. We're not televised, so people don't see our statements very often. Then somebody said, “Well, why don't you launch an inquiry?” I said, “How do I do that?” Well, that's a longer statement, so I did that. Then I said, “What happens now?” They said, “Well, you haven't built up enough support yet.” I said, “Well, damn it, how far do I have to go on this?”

The social affairs committee in the Senate sat back and said they'd have a limited study, but it turned out to be a pretty darned good study, called “Pay Now or Pay Later, Autism Families in Crisis”. That was in 2007. That's a bit of the background. The words “pay now or pay later” came from a gentleman from Fredericton, New Brunswick, who was one of our witnesses with Asperger's. He said, folks, if we don't do something more in terms of recognition and paying more for science and research, you're going to pay now or you're going to pay later. And is he correct about that.

We have so many national strategies in this country dealing with heart disease, diabetes, and cancer, so why not autism?

With each passing day, the need for a greater federal commitment to address this health crisis becomes greater and greater. At the very minimum, I believe the federal government has a role in the lives of aboriginal children who have autism. I think there is a place for more leadership.

I have to congratulate the government for what it has done thus far in helping set up a surveillance and monitoring system, which I think is extremely important. I also believe that with one in 88 children in this country having ASD, what the Minister of Finance did is extremely important. He has been very good to some of my causes, including the Special Olympics. He introduced the registered disability savings plan a few years back. It is an excellent, sensitively crafted savings vehicle for parents who have children with disabilities.

This bill about World Autism Awareness Day is more than just an act respecting World Autism Awareness Day. It's an act respecting those families that have to deal with autism every day. Isolation is, of course, one of the principal characteristics of autism, but the disorder also isolates the families and friends of people. Constant care is often required.

As we all know, and as you folks in this committee know—you've studied it and you've talked about it in Parliament—this could mean that in a two-parent family, one person stays at home full time and looks after the child with autism. It's a heavy burden. Simple activities such as birthday parties, play groups, play dates, trips to the library, and even an afternoon in the park can be exhausting and demanding.

For me, it comes down to one simple thing. It was said when I was in Halifax last week. I was handing out a Diamond Jubilee Medal to Dr. Susan Bryson at the IWK, the children's hospital in Halifax. The minister's deputy of the government in Nova Scotia said that what's so important is that we need to have the things others have so that a son or a daughter, through whatever therapy helps, can have a sleepover, just like any other child. I think we have to think about that. Some of the natural things that we accept do not happen naturally with an autistic child.

This bill to respect World Autism Awareness Day will not change many realities, but it will send out a message that these families deserve to hear. It will say that Parliament, parliamentarians, are thinking of these children and that we have more to do to help these children, as the preamble to my bill states. It will say to these children and their families that they are not alone. It will show these families that their plight matters and that the people of Canada respect and admire them for doing the best they can in the name of their children, brothers, sisters, grandchildren, nieces, and nephews.

World Autism Awareness Day will help build awareness among Canadians about autism, its symptoms, the people who are affected by it, and the need to address the crisis it has become.

Just as this day would engage individuals and society, so too would it empower governments to do even more. It would be my wish to see the federal government increase its involvement. We have taken major steps, but we have to go further, in my view, where the need is greatest, such as in funding and programs for aboriginal children, as I said before.

My former colleague, Dr. Keon, had good advice for me. He still knows so much. He told me to keep pushing for a federal role in science and research. World Autism Awareness Day would be the ideal opportunity to get this message out. So I sit here humbly before you. And I'm grateful to all of you, Madam Chair, and vice-chair, and all the esteemed members of this health committee, for the consideration you are giving this bill and the people who represent its purpose.

I'm here to answer any questions to the best of my ability.

Thank you very much.