Second Reading of Bill S-206, An Act respecting World Autism Awareness Day

Honourable senators, I stand today to move second reading of Bill S-206, An Act respecting World Autism Awareness Day. Those of you who were sitting in this chamber when I introduced this bill over three years ago will appreciate that I am more intent than ever on seeing it finally become law.

For the honourable senators who are new here, I should explain that timing and, of course, politics — namely, two prorogations and one general election — have complicated what should have been a straightforward, one-time process.

I do not foresee any events like these during this session, and therefore I am optimistic that this bill will receive full legal affirmation in time for Canadians to recognize World Autism Awareness Day next spring.

In 2008, when I first stood as sponsor of this bill, Canada was lacking adequate survey data on autism. Canadian epidemiological studies have evolved somewhat since then, but are only in the early stages. In 2011, we remain largely dependent on statistics and data from outside the country to estimate the impact of autism on Canadian families.

Today, statistics show that as many as 1 in every 110 children has some form of autism. It is the most common neurological disorder affecting children, and one of the most common developmental disabilities. The rate of autism increases 10 per cent to 17 per cent annually. The numbers alone are shocking.

We must find a way, I believe, to have the federal, provincial and territorial governments hammer out a national autism strategy. Such a strategy is the best — really the only — way to assemble all the different activities going on throughout Canada to deal with autism.

In the absence of a comprehensive national approach to the autism crisis, governments — that includes the federal government — advocacy groups and individuals are carrying the weight through innovative and resourceful activities.

Locally there is an organization called QuickStart, established by a dear friend of mine, Suzanne Jacobson, in 2008. She has two grandsons. One grandson was first diagnosed as having autism at about two and a half. However, it was not until he was four and a half that he finally began intensive behaviour therapy.

So that other families would not have to endure the same agonizing wait for treatment, Suzanne helped create a clinic providing preliminary screening to determine children’s individual needs.

To address the complex issues and needs related to autism, we see that stakeholders support one another and function as a strong, pragmatic and dedicated community. At a recent fundraising event organized by QuickStart, we learned that locally, here in Ottawa, CHEO and the Ottawa Children’s Treatment Centre have been awarded $2 million from Ontario’s new fund dedicated to research and support services in autism.

These two local institutions are creating a seamless autism team to deliver support services to families with autistic children. It is good, but there are still lineups, lineups, lineups, not only here in Ottawa but across the country.

We should take heart in events like these. They show us what can be accomplished when we are compassionate and act on our responsibility to one another.

Here in Parliament, over the last few years, I have been grateful to those in the Senate and in the House of Commons who have lent their voices to this cause. In his days as a senator, and as a mentor, Dr. Wilbert Keon worked diligently to help me raise the profile of autism and turn Canadians’ attention to the crisis at hand. Way back when, now that I am well into my eighth year, I launched an inquiry into autism, and my inquiry ended up at the Social Affairs Committee. It was Senator Eggleton and, of course, Dr. Keon and the members of that committee on both sides, who embraced what I was trying to do. Then we released this groundbreaking report called Pay Now or Pay Later: Autism Families in Crisis.

Those words came from an autistic man from Fredericton, New Brunswick. As a former newsperson, I am always looking for a lead. In the last hour of his testimony, this gentleman from Fredericton, with a small computer company, said: “Well, senators, you are going to have to pay now or pay later.” That became the headline of our story.

Dr. Keon and Senator Eggleton were instrumental in showing the rest of us and pushing this report forward so that people took notice. To this day, autism organizations regard that report and its recommendations as a source of guidance and encouragement.

There are other senators among us who have, on previous occasions, stood up and supported efforts to deal with the autism crisis: Senator Oliver, a forceful speaker on this issue, Senator Mercer, and former Senator Trenholme Counsell, to name a few.

I know how difficult it is to get a private member’s bill through, but I am determined. In the house last December it was Conservative M.P. Harold Albrecht who retrieved this bill from a post-prorogation stack of private members’ bills. Introducing it to his colleagues, he cited federal government initiatives to enhance Canada’s autism evidence base and raised public awareness. Mr. Albrecht also emphasized the importance of bringing together researchers, clinicians, policy-makers, parents and other key stakeholders to identify effective treatment and diagnostic techniques.

I am grateful to Mr. Albrecht for recognizing and championing the purpose of this bill, and to other members of Parliament who rose to endorse it. One of them is my friend, Conservative M.P. Mike Lake. We have talked a lot and we have shared a lot of experiences. He has talked candidly about his home life with his teenage son, Jaden. Jaden is autistic. You have seen Jaden on the Hill with his dad. No one but a parent can help us really understand the day-in, day-out challenges of raising a child with this complex disorder. I was generally moved by Mike and his homage to his wife and daughter, his gratitude for their constant patience and love.

It is those personal connections we have with autism that really move us. Though most honourable senators here today might not have known what autism was 20 years ago, I would say that every one of us now knows at least one child with a form of autism. Whether that child is a family member or a son or a daughter of a friend, we feel the proximity of the disorder.

If you have talked to anyone with a child with autism, you most certainly must have been touched by their stories. At speaking engagements that take me across the country, I meet families coping with autism on an hourly, daily, weekly, yearly basis. I have heard stories of parents desperately waiting to get their children into therapy programs. I have met parents, and I am sure many in this house know of parents, who have just uprooted their lives. Friends of mine in Atlantic Canada who are not getting the services in one particular province have to go west, where there are better services in Alberta and British Columbia. It is not about the oil; it is about the family. It is about the child.

All the worries and trials are distinct, except this one: What will happen to my child when I can no longer carry the load, when I am no longer here? It is a thought that haunts each and every parent of a child with autism, and their concern is legitimate. The care and housing options for autistic adults in this country are at best meagre.

This bill has only one operative clause. It will not change the reality of families affected by autism. They will still have to fight to get treatments and make sacrifices to pay for these treatments. However, I firmly believe that when the argument is made that this is a provincial jurisdiction, that this belongs to the provinces — no, this belongs to Canada. I really believe that. The time has come for a Marshall Plan dealing with autism where federal health officials, the federal health minister and those involved in social services in the provinces actually sit down and put together a national autism strategy so that more money, millions more, can be spent on research. To me, there are no borders when it comes to autism. This is a national issue.

What this modest bill can do, though, is show the families that they matter, autism matters, that the people of Canada respect them for doing the best they can in the name of their children, brothers, sisters, grandchildren, nieces and nephews. World Autism Awareness Day will also spark awareness among the citizens of this country about autism, its symptoms, the people affected by it and the need to address the crisis it has become.

I want to thank honourable senators for your attention and for sharing in the effort we can all make to pass this bill in time to celebrate World Autism Awareness Day on April 2, 2012.