Health Committee on Oct. 16th, 2012

[The Chair, Conservative, Joy Smith]

Could we ask the members to please be seated. We will begin.

I would like to welcome Senator Munson. Thank you so much for being here today.

Pursuant to the order of reference of Wednesday, June 20, 2012, Bill S-206, An Act respecting World Autism Awareness Day, I want to welcome you, Senator Munson.

We will begin.

[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.

[The Chair, Conservative, Joy Smith]

Thank you, Senator Munson.

I would ask the rest of the witnesses to approach the table and take your seats in front of the microphone so we can hear your presentations.

Now we're going into the second part of our witness presentation.

Thank you so much, Senator Munson, for your presentation as sponsor of the bill. It was very insightful to hear your presentation. I thank you for that.

We have, from the Canadian Institutes of Health Research, Jane Aubin, and Nathalie Gendron, assistant director. Welcome.

From Autism Society Canada, we have Richard Burelle, executive director. Welcome.

From Autism Ontario, we have Margaret Spoelstra. She is the executive director. Welcome. I'm glad you could come.

On video conference, joining us soon from Autism Speaks Canada, we will have Suzanne Lanthier. She is a member of the board of directors. I assume she will be joining us very shortly.

Can we begin, please, with the Canadian Institutes of Health Research?

Will you be sharing your time with Nathalie, Ms. Aubin?

[Dr. Jane Aubin, Chief Scientific Officer and Vice-President, Research and Knowledge Translation, Canadian Institutes of Health Research]

I'll give the speech and Nathalie may also participate in answering questions.

[The Chair, Conservative, Joy Smith]

You know that you have a five-minute presentation.

Thank you.

[Dr. Jane Aubin]

Thank you very much, Madam Chair and honourable members, for the opportunity to address you today regarding the work of the federal health portfolio on autism spectrum disorders, or ASD.

Let me say at the outset that I am not an expert on ASD. My own research through the University of Toronto deals with musculoskeletal health and arthritis. But as the chief scientific officer for the Canadian Institutes of Health Research, or CIHR, I am pleased to bring you information about federal ASD-related projects. My colleague, Dr. Nathalie Gendron, is with me today as a subject-matter expert.

Your deliberations are about ways to raise awareness of ASD, and I submit to you that the research and surveillance activities supported by the health portfolio provide the facts on which to build this new and growing awareness. At the same time, drawing increased public attention to ASD serves to highlight the impact of research and to generate more support for it.

If we are to do justice to this issue by raising more public awareness about it, one of the most important things we can do is to continue to build our knowledge base and to apply that knowledge to ease the path of people with ASD and their families. The Government of Canada supports a number of activities aimed at doing just that. For instance, my colleagues at the Public Health Agency of Canada are developing a national surveillance mechanism to systematically collect essential data to better understand how many Canadians are living with ASD, and their circumstances.

To ensure that the surveillance system is robust and useful, the agency consulted with provincial and territorial governments to determine priorities and data availability. It has also established an expert advisory committee to review information collected from the provinces and territories and to help identify indicators and appropriate models. This committee includes representatives from government, universities, health care, and community groups.

With respect to advancing the science of ASD, the Government of Canada has made significant investments through the Canadian Institutes of Health Research. Since its inception in 2000, CIHR has invested nearly $44 million in autism-related research, with $5.8 million invested this year alone.

Our work in the area of ASD is led by our Institute of Neurosciences, Mental Health and Addiction, but several of our other institutes are also involved. This helps to bring to bear many academic disciplines and perspectives on this very complex problem.

Through CIHR, the Government of Canada has recently established a chair in ASD treatment and care research. The purpose of the chair is to support an early career investigator to bring innovative approaches to the treatment and/or care of ASD. Partners for the chair competition are CIHR; Autism Speaks Canada; the Canadian Autism Spectrum Disorders Alliance; Health Canada; NeuroDevNet, which is one of the national centres of excellence; and the Sinneave Family Foundation.

We are delighted that Dr. Jonathan Weiss of York University has accepted the chair appointment, following a rigorous selection process that was administered by CIHR. Dr. Weiss is a licensed clinical psychologist and a rising star in ASD research.

In addition to this new chair position, CIHR is supporting a range of other research projects into ASD and activities through our regular granting mechanisms. People like Dr. Adrienne Perry at York University, Dr. Susan Bryson at McMaster, and Dr. Isabel Smith at the IWK Health Centre in Halifax, among others, are all contributing to the ASD knowledge base.

Other CIHR research programs are aimed at health services. For instance, the CIHR signature initiative in community-based primary health care encourages researchers to investigate the ways in which health care services are structured, regulated, managed, financed, used, and delivered. For people living with ASD and their families, better service delivery could make all the difference.

Finally, in our convenor role, CIHR supported the international meeting for autism research and a stakeholder-focused workshop held in Toronto in May of this year.

CIHR is also pleased to reach out to stakeholders and interested members of the public regarding ASD. We'll be doing this again on October 29 in Edmonton, when the CIHR Institute of Neurosciences, Mental Health and Addiction hosts a Café Scientifique on ASD. This will be a great opportunity for raising awareness and sharing the latest in scientific research on ASD in an informal and comfortable setting.

Madam Chair, honourable members, I would like to close simply by emphasizing the fact that the efforts I have outlined are not solutions in themselves. Rather, they are interdependent activities that get us closer to a solution. Our approach must continue to combine work on causes, treatments, and care with surveillance and sustained efforts at raising awareness.

I thank you very much for the opportunity to speak to you today. I'll be happy to answer questions later.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you very much, Ms. Aubin.

We'll now go to Autism Society Canada, to Mr. Richard Burelle, please.

[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.

[The Chair, Conservative, Joy Smith]

Thank you for your heartfelt presentation. It certainly brings to mind how real the challenges are around autism. Thank you.

We'll now speak with Autism Ontario and Margaret Spoelstra, executive director. Thank you for coming, Margaret.

[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.

[The Chair, Conservative, Joy Smith]

I thank you very much for your presentation, Margaret.

We are to have by video conference Suzanne Lanthier of Autism Speaks Canada, but she has not arrived yet, so we will go into our five-minute question-and-answer rounds. We want to make sure that we get through this bill, because we have committee business, as promised, and we have the clause-by-clause.

Having said that, we will begin with Ms. Davies, for five minutes, please.

[Libby Davies, NDP, Vancouver East, BC]

Thank you very much, Chair.

First of all, to Senator Munson, thank you very much for coming here today to present your bill, and to the witnesses who all did an amazing job of giving us a real sense of what this issue is about.

We're only spending one short meeting on this, and it's not enough, so I'll get into it right away. Obviously, we support the bill. To raise awareness is very important; that's a given.

I want to read out an e-mail that I received from a parent who has three daughters who are on the autism spectrum. Her name is Amy. What she wrote to me was that

'Autism Awareness' is done and advocated for with the best of intentions. However, it is not something that is actually for autistic people and their families. They are already very aware.

She's saying that awareness is not enough:

Awareness needs to be matched by meaningful action. It must lead to appropriate lifespan supports and services across this country that allow autistic people and their families to reach their fullest potential.

You've all spoken about that. I want to get at the issue of what more we should be doing.

Senator, your bill is about an awareness day. I know that the Senate committee you instigated in 2007 made a number of recommendations, one of which was calling for the federal government, in collaboration with the provinces and territories, to establish a comprehensive national autism spectrum disorder strategy, including treatment, supports, and so on. I believe the Conservative government, in their platform in either 2006 or 2008, also promised such a strategy.

I wonder whether you have had any response to the Senate committee report or whether any of the other organizations are aware of any further support. It seems to me that the awareness is very important, but that unless we follow through on the need for a strategy and the treatments and supports to families, we're not getting nearly as far as we must get.

Could you respond to that?

[Jim Munson]

I'll talk briefly, and perhaps the other witnesses can say a few words.

Meaningful action is what is extremely important. This is not the last step; this is the beginning of many steps, from my perspective, of what we're all trying to do in dealing with it.

As I said, the government's new surveillance and monitoring program is a good first step. Also, dealing with the issue of the disability payments, many grandparents and others have come to me and said that this is a really good step.

But those are only steps. I fully believe, and said in my statement about aboriginal youth, that, my goodness, children are slipping through the cracks every day in the aboriginal community alone. Why couldn't that be a second step for a national government's involvement?

I also believe that it's time to think outside the box. I know there are provincial governments that are delivering autism services as well as they can, but it's about time to think outside the box. We have the terminology that “it's a provincial responsibility”. It's Canada's responsibility.

I feel that whoever is in power should think outside the box and bring people together in a room like this, with scientists and researchers and other politicians from all spectra, to sit down to hammer out something that can work. I really believe that—and not only for autism, but for those with other severe intellectual disabilities.

I'm originally from Atlantic Canada—I'm from northern New Brunswick—and I'm an Ontario senator, but I'm a Canadian. As a Canadian, I'm tired of hearing about people who are getting on little airplanes in northern New Brunswick and travelling to Alberta and other provinces to get treatment, which lasts from zero to the age of 18, with a diagnosis.... You name it.

We have to get there, and I think what we're all trying to do is get there. I think we have a moral, ethical, and a loving obligation to get there.

[Libby Davies, NDP, Vancouver East, BC]

I totally agree with you, and let's hope that a federal strategy is coming, as promised.

I want to raise the issue of gender. I don't know if any of the organizations here today have further information on the issue, particularly on young girls who are diagnosed a number of years later, so that they often miss out on the early intervention. Very little research is done on this, but there is some research.

I wonder if some of the organizations have looked at the issue of gender, of girls versus boys, and how we're falling behind in intervention, support, and treatment for young girls because they're often not getting diagnosed early enough.

Could you address this briefly?

[The Chair, Conservative, Joy Smith]

I'm sorry, I'm trying to wind this up.

Margaret, could you quickly respond to that?

[Margaret Spoelstra]

Sure.

You're absolutely right that girls are underdiagnosed. Part of the diagnostic challenge is because girls are socialized much earlier on how they should behave, and they often go under the radar. Unless there is a particular behavioural response, they tend not to be recognized for that, but underneath a very quiet or calm exterior are often significant challenges and mental health issues that emerge later on in their lives.

Autism Ontario runs girls groups, very specifically, and brings girls together to help them deal with significant social pressures. Girls are significantly at risk at school, for date rape, and for other social challenges, in relationships as they get older, and even as they become young women making choices.

[The Chair, Conservative, Joy Smith]

Thank you, Margaret.

We'll now go to Dr. Carrie and Mr. Lobb. They will share their time.

Dr. Carrie, go ahead.

[Colin Carrie, Conservative, Oshawa, ON]

Thank you, Madam Chair.

I want to thank the witnesses for being here. I particularly want to thank Senator Munson for all the good work he has done. People around the table know our family was one of those families that had to fight the school board. My wife put her career on hold to help with our son, who was diagnosed with Asperger's. We went for the private school, and I'm happy to say he started university this year. So with a lot of hard work and sacrifice.... The success stories are out there.

With the system we have in Canada, there are challenges with provincial–federal jurisdiction. Dr. Aubin, you mentioned the steps the government has taken. Senator Munson said we have to start thinking outside the box, that we have to start working on science and research.

Could you talk about the role of the federal government and the role of the provinces and territories in delivering health services for people with autism spectrum disorder in Canada?

[Dr. Jane Aubin]

Thank you very much for your question.

Let me start by reiterating that CIHR, as a federal funder, funds the best research across the nation. It covers the most basic research on the genetics behind susceptibility to autism, to help with early diagnosis and early intervention. At a national level, we are funding across the country.

We play a very important convenor role as well. What I mean is that we don't just convene researchers to share their research findings and build upon them; we convene partners. We convene provincial partners. We convene the policy makers with researchers, to share and act upon the evidence we require. It's at a multiple level that CIHR and its other health portfolio partners coordinate our activities and bring together the information with partners.

I hope that speaks to some of what you're interested in knowing, and I'm happy to speak further.

[Ben Lobb, Conservative, Huron—Bruce, ON]

Ms. Spoelstra, grandparents in my riding have a grandchild in the Niagara region. I want to run through their scenario briefly and explain if that is in fact the situation, and how we could improve the timeframe.

They knew their grandson, at 12 months, had a problem. It took 16 months for him to be diagnosed as severely autistic. They want their grandson and their son to be in the intensive behavioural intervention program; they've been told it takes three to five years to receive that treatment. They are number 750 on the list, so if that's the present-day scenario in Ontario, obviously that's unacceptable.

What can we do to get that number down to what is realistic? What else can we do? I'm sure there are hundreds of families in Ontario in the same situation.

[Margaret Spoelstra]

You're absolutely right, that situation is unacceptable. We hear that story from families across the province on a daily basis, and they despair. To have a number like 700, or whatever, just says that child is not going to receive the best intervention we have to help him or her at this stage in their life, and to know that window is closing at a time when the plasticity of the brain is at a stage when it can accept lots of information and change. We know, in fact, that this treatment can have a significant influence on how that child develops for the rest of its life.

First of all, my heart goes out to those families. They should not feel that they're competing with another family whose kid did get on that list. All of those children should have access—all of them, not only the ones who are eligible for the service—to that early assessment and intervention at a time when it makes the most difference in their lives.

It is at least, in part, a funding matter, but it's also a policy matter and thinking about some ways to adjust the system, so that there is fairness for more families to have access to that. Also, it takes training, not only in those early years.... One of the biggest fears families have is exiting that system and moving into the school system—where the training for the professionals is not as it should be—so that families can feel confident that those same strong evidence-based practices are being implemented in the school years, and into adult life as well.

[The Chair, Conservative, Joy Smith]

Thank you, Ms. Spoelstra, for your insightful comments.

Now we'll go to Mr. Pacetti, please.

[Massimo Pacetti, Liberal, Saint-Léonard—Saint-Michel, QC]

Thank you, Madam Chairman.

Thank you to the witnesses.

We all have stories about autism, so I don't think we need to get into that. You've got support around the table, so I'll try to focus more on educating myself on certain aspects.

Mr. Burelle, you referred to the fact that there's inequality in the services between provinces. Can you give me a couple of quick examples, if possible?

[Richard Burelle]

I believe there's no study currently comparing the services across the country. What the Public Health Agency of Canada is trying to do is put in a surveillance program to actually get Canadian data on the prevalence of autism across Canada, which is a first step. We'll then be able to identify if are there pockets, if there are areas of the country where perhaps we need more services.

The Autism Society of Canada has proposed a pilot project in order to create a needs assessment across Canada. If we could create this needs assessment where it would actually be a study across Canada to figure out where the services are, in what areas, and if we could superimpose that upon the surveillance program, the gaps would clearly rise to the top.

[Massimo Pacetti, Liberal, Saint-Léonard—Saint-Michel, QC]

I don't mean to interrupt you; it's because we have limited time.

If the bill were to be passed, would this help that particular cause?