Subcommittee on Neurological Disease Committee on Dec. 9th, 2010

[The Chair, Conservative, Joy Smith]

Thank you.

Now we will go to Autism Speaks Canada, with Suzanne.

[Suzanne Lanthier, Executive Director, Autism Speaks Canada]

Thank you, Madam Chair.

I want to thank you and all of the members of the subcommittee for including autism on your agenda today. To have autism formally and finally recognized as a health issue, and one that needs to be included in the neuroscience agenda, is indeed a significant step in the right direction.

Autism spectrum disorders are now being diagnosed at a rate of one in every one hundred and ten children. One in seventy boys is being diagnosed with an ASD. I should note that these statistics are quoted from prevalence studies generated, as Laurie has mentioned, by the CDC in the United States. Dr. Eric Fombonne, who is the director of psychiatry at Montreal Children's Hospital and a world-renowned autism researcher with particular expertise in the field of epidemiology, confirms that the statistics are not significantly different here in Canada.

We don't know with any certainty how many individuals live with autism in Canada. We do know that the federal government, through the Public Health Agency of Canada, is embarking on a surveillance initiative that will ultimately provide us with a clearer picture. This is another step in the right direction, and we, again, applaud this necessary investment.

We do know that autism is a lifelong condition, and when you factor in immediate and extended families, employers, teachers, therapists, neighbours, and friends, it's very difficult to find someone who is not directly or indirectly impacted by autism. It is an epidemic and one that is not going away.

Autism is an incredibly heterogeneous disorder that impacts every individual in a unique way. This makes it very difficult to describe and even more difficult to study in a research lab.

Despite its heterogeneity, there are commonalities that are faced by Canadian families with a loved one who is on the autism spectrum. There are lengthy wait lists to receive a diagnosis, sometimes up to two years, depending on where you live in Canada--two years, just to get a piece of paper that says your child has autism so that you then have the privilege of sitting on a wait list for even longer for treatment. If you have personal wealth, you could access a privately funded diagnosis, which will cost you between $2,000 and $4,000, depending on where you live in Canada.

Then the real fun begins. Then the torture begins as you sit on a wait list for treatment. And that's if you're lucky enough to live in an area of Canada that provides the type of treatment that is required by your child, and then lucky enough again if you qualify to receive those treatments.

As an example, if you live in Nova Scotia as a family, your name is put into a lottery and you wait to see if your name comes up in the lottery to receive medically necessary treatment for your child's autism. If you live in Ontario, you are judged upon how severe your child's autism is to see if you qualify for services.

If you'll allow me, I have this comparison. You have two families, one with a child with cancer and another with a child with cancer. For this family with the child with cancer, the cancer is not maybe as grave an issue as it is for this other child's family. Who makes that determination? I don't know. But this is the case with autism, that the families who have a higher-functioning child are denied access to treatment. They're not even given the opportunity to sit on a waiting list.

We know that the sooner we recognize the early warning signs and the sooner we get a diagnosis and begin intensive treatments, the better opportunity we provide for a productive, meaningful life that will be less of an economic burden to society in the future. “Pay now or pay later” actually should be reworded to be “pay now or pay much more later”. It's just that simple. The costs of providing timely diagnosis and effective intervention may be high when viewed through the overall lens of increasing health costs, but the cost of doing nothing or doing not enough is even higher. There have been some cost-benefit analyses conducted in the U.S. that suggest early intervention could save one million dollars per individual per lifetime.

Too many children arrive on the steps of their local public school to start kindergarten not having received any form of treatment or one minute of therapy. We are setting our children up for failure. We are setting our teachers up for failure, and we are undermining the quality of education of all students. And ultimately, our families are failing as well.

There is extreme financial and emotional hardship placed on families who receive this devastating diagnosis, significant stress placed on the siblings of affected children, and, of course, the drain on Canada's workforce when parents must leave work temporarily or permanently to stay at home to care for their child who can no longer be accommodated in a typical preschool, daycare, or school-based environment.

Then our kids grow up. There are thousands of adults living with an ASD with virtually no access to any meaningful employment or community services. That's not to say that our kids don't have the potential; they do. They are just not given the opportunity.

In a recent supplement of Autism Speaks Canada published in The Globe and Mail last April in recognition of World Autism Awareness Day, Dr. Fombonne called the autism situation in Canada a disaster. He is not alone in his assessment.

So that's the bad news. There is good news.

Where we excel in this country is in the global research agenda. Canadian researchers from coast to coast continue to play a critical role in global consortiums that are making significant headway in all key areas of autism research: causes, diagnosis, and treatment. A pillar of our mission at Autism Speaks is to accelerate the pace of autism research, and this remains our key focus. In the last five years, over $142.5 million has been committed by Autism Speaks to global research initiatives through 2014, and that includes a significant investment right here in Canada.

So what do we know? What has been the return on our investment? We have made significant progress over the last five years in the area of early diagnosis. Through research led by Canadians in the baby sibling studies, we now see some of the earliest warning signs in children as young as eight months, and we've used this research to empower parents who suspect their child may be showing some early warning signs to not take no for an answer.

The heightened awareness of autism through awareness campaigns generated by Autism Speaks, coupled with resources now available to families, means that when family doctors tell parents to wait and see, parents know not to wait, because waiting could mean years on a waiting list for diagnosis and for treatment. We've seen remarkable results in early interventions through grant funding provided by Autism Speaks Canada and its Toddler Treatment Network, which is led by Canadians Dr. Wendy Roberts and Dr. Susan Bryson. We know that with timely, appropriate, innovative, flexible, and child-focused treatments we can change the trajectory of the development of some children who show early warning signs of autism.

We have identified some ASD-causing genes and copy number variations that could account for about 15% of individuals with autism. We know that autism is likely not caused by one gene, but by hundreds of genes. If you ask Dr. Stephen Scherer and Dr. Peter Szatmari, two Canadians who lead the global autism genome project, what is holding us back from even more discoveries in the area of genetics, the answer is simple—money.

I've included a recent summary of a special two-day conference on autism held prior to the annual meeting of the Society for Neuroscience in San Diego, giving scientists an opportunity to focus on ASD and share ideas. The conference was called “The Emerging Neuroscience of Autism Spectrum Disorders: Etiologic Insights; Treatment Opportunities”, and offered an overview of current autism research from many of the world's leading autism researchers. One of the keynote speakers was Dr. Stephen Scherer, a Canadian.

Individuals with autism invariably suffer from a host of co-morbid medical issues, seizure disorders, GI issues, sleep disorders, gross- and fine-motor development problems, and nutritional deficits. Until recently these medical issues were often treated in isolation from autism. ATN, the Autism Treatment Network, is funded by Autism Speaks and is developing best practices for treatment of medical issues associated with autism.

Without sounding too much like a broken record and a very un-Canadian way of giving ourselves another pat on the back, it has to be noted that one of the key sites of the global ATN is right here in Canada, jointly led by Sick Kids, Bloorview, and Surrey Place Centre in Toronto. And one of the principal investigators is sitting right here beside me, Dr. Wendy Roberts.

We hope to expand the Canadian presence of the ATN to other sites in this country and continue to grow this important field of study that gives families access to a range of specialty practitioners in each of these medical areas and also informs the global research agenda.

Each year, Autism Speaks publishes the top 10 research innovations in autism. I've included the 2009 version in the folders I've provided to the clerk, and 2010 will certainly be another extraordinary year.

Autism Speaks holds its many research funding partnerships with CIHR in the highest esteem and showcases its public-private partnership all over the world. At Autism Speaks we know that partnership and collaboration will ultimately lead us to the answers faster and more efficiently.

To conclude my introductory remarks, there are clearly some ways that the federal government can have an impact on the autism community.

First, it can continue and grow its support of research in all areas of the study—causes, diagnoses, treatment, biology, and knowledge transfer of the research results—thereby attracting and supporting emerging scientists to work in this very exciting and fast-paced field.

It can continue its efforts through the Public Health Agency to initiate a national surveillance program.

Moreover, it can make the development of a national autism strategy a priority, using willing and respected partners, like my colleagues and I, to garner stakeholder input to ensure that identified priorities are addressed and put into action.

At Autism Speaks Canada, our goals are very simple. We will continue to raise funds to support autism research in Canada and to partner with CIHR to leverage the support needed to find the answers to the autism puzzle.

We will continue to raise awareness of autism, in particular the early warning signs. Awareness will also heighten the consciousness of the unaffected population to enhance its acceptance of the incredible autism community and the value that each individual with autism brings to society.

We will continue to raise money to fund community grants and other family services initiatives, such as our First 100 Days Kit.

We will work with current partners across the country to further enhance our autism resource database to provide quick, easy, and reliable access to information on all things about autism in Canada—anything from where to get a diagnosis, where to access funding, where to find a speech pathologist or an occupational therapist, all the way through to where to find a dentist who specializes in special needs populations.

It's our goal to make the path, which is a very windy path right now for families, as straight as we possibly can. We need to do this for our families. We need to do this for our teachers, for our researchers, and for our service providers.

We will continue to advocate and be a willing partner with all levels of government in developing strategies and system changes to reduce wait times for diagnosis, to ensure immediate access to intensive evidence-based treatments that are flexible and meet the needs of each individual child, and to ensure that these treatments and supports continue across someone's lifespan, and are not cut off by their age.

We will continue to advocate and be a willing partner with all levels of government in the discussions of how we service the needs of our adult and our caregiver communities. This is a huge, huge void in Canada.

This is a very large and very daunting task—

[The Chair, Conservative, Joy Smith]

Suzanne, excuse me, I've given you way over our normal time—

[Suzanne Lanthier]

Okay.

[The Chair, Conservative, Joy Smith]

We do need time for questions, so do you mind wrapping up?

[Suzanne Lanthier]

Sure. I'm pretty much done anyway, so I will stop right here.

[The Chair, Conservative, Joy Smith]

Thank you.

This is a very important topic that the committee has undertaken simply because we've been made aware of it. I knew about it long before I came to Parliament because I taught children with autism. My colleague Mike Lake has also done a lot in this area to educate all of us.

There's just one sensitive area that I wish perhaps we might be aware of. I'm just going to ask that we not compare autism with a disease like cancer. This is a very, very important topic, and I know it hasn't been up at the forefront the way cancer has, but many children have lost their lives because they've been on waiting lists. I saw it first-hand this past year.

So this disease is something that has never been recognized, but I would ask that we keep the discussion to autism, and not compare and contrast it with another disease, if we can.

Thank you.

Ms. Roberts.

[Dr. Wendy Roberts, Pediatrician, Canadian Paediatric Society]

Thank you, Madam Chair.

I am delighted to be able to represent the Canadian Paediatric Society. I'm a developmental pediatrician, and the Canadian Paediatric Society has an increasing corps of developmental pediatrics, as in new developmental pediatricians, a new subspecialty in Canada in the last few years. It's a subspecialty that has emerged because the demands on general pediatricians for information about developmental disorders has been so great.

Many children, particularly children with autism, fall between mental health services on the one hand and general medical services on the other. Nobody has really been a champion for those developmental issues, which of course are associated with lots of other medical issues.

Really only in the last 10 to 15 years has autism honestly been believed to be a disorder that has major effects on the brain, and right from the time of earliest brain development has been making a difference.

I remember the first rounds that I organized on autism at SickKids. I think it was about 1993 or 1994, and we had Dr. Margaret Bauman, a very well-known neurologist in Boston, who has really, I think, changed the world in terms of understanding the neuroanatomy of autism. It was the first time I had evidence that I felt my pediatric colleagues would accept that was hard-core enough to show that the brain was developing differently. She had pictures of slices of the brain that she had sat for thousands of hours analyzing, one microscope compared to another--typical autism, typical autism--and she showed the very specific parts in the central parts of the brain and the hind brain that were clearly different and consistently different in individuals with autism, and changed in a consistent way across the life span.

That was, for me, a big step, and I think since then the research has gradually ramped up. Canada has been a real leader in terms of funding research. Autism Speaks often gives it a push first, and then we've got CIHR funding to really lead the understanding of the etiology, particularly in the genetics.

The genetics is one big piece. The complementary part of the CIHR autism research training grant program is really growing young scientists, in a wonderful way, to establish careers in autism.

Our baby siblings research is now across Canada, from Edmonton out to Halifax, and we have the pathways to better outcomes trajectories project, with Peter Szatmari leading our group. We're now almost at eight, so we'll know how children diagnosed between two and four in different provinces actually look in terms of their outcomes: school, social, family, and all the different effects. We're just starting to collect the A-tier data now.

That's going to give us a chance to see across provinces and across treatment interventions, across severity of autism, and across intelligence, all the medical factors. We're going to understand outcomes in a much better way. It's the first really big natural history study, and I think Canada has been a leader in funding that, which is great, thanks to CIHR and to Autism Speaks.

I think that the heterogeneity that Suzanne was talking about is a big thing. Kids all look different. That has made training of our front-line pediatricians and family doctors a really hard job to do. We're trying to get away from the old situation where parents were saying, “If only our family doctor had listened to us two years ago, we would have been so much further ahead.” In fact, I had a parent recently who said to the doctor, “If you had just read the sign on the back of your door, we wouldn't have been sitting around for an extra year waiting for our child to get a diagnosis.”

So we're trying. We know that there are many medical concerns. We were so happy to become the Autism Treatment Network site. We've got 2,400 kids in that registry now across North America. We have constant phone calls with colleagues across North America, looking at how to establish guidelines to deal with the epilepsy in up to 40% of kids, to deal with the esophageal problems, the reflux, things that stop kids from eating, the most severe constipation we've ever seen in our lives.

We're finding techniques. We're finding ways to help with the sleep problems. We know that parents, when they go to work and have been up most of the night with kids screaming and different kinds of sleep problems, aren't productive citizens. They're also the parents who are waiting for the phone to ring at any minute saying, “Come and take your kid home from school. He's too aggressive. He's having a bad day. We can't cope with him anymore.”

We know that there's a huge loss in the workforce from parents with autism struggling with their kids.

I must say that in the majority of cases where I see severe autism, one or the other parent has had to stop working. At a time when they need the most money--because they have to buy treatment if they're going to get it, in the majority of cases, unfortunately--they have the least money coming in. I see many grandparents with big mortgages now on their houses because of trying to get in on that early intervention piece.

Pediatricians are working on it. I think our Autism Treatment Network is pulling in a lot more pediatricians to see how they can help. But they very much recognize that parents don't have a single number to call to access service. They also don't have a single number to call to say that this is definitely a kid with autism; now can we have a service system that will pick him or her up?

In fact, in the system, we are funded to do assessments. A father said to me recently--I actually had underestimated how much he was going to contribute to our feedback session--“So you're telling me that you're putting my kid into a different boat, and you're now about to cut the rope and put me out into a different ocean with no GPS?” I couldn't give him a single number that would....

You asked us not to refer to other disorders, so I won't talk about the father who runs a big clinic for another childhood disorder, who said to me, “Wendy, I wouldn't do this in my part of medicine. How can you live with yourself doing it this way?” That's just a little anecdote.

What do we need? We desperately need an integrated service system that anybody with any degree of autism can get some guidance from. The children who do well would often do a lot better and need nothing if we could give them help. If we could get in there early and work with the so-called higher functioning kids, it would probably cost the system nothing in the future. That's probably somewhere between 10% and 20%, but that's still a significant number of dollars.

An integrated service system will only work if we do the knowledge translation work to have everybody educated at every level of the community.

Actually, coming from our earliest-signs research, we're picking up kids somewhere between nine and 18 months, often, as they become silent, as their sounds change to a higher-pitched sound, as they stop using words, and as they don't respond to their names. There are all those early signs we're picking up.

I think the way to really improve outcomes and to improve the standard of child development in Canada—we're down lower on the list, among developed countries, in terms of the standards for early child development—is to have every daycare provider and early interventionist across Canada knowledgeable about the early signs of autism and ready to teach parents right off the bat, the minute a red flag appears, well before you would put them on any kind of a wait-list, which may actually delay things two or three years.

There are many services mandated across Canada and funded across Canada. If that early interventionist and infant development person could get involved pre-diagnosis and turn things around, as we've shown in our 12 to 15 month early-intervention study, we would actually, in doing that training of infant development and daycare people and in supplementing that daycare system for the 20% of parents who won't recognize the signs and won't be able to do it themselves, improve early child development for all Canadians. There would be a huge ripple effect in terms of understanding what really constitutes good development of social communication skills. I think there's a huge win-win there in terms of so-called treatment before diagnosis.

Although I totally understand that we're working hard to try to get wait-lists down, the discouraging thing is that now a parent can recognize those early signs between 15 and 18 months, wait at least a year, in the Toronto area, anyway, and then wait another two or three years. So they've gotten the early signs at 18 months, but at five and in school, as Suzanne has said, they have had nothing.

Integrated services across the ministries is the other thing I see people struggling with in the different provinces. That is where we need kind of a lead. You get assessment through health. You have to get intervention through child and youth services. And then you really need the service within the education system. We have a huge amount of work to do there. Then you get out of school at 18 to 21 and fall off the cliff. That's when many parents say that they now have to stay at home, because there is no workplace, no vocational setting, to go to.

It's access all across the system.

From a health point of view, the other piece where I think we need leadership is in mental health. Up to 40% of individuals with autism will end up with mental health disorders, diagnosable anxiety, depression; a much smaller number may go on to have some signs of psychosis. Many mental health systems will say, sorry, we don't accept autism because our staff doesn't know how to deal with it.

We hear that from almost every mental health institution across the country. There has to be huge knowledge translation in the mental health world. And I take responsibility; we need to work more with our psychiatric colleagues to kind of “accept” autism. There's an uneasy issue around accepting autism. I think because it's so poorly understood, that really impacts access to care. So that's another area where we need research.

Our research has grown phenomenally. The public-private partnership with agencies such as Autism Speaks has made a huge difference, but we need to increase it to become more specific. Just as another anecdote, in terms of our genetic research, when we tell parents we have found a mutation that we believe links to their child's autism, every single parent, particularly mothers, will sit back and say, “Oh, I am so glad to hear it's biological, because inside I really was still blaming myself.”

So I think that's where we need answers. We don't have specific medications to treat many of the symptoms of autism. We borrow from all the other disorders. We need answers that are going to change treatment and outcomes and have a huge impact on all the lives that are affected across the country.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Roberts.

It's been really compelling to listen to your presentations this morning. For anybody who has been touched with autism, whether it's a family or a teacher or whatever, these frustrations are certainly there. Some of the solutions are very compelling and really common sense.

Now we'll go into our first round of seven minutes, questions and answers.

We'll begin with Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

Thank you to all the witnesses.

I'm really glad our colleague Mike Lake has joined us, and particularly Jaden Lake.

Thank you for your science, your fighting so hard for families, and your courage--your courage to say that this is an epidemic and this is a disaster.

I have a number of requests so that we get some real recommendations for our report, then I'll ask some broad, open-ended questions.

The first thing I would ask Dr. Roberts and Ms. Lanthier is if you believe a national strategy is needed in Canada. I would ask that you table with the committee your key components of what that strategy would be, including how much money is needed for treatment as well as for research. That would be my first request.

Then I'll ask you all if you're willing to table with the committee all examples you're aware of, of national strategies around the world. What is working? Some of the strategies will have stuff that's working. What is not working? Let's get to what we need to know, please.

I think the wait times are so important. You've highlighted them, but if we have a report, what are the wait times for diagnosis across the country? I have real difficulty in my riding. I've worked for 30 years with children who live with ASDs, and I love my kids. We just can't get the diagnosis. We have a real challenge, because I have one of the most diverse ridings in the country. We have a large newcomer population. We now have a Somali population in which this can only be described as an epidemic. They've now started an organization. They had a picnic for the children this summer. We talk here about arriving at kindergarten with no treatment. But I have 18-year-olds who have never had any treatment. That is the reality.

Perhaps we could table with the committee a status report on the wait times for diagnosis.

The last thing I'll ask that you table with the committee is what the average yearly costs are and whether it's for ABA, IBI, or other treatments. As you say, if you want that early treatment, you're often going to be forced to pay. What is that across the country? There is a fairness piece here.

To begin with the open-ended questions--I don't know where to start--I'll ask you, Dr. Roberts, what are the key gaps for services to children, and what recommendations would you make?

[Dr. Wendy Roberts]

I can start.

I think one of the big gaps is access to the appropriate kind of intervention. We have this discrepancy in models across the country where some provinces give a set amount of money to a family. For autism, $20,000 will buy some services.

I would say a lot of parents who have moderate incomes are spending over $50,000, and many with lots of money are spending over $100,000. So there are huge differences in what families are able to get. Families in, say, Ontario, who don't qualify for the severe category get nothing unless there's some respite special services money, but even that was frozen this last year. They would be thrilled to get $20,000. We know that some families have moved to, say, Alberta, because they're more likely--or were in the past, at least--to get some of those solid dollars that they could count on.

I think a huge gap is access for everybody to some form of intervention. I think another gap is a consistent approach across the education system. We could put a lot more of the treatment dollars, IBI, ABA dollars, the behavioural intervention dollars, into preschool years and after-school programs, if parents had confidence that the education system was trained to provide the specialized kind of behaviourally delivered programs the children need to varying degrees.

Until we have confidence that the education system can do that, parents will continue to feel that they have to buy a lot of services or try to access services outside of the educational system.

If we had integration of the ministries to provide those services, that would be a key part, I think, of what the national strategy needs to be, but it's a long, slow process to get every teacher and every teacher's assistant trained in the behavioural techniques needed.

I'd like to see educational assistants who specialized in autism and had training so that parents could say “Okay, I know the class my child is going in has a teacher and an assistant and a support team that all really know autism, and the treatment will go on at school. I can just be a parent at home.”

The other big gap, and it's an enormous vacuum, is when children leave school. We have more and more young people...some going on to college and university, but even then still having nowhere that they can fit into in terms of the workplace and the community. I believe it is possible to develop services that would meet the needs of children and young adults at all different levels of capability so that they could feel like worthwhile citizens.

[The Chair, Conservative, Joy Smith]

Thank you very much.

Dr. Duncan, your time is up.

Mr. Dufour.

[Nicolas Dufour, Bloc, Repentigny, QC]

Thank you very much, Madam Chair.

Thank you very much to all the witnesses for being here.

You provided us with a lot of information and we really appreciate it. I have a question about tax incentives. I noticed that one of the solutions proposed by the Canadian Autism Spectrum Disorders Alliance to the federal government deals with tax credit incentives.

Do the provinces have tax incentives like that? Have you seen something similar elsewhere?

[Laurie Mawlam]

One thing that I am familiar with, having had a child diagnosed on the autism spectrum, is that there is a federal deduction for a child with severe disabilities. I believe it's to the tune of about $9,000, $10,000. I haven't done it for about six or seven years because my child is now off the spectrum and doesn't qualify.

There is a deduction on the federal return. I'm not familiar with one on the Ontario provincial tax return. I had mentioned about the Income Tax Act being looked at.

A pediatrician could suggest carnitine or eating yoghurt or a probiotic after being on antibiotics. We look at curriculums that maybe a behavioural specialist has recommended. We can look at sensory items that an occupational therapist can recommend.

Parents are going out and buying services because they're on a waiting list and then they're being audited on whom they've chosen to purchase the services from.

Clearly, there's work that we can do here. If they're spending their after-tax dollars, surely they must feel it's important.

[Kathleen Provost]

I just wanted to add that it is difficult to assess, because every province has a different program. A little earlier, we talked about gaps or...How can we understand it? I think we need to review what every province does across the country. There are success stories, whether in education or in social programs, like in some provinces.

To answer your question about taxation, I believe that each province will implement it according to their conditions. Some will receive funding and others will get tax breaks. There is a whole system to go through and there are many obstacles. I feel that if we stopped to look at what is happening, we could take the best practices and greatest success stories and try to share them and put them into practice.

[Nicolas Dufour, Bloc, Repentigny, QC]

Do you have examples of best practices in the provinces? Could you give us some ideas to—

[Kathleen Provost]

We often encounter challenges. As we said, in Ontario, there's a limit. It stops.

[Suzanne Lanthier]

It's almost as if the grass is always greener on the other side. You have families in Alberta, for instance, and Alberta is often held as the shining star in terms of services and the level that's provided, but then you have families in Alberta saying, “You know what? It's not that great.” And then you have families in Ontario that, as Wendy said, get nothing. But then if you just have the diagnosis and you live in B.C., you at least get $20,000 up to the time your child is the age of six. It varies so much. And then if you live in Nova Scotia, again, you get into a lottery. So it just does vary so much.

I would say, as someone who has seen and heard about experiences from across the country, Alberta really does lead in a number of ways. They've invested a lot more money in terms of treatments and interventions. As Wendy described, they give a more comprehensive range of services, not just one type of therapy or treatment. There's more of a comprehensive range.

Again, I'm generalizing, because there are families that are still waiting. What happens is that everyone hears, they move to Alberta, and then all of a sudden the wait lists start to go up and up and up.

So you have to be very careful not to say you're from Ontario if you move to Alberta.

[Voices]

Oh, oh!

[Nicolas Dufour, Bloc, Repentigny, QC]

I know that Ms. Duncan—and I thank her—asked that you submit to the committee what is being done internationally. Could you give us an idea of the initiatives that work and that are going on in other countries?

[Suzanne Lanthier]

Well, the situation in Canada is very similar to other countries. We often look to the States. We get a lot of information from the United States, and the U.S. has done some great work. As an example, they've lobbied their insurance industry very successfully in certain states to provide access to medically necessary treatment--to ABA therapy, for all intents and purpose. They're going state by state and lobbying for this, and that's seen as successful, but again, it's the grassroots people who are spending their time doing this activity when they really should be spending their time with their families.

So it's been successful and we've seen some great results, and as a result more and more families are receiving access to treatment and to therapy.

I have a lot of colleagues down in the States who have access to a lot of families, and it's quite remarkable. Families down there say, “Well, geez, I had to wait for three months to get access to therapy.” I kind of laugh at them and say, “Three months? That's crazy....”

I've had Canadian families who live down in the States call me and tell me that they're thinking about moving back to either Quebec or to Ontario; these are two instances. I get them to describe to me what they have in place.

One family in Pittsburgh had to fight for what they got, but they had access to an incredible range of services: the school was on board, and everything was going well for the child. She wanted to move back to Ontario, and I told her not to come.

There was another family in New York City who wanted to move back to Montreal and be closer to family. But in New York they'd had immediate access to speech, to OT, to behavioural interventions, and I said, “Don't come.”

So as a Canadian, I'm like, “Don't come back to Canada. Stay in the U.S.”

There are good examples out there, and there are some parts of the U.S. that are not so great, but what we can do is we can—

[The Chair, Conservative, Joy Smith]

I think Laurie wanted to make a comment as well before we run out of time.

[Laurie Mawlam]

I just wanted to make you aware that there is a global autism alliance that has been initiated from the Autism Research Institute out in California. Autism Canada is a member of that, and I would guess that there are about 20 countries around the world.

One of the mandates they have is to take documents like the journal article I referred to that was published in Pediatrics about gastrointestinal disorders in individuals with ASD and translate them into other languages. Most of the information that's coming out, of course, is in English, so we're trying to get that into other countries.

As things come out, we're getting them out to as many countries in different languages as possible.

[The Chair, Conservative, Joy Smith]

Thank you, Laurie.

Now we'll go to Ms. Hughes, please.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Thank you.

I want to thank you for being here.

Ms. Lanthier, I want to say that I certainly didn't take it out of context; I didn't think you were trying to compare children with cancer to children with autism. I understood very clearly that if someone has a cancer that's more advanced than the other person, they have to be provided with a different type of service or wait time. I understood that. I also understand it's the same thing with respect to autism.

I have a friend who was trying to get her son diagnosed and to get him treatment. When they did finally diagnose him, they basically wrote him off and said that he wouldn't fare well. Fortunately for her she did have the dollars, and she believed in her child. That child is now a very functioning part of society; albeit, she still has a lot of struggles.

So I did understand what you were trying to say and I think we do have to look at the differences, when it comes to that.

I think there is so much with this specific condition. One out of every 110 children, and the fact that it is going up from year to year, is something we should consider to be a crisis.

I have some questions with respect to funding. Has the research funding decreased? If not, has it increased? If so, how much?

There used to be a time when hearing tests weren't being done, and now hearing tests are done regularly. Is it your opinion, especially you, Dr. Roberts, that a specific test should be done regularly with every child, to make sure they're not part of an ASD?

The other thing is how this is impacting people in rural and aboriginal communities with respect to access? My friend was in Elliot Lake, and I know the services were very limited. How many of these children are being placed with Children's Aid or in foster care because the parents can't continue to care for them? How many of them are being abused? Are there any statistics on that?

I know the NDP has certainly been pushing for a national strategy for quite some time. I don't think the baby steps we're doing are enough for where we need to go.

I'm going to leave you with that, and if we have more time I'll go through some more.