:
Good morning, everybody. Welcome to the committee.
I'm Joy Smith, the chair. This is the subcommittee on Neurological Disease of the Standing Committee on Health. We are going to be continuing our study of autism today.
There are some witnesses who have been held up by the storm, and they will be coming in a moment. I think it's advisable to start now with the presentations.
We have with us Dennis Lendrum from Coffee Chat. That's an interesting acronym or title. I'm happy to have you here, Mr. Lendrum.
From the CanChild Centre for Childhood Disability Research, we have Dr. Peter Rosenbaum. Welcome back.
We have a couple of other people coming from the Centre d'Intervention et de Formation.... I'm not sure how to pronounce that in French.
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Yes, it's an international centre. We have Mr. Warren Jason with us, and we have Mohamed Ghoul. Welcome. I'm happy to have you here.
From QuickStart, we have Suzanne Jacobson, who is the founder—it's Early Intervention for Autism. Welcome, Suzanne.
From the Public Health Agency, we have Kim Elmslie, who is the director general, and Anne-Marie Ugnat, the associate director.
We also have Dr. Laurent Mottron, who will be joining us shortly.
They have all been introduced, so we'll just go into their presentations when they come.
I would like to begin with Mr. Lendrum for a five-minute presentation.
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Hi. I'm honoured to be here.
My name is Dennis Lendrum and I come from Espanola, Ontario. I'm the grandfather of a seven-year-old autistic child.
First of all, I'd like to thank the honourable Carol Hughes, the MP for Algoma--Manitoulin, for inviting me to speak today in the House of Commons. It's truly an honour.
I am a grandfather of five grandchildren, one of whom is seven years old. His name is Alex Bertrand. He was diagnosed five years ago as severely autistic and non-verbal. At that time, I didn't even know what the word “autism” meant.
I've worked in a pulp and paper mill in Espanola since 1981. I had two back surgeries and had to resign from that job in 1998. During that time, I've been a volunteer firefighter for 15 years. I'm also the volunteer president for the snowmobile club of the area.
I sit on a committee with the greater Sudbury Regional Police. I was part of a team that is working on creating a registry for wandering persons—that's not only for autistic wandering persons, but for anybody who may wander away from home. We have the attention of the provincial police. We're hoping this will soon become provincial and maybe even national.
Now all I ever speak about is autism. Social functions, meetings, media, all candidates meetings—wherever I can get in a word about autism, I'm going to do it. I've spoken to Carol Hughes many times, and I'm sure when she sees me coming she knows what I'm going to be talking about. We've met—
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Alex was first diagnosed a week before his second birthday, in October 2005. We were told to get him ready for 30 hours of IBI treatment, as he was priority number one. So our daughter and her husband worked on changing his sleeping habits and everything else in their life and their world to get him ready.
Then, in 2006, the list changed, and Alex went to the back of the list. Apparently, it went to a “first come, first served” basis.
We got a lot of information from the medical field on what direction we should be going, and everything pointed to the idea that we should get Alex into IBI treatment as soon as possible. So we started looking for instructor therapists and found a couple. We had a home program put together in Sudbury. The cost was nearly $70,000 to my daughter and her husband. It blew them away.
In September, I drove my daughter and my grandson to Toronto, and we met with Frank Klees and John Tory. We explained our story. We ended up meeting the Minister of Children and Youth Services, the Honourable Deb Matthews. Then, all of a sudden, my grandson got into the program.
We got Alex into the 30-hour program. He went through this program. In January of last year he was taken out of the IBI program and dropped into regular school, which hasn't helped him at all.
Other parents couldn't have gotten their children to go to this program. Other parents haven't gotten their children to. I have a letter here from a reverend who was in my home community at the same time, and he got so frustrated with the system that he moved his entire practice to Manitoba. He sent me a letter for you to read. It's attached. It's the last two pages.
When Carol called me in November asking me if I'd speak, I was quite shocked. I spoke to a lot of my friends in Nova Scotia, Manitoba, and all over the place about autism and about what I was asked to do, and they all encouraged me to come here. That's why I'm here.
At the end of the day, most people I speak with want the Canada Health Act to adopt autism. That's the bottom line that we can see helping. Provincially, there are programs all over—in Nova Scotia or Manitoba—that are different. That shouldn't happen. All these children are Canadian.
I've met with Senator Jim Munson. He came to Espanola and spoke with me and several other parents. His statement was, “Pay now or pay later.” Is paying later an option? I am going to pass on. My daughter is going to pass on. What's going to happen to my grandson then? Those are the realities out there. So many parents are afraid of that happening.
I co-created a social group called Coffee Chat. I've created one in Espanola, and that's where parents just go to sit down once a month for an hour or an hour and a half and chit-chat with each other. Everybody is just so afraid of what's going to happen in the future.
As you can see, there's other information in the package I've passed out to the committee, but the big thing we want to see is a change in the Health Act.
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Thank you, Mr. Lendrum.
We're so grateful that Ms. Hughes called to have you on our committee. There will be a chance for questions and answers later, and you'll have lots of time then. I've given you a couple of extra minutes this morning.
Also, the committee actually doesn't have your presentation, because we have it in translation. We will make sure that everybody gets a copy. I've just gone through it here in front, and it's just excellent, very detailed.
So your presence here is very much appreciated.
And thank you, Ms. Hughes, for doing that.
We will now go to our next witness, Dr. Peter Rosenbaum, please.
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Thank you. It's a pleasure and an honour to be able to talk with you. My remarks will be rather broader than being just about autism, because I'm addressing the issue of neurological diseases as they affect children. Most of what I'll talk to you about is research-based.
I want to present five themes.
The first is that collectively, children's disabilities and neurological disabilities are many and varied. There are a lot of names and terms used, and these terms are often, if not always, descriptors rather than names of specific diseases. We know that there are about eight children in a hundred in Canada who have a neurodevelopmental disorder of some sort, including, obviously, autism, cerebral palsy, epilepsy, and so on. While it's important to make distinctions between conditions for a host of reasons, which I've outlined in the notes that are available, it's also very important to think collectively, in what is called a non-categorical way, about these conditions and what they have in common. The idea that has been argued for many years, with evidence to support it, is that these conditions have a lot in common. And the way we think about them and deal with them should recognize that reality.
The second theme that's really important is to recognize that children are developing beings. They're not small adults. Children are constantly in a state of becoming, and this is true whether or not they are neurologically intact. That's a very important issue when it comes to children with neurodisabilities, because we tend to think of them as people who need treatment and fixing. At the same time, whatever fixing we can do, we have to recognize that they are developing beings. And neurological impairments affect children's development, which is why we often refer to them as neurodevelopmental conditions.
Rehabilitation services of the sort offered to adults are not particularly relevant or applicable to children because of these differences. The way we think about children, the way we frame their disorders, is very important in conditioning what we do and how we do it. It's important to remember that children with neurodisabilities grow up to be adults with those conditions. We don't fix very much. We don't cure very much. The adult world—the world of adult services—does not serve children with developmental disabilities effectively. A major issue, to which Mr. Lendrum alluded, is what happens to children with neurodevelopmental disabilities as they grow up.
The third self-evident comment—in a way it's self-evident—is that children grow up in a context and an environment called “family”. Developmental and chronic health conditions affect families. It's estimated that one Canadian family in five is raising a child who has either a neurodevelopmental or a behavioural disability. There's very good Canadian research evidence of the negative physical and mental health toll these conditions take on parents. That's both clinical and epidemiological data. We know also that when services are developed and delivered to the family as the unit of interest, there is a big impact on the satisfaction parents experience, on their mental health, and on the amount of stress they experience, which is lower when services are family-centred.
The fourth theme is that we have new ways of thinking about childhood disability, moving beyond the biomedical concern of the diagnosis. Ten years ago, the World Health Organization published the International Classification of Functioning, Disability and Health, what's called the ICF. This is a framework for health that applies to everybody. It is a useful way to think about childhood disability. The idea is that whatever the impairment or condition, it may affect body structure and function, but it also has an impact on activity. It also has an impact on people's participation or their engagement in life. And contextual factors, of which family is the most important, environmental factors, and personal factors are hugely important in the way in which that condition affects people.
Therefore, it is terribly important that we recognize that interventions for children with neurodisabilities need to be directed at promoting function and activity in ways that are safe and effective, in order to enhance participation. It's also sadly the case that more therapy isn't necessarily better. At the end of the day, development and participation should always be the goals of services, to help parents help their children become adults who are as capable, confident, and independent as they can be.
Briefly, my fifth theme is that we need to continue to study these questions. I can tell you immodestly that Canadian research on childhood disability is the envy of the world. I'm very proud to be a Canadian who goes to other countries and hears about the work we do and how much regard there is for it.
We need to continue to study how best to help families, and of course their children. We need to assess the effectiveness of our interventions to adopt and promote those that work, and to stop doing those we know don't work based on good evidence. We need to support collaborative national research programs built on modern thinking about children, families, development, and a life course approach.
This program is a socio-dynamic integration program through art. This new approach uses the rhythm of the African djembe as a medium for communication. From that building block, we communicate with those along the autistic spectrum.
What we're doing right now is to put in place different structures, starting from ordinary schools to psychiatric regional hospitals, implementing the program accompanied by research.
This new approach lowers aggression levels and lowers all the integration difficulties of the clientele we're touching. It's applicable to all types of handicaps among children or adults. What it does is to lower anxiety.
During the formation of trainees in these organizations or institutions, it brings a better atmosphere. This brings the participants into a context of creation. So when a participant is in the context of creation, this is always associated with emotion. With these two together, there's a “dynamic neuron” that's created, as I call it, which stores this information. This emotion and creation together stores this information in what we call memory. When we come back to that memory, it often becomes a permanent building block from which we can use the rhythm and every other tool to interact with that person.
From that first building block, the experience of creation brings a person to knowing that he or she can now communicate with the outside world. From that building block, we can put in different music, different words, and different rhythm. It's always within the rhythm basis: the communication is based on rhythm.
During the formation stages in institutions and hospitals, the cost of that formation is lowered because the results are, in the short term, very important. So the cost of the formation is very low compared with the fantastic results.
We're looking at getting government acceptance of this so that schools and different institutions can have this program available on demand.
That's about it for me.
:
Thank you, Madam Chair. I welcome the opportunity to speak today before your subcommittee.
I am the grandmother of two young boys, Alex and Nathan, ages six and three. Both have been diagnosed with autism spectrum order, ASD. They are brothers.
My husband and I were privileged to be able to pay for private therapy for Alex while he waited the 10 months for the publicly funded assessment and diagnosis. As I learned the importance of early identification and intervention, I wanted to do something that could help all children, not just those children whose families could pay.
That led to the founding of QuickStart-Early Intervention for Autism in 2008. QuickStart is a non-profit Canadian charity.
QuickStart's goal is to find the most effective way to get immediate help to the children who are showing signs of autism. To this end, QuickStart has helped to establish the first Canadian pre-diagnosis clinic.
QuickStart also advocates for children with autism and their families. That is why I have asked to appear in front of your subcommittee today; first, to underline the health and economic burdens to the family; second, to emphasize the importance of early identification and intervention; and third, to highlight the encouraging results of an intensive early therapy for toddlers.
First is health and the economic burden. Our own personal family experience is that it is an enormous stress, on not only the family but the extended family. We have watched our daughter and son-in-law fight every step of the way for their children. We have seen the schedules they keep, with the numerous appointments, therapies, etc. It never ends. They are exhausted. My daughter has had to stop work, so there is the loss of her income.
On top of that, we have to come up with the funding for private therapy, which is easily $50,000-plus. We're talking after-tax dollars, and it's often the extended family who helps with this. Personally, I have cashed in all of my RRSPs to pay for my grandsons' therapies, and my husband and I are cashing in our other retirement investments so that our grandsons will have the best opportunity to develop.
I also hear from other parents. They call me. They're desperate. They are re-mortgaging. They are selling their homes. They're moving to other provinces to get better care.
One grandmother called me to tell me she continues to work, so she can pay for her grandson's therapy.
I'm here to tell you that we're the lucky ones. What if you don't have a home or investments to sell, or an extended family willing to help? Your child waits while you can do nothing, and valuable time is lost.
Second is the importance of early identification and early intervention, knowing what to do. I have a perfect example with my two grandsons.
Alexander was not identified right away. His GP wanted to take a wait and see approach, which is very common. We didn't know where else to take him to get help. Once he was flagged at 20 months of age, Alex waited a further 10 months for the assessment and diagnosis. Alex did not come to the top of the intensive behavioural intervention therapy, the publicly funded therapy here in Ontario, until he was 54 months of age. That's 34 months, almost three years from when he was first identified.
Nathan, his brother, is a different story. He took part and is still in a siblings research study with Dr. Lonnie Zweigenbaum in Toronto. At 15 months there were concerns raised. At 18 months he was showing some red flags for autism. He was diagnosed at 21 months.
Here I feel there is something that is very critical as well. Alex had regressed significantly by the time he started private therapy. Nathan started to receive private treatment as soon as he began to regress because we knew what to do with Nathan.
Alexander currently attends grade 1 with the help of a full-time aid. While Alex has many strengths, we are not sure at this time if he will be able to live independently.
Nathan, after 21 months of intensive therapy, has improved so much—and that's private intensive therapy—that he no longer qualifies for the IBI therapy. We are optimistic that he will live a full and independent life.
The third thing I'd like to talk about is an intensive therapy for toddlers. I would like to briefly highlight the encouraging results of an innovative new early intervention therapy for toddlers that's based on behaviour analysis, called the Early Start Denver model. This intensive early intervention approach by specialists and with the child's parents is suited to children under two and a half years of age. It has shown significant improvements in outcomes and cost effectiveness. Nathan's rapid progress has confirmed these results.
I believe his progress is due to a combination of these key factors: early identification and intervention, weekly speech therapy, and his intensive therapy with the Early Start Denver model. We're very fortunate to have someone trained in that here in Ottawa--the only person in Canada.
Madam Chair, I thank you for this opportunity to appear today. I thank your colleagues for bringing their attention and hope to this matter.
Thank you.
:
Thank you very much, Madam Chair. My apologies for being a little late in arriving this morning. I was battling the traffic on the Queensway.
I'm very pleased to be here this morning from the Public Health Agency of Canada to provide you and the subcommittee members with an overview of the agency's work on surveillance of autism spectrum disorders.
I will start by briefly giving you an overview of health surveillance generally. Then I will focus on the development of the autism surveillance program.
As many of you will know, health surveillance is a core public health function, and it is a critical part of the work we do at the Public Health Agency of Canada. What is surveillance? Surveillance is the ongoing, systematic process of data collection; expert analysis and interpretation; and, most importantly, communication of the resulting information for public health action.
The information we use may include rates of a health condition; emerging trends over time; variations in the occurrence of a health condition according to specific populations or geography--where those populations live; information about risk and protective factors, and so on. There are many ways we do surveillance and many types of data that we collect.
With our surveillance information, governments, health care providers, public health practitioners, researchers, and Canadians can take action to prevent disease and promote health. The responses may be in the form of policy and program development, changes in clinical or public health practices, provision of advice and education to the public, or research. As you can see, there's a broad range of uses for the surveillance information we provide, and we are very careful to collect that information to meet the needs.
I will now focus on the development of a national autism spectrum disorder surveillance program. Autism spectrum disorder, as you know, is a group of neurodevelopmental conditions that typically occur before three years of age. These conditions are characterized by impaired verbal and non-verbal communication, impaired social interaction, and repetitive behaviours. Rates of autism spectrum disorders in Canada have been estimated at 6.5 per 1,000, based on studies by researchers such as Fombonne, and studies from the Senate Standing Committee on Social Affairs, Science and Technology, in their 2007 report.
The lack of complete and reliable epidemiologic data on autism spectrum disorders in Canada resulted in the identification of the need for a national surveillance system that would be equipped to fill information gaps and provide reliable information in three areas. First is the prevalence of autism spectrum disorders: how common are these disorders, and how do they differ in prevalence across the country? Second is to describe the population of children with autism spectrum disorders. Third is to understand changes in prevalence of these disorders over time.
We have a strong foundation in the agency and with our partners, on which we are building. The national epidemiologic database for the study of autism in Canada was established in 2001 and is coordinated by Queen's University. Researchers, clinicians, and government agencies in six regions of Canada are collaborating to better understand and estimate the prevalence of autism spectrum disorders.
A prerequisite for successful surveillance is standardization of case definitions and data collection. We want all of the people participating in surveillance to be collecting the same thing, according to the same definition, in the same way, so those data are reliable. We are working with Queen's University to develop and test surveillance methodologies for ASD based on their experience with the national epidemiologic database.
We have consulted with key stakeholders, including parents, caregivers, individuals with autism spectrum disorders, health and service providers, researchers and clinicians, and other persons affected by these conditions.
In brief, the priorities for a surveillance system of developmental disorders should include a valid case definition based upon scientific evidence, and a comprehensive selection of indicators that accurately describe the spectrum of disorders and enable an accurate estimation of the burden of illness in Canada.
In November, we attended the Geneva Centre for Autism's international symposium in Toronto, Autism 2010, and had an opportunity to hear first hand the needs of patients and families and from organizations working to provide services to children with developmental disorders such as autism. Through meeting with international counterparts and national experts, we learned first hand of the need for a coordinated national approach towards assessing the burden of disease related to the spectrum of autistic disorders in Canada.
At this point we're in the process of establishing our scientific advisory committee for the autism surveillance program. We will work with this committee to identify and confirm the measures or indicators we should be monitoring. This will be building on work we're already doing with Queen's University.
This process will define the specific data needs and our approach to data collection. We will benefit from the considerable depth of expertise on autism spectrum disorders that exists in Canada in research, clinical care, social services, and through organizations representing the needs of children and families.
This includes the work of the Canadian Autism Spectrum Disorders Alliance and Autism Speaks Canada. As you know, members of these organizations are committed to the establishment of a national autism surveillance program. We are working with these organizations to ensure the information from the surveillance program is communicated to stakeholders, that we receive their feedback, and that opportunities for ongoing dialogue are established.
To accelerate our efforts in establishing our surveillance program, we have dedicated a senior epidemiologist to manage the development of the program. The most important next step is the establishment of our scientific advisory or steering committee. This committee will begin its work early next year to identify and confirm the measures and indicators that will form the basis of our program. It will help us determine the best ways to collect these data. Our plan is to build upon the considerable depth of expertise that already exists in order to build a surveillance program that will accurately assess the burden of illness in Canada.
Thank you, Madam Chair. I would be happy to answer any questions from the committee.
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I think the main theme I would underscore is the one the other witnesses have commented on, particularly parents and grandparents. It is that we recognize that childhood disability affects families, and that services and policies reflect that reality.
I think a number of things can be done at the service level, including early intervention along the lines that Suzanne Jacobson described. I think we are too stuck. We doctors in particular are too stuck on making a diagnosis, as if that is necessary, when clearly children with disabilities present functional challenges that can be addressed in ways that are rarely specific to that condition. We need to change the paradigm enormously. So that's one comment about services and the way professionals think about them.
The second, as I mentioned a minute ago, is the importance of recognizing the context of children, which is family, and that services be provided to families rather than just to children.
The third is that I suspect there are ways in which national and provincial fiscal or tax policies and other financial policies can recognize the financial impacts on families, not just of having to pay for services that aren't easily available, but things like tax benefits and employment support for families who have either to change what they're doing, stop what they're doing, or miss opportunities for advancement because they are preoccupied with the well-being of their children.
With respect to research, clearly the wish list would include identification of childhood disability as a major issue in this country, to recognize the prevalence of these conditions, the impact of these conditions on children and on families, and on the reality that these children will become adults who become orphans in the adult world for a host of reasons.
The final comment I would make is that there is an enormous imperative for knowledge translation, which is to say to get the best available research to the people who need to know it. That includes families, service providers, policy-makers. We need to stop doing the things we know don't work in favour of the things we know do work.
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No, I'm not a doctor; I don't take care of people like that. Instead, the treatment has an interpersonal and social integration focus. I think that this goes back to what the professor said earlier, that we need to change the way we think and live.
Social status is not important in our workshops. People come with their baggage and their backgrounds. It's the same thing for an autistic person, a person with autism spectrum disorder, or anything else. It's filmed and analyzed.
Here are the graphs that I left for you and that show the participation and concentration curve for each individual. Each colour represents an individual. From this graph, we can make pairings to put together groups that we would not think to put together. The idea is not to force the relationship, but to let it come together.
We work with participants who have some level of anxiety. We are managing to control that level.
We have also developed terms. An SO is a social opportunity, an SP is a social photo. An SS is a social stagnation. We are observing these three models, which help us create a profile for the person. One thing that is very important is working with the families. The families have access to the videos. Parents see me working with their child. Sometimes they aren't at all happy with what I'm doing, but they can see it.
It's a process of artistic creation. As a result, we don't put the authority of parents or doctors in jeopardy. It's a cultural process, a neutral place that allows freedom of expression. Thanks to that, so far the work we've done has been very good. We will also give the training in Paris and Tunisia. People already want this program. We would like to establish it in Abitibi-Témiscamingue. Our partners are well-established. We need support to be able to take care of the research and development side of things. We have five or six possible training locations for various clients, for various participants, school settings, institutional settings and community organizations.
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I'll answer in English, because my French is not as fluent as my English.
I think what we're hearing about is very much a model of social integration, which presumably, if I understood correctly, is not diagnosis specific. It fits very much with some of the things I said earlier about the fact that most of our interventions are not specific to a diagnosis but are about functional well-being. I think this is extremely powerful. It addresses the social dimensions of the lives of people whose lives are complicated by virtue of a medical, in this case neurological, impairment.
It's also important to emphasize, once again, that people with childhood disabilities grow up with a different kind of experience of life--not better or worse, but different--than adults who acquire a disability, for whom our efforts are to rehabilitate them back to the state they were before. Really, the culture of the person with a developmental disability is a different life experience, and I think this is a very powerful and positive approach.
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The Government of Quebec and the governments of the other provinces, I think, decided to impose a specific type of treatment for autism based on knowledge that I feel is entirely insufficient. In fact, the effect sizes for the studies that report positive effects are also insufficient.
It is unique, both in the field of the professions and in the field of disease, that a government would give an opinion on one specific technique. Can you imagine oncologists being required to put in their flasks one product over another? It makes absolutely no sense. It's the result of excessive and unfair lobbying, in my mind.
Some things are not challenged when it comes to assisting autistic individuals, particularly what should be done for adults in terms of employment and housing. There is currently a funding imbalance in favour of early intervention. Actually, almost all funding is set aside for children from birth to age six, so there is almost a complete lack or a very large dearth of resources for adults, including in housing and employment. This seems to me to be a mistake.
There is currently another argument going on in Quebec. We think that we need to fill up the waiting lists so that everyone can have the famous 12 hours of the ABA method. But this technique is too lengthy, not very effective and time-consuming.
I strongly suggest that we rebalance this budgetary choice and that the relative amount set aside for adults compared to what is set aside for children be redistributed on this basis.
Do I still have a few more minutes? Or are the interpreters out of breath?
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I'll just finish my train of thought on that one.
My question--because we're seeing people go into debt--is if it would not be better to have a national strategy where everybody gets the same level of service or treatment according to their individual needs, as opposed to saying, “This is the service we're providing and that's all that is available for two years.” What do you do after those two years? What do you do after they grow up? How do we actually best support them?
I have another question, and I'll leave it with answers for all of you. It's with respect to the surveillance, and it's a question that I actually brought up at the last meeting. Is the surveillance being done with respect to how many children are ending up in Children's Aid? How many of them who have autism are abused? How many families are finding themselves in the mental health field because they can't cope with the stress?
I'm going to leave it at that. I know Mr. Lendrum wanted to speak with respect to the cost and the availability of service, and what happens when they don't get IBI, and then maybe--
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That last point is kind of interesting.
I have a 15-year-old son with autism, and one of the first questions people always ask is how serious it is. In his case, I would say, based on some factors, that it's pretty serious. He doesn't talk, and he's 15. He can't think in the abstract at all, virtually. He thinks almost entirely in concrete terms. Dr. Mottron, you talked about, sort of, the ability to adapt or how significant the impact is, I guess, in a sense. He's a very, very happy kid. He is able to find areas where he can excel—I was talking about this last time—such as working in a library and things like that. Sometimes I see more difficulty for people who might be “less” autistic, because there's more anxiety, because in many cases they actually realize that there's something different about them and they have a very difficult time dealing with that. I think that's an important point you made.
I just want to get a couple of clarifications.
Ms. Jacobson, did you say there's no support at all for respite care in Ontario?
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Can I answer on the term “scientifically proven”?
[Translation]
This is a cliché used in all the arguments for defending certain methods, especially the Lovaas technique. As I pointed out, the term “scientifically proven” is used in a misleading way. We're not talking about 52% but about 47%. That's the magic number the 1987 Lovaas study reported. These are figures that, as you said, are much more exact than they can be for studies with low effect sizes that are related to methodological problems pointed out over the 30 years following that study. Therefore, it hasn't been scientifically proven that the ABA method is that effective.
There have been at least three meta-analyses, including those conducted by Patricia Howlin, by Ospina, and the Australian study conducted by Spreckley. Those meta-analyses are different from one another. Spreckley's analysis is about the absence of effect. Patricia Howlin discusses an unpredictable effect on some people. The third study talks about a low effect.
We should also point out that there are now a few randomized controlled trials for studies on communication. We're talking about studies that are conducted for two hours a week instead of for eight to ten hours, and their effect sizes are similar.
The cost-benefit ratio of the ABA method is currently lower than that of the other communication techniques. We must admit, however, that effects are low in all cases.
I'm pretty confident that nothing is named in the Canada Health Act. From time to time we get a private member's bill in this place demanding that autism be named in the Canada Health Act. If autism were named in the Canada Health Act, it would be the only thing named there, because nothing else is named there.
When I talk to families, I often try to develop a bit of understanding of who's responsible for what in Canada. Funding for the treatment of autism is clearly a provincial responsibility. I was encouraged to hear that you met with Deb Matthews and John Tory. It was probably around the same time I took Jaden in and we met with both of those individuals on the same day.
I have to say that both meetings were fantastic. I found John Tory to be fantastic in terms of his understanding. For someone who doesn't live with it every day, the understanding he had was pretty remarkable.
Did you take your grandson into those meetings when you visited them?
As you would imagine, the Canadian Institutes of Health Research holds the federal mandate for ensuring that health research across the country is occurring and is supported in an effective way so that it is meeting the needs of Canadians. In particular, in the context of autism, CIHR is engaged in both basic scientific research as well as applied scientific research. So their research agenda is to elaborate on autism spectrum disorders, better understand how the health care system is responding, and also, of course, to support basic science to understand causes and treatments for autism. You'll find that at CIHR.
In the context of the Public Health Agency of Canada, our role is in the area of surveillance. So we are very focused on working with stakeholders to develop a world-class surveillance program for autism spectrum disorders.
From the perspective of Health Canada, Health Canada is concerned about the overall health policy and health care policy in the country and working with provinces and territories in that regard.
I'll just come back to the Public Health Agency of Canada for a moment, picking up on what Mr. Lake has just indicated with stakeholders—and by stakeholders, I put first and foremost the families and organizations that are representing families with children who have autism spectrum disorders. That interaction is of extreme importance to us. We will judge the value of our surveillance program on the feedback we receive from those who use that information in designing programs, in accessing programs, and in determining what the needs are going forward for families with autism spectrum disorders.
In terms of the surveillance, when we did meet with stakeholders, there were two things that I took away from that. One was that generally I think the stakeholders realized there was more happening than they thought was happening. And then I thought the other officials in the room took away that there's still a lot more that needs to be done—
Ms. Kim Elmslie: Very well said.
Mr. Mike Lake: —so there was a good balance there.
If you were to describe in terms that families can understand, how far away are we from a surveillance system that is actually tracking and working, as opposed to being explored? Second, what does that mean to families across this country?
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We would like to have a study with much more data. We conducted a study with a 10-person group. Although the study is documented, there is supporting video footage and it is done under supervision, we would really like to have a study with 100, 200 or 300 people.
As for the budgets, we have submitted an application to the Department of Education and the Department of Health. Unfortunately, as I was saying earlier, our application was rejected each time, ostensibly because we did not meet the criteria, since our study is based on too many different parameters.
Lately, through the Conférence régionale des élus, we have been working with MDEIE, which should—thought this is not yet final—fund the training program that is to begin next September. However, we're currently still unsure of what will happen.
Parents are asking for the study, the federation is behind us, as is Dr. Lemay of Hôpital Sainte-Justine. The Malartic regional psychiatric hospital wants to implement the project. The letters we received from them are attached to the document we've presented. Therefore, we have a group of present and future partners. There is also the neurological centre and Professor Catherine Barthélémy, who is very interested in expanding the method. This is a program that can easily be integrated into schools. I think that it's something that could be done in Canadian schools.
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The program varies from one province to the next, but most of the Canadian provinces are using the model that is based on the belief that intensive intervention, if applied extensively, can eliminate a child's need for services in the future.
So, the model that you feel is inadequate was actually chosen by people. The timeline varies depending on the province, but, in all cases, an extreme amount of care is provided, followed by a total lack of care. However, adolescents and adults need crisis management cells that are extremely flexible, versatile and available as needed. They need this all their lives.
Regardless of whether they are doing very well or very poorly, autistic people need assistance on and off throughout their lives, especially when it comes to work, housing, social duties, such as filling out paperwork, and so on. No type of intensive treatment will help those people dispense with the services as adults.
:
Thank you, Madam Chair.
One thing I wanted to ask about that we've gone over in some of the previous hearings with neurological disorders, and I don't think we've paid significant focus to today, is that which is certainly in the federal domain, and that is research. One thing we talked about with previous groups was how difficult the application process was to apply for a CIHR grant, about the number of projects that are being left off the table. That was a common thread we heard, whether it was ALS, Alzheimer's, Parkinson's, or a variety of other groups that we've heard from.
I wanted to get your impressions on what you've heard about the CIHR process. And do you know if there is a fair amount of research that is being left off the table in terms of autism?
That's a general question for whoever may be best equipped to answer that.
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Legislators should be informed about certain risks involved in autism research. For instance, pressure is being applied by lobby groups to bypass peer committees in cases involving false miracles. In Quebec, the Fonds de la recherche en santé du Québec—the equivalent of our CIHR—was being unduly pressured to have secretin tests conducted under conditions bypassing peer committees. It turned into quite a spectacle. The situation is the same in the case of hyperbaric oxygen therapy and all the other so-called miracles that crop up in autism research every other year. I think it's very important for scientific criteria—even though the apparent result is that many requests do not get approved by CIHR—not to be relaxed only because autism is involved and is being pushed to the fore unduly, in my opinion.
I find the fact that a committee like this one exists very worrisome, although I am taking part in one of its meetings. Will there some day be a committee on Tourette's syndrome? I doubt it. Will there be a committee on intellectual disability? I doubt that as well.
Currently, in Quebec, an autistic child automatically qualifies for about 10 hours of help with schoolwork, on the mere basis of a diagnosis, even if the child has an IQ of 120 and is fairly well adjusted. As the father of a child with Tourette's syndrome, which has worsened, I have come to realize that having another neurodevelopmental condition doesn't make people eligible for any services.
We should also think about equality. The popularity of autism, which we benefit from when we are, like myself, autism researchers, or, like yourself, parents of autistic children, is also something of an injustice. So it should be kept in mind.
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I don't know that autism research is different, so I can't respond to that comment. I will tell you that every one of the grants that I've had funded was an excellent grant, and all the ones that weren't funded were excellent, and how the hell did somebody not recognize that?
The reality is that there is a huge amount of competition for grant funding. CIHR at 20% or 22% is far more generous than NIH, with which I've had experience, which is about 8%. It's a very competitive world.
There are opportunities when a grant that one thinks is excellent is not funded. There are opportunities to go back to refine it using the feedback. I can't argue that there's unfairness. I could tell you that if we had twice as much money, there would be twice as much research.
That may be a point that this committee could let the government know to continue to support and enhance the funding of CIHR, because if there were more money, there would be more grants funded. The most recent grant that we submitted was ranked 16th out of 69. They funded 13. We've gone back. If there were more money, we would have been funded.
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In France, a category called orphan diseases was created to group together, with the same lobbying capacity, diseases that were not sufficiently represented to come under scrutiny.
Autism has something of a special status, as if it were something more tragic or dramatic than other diseases. I don't think that's the case. I have spent my life conducting research on autism and fighting for the rights of autistic people. However, I don't think they should be treated any differently than other human beings.
In Quebec—I'm not familiar with the legislation of other provinces—there is an imbalance between the number of services people are automatically entitled to when diagnosed with autism, and the number of services people are entitled to when living with conditions that, in some cases, may be far more debilitating than autism.
For instance, there is Tourette's syndrome, which I bring up for personal reasons. People with Tourette's can be doing very well, but they can also be doing very poorly, much worse than autistic people who are doing well. The same is true of intellectual disability and post-surgery epileptic patients, or those suffering from various neurological syndromes.
I would like to repeat my initial suggestion. If we were to provide services based on the level of disability, sector by sector, and not based on the diagnosis, we would be less likely to create orphan categories.