Evidence of meeting #17 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was autism.
A recording is available from Parliament.
10:25 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
I'll start with a brief comment. I'm aware that CIHR is concerned that among the four pillars of research—basic biological studies, clinical studies, health services research, and population health—health services research is the least funded, but that's partly a function of who's doing what kind of research.
A good grant, well written, has a good chance of being funded. There is still much more emphasis put on basic biological research than there is on health services research. Health services research is complicated and messy, and it's very hard to do experimentally.
We need a great deal more of it to look at issues like the preventability of the physical and mental health toll that parents and grandparents experience when they raise children with complicated lives. Those kinds of studies are possible, but they're messy.
10:25 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
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.
10:25 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
What Dr. Rosenbaum said was interesting. You said that a good application, well written, will likely be funded. That's not what we've heard from the other neurological disorder groups.
That's certainly encouraging, but I wonder if it's because we're not looking for research enough; the criteria are not appropriate enough. One thing we heard again and again was that about 20% of applications got funded, but 80% didn't. They said it wasn't because they weren't good applications. They said there were excellent applications for excellent research projects that weren't being funded. That was told to us by all the other neurological groups.
What do you think makes autism research different?
10:30 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
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.
10:30 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you very much.
We are running out of time. We've exhausted a lot of the questions, but I was wondering whether, with the committee's approval, I could allow each of the members to just say what they haven't been able to say, or would you like to go into a few more questions? It's entirely up to the committee.
Monsieur Malo.
10:30 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
I just have a follow-up question for Dr. Mottron about a comment he made. You can do whatever you like with the remaining time.
10:30 a.m.
Conservative
The Chair Conservative Joy Smith
Well, you're not next on the list, but I think I will do that, Monsieur Malo.
Go ahead.
10:30 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Thank you very much.
Dr. Mottron, I would just like some clarifications on one of your comments.
Do you think that the decision of the Subcommittee on Neurological Disease to study only five particular disorders is creating an imbalance or unfairness toward other diseases that also need to be examined?
10:30 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
You're not creating the imbalance, but you are exacerbating it.
10:30 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Could you tell us more about this? Throughout the meeting, you have been able to communicate your message well.
10:30 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
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.
10:30 a.m.
Conservative
The Chair Conservative Joy Smith
Dr. Duncan does not have a question.
I'm going to briefly let the witnesses speak for one or two minutes. I will have to cut you off if there's one witness who takes too much time—my apologies.
I would like to start with Mr. Lendrum. Do you have any comment you would like the committee to hear before we adjourn?
10:35 a.m.
Coffee Chat, As an Individual
Again, I go back to my grandson. If he had cancer, if he had some other disease or problem, he would get treatment. Now that he's seven years old, he's getting zero treatment. That has to change. How we change it, I don't know, but it has to change. When he turns 18 and he's out of control or whatever, or his parents pass on, where is he going to be then?
10:35 a.m.
Conservative
10:35 a.m.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
I would just underscore points that I tried to make and that Dr. Mottron has made as well. I believe it's very important that we think about neurological conditions of children very broadly, of which autism is an important group but by no means the only group. That's number one.
Number two is that we think about function and development and family well-being, and not about specific treatments, because by and large we do not have specific treatments. The notion that IBI for autism or botulinum toxin for cerebral palsy is the treatment is I think misguided and distracting.
10:35 a.m.
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
Again, from the point of view of the work that we're involved in, in surveillance, I wanted to stress the point that while we are beginning with autism as a priority for the development of our surveillance program, we are also looking at developmental disabilities more generally.
As we grow this program, we will include other and more developmental disabilities over time. Our priority at this time is to ensure that we have a comprehensive national autism surveillance program that is meeting the needs of families.
10:35 a.m.
Founder, QuickStart - Early Intervention for Autism
Thank you.
What I saw in the case of my grandson was that no services were available until we had that diagnosis. So the system is set up to work for you only if you get the diagnosis.
QuickStart has altered that somewhat through a partnership with the Children's Treatment Centre. Services are now being provided to children pre-diagnosis.
Why can't we just treat the child? In the end, does it matter what the diagnosis is? If a child is not speaking, should we not provide speech therapy? If a child has a self-injurious behaviour, should we not be doing behaviour therapy? I don't see the need to have the ultimate diagnosis to provide the care to the child and the family.
10:35 a.m.
Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
I would like to add that our program helps establish a before, a during and an after. It makes it possible to build a life plan. Our program is not intended exclusively for autism or ASDs. We're working with the general population. Therefore, we deal with intellectual disability, trisomy, Tourette's syndrome and mental health. Our program can be integrated into society and plays the role of a social integration moderator through artistic creations that enable everyone to remain neutral.
Thank you.