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.
9:55 a.m.
Founder, QuickStart - Early Intervention for Autism
First, I'd like to say that the IBI treatment is very good in what it does, but it's narrow, and it has a 52% success rate. We have children being discharged from the program with no alternate option to take. We need to broaden the services. For instance, my grandson responded to music. That is how we got his attention.
I would like to see a very broad variety of things offered. You find out then what the child reacts to. You go with that, and that opens the door, and you can carry on from there.
9:55 a.m.
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
Thank you very much.
I just want to follow up on the comments you made about the surveillance program. I think they're excellent comments and are very helpful.
One of the things that's important to us, of course, is that provinces and territories have jurisdiction over the services delivered in their provinces and territories. Our role, at a national level, at the Public Health Agency of Canada, is to ensure that we're working with provinces and territories and the stakeholders in general to collect the most reliable information so that we can inform their decisions. Where are the points of service delivery they need to be focusing on? How are patterns changing across the country? Those will shine a light on geographic areas and issues that require more focus by other stakeholders and more development.
9:55 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
I think we should also distinguish between being better adjusted and being less autistic. The comparison being made between autism and cancer can be very misleading in some respects, since someone can be very autistic and, at the same time, be marginally adjusted or emotionally damaged.
I think that autistic adults, in particular, must be involved in selecting therapy or adaptation options, which is currently not the case for them, but it is for most other minorities.
9:55 a.m.
Conservative
9:55 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
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?
9:55 a.m.
Founder, QuickStart - Early Intervention for Autism
There has been no funding available for three years from the special services at home program.
9:55 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
A family dealing with autism gets zero funding for respite care right now in Ontario.
9:55 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
Okay.
I can't imagine that. That's something we rely on significantly, obviously, as a family, to get some level of a break, I guess, in a sense. And we have since Jaden was born.
You said there is a 52% success rate for IBI. Where does that number come from? I've never heard that number before. That sounds like a pretty specific number for something that, to me, sounds pretty immeasurable, to an extent.
9:55 a.m.
Founder, QuickStart - Early Intervention for Autism
I would have to get more information to give you that answer.
9:55 a.m.
Conservative
The Chair Conservative Joy Smith
Can I ask you to get that information, Ms. Jacobson, and submit it to me or to my clerk so that we can get that and share it with all the members?
10 a.m.
Conservative
The Chair Conservative Joy Smith
It is a very specific number, and if indeed that is true, we need to know that.
Thank you.
10 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
Dr. Mottron, I can't remember the exact wording you used, but you seemed to say that we should move away from “evidence based”.
You didn't use the words “evidence based”? Okay. You said “scientifically proven”. You had a problem with the wording “scientifically proven”. It struck me that you were suggesting that almost too much emphasis was put on “evidence based”. Am I correct in understanding it that way?
10 a.m.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
Can I answer on the term “scientifically proven”?
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.
10 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
Mr. Lendrum, I can relate to so much of what both you and Ms. Jacobson said about the ages of the kids, what they went through, and the challenges with doctors actually understanding what it was. Although it seems to be getting better, there are still significant challenges in understanding.
You mentioned that you thought autism should be in the Canada Health Act, which is something I hear a lot. Sometimes there's a misunderstanding of how the Canada Health Act works. Maybe I'll turn to Ms. Elmslie, because there's nothing named in the Canada Health Act.
How long is the Canada Health Act in the first place? It's not a thick document, is it?
10 a.m.
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
It isn't, but I must defer that to Health Canada. Health Canada is responsible for administration of the Canada Health Act, and I'm from the Public Health Agency of Canada.
10 a.m.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
Okay.
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?
10 a.m.
Coffee Chat, As an Individual
John Tory stood up in front of the House and had my grandson beside him as he spoke about autism. I was quite impressed by that.