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.
Conservative
The Chair Conservative Joy Smith
Excuse me, Mr. Ghoul. I hate to interrupt you, but perhaps you could keep your eye on the chair a little bit. I've given you quite a bit of extra time. Could you just wrap up your thought quickly, please?
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'll wrap up quickly.
We want to do research so that our program is better equipped and so that our interventions are more specific. Thank you.
Conservative
The Chair Conservative Joy Smith
Thank you. It's nice to hear your passion, and it's nice to hear your interest.
We have with us Dr. Mottron. Doctor, I understand that you drove in from Montreal this morning. I just came back from Montreal. I did some work there on human trafficking this weekend. The driving is absolutely interesting.
With the indulgence of the committee, I would like to just pause for five moments and give Dr. Mottron a chance to make a five-minute presentation. We will then continue with the questions and answers with Ms. Hughes, if that's okay with the committee. Is that fine with you?
Dr. Mottron, welcome. I'm glad you got here safely this morning.
I'm very interested in hearing your presentation.
Dr. Laurent Mottron Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
Should I speak in French or English?
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
As a doctor-scientist and head of the Centre d'excellence en troubles envahissants du développement at the Université de Montréal, I would like to take five minutes to defend the idea that, in Canada, we are making a mistake right now by offering services based on diagnosis rather than on the level of suffering and on the level of adaptive deficiency.
There is such a range in the autism spectrum in the DSM-V, which finds that there is a single category, but that there are so many modifiers in the table that providing a single service, specifically the ABA method, based on the diagnosis, makes absolutely no sense.
Furthermore, scientists are quite divided on this matter. But, it seems to me that the way things are currently, it is entirely irresponsible for the Government of Quebec—
Conservative
The Chair Conservative Joy Smith
Dr. Mottron, I know you were in a hurry getting here this morning, but you're going to have to slow down for our translators.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
Sorry.
Conservative
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
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?
Conservative
The Chair Conservative Joy Smith
Well, you do. I think you have a full two minutes left, actually. You may speak slower if you want to.
Go ahead.
Full professor, Department of Psychiatry, Research Chair in Cognitive Neurosciences, Centre d'excellence en troubles envahissants du développement, Université de Montréal
Lastly, a little idea in the world of autism treatment. Actually, we're saying that the ABA method is scientifically established. I would like this phrase carefully examined by the policy-makers. What's been proven? The effect sizes are very small. There has been no long-term demonstration; there is no predictor of the percentage of children who are going to respond well to it or of the percentage of children who are not going to respond well to it.
For all these reasons, as well as those I just mentioned, I think that this statement is demagogic. In fact, we are giving in to a pressure group. We aren't basing our argument on best practices when we favour a technique under these conditions. It's unjustified.
Conservative
The Chair Conservative Joy Smith
Thank you very much, and thank you for making it to our committee this morning.
Now we will go to Ms. Hughes. You have seven minutes.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
Thank you, Madam Chair.
This subject is very interesting. I think the message here is that the treatment shouldn't be the same for everyone. Patients should be treated on a case-by-case basis. Right now, the treatments and the services available are not...
It's not really good for everybody. I'm just trying to get some sense here--I'm quite interested in finding out--with respect to your centre...is that a private centre or is it paid by the province? What is the percentage...? I'm just trying to figure out, is this apart from the IBI treatment, or are people accessing both of those?
Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
No, it's a treatment that was designed as part of a concept project 10 years ago. We provide services and, at this time, all the support comes from autistic children's friends and parents, and from collaborators. We're not funded by the provincial or the federal governments. Five years ago, we succeeded in obtaining research funding from the Office des personnes handicapées du Québec, which assessed the program and ruled it eligible for funding.
Intervenor, Trainer, Programme socio-dynamique d'intégration par l'art, Pervasive Developmental Disorders, Autism Spectrum Disorders, Centre d'Intervention et de Formation Socioculturel International
They go to school and participate in the program.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
I just want to continue. We heard from Health Canada that you're dealing with the surveillance. I think that's extremely important, but the other aspect is that what we're seeing, from province to province, is that it varies on the level of service and then on the type of service
We just heard from Mrs. Jacobson and Mr. Lendrum with respect to the fact that it's quite expensive in order to.... They know, they can see, what their children and grandchildren need. Yet the province chooses to ignore that by saying they have only so much money. If a child or someone has cancer, they go for treatment and they're provided with that treatment because they have the cancer.
A child with autism is being told that the only treatment we have in Ontario is for, what, five or six years?
Founder, QuickStart - Early Intervention for Autism
Two years is the average course of treatment.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
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--
Conservative
The Chair Conservative Joy Smith
So that we get some answers, we're going to start with Dr. Rosenbaum and then go to Mr. Lendrum, and then to whoever else would like to make comments on this.
By then, the time will be up. Be mindful of each other's time, because we'll go on to the next question.
Professor, Paediatrics and Canada Research Chair in Childhood Disability, Mentoring and Dissemination, McMaster University, CanChild Centre for Childhood Disability Research
A quick comment that follows on Dr. Mottron's remarks about autism spectrum disorder is that what we do not have in autism is a way of classifying levels of function, as we do in cancer or in cerebral palsy. We don't know who might benefit from what treatment, because we lump everything into one category. We don't do that with other conditions. That's a fundamental gap in our understanding of autism, and it's a resolvable gap.
I could say more about it, but I won't.
Conservative
Coffee Chat, As an Individual
What I want to hit on is the social aspect of the entire family. As I said earlier, Coffee Chat is a group of parents who get together and sit down and chat with each other. They understand that respite care is needed. There's nobody really out there. I come from a rural area, Manitoulin Island. There are no services over there, and it really gets tough for these people. As Carol has said, if my grandson had cancer, we'd take him to the hospital and they'd give him whatever care he could get.
The cost is just outrageous. Families are just struggling. I'm fortunate in that my daughter works, her husband works, and I have an income. We've been fortunate. I hear from other parents who just can't afford the price.