Evidence of meeting #16 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
Conservative
The Chair Conservative Joy Smith
To tell you the truth, all of you have gone way over time. I'm trying to be so balanced and fair here, but it's been blown into the wind. I haven't cut anybody off, but I am going to ask for something highly unusual today, as I notice that Senator Munson has joined us.
I'm very much aware of your work, Senator Munson, and we have, as you know, brought autism to the health committee for a very important reason, to bring it up on the public radar screen and to do other things.
So I was wondering, with the committee's permission, if I could give the senator five minutes to make a comment or to contribute to the discussion.
Jim Munson Senator, Lib., Senate
I wasn't prepared to do that, but as unaccustomed as I am to public speaking....
I don't have to be elected to sit here. That's an interesting concept.
Senator, Lib., Senate
Well, thank you. I didn't expect to speak. I came to listen, because I think it's very important that senators and members of Parliament listen.
I was listening to what Mike was talking about. Of course, Mike and I are working together to try to help those in the autistic community, and I mean everyone in the autistic community. I just think that's extremely important.
You're aware of the report that we had in the Senate, “Pay Now or Pay Later”. I still feel strongly about a national autism spectrum disorder strategy, and more so, I believe, in national autism spectrum disorder standards, in the sense of a level paying field where we have national standards across the country dealing with this issue so that we don't have to go with the many arguments that we've heard about, with breakups, family breakups. We've heard those stories, and personal stories of friends of mine who are going to British Columbia or to Alberta to get continuing treatment. I spent a wonderful afternoon recently in the Geneva Centre in Toronto and saw the good work going on there.
At the end of the day, I think we have to try our best to work on the same team from coast to coast. I recognize that there are different groups, but we all have the same message. We're trying to make a better life for Jaden and others.
I recently have been travelling across the country and speaking to any autistic group that wants to hear what I have to say. I was in P.E.I. recently. It's amazing how you can have a prepared speech about what you're looking for...and when I talk, I itemize everything that I believe in. But I just sort of looked out at the crowd and said, “Wouldn't it be a wonderful idea if Holland College in P.E.I. worked together with the University of P.E.I. in terms of training and so on and so forth?” I just did this as an off-the-cuff remark: “You're such a small island. You know your neighbour, and you feel for your neighbour because it's a very neighbourly province. Wouldn't it be wonderful if the autistic community came to P.E.I. and had a centre here?”
I had this speech that I had prepared for a month, and this just came from the heart. Of course, the headline in The Guardian the next day was that the senator recommended P.E.I. But what it started there was another public discussion. I had really no intention of starting that public discussion, but once again, there were people at Holland College and UPEI, and I think they're having a chat and discussing this kind of issue now.
It wouldn't hurt to have an autism summit. That just came to me, an autism summit, in the sense of--
Senator, Lib., Senate
I know, but it wouldn't hurt to have that. We do have meetings with all of these groups here. We've had meetings and Mike's had meetings, and Mike's been a leader. We worked at this and we worked hard together, but I still believe we're working in silos. We've got to step out of that. We have to have a public meeting.
I mean, there's one thing about research and science: that's something. When I get into that room, after five minutes I don't quite understand a lot of it. I think if everybody got together and there was a summit, and the federal government and the minister were involved, it would be extremely important.
I thank you for the time. I'm honoured. I appreciate that.
Conservative
The Chair Conservative Joy Smith
Senator, I'll certainly take that suggestion back to the minister. There are many wonderful things that come out of this committee because of the people who present. There's one or two that are political, but for the most part, this whole committee is not the health committee, and so what they do basically is try to work together to come up with solutions, and that is why you're sitting where you are right now, Senator.
Senator, Lib., Senate
Very briefly, Mike was talking about Down's syndrome and the gentleman who works for the Edmonton Oilers. In the Senate, we have a program called Friends of the Senate, and we also walk the walk when it comes to hiring. I just recently, three months ago, hired a Down's syndrome young man, age of 22. Mike is in the office and he just does everything. He's wonderful, and of course there's always humour in everything. It was his birthday the other day and he just wanted to sing Hark! The Herald Angels Sing. He wanted to do that. Everybody stopped and listened to him. He gave us a moment.
He was chatting with me and he looked behind me and he saw the picture of me and Jean Chrétien and Bill Clinton. He looked up and said, “Bill Clinton”, and I said, “My goodness, Michael, that's wonderful that you know who this is in politics. Would you know anybody else besides me and Bill Clinton in politics?” He looked and he said, “Yes, of course: Bob Dole.”
Senator, Lib., Senate
And I went, “My goodness, this is a wonderful thing....”
I just want to finish quickly. There's a story.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
Madam Chair, we've already lost a lot of time today--
Conservative
Senator Jim Munson
Just one small thing.
I said, “Bob Dole? How would you know Bob Dole?” He said, “From The Simpsons”, because he was a character.
Just to end it--I'm sorry, Ms. Hughes--as you can see, I'm passionate about it like everybody else is around this table.
Thank you very much.
Conservative
The Chair Conservative Joy Smith
Thank you, Senator.
We'll go to our second round, starting with Dr. Duncan.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you, Madam Chair.
Again, I'll just highlight, before we go on, the issue of what poverty means in getting help for these children. To come back to the Somali community, it's two and three children per family. It's not one. There is such a huge need here.
I also invite all of you, if you want, to make recommendations regarding respite care, key gaps in transition from childhood to adulthood, and of course, the needs of adults living with this. We'd like to have your recommendations.
I will ask you about schooling and I will ask about families in crisis. It would be unusual not to have a weekly call from a parent in the riding who is fighting with the school yet again. The child's been sent home; the child's been suspended; now the child has been hospitalized.
How can we make it better for the school issue? How do we make it better for families in crisis? When I get a call Christmas Eve and the father is sobbing on the other end, this is in absolute crisis.
Executive Director, Autism Speaks Canada
I'll start off by saying that a lot needs to happen before we reach that point, obviously. It doesn't solve the problem of the family in crisis on Christmas Eve, and we all know that happens and it's going to happen. We're going to get the same calls you get, and I'd be interested to know what you say, what the constituency office actually says to them.
Ultimately, what needs to happen is we need to do what we're talking about doing. When I said we're setting our families up for failure, I mean that quite literally. We're setting them up for failure by not giving them access to the treatments and interventions that they need at the time they need them and at the level they need them, and across the range that they need them. We are setting them up. We are sending them on a path for failure.
There are families in crisis who, as we know, get called because they are told that they need to pick up Billy from school because he's thrown a desk across the room or the police have been involved because there has been an assault. As we know, this is not intended behaviour. It's behaviour as a result of frustration. It's behaviour as a result of not being able to communicate, as a result of being overloaded from a sensory perspective, and not having the folks adequately trained specifically in autism to identify when those triggers are going to happen and prevent them from happening in the first place.
Wendy mentioned the training of EAs in the school setting. There are great EAs out there; and I'm generalizing, I hate to say this, but EAs for the most part are glorified babysitters. They are there to keep the kid safe and the other kids safe ultimately, but they really don't know how to identify a situation that could be a problem.
I'll leave it at that and let my colleagues answer a little bit more as well.
Conservative
Executive Director, Autism Canada Foundation, and Member, Leadership Committee, Canadian Autism Spectrum Disorders Alliance
We just all have to look and say, “What can I do?” At the federal level, CASDA has a position paper in French and English here. I'd like to suggest that these are things that the federal government can do. I guess everybody just has to do their part, right? I take about 20 calls a week and e-mails from families in crisis.
So I hear you. That's my only point. We all just have to do what we can do.
Pediatrician, Canadian Paediatric Society
Our psychopharmacology medication clinic has become almost like the crisis triage point in Toronto because when everybody throws up their hands, they say maybe medication is the answer.
As we try to move ahead in our genetic research and clinical trials to look at some medications that may be more helpful, the majority of the time we don't have a medication that can make a huge difference in a crisis. It's usually the hyperactive children with autism who have had negative results with many of the medications that we use. They end up in crisis and many of them are the ones that end up in some kind of residential care. It's almost impossible to get residential care let alone short-term hospitalization in most areas.
Conservative
Mike Lake Conservative Edmonton—Mill Woods—Beaumont, AB
I didn't expect it to be coming back to me so quickly—