Video Transcript - The multiple sides of autism: A parent's perspectiveMember of Parliament Mike Lake talks to the Canadian Institutes of Health Research about raising a child with autism.
The multiple sides of autism
A parent's perspective
Hon. Mike Lake
Member of Parliament
for Edmonton - Mill Woods – Beaumont
Father of teenager with autism
Interview with Mike Lake:
CIHR: Good morning, Mr. Lake.
Mike Lake (ML): Good morning.
CIHR: Could you introduce yourself?
ML: Sure. I'm Mike Lake. I'm a member of parliament for Edmonton. Edmonton - Mill Woods - Beaumont is my riding name, and I have two kids. I have a son named Jaden, 17; a daughter, Jenae, 13, and a wife, Debbie, who live back in Edmonton, and Jaden has autism. I guess that's why we're here.
CIHR: Yes. Could you talk about your personal experience as a parent of a child with autism?
ML: Yeah, I can. You know, Jaden was diagnosed, well, he was diagnosed when he was two and a half. We found out that he had autism probably about the time he was two years old. My mom had been reading a book called Let Me Hear Your Voice, by a parent who had a child with autism, and as she was reading the book, she realized it sounded a lot like Jaden. So she passed that book on to us and we read it, and realized that as we were reading, it was like it was describing Jaden at two. It took us six months to get in for a diagnosis in Edmonton. And then when Jaden was two and a half, we started an autism treatment program for him. Back then in Alberta, it was 36 hours every week - six hours every day times six days - of one-on-one therapy. It started with literally trying to just get him to connect at any level. So, originally it was putting a spoon on the table and saying "Jaden, give me the spoon." And the therapist would look at him, and sit just right across the table from him, and Jaden would look all over the place, anywhere but the therapist. And the therapist would grab his hand and put it on the spoon and make him pick up the spoon and put it in her hand. And they would do that over and over and over again. And when he did it, she would reward him by giving him a Smartie. Jaden loved Smarties at the time. And so that progressed and, of course, it's sort of traditional ABA therapy, what they call ABA therapy, and over time, you would do it automatically when asked. And then they would progress to putting a spoon and fork on the table and getting him to choose one of the two, and go from there. It would take me a long time to explain the entire program over the years, but he's now 17 years old and he's in a regular grade eleven classroom. He's there with a full-time aide, completely non-verbal, Jaden is, but now he's able to function in the classroom. You go back to those early days of the therapy that he did, and the building that ability to connect with people, and to understand receptive language and those types of things and it's really led him over the course of 15 years to be able to be a part of things in the classroom, to understand when he's asked to do something, and to help him to focus and relate to other people. And so, he's not there for what he learns in a grade 11 classroom. Really, we describe him as a three- or four-year-old in a 17-year-old's body. But he's able to work in the library in a work experience program. He's able to understand really concrete things, so he's able to contribute and be able to…actually if you watch him work in the library, he works as hard as, probably harder than most 16- or 17-year-old kids would. He scans the books in the computer, puts them in the…takes them out of the bin, scans them in the computer, puts them in order on the trolley and runs them out to the library, can't wait to get out there, and is usually squealing when he does it, and puts them in order on the book shelves. So, it's pretty cool to kind of watch him work.
ML: There are still some challenges - he's not always aware of people and danger and things like that, and so he'll take that trolley and as he’s running out, excited to put the books away, he'll, you know, you have to watch to make sure he doesn't run over somebody on the way out, because he's not as aware of those types of things. But it's pretty cool, pretty cool to watch him.
CIHR: What are the challenges that Jaden and your family are facing in terms of access to treatment?
ML: Well, you know, I think the challenges that people face across the country, you know it's different depending on where you live. In Alberta, it's been good. I mean, Jaden, like I said, there was about a six month delay before he was able to get a diagnosis. But once he got the diagnosis, we were able to get a treatment program started pretty quickly. Now we started our own program. We ran our own program, you know, we hired our own staff. We found a consultant who would lead the program. We found our own speech language pathologist and those things, so we sort of built our own program and had it work that way. But different provinces do things differently. If you go down to the States, every state does things a little bit differently, too. So it's a challenge from jurisdiction to jurisdiction. And of course, I think for families in general, too, the challenges might be different depending on where the loved one with autism is on the spectrum. And you'll notice I didn't use the word child, because, of course, autism is a life-long condition, right? And so, people with autism live the same life-span that you or I would live. And so there's constantly research going on to take a look at, you know, not only how do we best treat children when they are first diagnosed, or how early can we diagnose them. There's some amazing research going on in Canada on genetics and on siblings and those types of things that will help us to identify children who are on the spectrum earlier, so we can get them into treatment sooner. But of course we have to find out what ways are best to deal with kids when they're in school, and work them through the education system. Of course, for some of those kids it's better to be in a classroom with regular developing kids, kids that are developing more regularly. And in other cases it's better to put them in separate classrooms, and you have to judge that based on the individual kid, based on the individual family circumstances, and each family kind of has to make that decision.
CIHR: A word to close?
ML: Just, you know what, it's been an amazing, it's been an amazing, challenge, you know, as a parent of a child with autism, but it's also been a really, really amazing opportunity. I've learned a lot about myself, we've learned a lot about ourselves as we've gone through this journey. And as we watch Jaden, I think, you know, we're more amazed every single day at what he's able to do, at what he's able to accomplish, at his attitude towards life, and the joy that he gets, just pure joy he gets when he's able to contribute. And I think for us, as family members, I think as we think about research, as we think about the opportunities that are out there, I think that that's really what it is about - discovering the incredible uniqueness, the incredible strengths that our family members have with autism.
CIHR: Thank you, Mr. Lake.
ML: Yeah. Thank you.
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