Subcommittee on Neurological Disease Committee on Dec. 9th, 2010

[Laurie Mawlam]

[Inaudible--Editor]...Autism Canada Foundation has three full-time equivalents.

I don't know how big your group is now, Suzanne.

I know you'd like information from us, but it's very difficult. We are answering the phones, and we have our mandate. Can we put some of this back on the federal government to collect this information, whether it be the wait times or the costs?

[Kathleen Provost]

I have the same concern. We're a virtual organization with no staff, so we can't do this kind of scanning. We have anecdotal information, and I could make you a list of anecdotal....

What you're asking for here is very sound and professional, but....

[Laurie Mawlam]

It's labour-intensive.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Maybe we could get that from the analysts. I'm just trying to get some sense of this.

I guess that's something we'd maybe have to get from the provinces, with respect to how many children with autism are actually--

[The Chair, Conservative, Joy Smith]

Ms. Hughes, in answer to your question, the analysts tell me that information is not collected.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

So maybe that should be part of the national strategy.

[Dr. Wendy Roberts]

I do think we need better data. I think the issue of whether every child should be screened and at what age is an interesting one that evidence needs to be collected on.

The American Academy of Paediatrics suggested that all children should be screened at 18 months and 24 months. We've had a lot of talk about that, but it's not practical within our current health system. We have adopted a principle in Ontario called “developmental surveillance”, which means that physicians and nurse practitioners are being trained to screen for all developmental disorders during well-child or well-baby visits.

The key items for identifying autism at 18 months are now built into the Nipissing questionnaire, which the Ontario government has bought the licence for, so practitioners can just download it off the net. There is also the Rourke well-baby record, which was developed by Leslie Rourke, working with the Canadian Paediatric Society. We inserted the key questions for autism into it, and it's a point-of-care tool. It has been shown to improve the quality of care if the primary care physician or practitioner has to tick off the things they've asked about.

I think our 18-month surveillance visit, the enhanced visit that we got funding for this year, will pick up a lot of children at 18 months that would have been missed otherwise. But now we're trying to work with the services to see what we can do with all these kids who have red flags at 18 months. We're talking about a sea of red and where we go now.

That's a critical point, but we have to get the intervention ready to start. We can't just put them all on a waiting list. We're working hard on wait-list strategies, but the intervention has to be there once you do the identification.

[Kathleen Provost]

And that's just Ontario.

[Dr. Wendy Roberts]

That's just Ontario.

[Kathleen Provost]

So we'd like to mirror that times 12. Ideally, a national strategy would do that. Take best practice or what's working and multiply by 10 provinces and 3 territories.

[Dr. Wendy Roberts]

Absolutely.

From the research point of view, I think it's wonderful; the Nova Scotia government has been working with our colleagues in Halifax on the early intervention project that Suzanne was referring to. An ethicist gave them advice that a lottery system was the most equitable way to provide the service, because people know that the more advantaged families somehow manage to move their way up the wait list.

Wait lists actually disadvantage the disadvantaged even more. So the lottery system was fairest. However, they've developed a system that they're evaluating and that has been rolled out effectively in all parts of the province. I think it's a program that should be available across the country. It's a fabulous model that Susan Bryson and Isabel Smith have worked together on, and it contains the same strategies we're using in our early intervention studies across the country. So there is a pattern there; it just needs to be available to everybody.

[The Chair, Conservative, Joy Smith]

I'd like to ask a question. I wonder if some of these data might be found at the provincial level. In the school divisions, when we dealt with autistic children, we kept close track of their progress, starting at kindergarten. That might be available through the provinces. A lot of what you talk about is under provincial jurisdiction, so there needs to be that collaboration.

Have you done anything to see if the provinces have those data?

[Kathleen Provost]

Dr. Jeanette Holden at Queen's is doing a pilot process in that direction, and this is one of the challenges they have identified. They work with Manitoba and Ontario. In Manitoba, it's kept under social services. In Ontario, it's under the education system. They're not tracked the same way.

So it's a challenge to gather it. But I agree with you that a collaborative effort might help us find a way to build a consensus.

[The Chair, Conservative, Joy Smith]

I taught in Manitoba, and they also kept that information in the school divisions. So I don't know what information you have, but I think it's under both social services and school divisions. I think you might get some interesting data if you look provincially.

[Kathleen Provost]

That's what we're doing.

[The Chair, Conservative, Joy Smith]

We'll go on to Mr. Lake.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

Thank you.

It's very interesting to listen to the conversation today. I'm going to start by making kind of a statement in regard to what Dr. Roberts was saying. I'm just going to share a little bit about our experience in Alberta.

Jaden is 15 now. He was two and a half when he was first diagnosed. It's very interesting to hear you talk about what people could find out at 18 months. In our case, there's no reason Jaden couldn't have been diagnosed at 18 months.

As parents, we were sent to speech therapy training types of things and workshops with other parents because Jaden wasn't talking, and they figured that was just because he was a boy. Sometimes boys don't talk as early. So we were sent to speech language training.

What keyed in for us that Jaden had autism--we actually diagnosed it ourselves--was reading Let Me Hear Your Voice. As we read that book and read how Catherine Maurice described her son, we said, “That's Jaden.”

Jaden was quiet until I started talking. Now I think he wants to try to get in here too.

At any rate, when we read that book, the description of Catherine Maurice's son was Jaden. Had the doctor had that same background, there's no reason they couldn't have seen exactly the same signs.

Thankfully, more and more pediatricians and GPs are more aware of autism, I think, thanks to the work that all of your organizations are doing.

In Alberta, I know the challenge at the time--it was right around the time when they were coming up with the strategy that has morphed into what is there today--was the big battle among the health, education, and social services jurisdictions within the province, and who would handle it. The ball would be passed from one to the other, and no one would actually do anything. I think those battles still exist today, maybe in other provinces more than in Alberta.

Eventually, to Alberta's credit, they decided it was all three. I think Iris Evans, who was the children's services minister at the time, deserves a lot of the credit for saying, “Let's get this together.” They put together an act. I think it was called the Family Support for Children with Disabilities Act. They didn't treat it as autism-specific but said it was for children with disabilities, to help them and their families to deal with those.

So you have this entity that bridges all of these different jurisdictions and actually brings them together. That's why it works in Alberta. Obviously there's funding that goes along with that, and that's an important part of it. There's also an accountability that goes along with it. We had to go before a panel--I think it was every year--to get reassessed. They'd ask a lot of questions to make sure that we still needed the funding that was being given, because it was a lot of money, a lot of taxpayer dollars that were being used to fund Jaden's program.

As you can see, Jaden is not cured of autism, but life is a lot better for us because of the treatment that Jaden's had all his life. There's a much higher likelihood that Jaden can stay with us instead of being institutionalized as an adult, which of course does save the taxpayers dollars in the long run.

In terms of my questions, first of all, I will say one thing about health, education, and social services. It's interesting; the federal government funds health and education and social services, more today than at any time in Canadian history. There's more money going to the provinces in those three areas than there has been at any time in Canadian history. The escalators in those areas, moving forward, are still pretty high, higher than the rate of inflation.

The money is there, but it's fair to say that autism funding isn't being made a priority in many provinces. Is it also fair to say that it's better today than it was five years ago, in almost every province across the country, in terms of funding?

Suzanne looks skeptical.

[Suzanne Lanthier]

It's not very different. When my son was diagnosed about seven or eight years ago, I faced the same challenges that other families are facing today. I said the same things that other families are saying.

I think the explosion of prevalence--and the enhanced awareness--has just meant significant stress. In some ways we've created a situation, which I think is necessary, where families are more aware, so they're demanding more services, and they not taking no for an answer. So there's more and more stress on the systems.

We're not set up to deal with it the right way. I think we need to really look at how the money is being used. Are we using the money in the most effective way to really effect the changes at the end of the day that we need to see? I don't think so.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

To that end, maybe I'll go to Dr. Roberts on the evidence basis for treatment.

If you had only five minutes to talk to a provincial official and explain what they should be doing for individuals with autism—I don't want to say children with autism, but individuals with autism, across their lifespan—what would you say to them their priorities should be with limited taxpayer dollars?

[Dr. Wendy Roberts]

I think it's really about making sure that every individual gets the kind of support—it's usually behaviourally mediated support—and medical care they need at their specific stage of development. So for one- to three-year olds, or zero- to three-year-olds, it's very intensive infant development services that are really focused on social communication.

Once you get into school, it's behaviourally delivered academic skills and skill development that are needed. And with adolescents, as you see their trajectories, it's more a case of looking increasingly at either academic or life skills, or both. I say this because we're behind in building the life skills of the very high academic achievers, who come out and then aren't ready to do anything.

For the over-18 age group, it's about finding some kind of a workplace where the behavioural environment, the staff, and their level of understanding are able to cope with everybody, so that Jaden, for example, can have a successful place to go to every day where he feels like a competent human being who's worth being able to do something.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

When we talk about “contribution”, defining contribution--“making a contribution”--can be difficult sometimes. I always think that if Jaden and one other person are able to contribute more than that one other person would be able to contribute on their own, then Jaden's making a contribution.

[Dr. Wendy Roberts]

That's right.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

It's kind of a neat way of thinking about it.

In Jaden's case, now he's 15. His school has done a good job—which I imagine can happen across the country—because they've embraced him. He works in the library there. He's in a grade nine class, but he's not learning what the grade nines are learning. Instead he's learning the social skills. The kids learn as much from him as he learns from them, but he also works in the library and the school cafeteria and does things that he's good at. He's fantastic at putting books in order. He does it better than any other grade nine student would, and he runs around laughing as he does it because he loves it so much. And that's contribution, right? So we kind of see a future for him as he gets older, as an adult.

I think about my previous life with the Edmonton Oilers, who still have someone—now he's a man, who's older than me, I think—Joey Moss, who has Down's syndrome but has spent his entire life working in the dressing room at the Edmonton Oilers. He does a phenomenal job there, contributing by cleaning up, vacuuming, and washing the equipment for the guys. He has this great relationship with them because somebody took the time to include him in what they were doing. And there are so many opportunities for adults with autism, I think, in these areas.

I don't want to get cut off by the chair here—

[The Chair, Conservative, Joy Smith]

No.

[Some hon. members]

Oh, oh!