Thank you, Madam Chair.
I am delighted to be able to represent the Canadian Paediatric Society. I'm a developmental pediatrician, and the Canadian Paediatric Society has an increasing corps of developmental pediatrics, as in new developmental pediatricians, a new subspecialty in Canada in the last few years. It's a subspecialty that has emerged because the demands on general pediatricians for information about developmental disorders has been so great.
Many children, particularly children with autism, fall between mental health services on the one hand and general medical services on the other. Nobody has really been a champion for those developmental issues, which of course are associated with lots of other medical issues.
Really only in the last 10 to 15 years has autism honestly been believed to be a disorder that has major effects on the brain, and right from the time of earliest brain development has been making a difference.
I remember the first rounds that I organized on autism at SickKids. I think it was about 1993 or 1994, and we had Dr. Margaret Bauman, a very well-known neurologist in Boston, who has really, I think, changed the world in terms of understanding the neuroanatomy of autism. It was the first time I had evidence that I felt my pediatric colleagues would accept that was hard-core enough to show that the brain was developing differently. She had pictures of slices of the brain that she had sat for thousands of hours analyzing, one microscope compared to another--typical autism, typical autism--and she showed the very specific parts in the central parts of the brain and the hind brain that were clearly different and consistently different in individuals with autism, and changed in a consistent way across the life span.
That was, for me, a big step, and I think since then the research has gradually ramped up. Canada has been a real leader in terms of funding research. Autism Speaks often gives it a push first, and then we've got CIHR funding to really lead the understanding of the etiology, particularly in the genetics.
The genetics is one big piece. The complementary part of the CIHR autism research training grant program is really growing young scientists, in a wonderful way, to establish careers in autism.
Our baby siblings research is now across Canada, from Edmonton out to Halifax, and we have the pathways to better outcomes trajectories project, with Peter Szatmari leading our group. We're now almost at eight, so we'll know how children diagnosed between two and four in different provinces actually look in terms of their outcomes: school, social, family, and all the different effects. We're just starting to collect the A-tier data now.
That's going to give us a chance to see across provinces and across treatment interventions, across severity of autism, and across intelligence, all the medical factors. We're going to understand outcomes in a much better way. It's the first really big natural history study, and I think Canada has been a leader in funding that, which is great, thanks to CIHR and to Autism Speaks.
I think that the heterogeneity that Suzanne was talking about is a big thing. Kids all look different. That has made training of our front-line pediatricians and family doctors a really hard job to do. We're trying to get away from the old situation where parents were saying, “If only our family doctor had listened to us two years ago, we would have been so much further ahead.” In fact, I had a parent recently who said to the doctor, “If you had just read the sign on the back of your door, we wouldn't have been sitting around for an extra year waiting for our child to get a diagnosis.”
So we're trying. We know that there are many medical concerns. We were so happy to become the Autism Treatment Network site. We've got 2,400 kids in that registry now across North America. We have constant phone calls with colleagues across North America, looking at how to establish guidelines to deal with the epilepsy in up to 40% of kids, to deal with the esophageal problems, the reflux, things that stop kids from eating, the most severe constipation we've ever seen in our lives.
We're finding techniques. We're finding ways to help with the sleep problems. We know that parents, when they go to work and have been up most of the night with kids screaming and different kinds of sleep problems, aren't productive citizens. They're also the parents who are waiting for the phone to ring at any minute saying, “Come and take your kid home from school. He's too aggressive. He's having a bad day. We can't cope with him anymore.”
We know that there's a huge loss in the workforce from parents with autism struggling with their kids.
I must say that in the majority of cases where I see severe autism, one or the other parent has had to stop working. At a time when they need the most money--because they have to buy treatment if they're going to get it, in the majority of cases, unfortunately--they have the least money coming in. I see many grandparents with big mortgages now on their houses because of trying to get in on that early intervention piece.
Pediatricians are working on it. I think our Autism Treatment Network is pulling in a lot more pediatricians to see how they can help. But they very much recognize that parents don't have a single number to call to access service. They also don't have a single number to call to say that this is definitely a kid with autism; now can we have a service system that will pick him or her up?
In fact, in the system, we are funded to do assessments. A father said to me recently--I actually had underestimated how much he was going to contribute to our feedback session--“So you're telling me that you're putting my kid into a different boat, and you're now about to cut the rope and put me out into a different ocean with no GPS?” I couldn't give him a single number that would....
You asked us not to refer to other disorders, so I won't talk about the father who runs a big clinic for another childhood disorder, who said to me, “Wendy, I wouldn't do this in my part of medicine. How can you live with yourself doing it this way?” That's just a little anecdote.
What do we need? We desperately need an integrated service system that anybody with any degree of autism can get some guidance from. The children who do well would often do a lot better and need nothing if we could give them help. If we could get in there early and work with the so-called higher functioning kids, it would probably cost the system nothing in the future. That's probably somewhere between 10% and 20%, but that's still a significant number of dollars.
An integrated service system will only work if we do the knowledge translation work to have everybody educated at every level of the community.
Actually, coming from our earliest-signs research, we're picking up kids somewhere between nine and 18 months, often, as they become silent, as their sounds change to a higher-pitched sound, as they stop using words, and as they don't respond to their names. There are all those early signs we're picking up.
I think the way to really improve outcomes and to improve the standard of child development in Canada—we're down lower on the list, among developed countries, in terms of the standards for early child development—is to have every daycare provider and early interventionist across Canada knowledgeable about the early signs of autism and ready to teach parents right off the bat, the minute a red flag appears, well before you would put them on any kind of a wait-list, which may actually delay things two or three years.
There are many services mandated across Canada and funded across Canada. If that early interventionist and infant development person could get involved pre-diagnosis and turn things around, as we've shown in our 12 to 15 month early-intervention study, we would actually, in doing that training of infant development and daycare people and in supplementing that daycare system for the 20% of parents who won't recognize the signs and won't be able to do it themselves, improve early child development for all Canadians. There would be a huge ripple effect in terms of understanding what really constitutes good development of social communication skills. I think there's a huge win-win there in terms of so-called treatment before diagnosis.
Although I totally understand that we're working hard to try to get wait-lists down, the discouraging thing is that now a parent can recognize those early signs between 15 and 18 months, wait at least a year, in the Toronto area, anyway, and then wait another two or three years. So they've gotten the early signs at 18 months, but at five and in school, as Suzanne has said, they have had nothing.
Integrated services across the ministries is the other thing I see people struggling with in the different provinces. That is where we need kind of a lead. You get assessment through health. You have to get intervention through child and youth services. And then you really need the service within the education system. We have a huge amount of work to do there. Then you get out of school at 18 to 21 and fall off the cliff. That's when many parents say that they now have to stay at home, because there is no workplace, no vocational setting, to go to.
It's access all across the system.
From a health point of view, the other piece where I think we need leadership is in mental health. Up to 40% of individuals with autism will end up with mental health disorders, diagnosable anxiety, depression; a much smaller number may go on to have some signs of psychosis. Many mental health systems will say, sorry, we don't accept autism because our staff doesn't know how to deal with it.
We hear that from almost every mental health institution across the country. There has to be huge knowledge translation in the mental health world. And I take responsibility; we need to work more with our psychiatric colleagues to kind of “accept” autism. There's an uneasy issue around accepting autism. I think because it's so poorly understood, that really impacts access to care. So that's another area where we need research.
Our research has grown phenomenally. The public-private partnership with agencies such as Autism Speaks has made a huge difference, but we need to increase it to become more specific. Just as another anecdote, in terms of our genetic research, when we tell parents we have found a mutation that we believe links to their child's autism, every single parent, particularly mothers, will sit back and say, “Oh, I am so glad to hear it's biological, because inside I really was still blaming myself.”
So I think that's where we need answers. We don't have specific medications to treat many of the symptoms of autism. We borrow from all the other disorders. We need answers that are going to change treatment and outcomes and have a huge impact on all the lives that are affected across the country.