Thank you. It's a pleasure and an honour to be able to talk with you. My remarks will be rather broader than being just about autism, because I'm addressing the issue of neurological diseases as they affect children. Most of what I'll talk to you about is research-based.
I want to present five themes.
The first is that collectively, children's disabilities and neurological disabilities are many and varied. There are a lot of names and terms used, and these terms are often, if not always, descriptors rather than names of specific diseases. We know that there are about eight children in a hundred in Canada who have a neurodevelopmental disorder of some sort, including, obviously, autism, cerebral palsy, epilepsy, and so on. While it's important to make distinctions between conditions for a host of reasons, which I've outlined in the notes that are available, it's also very important to think collectively, in what is called a non-categorical way, about these conditions and what they have in common. The idea that has been argued for many years, with evidence to support it, is that these conditions have a lot in common. And the way we think about them and deal with them should recognize that reality.
The second theme that's really important is to recognize that children are developing beings. They're not small adults. Children are constantly in a state of becoming, and this is true whether or not they are neurologically intact. That's a very important issue when it comes to children with neurodisabilities, because we tend to think of them as people who need treatment and fixing. At the same time, whatever fixing we can do, we have to recognize that they are developing beings. And neurological impairments affect children's development, which is why we often refer to them as neurodevelopmental conditions.
Rehabilitation services of the sort offered to adults are not particularly relevant or applicable to children because of these differences. The way we think about children, the way we frame their disorders, is very important in conditioning what we do and how we do it. It's important to remember that children with neurodisabilities grow up to be adults with those conditions. We don't fix very much. We don't cure very much. The adult world—the world of adult services—does not serve children with developmental disabilities effectively. A major issue, to which Mr. Lendrum alluded, is what happens to children with neurodevelopmental disabilities as they grow up.
The third self-evident comment—in a way it's self-evident—is that children grow up in a context and an environment called “family”. Developmental and chronic health conditions affect families. It's estimated that one Canadian family in five is raising a child who has either a neurodevelopmental or a behavioural disability. There's very good Canadian research evidence of the negative physical and mental health toll these conditions take on parents. That's both clinical and epidemiological data. We know also that when services are developed and delivered to the family as the unit of interest, there is a big impact on the satisfaction parents experience, on their mental health, and on the amount of stress they experience, which is lower when services are family-centred.
The fourth theme is that we have new ways of thinking about childhood disability, moving beyond the biomedical concern of the diagnosis. Ten years ago, the World Health Organization published the International Classification of Functioning, Disability and Health, what's called the ICF. This is a framework for health that applies to everybody. It is a useful way to think about childhood disability. The idea is that whatever the impairment or condition, it may affect body structure and function, but it also has an impact on activity. It also has an impact on people's participation or their engagement in life. And contextual factors, of which family is the most important, environmental factors, and personal factors are hugely important in the way in which that condition affects people.
Therefore, it is terribly important that we recognize that interventions for children with neurodisabilities need to be directed at promoting function and activity in ways that are safe and effective, in order to enhance participation. It's also sadly the case that more therapy isn't necessarily better. At the end of the day, development and participation should always be the goals of services, to help parents help their children become adults who are as capable, confident, and independent as they can be.
Briefly, my fifth theme is that we need to continue to study these questions. I can tell you immodestly that Canadian research on childhood disability is the envy of the world. I'm very proud to be a Canadian who goes to other countries and hears about the work we do and how much regard there is for it.
We need to continue to study how best to help families, and of course their children. We need to assess the effectiveness of our interventions to adopt and promote those that work, and to stop doing those we know don't work based on good evidence. We need to support collaborative national research programs built on modern thinking about children, families, development, and a life course approach.