Pathways in Autism Spectrum Disorders
Principal Investigators :
Peter Szatmari MD FRCPC, Susan Bryson PhD, Eric Fombonne MD FRCPC
Co-Investigators:
Pat Mirenda PhD, Lonnie Zwaigenbaum MD FRCPC, Wendy Roberts MD, Isabel Smith PhD, Tracy Vaillancourt PhD, Joanne Volden PhD, Charlotte Waddell MD, FRCPC
Introduction
Parents of children with autism spectrum disorder (ASD) are desperate to know what the future holds for their child and what they can do to maximize the chances of a good outcome. Yet we can tell them very little about the mediators, moderators and mechanisms associated with good outcomes for children with ASD.
Early diagnosis and early intervention are believed to improve outcomes for these children. Yet treatment options remain extremely limited. The best-studied intervention, applied behavioural analysis (ABA), is of limited effectiveness in very low and very high functioning children as well as being extremely expensive.
Developing new and more cost-effective interventions requires a better understanding of the developmental pathways and critical variables associated with optimal outcomes.
How do these variables interact with critical child skills such as joint attention, imitation, and language? To what extent do they influence development in children with ASD, and in typically developing children? Can identifying these potentially modifiable factors – parent child interactions, processes of care, etc. – have a major impact on how care is delivered? Will it shed light on the core mechanisms affecting the development of other vulnerable, high-risk children? Can we use this information to develop evidence-based, eclectic, early intervention, parent education, and support programs that will benefit all children?
These are the questions at the core of this groundbreaking study.
About the study
This study, the largest of its kind anywhere in the world, is investigating the developmental pathways of children with ASD, in other words, how they grow and develop over time.
By identifying the factors that help and hinder the development of children with ASD, researchers hope to gain a better idea of what contributes to healthy outcomes for these children. This knowledge can then be used to guide the development of new programs and interventions that will optimize strengths and reduce the burden of suffering for children with autism.
Who is participating?
Approximately 500 children in four locations across Canada will be followed from the time they receive a diagnosis of ASD (2-4 years of age) until they enter school (6 years of age).
The locations are Halifax, Montreal, Hamilton, and Vancouver.
What are the resarchers looking at?
Researchers are looking at how the child develops in a number of key areas:
They are assessing many factors that influence these areas of development, including those related to the child, the family and the community as a whole. They are also examining how each of these factors impacts family well-being.
What are some of the factors being looked at?
The child’s developmental level, including imitation, language, nonverbal social
communication, and physical health
Family socio-demographic factors, parental coping styles, social supports, and child's social network
Resources available in the community, includingsubsidized day care, trained educators, recreational opportunities for children with special needs, educational assistants, number of resource teachers and support facilitators
Services provided to the child and family, includingthe intensity, duration and
type of interventions, age of child at beginning of services, number of experts involved, respite, support groups, psychiatric input, and medication
Why is this study important?
Understanding these core mechanisms and how they impact outcomes in children with autism will allow us to better evaluate programs and interventions for these children and ensure that resources are devoted to those that actually show evidence of improving the emotional well-being and social functioning of children with autism.
It will also improve our knowledge of what shapes healthy outcomes for all children, ensuring that policy makers and service providers are making decisions based on the best evidence.
Who is funding this study?
The Canadian Institutes of Health Research (CIHR) has provided funding of more than $2.1 million over five years as part of its initiative to fuel new research that will improve the developmental outcomes of Canadian infants, children and adolescents. It is the largest amount of money ever awarded in Canada for a single autism study.
The Government of British Columbia has provided $1.275 million over five years to fund the Vancouver site.
For more information:
Contact the Study Coordinator, Stelios Georgiades, at: georgis@mcmaster.ca, or read our latest newsletter, On the Path.
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