UNRAVELING THE MYSTERY OF AUTISM SPECTRUM DISORDERS

Dr. Jeanette Holden (Queen’s University) is leading a group of over 60 researchers, clinicians and parents from across Canada and the US who have formed a multidisciplinary research team called the Autism Spectrum Disorders – Canadian American Research Consortium (ASD-CARC). This group has secured funding from the Canadian Institutes of Health Research (CIHR) and the Ontario Mental Health Foundation (OMHF) to:

¨ gain a better understanding of the biological basis of ASDs,
¨ determine the very earliest of signs of ASD during infancy,
¨ identify genes important in determining risk for ASDs, and
¨ develop methods for identifying individuals at risk for ASD during infancy so that treatments can be introduced even earlier, optimizing outcomes for children with ASDs.
How You Can Participate. You are invited to participate in several different studies:

1) Autism Spectrum Disorders Research Registry. If you have one or more children with ASD, please register your family at www.autismresearch.ca. Through the Registry we will inform families of various studies and invite your participation. We are asking for basic information, which may help us to identify child and family factors that may be shared with many other families with a child with ASD, including ASD symptoms, obstetrical history, family history, etc.

2) Genetics of ASDs. We invite families on the Research Registry with two children with ASD or with one affected child and another affected family member in the extended family (e.g. parents, cousins, nephews, etc.) to participate in genetics research. By identifying the genetic factors across a large number of families, we hope to be able to (a) develop a simple blood test that will predict who is likely to develop ASD, (b) learn how these genes work to predispose an individual to ASD, and (3) contribute to the development of dietary, pharmacological or other treatments that could reduce or eliminate symptoms. We will also notify families on our Research Registry when we extend genetic testing to families with one affected member.

3) Clinical and Behavioural Studies in ASD. We invite all families on the Research Registry to participate in a variety of on-line questionnaires about ASD symptoms or other related factors. Families living close to one of our Regional Centres may also be invited to participate in direct assessments. All clinical and behavioural information about the affected children and their families will be associated with genetic information to determine whether families who share the same genetic patterns also share some of the same behavioural and family characteristics, thus forming a “genetic subgroup of ASD”.

4) Prospective Study: Families with one or more children with autism who have a new baby (under 1 year of age) are invited to participate in a Prospective Study of Autism in which they will be asked to track their infant’s development over the first three years of life. Our goal is to develop an early detection tool for identifying autistic symptoms before one year of life. With early detection of ASD in children at-risk, our plan is to develop very early intervention strategies to prevent the full expression of autistic symptoms in these infants.

5) Epidemiology of Autism Spectrum Disorders in Canada. The Epidemiology study will examine specific regions of Canada in great detail to determine the prevalence and incidence of ASDs in Canada, in order to help plan services and to determine whether changing incidences are due to specific causative factors.

Contact Information: Please register your family in our Research Registry at www.autismresearch.ca. For more information, contact Dr. Becky Ward by email (autism@post.queensu.ca), phone (613) 548-4417, ext. 1130, or mail (see below). We are very grateful to all families who consider participating in our studies. We know that your time is valuable and that by participating you are helping not only your own families, but future families as well.

Thank you.

Becky Ward, PhD, C. Psych.
Clinical Research Coordinator
Autism Research Program (ASD-CARC)
Ongwanada Resource Centre
191 Portsmouth Avenue,
Kingston, Ontario K7M 8A6