January 20, 2006

Dear Research Participants:

I would like to thank those of you who have had a chance to visit our new website at and provide feedback to us. We also thank you for your patience as new elements are released; do not hesitate to contact us at if you have any problems. If you’ve forgotten your username and/or password, please email us and we will contact you, asking a few security questions, and will provide you with the needed information so you can participate in new studies!

Autism Society Ontario – Teen Survey

If you live in Ontario and have a teenager with an ASD, we invite you to complete the Needs Survey. The purpose of this survey is to learn about your needs during the next year, so that ASO can lobby for services and support on your behalf.

CAPability Conference - Feb 6, 2006: Kingston, Ontario

If you live near Kingston, Ontario, we hope you will consider attending this free Conference aimed at educating others about the needs of persons with a range of disabilities (blind, vision impairment; deaf, hearing impaired; cognitive impairment; physical disabilities; psychological disabilities). For more information, and to register, click here.

Parent Advisory Group Questionnaire – Providing ASD-CARC researchers with new directions for research

Listening to family members: Many years ago, my Mother said to me that she just wished that people who worked with my brother Jim would simply explain things to Jim before they made changes to his seating arrangements at his sheltered workshop, or to his schedule. Despite the fact that Jim did not have much language, he did understood much of what people were saying, however, if they don’t speak clearly and simply, he only comprehends every few words, and he can misinterpret what they are saying and become very upset because he thinks he is being punished when they make changes, and he doesn’t know what he has done wrong. For example, one day he came home very very upset, and when my Mother called to find out what happened, they told her that they felt a lady who Jim liked to bring coffee and tea and her coat to, because she has a walker and cannot do it easily herself, was taking advantage of Jim and becoming lazy. To “correct” this, they separated Jim and his friend, moving Jim to sit with other people while he worked. Jim felt he was being punished – wouldn’t you feel the same if no-one explained the situation? This taught me a very special and important lesson: that no matter how much training and education “professionals” have, they are not the experts about the children of others. Families have so much to offer professionals, if they would only listen.

Our ASD-CARC is blessed with the good fortune of having a very active and knowledgeable Parent Advisory Group – PAG for short. This terrific group of parents had many discussions, and decided that there were so many questions that they each had, that they would develop a questionnaire based on these questions and their own observations: the PAG Questionnaire. They had so many questions, that it has been broken down into small sections, that will be released every approximately 2 weeks. We hope you will help us develop new areas of research by completing each section, which will take only a few minutes of your time every 2 weeks.

Please feel free to provide feedback and suggestions at any time, to:


Jeanette Holden, PhD
ASD-CARC Program Director