MESSAGE FROM DR. JEANETTE HOLDEN

May 4, 2006 (Happy 84th Birthday, Mom!)

Dear Research Participants:

For those of you who have been anxious for Spring to arrive, we hope that it has! This issue of the Newsletter describes our new partner website, AutismConnects – and creating an Autism Virtual Community. Please consider joining and helping us to develop an information and discussion area that will help you and other individuals and families with an ASD. Also encourage service providers, volunteers and friends to join as you share your experiences, joys and challenges.
We continue to broaden the research issues we are addressing to further our understanding of Autism, and hope you will find the time to help us all Understand Autism further by completing the new questionnaires we have added to our on-line Research. As a reminder, we are only able to include your questionnaire findings in our data analyses if you complete some key questionnaires. These include the PDDBI and the SCQ. We appreciate the time it takes for you to participate in our research, and we Thank each of you for sharing your time with us.
We have also added features to make your visits easier without reducing our commitment to the security of information you provide. If you’ve forgotten your username and/or password, please email us at autism@post.queensu.ca and we will contact you, asking a few security questions, and will provide you with the information you need so you can participate in new studies!

AutismConnects – Creating an Autism Virtual Community

AutismConnects is your portal to an online, worldwide interactive autism community where people whose lives have been touched by autism spectrum disorders meet to share and discuss the latest news, resources, research, current trends and hot topics about ASDs. The AutismConnects community is open to people with ASDs, their families and friends, educators, therapists, service providers, as well as researchers, legislators, and volunteers, all sharing a desire to improve the health, quality of life and personal relationships of people with ASDs. If you belong to one of these groups, we invite you to help us create this community by becoming a member of AutismConnects where you can discuss issues with other interested individuals through our AutismDiscuss forum; share photos, stories, artwork, and remembrances at Celebrate the Spectrum; share information on services you provide or that you are aware of through AutismServices; and more. The AutismConnects Community is just starting – help us to help others by sharing your experiences and knowledge through this Virtual Community.

NEW STUDY: Social Communication Questionnaire (SCQ)

The SCQ is a 40-item, measure that taps the symptomatology associated with autism spectrum disorders (ASDs) and can be completed in less than 10 minutes. We would like all families to complete this on each of their children including those with and without an ASD.

NEW STUDY: Language Proficiency Profiles (LPP-2 and LPP-NV)

The LPP-2 has been designed to identify the developing language skills of children who use a variety of means to communicate. The LPP-NV questionnaires assesses the language abilities and uses by individuals who are non-verbal.

NEW STUDY: Psychological Well-being in Parents Study

There is little question that acting as a caregiver can exact a toll on an individual. However, it is also the case that such an experience may also have positive effects. Among other things, family closeness or personal growth are found in caregivers of children with an ASD. There are certainly a great number of factors that determine the impact of having a developmentally delayed child, and it is our hope to be able to determine those factors that facilitate well-being. Ultimately, this will allow us to develop programs that will help those individuals having a hard time dealing with their situation.
We're interested in studying the psychological well-being of individuals with a child with an ASD, and to determine the influence of a number of factors, including coping styles and social support resources on psychological well-being.
This information can be very helpful for advocating for additional services for families. This study is a collaborative study with Drs. Hymie Anisman, Kim Matheson and Mary Gick of the Centre for Research Stress, Coping and Well-being at Carleton University.

Autism Society Ontario – Teen Survey – Help ASO Lobby for your child’s needs during transition from School to Community

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. Please share this message with other families you know with teenagers with an ASD.

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

Listening to family members: Our ASD-CARC is very fortunate to have a very active and knowledgeable Parent Advisory Group – PAG for short. This terrific group of parents developed a questionnaire based on thoughts and observations that they have had over the years and this has been developed into the PAG Questionnaire. Since it is very lengthy, we are releasing new sections every few weeks. Section 3 is being released today. To complete these questionnaires, you need to login as a Research Registry Member. 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 few weeks.

Please feel free to provide feedback and suggestions at any time, to: autism.research@queensu.ca

Sincerely,
Jeanette Holden, PhD
ASD-CARC Program Director

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