January 6, 2006

Dear Research Participants:

As we begin a New Year, we would like to share the following news with you regarding some of our activities over the last year.

New Website

We have redesigned our website to support our research participants more effectively. The new site features new information, new features, and the opportunity for you to provide your feedback and to communicate with other families. We invite you to visit We will be adding more information and new interactive features on an ongoing basis, and invite you to check back regularly.

Research Participants

We now have more than 1700 families participating in our on-line research and helping us to understand autism.

I came across this wonderful quotation, which I would like to share with you - it is a motto that I feel is important in guiding our search for answers that help us understand autism:

"Some things have to be believed to be seen"

Ralph Hodgson (1871-1962)

As all of you know, every little step that our loved ones with autism make is like climbing Mount Everest, or running the Boston Marathon, or swimming the English Channel - or more close to my home - swimming across Lake Ontario. Jim, my brother with autistic disorder, turned 53 at the end of November. As our Mother and I reflected over the holidays, this has perhaps been the most precious year for all of us. From essentially non-verbal less than 3 years ago, Jim is now talking and telling us what he feels and thinks, pronouncing words so that most people can understand him. He started using a computer to write words about 18 months ago, and from completely illiterate he learned the alphabet and is now typing long sentences that he makes up! Each word has been memorized - he doesn't use phonics because he has moderate hearing loss, and thus it is difficult to sound out words and figure out the letters. But we are working on this, and he is figuring out some of the sounds. We certainly appreciate how difficult English is to learn, as we go through these difficult steps!

I'd like to share a bit about Jim's story here, and will provide regular updates during 2006!

On-Line Questionnaires to Characterize and Subgroup Families

Although it is often said that "each case of autism is unique", that is not really true. We believe there are many individuals who are just like Jim, just as there are many who are similar to you or to your child or adult with ASD. It is our belief that learning as much as possible about each family, is critical to understanding ASDs - their etiology and the best treatments for each subgroup. Wouldn't it be wonderful to determine who else is like my brother Jim - and to introduce an inexpensive auditory trainer and a simple computer program to teach one how to communicate - not at 50 years of age, but at 4 years of age. Imagine - imagine what Jim's life would be like if we had known what to do 50 years ago...

Through our Research Questionnaires and Surveys, we hope to identify other "Jim's" and other children and adults with different "types" of ASD and through families sharing what works best for their children or individuals sharing what works best for themselves.

Many families participate in our On-Line Questionnaires, designed to help us group families into subgroups, based on similar characteristics. Data analysis is in progress on several of these questionnaires, and we will be sharing some of these interim results with you during the next few months.

In order for your results to be included in these analyses, we need information on those individuals in your families who have an ASD, and this requires completing the PDDBI. Click here to learn more about our questionnaires and to participate in these studies.

Our Publications

We have many publications on our research over the last few years, and invite you to browse this list. There will be summaries of many of these articles, and links to pdf versions of several of them soon.

New Website

We are making changes to our website, the first of which you can see at our new website address We have been working to build tools for our members to develop a Virtual Community of Autism Stakeholders, through AutismConnects. Many of these tools are now available, and we hope that you will join us by participating in various features that we will be adding. These include:

  • Celebrate the Spectrum - opportunities to share stories, photographs and drawings, as well as links to your own websites, with other members of the AutismConnects Community
  • Information - This section will be updated frequently to provide information about resources, presentations, and opportunities to share information with other AutismConnects members
  • Connections - An opportunity to connect, confidentially, with other members of the AutismConnects community, through discussion forums.

Please feel free to provide feedback and suggestions regarding the new website.

As we begin a New Year, the Researchers, Staff and Trainees at ASD-CARC would like to wish you Peace and Happiness in 2006.

Jeanette Holden, PhD,
ASD-CARC Program Director