Thursday, January 17, 2008

Request for Information: Researchers Compiling List of Autism Advocacy Groups in California

Researchers at Columbia University who are studying autism advocacy efforts under a grant from the National Institutes of Health are seeking information from the autism advocacy community to help them build a directory of California-based groups.

The researchers are looking into all the possible factors they can study to help explain why the prevalence of autism continues to rise. They plan to make the information they collect available to the public. They put out their request for information on Jan. 11, and are seeking this information by February 15, 2008.

You can learn more about the "Project on the Social Determinants of Autism" by clicking here. You can read an Autism Bulletin article on the project here: Study of Social, Environmental Factors in Autism Subject of High-Profile NIH Grant.

Here is the text of the request for information:

We are a group of researchers at Columbia University who would like to compile a list of autism advocacy and nonprofit organizations in the state of California into a comprehensive directory. We are interested in organizations of all sizes, types and locations. We hope to make this directory a publicly available all-inclusive resource serving the autism community, in addition to helping us answer some of our research questions related to understanding the autism epidemic.

This research is funded by the 2007 NIH Pioneer Award, to Peter Bearman.

If you work for or participate in an organization or group in California we would very much appreciate it if you could send us the name of the group and any contact information you may have. Once we build a complete list, we will contact those organizations directly.

To write us, please send an email to For further information on the project please visit our website at Thank you in advance for your time and assistance in accomplishing this project.

More About the Research Project

Background from the group's website:

Since 1965 advocacy and nonprofit organizations have played a priceless role in thrusting autism into the public eye through working with local communities, lobbying on national legislative levels, and pushing for funding of autism research. The parent-researcher-advocate triad model was and continues to be critical to the evolution of the autism advocacy movement.

In our project, we are aiming at a better understanding of the diverse roles and scope of activities of these organizations , how efficacious the autism advocacy movement has been and its role in disseminating information about autism and autism spectrum disorders to the public.

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