Yesterday I received an email asking that I help spread the word about a study on Autism. Not just Autism itself but on life histories of those involved with Autism. This is the email:
Dear Stuart Duncan, We are researchers at Columbia University's Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child's autism, seeking professional help and navigating the available service systems. We think participation in this study would be of great interest to your readers, and we would like to invite you to write about our survey on your blog. The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child's development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents make different decisions in their quest for obtaining the right diagnosis and care for their child. We would like to give parents the chance to tell their stories. Participation in the survey may help us understand the heterogeneity of autism as well as how children develop over time. We are collecting life stories of parents of children who have autism through an online semi-structured survey at our website, http://www.understandingautism.columbia.edu. You could help our research tremendously by encouraging parents to participate in our study. We thank you in advance for taking the time to read through this invitation and considering writing about our survey on your blog. Please feel free to contact me via e-mail at firstname.lastname@example.org or telephone at 212-854-3440 with any questions that you may have. Sincerely, Peter Bearman, Principal Investigator Cole Professor of the Social Sciences http://www.understandingautism.columbia.edu
Please give them a visit and get involved if so inclined. Information gathering is so important and sharing our stories is what helps others live out their own stories.