Understanding Autism: Autism Life Histories

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
[email protected] 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.