Understanding Autism: Gathering Autism Life Histories

Researchers from Columbia University have asked for our help in reaching out to parents on their project, which has such similar goals to The Thinking Person’s Guide to Autism. We hope that parents of children with autism who can participate, will.

Thank you,

-Shannon, Liz, Jen, & Emily, TPGA Editors

Dear Parent,

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 system of services.

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 are eager to hear about how these factors affected your experience and your child’s experience with autism.

We invite you to tell your story by completing a semi-structured survey in which your identity will remain confidential. In fact, this task is less of a survey and more of a conversation between you and us. There are three main sections to this conversation. The first section is set up to learn about you; we ask you a series of short questions. The second section is designed to learn about your child; we ask a series of short questions about his/her age, birth year and place and interaction with other children. The third section provides you with unlimited space to write about your story in recognizing your child’s autism. We hope you will decide to talk with us.

We thank you in advance for taking the time to read through this invitation and look forward to getting to know you. Please feel free to contact us via e-mail at understandingautism@columbia.edu with any questions that you may have. Please be assured that we will not share your story with anyone other than authorized members of our research team. No one else will have access to it.

To share your story, please click on the following link talk-to-us to the online survey.


Peter Bearman, Principal Investigator

Cole Professor of the Social Sciences