Wednesday, October 20, 2010

A Research Opportunity for Parents of Children with Autism

Hi all,

Ok, you know I don't pimp products or services here.  I will occassional review something because I like it, but I am not into pushing anything.  That's just how I roll. 


I am a total geek when it comes to research.  Maybe it is because I did the whole doctorate/grad school gig and know what that is like.  Maybe it is because I know that quality research is our best hope of making things better.  Who knows....again, just how I roll....

So when I received a letter from Columbia University's Institute for Social and Economic Research and Policy (Really guys?  Think about shortening that title.  From now on, the CUISERP) asking me if I might let my readers know about a study they were conducting on parent experiences related to their child's diagnosis of autism, I can't help it.... my inner geek said YES.

So, if you have a child with an ASD diagnosis and have a little time to fill out their survey, please please do.  It is a chance for your voice to be heard.  And please, pass this post on to anyone else who might also be willing to lend their voice. 

(the letter below)

Dear The Crack and The Light,

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, . 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 or telephone at 212-854-3440 at with any questions that you may have.


Peter Bearman, Principal Investigator
Cole Professor of the Social Sciences


Michelle said...

We're also involved in a research study for kids with autism as well as their younger siblings. Is this study only for people living in the US? We're in Canada but I'd love to participate.

Cheryl D. said...

They contacted me also, and I pushed the study on my blog too! They need lots of participation for the results to be meaningful! I did the survey, and it didn't take much time! I highly encourage parents of kids on the spectrum to participate!

Pia said...

Michelle - I would email them at and ask. I can't imagine why they wouldn't want your participation! :)

Cheryl - I completely agree. I am thinking of emailing the info to the local support group here. More info always helps!!!


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