Autism researchers want your input: Autism Life Histories at Columbia

17 Sep

Prof. Peter Bearman’s group at Columbia has done and is still doing much in the way of autism epidemiology research. We have discussed many of his group’s papers here on LeftBrainRightBrain. Prof. Bearman’s group now has a website up, Understanding Autism.

As a part of their continuing research into autism, the Bearman team has launched a new project, AutismLifeHistories.org. This is essentially a survey to collect information from parents about their child’s

edit to add–here is how I intended that sentence to read
This is essentially a survey to collect information from parents about their child’s history, but nothing prevents a self-advocate from submitting information on him/her self.

The full description is below, but here is a shorter version from page 1 of the survey:

The purpose of this online survey is to learn about how you recognized your child’s autism, sought professional help and navigated the system of services. We hope that these stories help us arrive at a better understanding of the difficulties of the road to diagnosis and service provision.

While we do not believe that the content and the nature of the questions presented in this survey will cause you any discomfort, your participation is absolutely voluntary throughout the survey. This means that you are free to leave this survey at any time you wish. We will only read your responses if you complete and submit your responses.

It took me about 10 minutes. One could easily spend less.

Here is the longer description of the project:

Autism Life Histories
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.

Sincerely,

Peter Bearman, Principal Investigator
Cole Professor of the Social Sciences

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8 Responses to “Autism researchers want your input: Autism Life Histories at Columbia”

  1. Katie September 18, 2010 at 05:21 #

    If they’re looking for autism life histories, why don’t they ask people who are actually autistic and have lived life a little (ie, adults)? I don’t dispute the importance of the research they are doing, but honestly, how rich of a “life history” can a 3 year old have? This is a parent survey, not an autism life history.

  2. Clay September 18, 2010 at 05:34 #

    Yeah, screw ’em. They’re trying to do something about us, without us! Let them come to us!

  3. Audrey September 18, 2010 at 14:16 #

    As both a person with ASD and a researcher on ASD, it has been my experience that researchers don’t usually (there may be exceptions) deliberately exclude the input of people with ASD, it just doesn’t occur to them to seek it. I’m going to drop them an email asking that they add a mechanism for people with ASD to give their input and I suggest that you do the same. Maybe they won’t with this particular project, but it will put the idea in their heads for the future.

  4. Sullivan September 18, 2010 at 16:18 #

    Clay,

    Why not give them some feedback on this issue? I gave them feedback including suggestions that the parent/autistic-child perspective of autism is rather incomplete and that they might consider broadening the language to be more open to adults speaking for themselves.

    You will see I left a dangling sentence above. I meant to finish it like this:

    his is essentially a survey to collect information from parents about their child’s history, but nothing prevents a self-advocate from submitting information on him/her self

  5. Katie September 18, 2010 at 18:31 #

    I did, in fact, fill out the survey about myself. I also emailed them about the inappropriate language on their site describing autism as a “devastating disorder which blah blah blah”. You’d think scientists would know better than to use such emotionally-laden subjective terms as “devastating” but I guess they are just parroting what they hear everywhere else without bothering to think about what that means.

  6. Peter Bearman October 31, 2010 at 02:36 #

    Thanks for your comments. We did realize in response to Katie’s email that our language was not very well conceived and changed it; and we did create a survey for persons with autism to complete. These and other suggestions we received have been very helpful, and I want to thank you for making them.
    Peter Bearman

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Autism researchers want your input: Autism Life Histories at Columbia « Left Brain/Right Brain -- Topsy.com - September 18, 2010

    […] This post was mentioned on Twitter by Kev, Lyndsay Farlow. Lyndsay Farlow said: RT @johnnyA99: Autism researchers want your input: Autism Life Histories at Columbia http://bit.ly/b7ouZ5 #autism via @kevleitch […]

  2. Repost – Autism Researchers want your input | autismjungle - September 18, 2011

    […] to blogger Sullivan at Left Brain Right Brain for mentioning these two research projects. The first one is from Columbia University. It is a request for stories from parents of autistic children. […]

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