UJA Adult with ASD Survey: the time is now to let yourself be heard

11 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation are working together to gather data on ASD Adults using an online survey.

Below is the text of the introduction page. I don’t see anything limiting this to U.S. participants. If you want to see action on issues of importance to ASD adults, this will be a good step.

Welcome to IAN registration and the UJA Adult with ASD Survey.

We will be asking you to complete the following:

1) IAN Registration: Complete demographic and autism spectrum diagnosis questions to register with the Interactive Autism Network (IAN) – the world’s largest online autism research project. By registering with IAN you will have the opportunity to participate in adult-focused surveys (like the UJA Adult with ASD Survey) and will also learn about other studies hoping to invite adults with ASD to participate. We still know very little about the situation or needs of adults with ASD, and IAN hopes to change this by making adult-focused ASD research easier for participants and researchers alike.

We know privacy is important to you. The IAN privacy policy begins on page 5 of the consent document which appears here and will also be available when you view the consent question in a few minutes.

You will need Adobe Reader to open and/or print the research consent document. If you don’t have Adobe Reader, you can get it here: http://get.adobe.com/reader/

2) Consent: After answering the demographic and diagnosis questions, you will be asked to consent to participate in the IAN Research project. Click “yes” or “no” to provide your consent (or not) as you choose. (If you click “no” we will not keep the information you shared in the earlier demographic/diagnosis section.)

3) UJA Adult with ASD Survey: After you consent to participate in IAN, the UJA Adult with ASD Survey will begin. Simply answer the questions to the best of your ability. We thank you for your time and your input.

By Matt Carey

2 Responses to “UJA Adult with ASD Survey: the time is now to let yourself be heard”

  1. Lara Lohne December 11, 2012 at 18:54 #

    I’m assuming this is only open to adults who have an ‘official’ diagnosis and doesn’t include those who are self diagnosed?

  2. Kassiane December 12, 2012 at 07:07 #

    I don’t want any of those people having my personal information.

    People who unapologetically use their wishes to drive their children off bridges do not deserve our cooperation. And yes, I will be holding a grudge about that until the end of time, since that’s how long it’s apparently gunna be for Ms Singer to be sorry.

    Organizations who wish to end people like me don’t get my help.

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