What is important to you when it comes to autism research?

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Hello All,

We are looking for people who are interested in autism and/or autism research to participate in a research study. The study seeks to understand how various stakeholders use autism research and what aspects of research are important to them. This study is titled “Understanding Stakeholder Perspective on Autism Research” and is taking place at the University of Vermont. To participate, you must be 18 years or older.

Participation is entirely online and involves complete an anonymous survey about your use of autism research and what aspects of autism research are important to you. You may take however long or short to complete the survey depending on the amount you choose to share with us, and we anticipate it will take approximately 10-15 minutes to complete.

To find out more or to participate, please use the link below:
https://qualtrics.uvm.edu/jfe/form/SV_7R4kKmG91pgedYG

Please contact Laura Lewis directly if you have any questions about this study at
[email protected].

Thank you for your consideration!
Laura Lewis, PhD, RN (Principal Investigator)

Done.

The fact that the survey was up front about not compensating participants impressed me. Other surveys do not mention this unless asked. I think people with autism may sometimes get suckered in to participating in research and surveys because they expect something in return.

The survey addressed all my other concerns regarding autism research, as well.

Thank you,

Fnord, the Metasyntactic Variable

done, I hope you will make results of this research/ survey available when it is completed. Thank you.

The vast majority of research doesn't compensate participants. It seems like a very odd assumption to make to expect compensation for participating in research.

If anything worth doing is worth doing well, then anything worth doing well is worth being paid well to do.

However, there is a difference between research that benefits humanity (like the OP’s research) and research that benefits a corporation or individual. You can usually tell the difference between them because the ”humanity” researchers usually admit right up front that participants will not be compensated, while corporate or personal researchers either will not admit it unless asked, or will offer only a token payment like a $5 gift card or (like the Red Cross) a cookie and some watered-down juice.

Did you know that patients who receive a pint of donated blood may be charged as much as $500?

Thank you for the feedback and for participating! I will be sure to come back and share findings once we have them. The research process is PAINFULLY slow, so it may not be until next year, but I will come back and share then!

What is the deadline for participating in this survey?

We plan to leave it open until at least May 1, and perhaps longer if we are still do not have enough participants at that point. We will close the link when we are done collecting data, so if the link is still live that means the study is still open.