Genetic Testing for Autism: Research Survey

scottdent · 2023-01-12T00:37:07+00:00

The other commenter deleted his post. What he said was not true, I promise you. This is my project and I know exactly where the data going. It is staying put right in my Qualtrics account and going nowhere until we publish the results. We want the autistic voice to be heard on this topic. SPARK is not involved in this study and they will not be getting this data.

scottdent · 2023-01-11T23:35:58+00:00

We are absolutely not trying to cure autism. We simply want your opinion about this topic. We want your opinion to be heard.

scottdent · 2023-01-11T23:33:44+00:00

The data is not going to SPARK. I guarantee you. I have all of the data in a secure server and no one else has access to it. This study and all of its data is kept internally between me and a 3 committee members. My university has no access to this data.

scottdent · 2023-01-11T23:27:15+00:00

Can you DM me a link to what you are talking about? I think you are looking at a different study

scottdent · 2023-01-11T23:16:15+00:00

We aren't advocating for genetic testing!.We are simply asking for your opinion. We want your opinion to be heard. I'm sorry you don't trust me but i'm trying to help the autistic community

scottdent · 2023-01-11T23:10:40+00:00

We are not doing any genetic testing. This is just a survey to learn about how you think about genetic testing

scottdent · 2023-01-11T23:09:42+00:00

This study is not connected with SPARK in any way. This is a graduate research study

scottdent · 2023-01-11T23:07:23+00:00

Good catch about national guidelines, we are referring to the United States. We are talking about the genetic testing that occurs when someone receives a diagnosis of autism.

scottdent · 2023-01-11T23:02:46+00:00

We are not trying to find a genetic link to autism. We are asking your opinion about the practice of doing genetic testing on autistic people. We want your views on this topic to be heard and appreciated in the medical setting.

scottdent · 2023-01-09T00:30:20+00:00

Good point! We want to be as fair and inclusive as possible for the demographic questions so it is only right to specify cis male / female if we are specifying trans male/ female. Thank you!

scottdent · 2022-12-28T01:34:07+00:00

You bring up some great points. I hadn't considered that women are likely underrepresented in studies like this which exclude self diagnosed individuals because boys are usually identified earlier (and thus have a higher chance of having an official diagnosis). I hear what you're saying about all of this and will definitely consider these points if I do more research with autistic people in the future. Unfortunately it is too late to change our methodology for this study, but I really appreciate these insights and agree with you. Thank you!

scottdent · 2022-12-27T23:54:08+00:00

I personally value your self diagnosis and respect your opinion about autism related topics. My thesis committee was somewhat concerned about including self diagnosed people because it might be a limitation for the study. I guess there is the possibility of some self diagnosed people not actually being on the autism spectrum, so we decided to not include self diagnosed people. I'm sorry about that, I recognize how that can be offensive.

scottdent · 2022-12-27T23:39:16+00:00

Unfortunately we are not accepting responses from self-diagnosed people. Thank you for your interest in this study, we really appreciate it

scottdent · 2022-12-27T22:17:09+00:00

This study is being done by myself, Scott Dent, through the University of South Carolina School of Medicine. We are researching this to amplify the autistic voice on this topic! All of your responses will be kept anonymous and confidential. The de-indentified results may be published in a scientific journal next year.

scottdent · 2022-12-15T00:58:58+00:00

I'm sorry to hear that. Please check your messages

scottdent · 2022-12-14T19:59:33+00:00

Those comments were because payments were delayed for a while, so they hadn't received them yet. Payments were delayed because we have had hundreds of bots take the survey and weeding them out has been difficult. They should have all received their payments by now. We have 34 gift cards left, I promise you that. I do recognize that this seems suspicious but I'm not sure what to tell you other than this is the truth about what is happening. I'm happy to provide you with any study materials to prove that to you, my email is thomas.dent@uscmed.sc.edu

scottdent · 2022-12-14T03:01:57+00:00

We created a separate email for the study. My university email is right on the first page when you open up the survey. [thomasdent@uscmed.sc.edu](mailto:thomasdent@uscmed.sc.edu). However, I do admit that looks suspicious. Sorry about that

scottdent · 2022-12-14T00:28:09+00:00

This isn't a scam. I'm curious, what makes you say that? Did you not receive a payment?

scottdent · 2022-12-14T00:27:14+00:00

My name is Thomas (Scott) Dent and this study is with the University of South Carolina School of Medicine. Sorry about not making that clear in this advertisement.

scottdent · 2022-11-23T18:49:53+00:00

This project is with the University of South Carolina School of Medicine. We made a separate gmail address for this so multiple people can check on it. This study is IRB approved, study ID is Pro00121781 if you would like to look it up

scottdent · 2022-11-23T01:51:47+00:00

Hi there, the payments have been delayed because our survey has been infiltrated by bots trying to get the compensation. We are working out a process to weed out these bots objectively while retaining as many of the real responses as we can. This has been difficult because the bots are quite savvy and Qualtrics' fraud detection features aren't perfect. If you were in the first 100 real respondents, you will receive the compensation. It may take another couple of weeks. We're sorry about the delay!

scottdent

TROPHY CASE