Researcher in need of advice for a research project related to online privacy and the neurodivergent community.

[Shinaco]

Hello,



I am a researcher at an American university. As a father of two autistic kids, I am interested in doing something that will contribute to improving the lives of the neurodivergent community, which has been mostly ignored by research in my field.

I am investigating online privacy perceptions and privacy behaviors in the neurodivergent community, including the propensity to disclose personal and sensitive information. Part of my study involves asking adult neurodivergent participants in an online anonymous questionnaire to answer questions about potentially sensitive or questionable topics (e.g., questions about the survey-participant’s engagement in activities related to drugs, alcohol, sex, illegal activities, etc.). Here are two specific examples:

1. How many sex partners have you had?

2. Have you ever taken something, no matter how small, from a store without paying for it?


I would like to gauge this community’s opinion about asking this type of questions in a study with neurodivergent participants.

1. Would you feel comfortable answering to this type of question in an anonymous online survey?

2. Would this type of question cause you any stress that you would consider excessive?



In essence, I am trying to establish whether asking this type of questions may be suitable or may cause stress to individuals in the neurodivergent community. Therefore, any comment in addition to the two questions above is also more than welcome.

Keep in mind that this is an informal question, and this is not part of the research itself.
Your answers in this forum will not be used for any publication and will stay in this forum only.

Thank you very much in advance for your help.

 

[lovely_darlingprettybaby]

Hello,



I am a researcher at an American university. As a father of two autistic kids, I am interested in doing something that will contribute to improving the lives of the neurodivergent community, which has been mostly ignored by research in my field.

I am investigating online privacy perceptions and privacy behaviors in the neurodivergent community, including the propensity to disclose personal and sensitive information. Part of my study involves asking adult neurodivergent participants in an online anonymous questionnaire to answer questions about potentially sensitive or questionable topics (e.g., questions about the survey-participant’s engagement in activities related to drugs, alcohol, sex, illegal activities, etc.). Here are two specific examples:

1. How many sex partners have you had?

2. Have you ever taken something, no matter how small, from a store without paying for it?


I would like to gauge this community’s opinion about asking this type of questions in a study with neurodivergent participants.

1. Would you feel comfortable answering to this type of question in an anonymous online survey?

2. Would this type of question cause you any stress that you would consider excessive?



In essence, I am trying to establish whether asking this type of questions may be suitable or may cause stress to individuals in the neurodivergent community. Therefore, any comment in addition to the two questions above is also more than welcome.

Keep in mind that this is an informal question, and this is not part of the research itself.
Your answers in this forum will not be used for any publication and will stay in this forum only.

Thank you very much in advance for your help.

2 I have never taken anything but my sister took a lip balm, I did not take it off her. and i know people who have in front of my eyes like old friends.
I never did though

I think I would not want to have sex before marriage but it gets lonely for me a lot.
I would drink maybe I'm not sure. I did a little when I was younger.
I do not like drunks and have no desire to be that even if they can be funny do not want to watch them puke.

I would never do drugs but know family who were addicts. I think it is an illness. I believe in medicinal cannibus

I have tried smoking and if my partner smoked I would encourage them to give up but if they needed to or had an addiction I would let them just outside and not in the car and would never smoke myself.

I think it is easy for a adhd person to either smoke or sometimes do petty crimes because also of deviant behaviour like experimenting like dropping things on people's heads and see what happens or doing spray paint somewhere. But I actually do not believe in street art without permission
But some people may enjoy doing deviant things.

 

[Jumpinbare]

The questions would not bother me. I'd just answer them.

 

[Rodafina]

Part of my study involves asking adult neurodivergent participants in an online anonymous questionnaire to answer questions about potentially sensitive or questionable topics

How do you expect your research will “contribute to improving the lives of the neurodivergent community?” What is your ultimate goal for the research project?

 

[kriss72]

Hello,



I am a researcher at an American university. As a father of two autistic kids, I am interested in doing something that will contribute to improving the lives of the neurodivergent community, which has been mostly ignored by research in my field.

I am investigating online privacy perceptions and privacy behaviors in the neurodivergent community, including the propensity to disclose personal and sensitive information. Part of my study involves asking adult neurodivergent participants in an online anonymous questionnaire to answer questions about potentially sensitive or questionable topics (e.g., questions about the survey-participant’s engagement in activities related to drugs, alcohol, sex, illegal activities, etc.). Here are two specific examples:

1. How many sex partners have you had?

2. Have you ever taken something, no matter how small, from a store without paying for it?


I would like to gauge this community’s opinion about asking this type of questions in a study with neurodivergent participants.

1. Would you feel comfortable answering to this type of question in an anonymous online survey?

2. Would this type of question cause you any stress that you would consider excessive?



In essence, I am trying to establish whether asking this type of questions may be suitable or may cause stress to individuals in the neurodivergent community. Therefore, any comment in addition to the two questions above is also more than welcome.

Keep in mind that this is an informal question, and this is not part of the research itself.
Your answers in this forum will not be used for any publication and will stay in this forum only.

Thank you very much in advance for your help.

Some years ago there were a big research project about sexuality here About Project SEXUS I was invited to participate, but did not want to as I feared some of the questions would cause too much stress because it could bring back unpleasant memories. I would be reluctant to participate in yours too, for the same reason. However I'm sure many others would be happy to answer.

 

[AutisticRadioGuy]

Hello,



I am a researcher at an American university. As a father of two autistic kids, I am interested in doing something that will contribute to improving the lives of the neurodivergent community, which has been mostly ignored by research in my field.

I am investigating online privacy perceptions and privacy behaviors in the neurodivergent community, including the propensity to disclose personal and sensitive information. Part of my study involves asking adult neurodivergent participants in an online anonymous questionnaire to answer questions about potentially sensitive or questionable topics (e.g., questions about the survey-participant’s engagement in activities related to drugs, alcohol, sex, illegal activities, etc.). Here are two specific examples:

1. How many sex partners have you had?

2. Have you ever taken something, no matter how small, from a store without paying for it?


I would like to gauge this community’s opinion about asking this type of questions in a study with neurodivergent participants.

1. Would you feel comfortable answering to this type of question in an anonymous online survey?

2. Would this type of question cause you any stress that you would consider excessive?



In essence, I am trying to establish whether asking this type of questions may be suitable or may cause stress to individuals in the neurodivergent community. Therefore, any comment in addition to the two questions above is also more than welcome.

Keep in mind that this is an informal question, and this is not part of the research itself.
Your answers in this forum will not be used for any publication and will stay in this forum only.

Thank you very much in advance for your help.

 

[AutisticRadioGuy]

I would have no reluctance to answering these questions but I would not put the answers publicly on the net even in a forum such as this.

Theres an irony in that the same kind of questions and answers are regularly discussed in my work with autistic radio live on air. I do not know why its different other that through the radio program I cannot receive trolling whereas text forums often have people poised to engage in criticism and tiresome "debates"

Sex drugs and rock and roll are the discussions we have as a group. we even edit them up for permanent access to help researchers get to know our inner workings.

 

[Tom]

PLease be more specific. What university? Are you a student working towards a degree and is this survey part of your course work? Or are you an employee of the university? In which case in what capacity and which department?
Right now we really don't know who you are and your poised to ask very personnel questions.

Most researchers give links to their school and department head in case we wish to vet you. And you are only about the 100th 'reasearcher' we've had come thru in the last year.

 

[Cryptid]

Hello,

I am a researcher at an American university ... interested in doing something that will contribute to improving the lives of the neurodivergent community ...

How much will we be paid for our participation? Will we at least receive attribution for what we contribute?

 

[VictorR]

Things that I take into consideration when deciding to participate in surveys / research (and sometimes I've walked out of surveys partway if I found it wasn't satisfactory):

1. Are there clear details about who the researcher is?
Their affiliation, supervisor and/or co-researchers, and that the research has been cleared by their university's research ethics board/committee?
Have they solicited feedback from the community on their research methodology? (like you're doing here - and this is something that unfortunately I don't see much of)

2a. What is the intent of the research? How might this benefit me and/or my peers?
Is it for a thesis that will likely never be read by anyone aside from a couple profs (especially for undergrad theses), or is it for a paper, book, or other publication? If it's being published, is the researcher providing participants the option to be notified of when the results / paper is available and for a copy to be made available to them?
I'm more likely to participate in something with broader impacts (e.g. a policy paper that may impact programs and services offered) or something dear to me (e.g. employment and housing) than something that is really niche and not of much relevance to me.

2b. Is there some other incentive for me to participate (e.g. cash payment, a gift card, or entry in a draw)?

3. What are the privacy considerations / data protection for the collected data?
What level of demographic data is being asked for?
Will contact details be removed/separated from other data provided?
Where and how long is the data being retained for and who else might have access to it?
How is the data protected while it is retained?

4a. How much time is it anticipated to take?

4b. Is there the option to save a response and return to complete it later?

5. Is there the ability to skip questions?
Sometimes I might not be comfortable answering a question, or if might not really be applicable to me.
Along these lines, I also value when a survey is constructed so that a qualifying question is asked, and if a section isn't applicable to me, that said section is skipped altogether rather than me having to fill out "no" or "n/a" to a series of questions.

6. Is there the ability to elaborate on answers?
Sometimes I get a survey where a question appears to be loaded i.e. the way it is worded means that most people will likely answer a certain way, but the reasons why people answer that way may vary significantly, or the reason I'm answering that way may be rather unorthodox.


Note that the actual questions asked isn't really as much of an issue - if I'm comfortable talking and I think the research/study will be of value to the community, I can be open in sharing information in an anonymous study.