Autism Research - Please help me with Collecting my data

[amy bayes]

Hi there, my names Amy Bayes.

I am currently undertaking a BA Behavioural Studies degree at Truro/Penwith college.
Part of this degree is to choose a subject of my choice to research and write up as a dissertation report.
Due to having Family Member and several friends with Autism i have chosen to study the effect of diagnosis on Autism/ Aspergers and individual personality types.

This questionnaire is for Adults (18+)
I would really appreciate it if you could take some time to complete my survey - and the myers briggs personality test attached to it.
should take approx 10-25 minutes to do both

All issues of confidentiality, ethics and description are adressed on the questionaire

here is the link https://eSurv.org?s=LHKKFK_d62cb5ba

thank you very much for reading

I checked the rules and i did not see anything against posting research, but of course if this is against the rules of the forum I sincerely apologise and please do take this post down

Kind Regards Amy

 

[Slithytoves]

Hi, Amy.

Thank you for your interest in topics related to our community, and for offering us the opportunity to participate in your survey. I hope you get a good response.

I have completed your survey, and for the benefit of other AC members, I would like to say that this survey was indeed anonymous and a lot of fun to answer. Don't hesitate to help Amy out!

Best wishes,

Jennifer

 

[SignOfLazarus]

I hate to be nitpicky- is there a reason you didn't specify the ethics board that reviewed your proposal for this? [Also possible I missed it, or it was suggested but not explicitly stated?]
Thanks!

 

[Slithytoves]

It's likely because she is an undergrad. Review of undergraduate work in social sciences is usually done by the ethics board of the specific university, in this case, Truro/Penwith, and would follow guidelines from a national entity. If you look at the questions, they are very basic. This isn't hardcore human subjects research.

Edit: I should add that I know this because I have overseen undergraduate research projects in the past as a university employee.

 

[SignOfLazarus]

It's likely because she is an undergrad. Review of undergraduate work in social sciences is usually done by the ethics board of the specific university, in this case, Truro/Penwith, and would follow guidelines from a national entity. If you look at the questions, they are very basic. This isn't hardcore human subjects research.

Edit: I should add that I know this because I have overseen undergraduate research projects in the past as a university employee.

…I'm not sure if it's ok to reply to this. Um, it was just confusing the way it was written so I wasn't sure if that was indicating something else. I don't know how to continue to explain my confusion without seeming rude but you seem familiar with IRBs and have been around here for a while so good enough.
Thanks for clarification.

 

[Tom]

I am thinking of doing a research paper on people who do research papers on Aspies.

Idk. I have done this several times. The researcher never gets back to us... no feedback. At the minimum it would be good if they gave us a link to the report when its done. I know 'its for science', etc, but I think it would be better if you just bought us all here a big cake. But not the over-sugerry kind.

So I don't know if I'll do it. Burnt out already on filling out questionaires to space. We are not subjects. We are not patients. We are not cases. We are just as living, breathing, feeling people as you.

 

[The Penguin]

I am thinking of doing a research paper on people who do research papers on Aspies.

Idk. I have done this several times. The researcher never gets back to us... no feedback. At the minimum it would be good if they gave us a link to the report when its done. I know 'its for science', etc, but I think it would be better if you just bought us all here a big cake. But not the over-sugerry kind.

So I don't know if I'll do it. Burnt out already on filling out questionaires to space. We are not subjects. We are not patients. We are not cases. We are just as living, breathing, feeling people as you.

There something else I learned, if you Google "I am currently undertaking a BA Behavioural Studies degree at Truro/Penwith college. " you also notice she posted on WP, Home - Talk about Autism and many other sites. So in short, she just finding many AS sites and posting the same text.

 

[Slithytoves]

I am thinking of doing a research paper on people who do research papers on Aspies.

Idk. I have done this several times. The researcher never gets back to us... no feedback. At the minimum it would be good if they gave us a link to the report when its done. I know 'its for science', etc, but I think it would be better if you just bought us all here a big cake. But not the over-sugerry kind.

So I don't know if I'll do it. Burnt out already on filling out questionaires to space. We are not subjects. We are not patients. We are not cases. We are just as living, breathing, feeling people as you.

I hope Amy sees what you wrote here, Tom. You made very good points that a student of behavioral studies should to take to heart.

I decided to support Amy's effort because while people may be ignorant of our perspective on being used as "subjects", etc., not cooperating on principle does nothing to make us seem more human. Responding to questions is what makes us real people with real thoughts and feelings in other people's eyes. Amy may never get back to us, but what we say that adds to her project may teach her something about us that she'll carry with her and share with others.

There something else I learned, if you Google "I am currently undertaking a BA Behavioural Studies degree at Truro/Penwith college. " you also notice she posted on WP, Home - Talk about Autism and many other sites. So in short, she just finding many AS sites and posting the same text.

I'm okay with that, personally. Without existing affiliations for a reliable subject pool, she has to cast a big net. Remember, this is an undergraduate student we're talking about. This kind of research is very informal.

 

[Tom]

I hope Amy sees what you wrote here, Tom. You made very good points that a student of behavioral studies should to take to heart. I decided to support Amy's effort because while people may be ignorant of our perspective on being used as "subjects", etc., not cooperating on principle does nothing to make us seem more human. Responding to questions is what makes us real people with real thoughts and feelings in other people's eyes. Amy may never get back to us, but what we say that adds to her project may teach her something about us that she'll carry with her and share with others.

I know I was venting/joking with what I wrote and I don't mind the idea of such student research if it's genuine. Yes, their efforts might contribute to assistance for Autistics in general ... or will it? What conclusions will the researcher come to? What if they are totally out to lunch and destructive ideas? And there is no verification that the information will even be used for the stated purpose. That's why I would like to at least see the resulting report or paper. I think that is not too much to ask in return for being a 'research subject'.

 

[grommet]

I completed the survey. Some of the questions were difficult to answer definitely because they offered binary choices to compound situations but I chose the answer I felt was closest. Good luck with your dissertation.

 

[Tia Maria]

I know I was venting/joking with what I wrote and I don't mind the idea of such student research if it's genuine. Yes, their efforts might contribute to assistance for Autistics in general ... or will it? What conclusions will the researcher come to? What if they are totally out to lunch and destructive ideas? And there is no verification that the information will even be used for the stated purpose. That's why I would like to at least see the resulting report or paper. I think that is not too much to ask in return for being a 'research subject'.

Well, the cake was not a bad idea! But I agree that all student researchers & others who reach out with such requests should make the effort to provide follow-up data & report back upon completion with the results & conclusion, or where a copy can be obtained etc ... It's just a respectful courtesy. That would require them to make at least one return "visit" to each location where they requested & obtained participants. Their original request should also include a project timeline, even if it's just preliminary or subject to change.

 

[amy bayes]

Hi everyone

Thank you so much to those who have completed my survey and also thank you simply for reading my post.
First off i would like to address some concerns listed in your responses. As pointed out i have posted these surveys on a number of forums over the last couple of days, the reason for this is merely numbers, although i have posted this exhaustively i am still receiving very little response, which is unfortunate for me as this will make my research far less credible.
With that said, the responses i receive is not merely a numbers game to me, i have already received some amazing responses, which are both enlightening and heartfelt, but not only that they are also close to home.
The main reason i chose to study in the autism field is due to a close affiliation to a number of family members and close friends who i care for dearly who are on the autistic spectrum, i myself was referred for diagnosis as a child but my parents chose not to do so.
As such i will be trying my hardest to keep up with any questions on my research or anything else on all of the forums i have posted on, not only for the purpose of research but also because i feel truly blessed to even be able to be a small part of some of the amazing on line communities i have discovered whilst undertaking this project.
Which is why it pains me to see that posting like this may have contributed in making people feel like subjects or dehumanized as that was never my intention, questionnaires in essence are not a very personal way of conducting research, although my research will feature a few interviews, questionnaires is unfortunately the only way i can gather enough information on a limited time schedule, if i could have done numerous interviews i would have chosen this way instead, as this would have alleviated some of the feelings of being treated like subjects.

Now in terms of my research, i have already received requests from users who would like a copy of my research when it is finished, and i fully intend to supply anyone who wishes so with a copy, i can either post this on the forum or you can email me personally at [email protected], you may also email me with any questions about the research as i am conducting it, i unfortunately do not have a research timetable, as to be honest i am not incredibly organized, however my research will be completed at the latest may 5th 2015

With regards to the ethical committee, you are right i should have included this, and also the response was correct i am indeed a undergraduate, the ethics board for this research is Plymouth University A

Again thank you so much for allowing me into your wonderful community
I really hope i haven't caused any offence by posting this research
And i am so grateful for your responses.

Amy x


IMPORTANT TO NOTE: i cannot promise cake for completion... mainly because im not a very good cook

 

[Slithytoves]

I know I was venting/joking with what I wrote and I don't mind the idea of such student research if it's genuine. Yes, their efforts might contribute to assistance for Autistics in general ... or will it? What conclusions will the researcher come to? What if they are totally out to lunch and destructive ideas? And there is no verification that the information will even be used for the stated purpose. That's why I would like to at least see the resulting report or paper. I think that is not too much to ask in return for being a 'research subject'.

Totally agreed with your reasoning. I guess it's always a leap of faith to play along. Looks like in this case, we have someone who cares!

IMPORTANT TO NOTE: i cannot promise cake for completion... mainly because im not a very good cook

We have virtual cake in the emojis section if you can't bake for us. I'll pass on that, though. I'm on a virtual diet.

Thanks so much for addressing our concerns and for being so generous with your personal story. If you end up really liking it here, do stick around!

 

[Tom]

Well your the first of about 12-15 I have seen, to take the time to engage with the 'specimens'. You must have some Aspie blood. I will do your survey as soon as I can.

P.S. For your own protection do not discuss your specific research subject here and do not post your report until after you have submitted it in to your Prof. But you can talk on other aspects and are welcome. If a cake isn't feasible doughnuts is ok.

 

[Aspergirl4hire]

Finished my survey. How will you be controlling for double response--ie, multiple responses from one person? If you're not getting enough response, perhaps it doesn't matter, but if you have low responses that will really skew your results.

Second Tom's comments. I would love to see your paper when it's done--not just the results, but how you overcame data analysis problems, and what your null hypothesis was.

 

[SameStars]

I'm in the process of filling out the survey (and probably overthinking this, a lot), but Question 4. How old were you (when you) when you received explanation of your diagnosis? is confusing me. Is it meant in a sort of general way; 'about the diagnosis' rather than the pointed 'your diagnosis'. Because I was already quite informed before the actual diagnosis, so the knowledge proceded that. Or is the question targeting those who were diagnosed as young children but had no real understanding of it at the time?

 

[amy bayes]

whenever you had information or an idea of your diagnosis is fine as an answer, although if its too hard to answer for you, you can skip any questions you wish

data analysis is undecided at the moment, i will probably be using thematic analysis, but that might change.
The answers will always remain anonymous so no worries about that, but i will post the project when its done

 

[Tom]

OK. Did it. But being a Self Diagnosed Aspie, it may not be valid for your research.

 

[amy bayes]

thank you tom
All responses will be of help

 

[DarkAscent]

I would like to answer and help you with your research, Amy Bayes, but I turn 18 later this year!

Good luck and I hope everything goes well with your research.