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online survey on the autism spectrum

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flibbit
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07 Sep 2017, 9:01 am

SaveFerris wrote:
flibbit wrote:
SaveFerris wrote:
flibbit wrote:

Hi, SaveFerris. Just for future, we need adults to fill out their own surveys, unless s/he is a legal guardian of an adult dependent, in which case s/he can answer for his/her ward. But otherwise, we need the respondent to be answering on behalf of him-/herself.

There are ethical concerns about the subject of the survey not having given permission to take part, as well as scientific concerns in that we're asking a lot of detailed medical information that most other people probably aren't aware of or don't have access to. As an example, I know my husband would probably give a great many false negatives on this survey if he were to answer on my behalf even though he knows me very well, which would ultimately falsify the results. Does that make sense?


When I say filled it in on her behalf I just meant I was using the mouse at the time and asking her the questions as she is dyslexic , none of the answers were mine although to be honest I would of given the exact same answers as I know my GF and her medical history very well , better than I know myself :roll:
If this is not acceptable then sorry.


Ah no, then that's totally fine. :) I'm sorry to have been a bit nazi about it earlier, but university ethics boards tend to get rather strict about some of this stuff. I appreciate you and your gf taking part. :D


No worries , Keep calm and carry on :wink:


I say, rath-er! :lol:



flibbit
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08 Sep 2017, 6:31 pm

Bump. :)



bunnyb
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10 Sep 2017, 7:38 pm

Hi Flibbit, I've done the questions but want to ask about my Husband doing it too. He isn't sure if he fulfills the criteria for a control as he has just a touch of ADHD and our son has ASD so he does have a close family member on the spectrum but my sons ASD comes from me unfortunately. If that doesn't preclude him then he is happy to do it.


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Last edited by bunnyb on 10 Sep 2017, 8:37 pm, edited 1 time in total.

Campin_Cat
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10 Sep 2017, 8:12 pm

@flibbit: If you didn't respond by PM, you seemed to have missed a question, on the last page.....













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flibbit
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11 Sep 2017, 8:42 pm

bunnyb wrote:
Hi Flibbit, I've done the questions but want to ask about my Husband doing it too. He isn't sure if he fulfills the criteria for a control as he has just a touch of ADHD and our son has ASD so he does have a close family member on the spectrum but my sons ASD comes from me unfortunately. If that doesn't preclude him then he is happy to do it.


He can totally take part as a parent of someone with ASD, since that's a subgroup we're interested in looking at. But, yeah, unfortunately he wouldn't be part of the control group. But that's okay! :D



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11 Sep 2017, 8:47 pm

nutinmuch wrote:
I'm a little concerned about the storage of the collected data. Can you state that the storage of the collected information is HIPAA compliant, or explain the reason why you don't think HIPAA applies?


Sorry! Totally didn't see this earlier, nutinmuch. The storage of the data is totally HIPAA compliant and is approved by the Greenville Health System Internal Review Board (IRB), which oversees human-based research and ensures it's safe and ethical. The data are stored on a secure hospital-based network, is login protected (I'm the only one who uses and is allowed to use this particular computer), and is stored in a locked office at a hospital university campus.

Any more questions? :)



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11 Sep 2017, 8:47 pm

Campin_Cat wrote:
@flibbit: If you didn't respond by PM, you seemed to have missed a question, on the last page.....


Thanks! Completely missed it earlier. :)



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15 Sep 2017, 12:24 pm

Bump. :mrgreen:



firemonkey
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18 Sep 2017, 11:04 am

Tried posting about survey on National autistic society forum but post was deleted . Got following message.


We have had to remove your recent post "Expanding our understanding of symptoms associated with Autistic Spectrum Disorder & Ehlers-Danlos Syndrome" as it contravenes our rule 8 of the community:


8. Requests for research study subjects and surveys need to be directed to [email protected] for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.



flibbit
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21 Sep 2017, 1:24 pm

firemonkey wrote:
Tried posting about survey on National autistic society forum but post was deleted . Got following message.


We have had to remove your recent post "Expanding our understanding of symptoms associated with Autistic Spectrum Disorder & Ehlers-Danlos Syndrome" as it contravenes our rule 8 of the community:


8. Requests for research study subjects and surveys need to be directed to [email protected] for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.


Yes, some places have stricter rules for posting advertisements, although concerning ethics that's a good thing! :) I appreciate your effort though.

Even if a website doesn't have written rules, I generally approach the admin staff to get permission prior to posting, just as a courtesy. It tends to prevent problems.



flibbit
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27 Sep 2017, 7:03 pm

Data collection is going well, although we're still having challenging getting control participants (people who aren't on either the autism or EDS spectrums). Hopefully, we'll get enough numbers by the close of the survey. Fingers crossed!



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27 Sep 2017, 11:18 pm

Only just saw this.

Completed the survey and must say it was visually pleasing for me. Prefer light letters on a dark background, so thank you.

Good to see you again, Sophist, it's been a while. And you're married! Excellent. Doctor too! Wow. You have been busy. :)



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28 Sep 2017, 6:45 am

renaeden wrote:
Only just saw this.

Completed the survey and must say it was visually pleasing for me. Prefer light letters on a dark background, so thank you.

Good to see you again, Sophist, it's been a while. And you're married! Excellent. Doctor too! Wow. You have been busy. :)


renaeden, SQUEEEEE!! !! :D :D :D Long time no talk!! ! How have you been? We should catch up. I miss the old gang from Gestalt. I'm in touch with a few via Facebook.

Things are going well for me (well, ya know, ups and downs, but more ups than downs so what more can one ask?). Got married to Manny a couple years ago and also finished grad school in 2014. Hoping to make junior faculty this summer/fall, but we'll see. The research is going well, although the business side of research always sucks.

What've you been up to? :D

PS: Thanks for taking the survey!



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29 Sep 2017, 3:05 am

flibbit wrote:
renaeden wrote:
Only just saw this.

Completed the survey and must say it was visually pleasing for me. Prefer light letters on a dark background, so thank you.

Good to see you again, Sophist, it's been a while. And you're married! Excellent. Doctor too! Wow. You have been busy. :)


renaeden, SQUEEEEE!! ! ! :D :D :D Long time no talk!! ! How have you been? We should catch up. I miss the old gang from Gestalt. I'm in touch with a few via Facebook.

Things are going well for me (well, ya know, ups and downs, but more ups than downs so what more can one ask?). Got married to Manny a couple years ago and also finished grad school in 2014. Hoping to make junior faculty this summer/fall, but we'll see. The research is going well, although the business side of research always sucks.

What've you been up to? :D

PS: Thanks for taking the survey!
No worries about the survey. As far as surveys go, it was a very good one. 8)

I eventually got my Bachelor of Psychology, heh. Graduation was surreal, having never been part of anything like that before.

Now I'm doing computer programming at TAFE (Tertiary And Further Education). I hope to attend Curtin University's Autism Academy for their Software Quality Assurance course. I got the application form a couple of days ago. So that's me. Computer stuff! I really want a job at this point as being a poor student has lost its novelty, heh.
I'll pm you with my Facebook name.



flibbit
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29 Sep 2017, 12:25 pm

renaeden wrote:
flibbit wrote:
renaeden wrote:
Only just saw this.

Completed the survey and must say it was visually pleasing for me. Prefer light letters on a dark background, so thank you.

Good to see you again, Sophist, it's been a while. And you're married! Excellent. Doctor too! Wow. You have been busy. :)


renaeden, SQUEEEEE!! ! ! :D :D :D Long time no talk!! ! How have you been? We should catch up. I miss the old gang from Gestalt. I'm in touch with a few via Facebook.

Things are going well for me (well, ya know, ups and downs, but more ups than downs so what more can one ask?). Got married to Manny a couple years ago and also finished grad school in 2014. Hoping to make junior faculty this summer/fall, but we'll see. The research is going well, although the business side of research always sucks.

What've you been up to? :D

PS: Thanks for taking the survey!
No worries about the survey. As far as surveys go, it was a very good one. 8)

I eventually got my Bachelor of Psychology, heh. Graduation was surreal, having never been part of anything like that before.

Now I'm doing computer programming at TAFE (Tertiary And Further Education). I hope to attend Curtin University's Autism Academy for their Software Quality Assurance course. I got the application form a couple of days ago. So that's me. Computer stuff! I really want a job at this point as being a poor student has lost its novelty, heh.
I'll pm you with my Facebook name.


That's so cool, renaeden. :D You've really done a lot in the past couple years. Computers sound exciting! Any particular areas of programming you enjoy and want to work in?



renaeden
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30 Sep 2017, 1:49 am

I think the same as you, you've done heaps!

I'm not sure about what I will do about programming yet. So far I have only done a term of Java and am about to start another term of it. After that I have C#, a semester of that. I've been told that Python is worth learning, so I will try and teach myself that. There's plenty online for me to learn from.

Programming can be both frustrating and satisfying. My teacher is excellent but also abstract in his teaching which can sometimes, well ok, most of the time, stump me. But I have seen him do the same to others, so I'm glad I'm not the only one.

This has gone greatly off-topic, so I will continue via PM!