online survey on the autism spectrum

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Data collection is going great so far, guys. At present we have over 200 respondents and still looking to collect quite a few more. (Aiming to keep the survey open until December.)

We have great representation from both the autism and EDS/hypermobility spectrum communities. However, the one area in which we're still really lacking is controls, i.e., folks without either autism or EDS (or a close family member with either of those conditions) to take the survey. And without a control group, unfortunately the autism/EDS data doesn't mean a whole lot since we'll have no one to compare it to.

So if you have any friends, acquaintances, or family who you think might be willing to participate, please consider letting them know about the survey. Also, feel free to share the link to the survey in other communities, provided administrators are okay with it.

The link again: here.

Right now we have about 200 autism and EDS participants but only 7 controls. If you have any suggestions as to other places I may be able to advertise to collect more controls, I'm all "ears."

Thanks for all the help, everyone! I love that these two surveys have been a true community effort.

Have posted that you are looking for controls on several forums I go on.

Brilliant, firemonkey. Thanks very much!

Oh dear goodness I remember you!! I used to read your posts! God, this is weird! I remembered you because I liked what you posted a lot, but I was scared of your username !

Stampy,
I'm guessing you were scared of my user name because it was a reference to A Beautiful Mind, which is about schizophrenia?

Sophist/flibbit
Yes, my account went wacky when the site had that shut-down a few years back. I tried to reactivate my account, but it just never worked. The e-mail I used is now old, too, so I was missing the site recently and just thought I'd rejoin with a different name. Not a lot of long-time users anymore, anyway, so I didn't think many would even remember my old handle. Lol

Yeah, even though I have heard it is a great movie and the guy it was based on did some pretty amazing things. It's the disorder, not the person I am scared of. I know I talk to people here who have schizophrenia and I'm okay with it. I just don't want it myself, if that makes sense. ^^^^^^

A Beautiful Mind is a great movie, but I don't advise you watching it until your schizophrenia OCD is better. It would probably trigger you. But I made my original account on here in fall of 2006, right after I received my official AS diagnosis and when A Beautiful Mind was one of my big special interests. It's still my favorite movie, but at the time, it was a fairly new special interest (I never watched it until 2005), so it was what I would ramble about and think about all the time.

Survey filled in on my GF behalf as she more likely to have EDS

Ah, that's what happened. Ah well. Bye-bye, Sophist, lol.



I love A Beautiful Mind. Definitely on my list of favorite movies.



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?

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?

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
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.

No worries , Keep calm and carry on

I say, rath-er!

Bump.

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.

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