Neurodiversity-friendly survey by autistic self-advocate

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If it were all within my control, I already would gladly share findings so far with anyone interested. Since this is for research and I am part of a team, let me get back to you on that. If I were in your position I would be very curious and eager to get a sense of how others answered the survey, so I think I understand. I'd like to thank the participants and constructive criticisms so far - we make modifications where we can, we'll note them in the paper, and they'll help to inform future research - in positive, empowering ways, I think! I wish I could be more immediately helpful though; I hope to get a response soon and see what I can disclose and when.

I also wish to clarify that the survey will be open to get more participants for a while longer, perhaps at least a few more weeks. If you would like to share it with anyone, feel free. Neurotypicals can take it too, for that matter.

Sorry about the delay, but I now have some information about sharing the results of the survey with the fellow autistic community. I could e-mail preliminary results once all the data is analyzed and before a paper is submitted. I could keep track of who wants results and send them to you once ready. I could blog about the results when it comes to it too, and am open to suggestions.

I also now know the survey will be up until the end of October, so it would be great if more people take this survey on the autism spectrum and the Internet, identity, and perception: http://www.surveymonkey.com/s/NNWDRT9 I appreciate all those who have given their time (15-20 minutes or so) and interest so far.

Sharing the survey with other autistics or any neurotypicals would be great too - it's open to everyone. Autistics have given such great energy and input, better than the NTs I would easily say, so let's keep in going.

FYI, here is a blog entry I wrote last year, which describes my thinking about autism and advocacy relate to the spectrum: http://www.rethinkingautism.com/Rethink ... _Post.html
I'm posting it in case you'd like a better sense of who I am/what my intentions are. I relate if you feel suspicious when you see surveys posted by researchers, or of professionals in the clinical or medical fields in general (I'm not in either, just educational). Personally I've hardly ever felt that a therapist or doctor etc. has been especially helpful regarding spectrum-related things - mostly just friends or otherwise friendly people, family, and my own efforts. Everyone has an agenda and worldview and it bothers me that most "mainstream" researchers do not think critically about their own or the general models that stigmatize and dehumanize people. So my agenda is applying civil rights and socio-cultural thought to people who have been medicalized.

In anyone has feedback on my blog or anything I've said (in support and/or critical), I'd welcome it. Otherwise I don't think I have anything to add related to the survey.

I would like to hear what the others have to say about it. In my opinion I think it would be great to see the results at a blog!
Good job, I'm looking forward to the end of October.

Thanks! Some autistics sharply feel differently (as feedback I've received on a blog shows), so here are some public clarifications:

Here’s some information about the survey methods and intentions. First of all, I did not design most of the survey, including these parts, but have given significant feedback. Most of the survey was designed when I found out about it and only so many changes would be made at that point. So if you have more specific questions, I can gladly direct you to the main person who designed it.

The questions at the end are related to the Autism Quotient (AQ). The AQ measures traits that are fully continuous into the general population, not deficits (it measures tendencies or preferences, not inability). People can score a 50 and have a great social life – married, friends, good job, etc. – and be happy. It’s definitely not a perfect measure and I cans see that it might appear very stigmatizing though. We are interested in how personality traits associated with being autistic or not – literally everyone at least 7 was eligible to take this survey – might relate to autistic culture and strengths in visual perception (yes, the pictures are related to visual strengths that many autistics have). It’s possible these differences and activities relate to one another, but maybe not – hence the research.

We are sensitive to concerns about the AQ and everything else that relate to the disconnect between autistics and “mainstream” NT-dominated communities. We definitely plan to include such feedback from autistics in the paper we plan to write and make clear that researchers need to be more sensitive, understanding, and respectful toward autistics’ and other groups’ ways of being and views.

As for who is counted as autistic, that has NOTHING to do with the AQ. What determines whether we count someone as on the spectrum is if they identify as such (“Do you consider yourself to be autistic or on the autism spectrum”). That’s it. We are interested in identity, after all.

We are going out of our way to constantly revise the survey based on people’s comments, which few researchers do. Autistic people have given such great feedback that will also, I hope, help future research on us to be more respectful and inclusive.

That was a fun survey. I really enjoyed it, and I felt that it was well thought-out.
-OddDuckNash99-

I have received various requests for sharing information about the results, and have an update. We are still collecting responses at least through the month, so anyone who hasn't yet is welcome to take it, but it appears we have some trends about social networking sites. Autistics seem less likely to use social networking sites than NTs, but when we do, we are more likely to use it to share expertise and interests and to meet people like us.