Neurodiversity-friendly survey by autistic self-advocate

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Hello,

I am an autistic - diagnosed with Asperger's 11 years ago at age 13 and still peer and professional-confirmed - self-advocate (including a chapter leader of the Autistic Self Advocacy Network, or ASAN). I am also an autism researcher (PhD student, educational psychology) at UCLA; these identities overlap. I decided to enter the autism spectrum field because of the discrimination and misunderstandings against autistic people; I am trying to respectfully apply critical thinking and advocacy associated with neurodiversity to a mainstream setting, while learning as a student.

I helped to design an online research survey on autism and the Internet that was inspired by the autistic online community such as WrongPlanet. It is examining the relationship between the autism spectrum and Internet use, identity, and visual perception. It received full ethical approval from the review board and contains consents within it. I think it is sensitively written and it is open to feedback. Responses are completely anonymous and it's for any adult or child of at least 7 years in age. We especially need people who are diagnosed on and/or self-identify as on the autism spectrum (autism, Asperger's, PDD-NOS,, of course). Participants can get help in completing it if needed.

Could you take and/or pass information about the survey? Here's the link: http://www.surveymonkey.com/s/NNWDRT9 It might take about 15 minutes.

Thank you,
Steven

Steven Kapp
PhD student, Psychological Studies in Education
UCLA Graduate School of Education & Information Studies

Co-Director, Autistic Self Advocacy Network - UCLA/LA Area

If there are things I don't use and don't want to use the internet for, do I say not applicable or don't like it?

It sounds like you don't like it, but if you've never tried something, for example Twitter, that would be N/A. Hope that helps.

...Then I think I may have skewed your answers, but I did make a note of that in the space provided.

Thanks for the concern, but I wouldn't say that. Perhaps survey questions cannot perfectly capture complex phenomena, and any subjectivity may lead to interesting results, especially with the allowance for comments. What matters much more than the interpretation of a particular question is that a variety of people take and complete the survey.

I got too confused at the autistic section and stopped. I was told by one professional I had AS and I suspected it for a while, but it never got down on my diagnosis papers. So I didn't know how to answer that properly.

I've completed the entire survey.

Hmm, what autistic section do you mean? The question about considering oneself as autistic or as on the autism spectrum does not refer to diagnosis. That is specifically addressed on the next page. From what you say you don't have an official diagnosis so you would leave that question blank, and say in the next question that you were not diagnosed by a professional. The survey definitely is meant to include unofficially diagnosed people who identify as on the spectrum and I apologize for any confusion. I'll try to see to it that the phrasing is clear. I hope that uncertainties about answering particular questions do not dissuade people from finishing the survey; most questions allow for comments and there is room at the end for any comments.

OHHHHH... where it asks you if there is anything missing from this question is for the comments, I thought it was asking if there could be another option than those available.

Quick question about the picture comparisons.

It seemed like there were two types of differences there: there was one glaringly obvious fine-detailed difference (like the color of someone's shoes changing), and then there were the far more subtler ones which mostly seemed to be position relationship differences. Is an autistic person supposed to see one type better than the other?

I don't think I can ethically answer your question directly. The first page (consent) does imply that one goal of the study is to see whether autistic people's (obviously visual in this case) perceptual differences relate to Internet use. Since it suggests that a hypothesis is that the Internet may help autistic people interact as related to ways of viewing the world, it's fair to say that the research team is interested in visual strengths. Clearly the autism literature is loaded with "theories" pathologizing autistic people, and I hope the intentions of this survey to help our community are clear.

Just to be clear, I meant that as part of the research process I can't directly answer all questions but I can try to help anyone understand how to do it. You could ask me personal or political questions etc. about my views and I would happily answer though. I think it's exciting how many people have been willing to participate and how autistic people can given great feedback as partners in adapting the survey. We adults especially receive little attention in terms of supports or protection of rights, but instead also suffer from stigma or injustice, which form part of the reason that we gather in communities like WrongPlanet.

The voices of autistic people are clearly being reflected in the survey; I wish more research would try to access us in positive ways. I am always eager to think about new questions and directions that could help to fight against misguided thinking and practices that victimize or medicalize people as targets of pity and "charity," or as diseases to be prevented, treated, or cured, rather than as disabled or diverse people to be understood, respected, and supported. If you have a difference of opinion on that, that is your right, and your autism-related worldview can be reflected in the survey no matter how it leans.

I have done the survey, I think there is a problem. When considering the questions about the two photos. The problem is that depending on the viewing conditions it may be possible for some of the differences to not be visible. I think that the survey should ask what size screen you use and the distance between you and the screen. This might help to guard against the problem of the picture being too small for the details to be visible.

_________________
Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.

Oh... I just came to think of, are the results going to be public available?
Personally I would like that. Of coruse all the results should be anonymously.