Research:Investigating Neurodivergent Wikimedian Experiences
This page documents a research project in progress.
Information may be incomplete and change as the project progresses.
Please contact the project lead before formally citing or reusing results from this page.
This project is focused on exploring discussions about being neurodivergent and participating in Wikimedia projects. There are no existing studies on neurodivergent Wikimedians, although there are numerous discussions about the representation of this potentially vast population in public forums.
Our research question is: what topics are discussed in existing public conversations about being neurodivergent and participating in Wikimedia projects? We are conducting a content analysis of existing public discussions about neurodivergent Wikimedians to investigate present discourse. This content analysis will help define a research area. To enrich this work we will explore important methodological and ethical considerations for the design of future studies on neurodivergent Wikimedians, given that studying demographic groups requires careful planning and risk considerations.
Anyone interested in understanding the makeup of the Wikimedia community and supporting contributors, including organizers and technical support might be interested in this work. The potential impact of this work is to increase understanding of how to support Wikimedian wellbeing, including through understanding the challenges faced by neurodivergent Wikimedians. This work may also contribute to our understanding of neurodivergent peopleʼs experiences in work and volunteering contexts. In addition, this work may contribute to our understanding of neurodiversity and online culture, and research methods of studying the demographics of international, networked communities.
Methods
[edit]A content analysis of existing discussions about participating in Wikimedia and being neurodivergent is being conducted. Content analysis is a qualitative method to study discourse involving the creation of a corpus, followed by qualitative coding.[1] A log of search terms to collect data will be reported. The corpus will be created by querying pages across English Wikimedia platforms, including essays, talk pages, user pages, and policies. Due to many forms of interaction on Wikimedia platforms, threaded discussions, user boxes and categories are all content formats that may be included in the corpus. Contextual data on data items will also be collected, such as the nature of surrounding discussions and media. This data will be important to understand Wikimedians on their own terms in forums where community issues are discussed.
The authors are using grounded theory for the analysis of the corpus, which involves creating qualitative codes based on keyword usage, subjects discussed, framings, and other emergent properties in the corpus, and labeling data items with these codes.[2] Then, researchers synthesize underlying patterns. We are interpreting the results with care towards intersectional forms of marginalization and biasing that may appear in myriad ways at any point in the research process. Given the subject area, we will look out for comments that relate to concerns about disclosure, non-disclosure and masking[3] and how these might impact Wikimedia community awareness of the experiences and representation of neurodivergent contributors.
The novelty of this research area and the complexities of studying demographic groups, requires time and care spent investigating methods, potential bias and risks, and ways to involve the community in representing themselves. We will create actionable recommendations for future research design that might be useful for researchers and movement advocates designing future studies about neurodivergence in online communities.
Timeline
[edit]- June-July, 2024 - Data Collection
- August-December, 2024 - Analysis, write research publication
- January-February, 2025 - Research publication finalizing for submission
- Spring 2025 - Aim for publication, contingent on peer review feedback and journal review timeline(s)
Expected output
[edit]- An open-access research publication.
- A research report published on a Wikimedia page for a general audience.
- A public report with recommendations for future researchers.
Policy, Ethics and Human Subjects Research
[edit]This study does not include the participation of human research subjects. Risks include creating unwanted or negative public attention on the population studied. We plan to dialogue with the Wikimedia community and other researchers at Wikimania and other forums as this project develops, to expand our awareness of potential risks. To protect the privacy of the authors of the public textual data analyzed, we will not use direct quotations or usernames in related publications, and will paraphrase quotes if/when necessary. Any public data set created for this project would only include textual data sources designed with the public in mind, such as Wikipedia essays, rather than Talk page messages or other internal, community-oriented discussions. Authors will exclude items not clearly intended for public audiences.
Results / presentations
[edit]The study is in progress. Links to presentations, blog posts, or other ways in which the work is disseminated will be updated on an ongoing basis.
- 2024 WikiWorkshop, 20 June, 2024, Extended Abstract (virtual workshop)
- Howard, Dorothy (June 25, 2024). "Interaction & Collaboration- A Content Analysis About Neurodivergent Wikimedian Experiences". youtube.com. Wikimedia Foundation.
- Wikimania 2024, 7-10 August, 2024, Accepted poster proposal, Poster session details, 9 August from 17:45 - 19:00 local time
- Meta:Neuro-inclusive event strategies - Meta-Wiki page started, anyone is invited to contribute
- Dorothy Howard will be presenting this work on a virtual panel, "Considering Neurodiversity," for the 4th Annual Symposium for Disability and Accessibility at Yale, April 11, 2025
Additional Resources
[edit]- Grant proposal documents: Grants:Programs/Wikimedia Research Fund/Investigating Neurodivergent Wikimedian Experiences
Contact
[edit]Contact Co-PI Dorothy Howard with any questions about the study: dorohoward@gmail.com
References
[edit]- ↑ Krippendorff, Klaus (2018). Content Analysis: An Introduction to Its Methodology (4 ed.). Sage Publications.
- ↑ Clarke, Adele E. (2005). Situational Analysis: Grounded Theory After the Postmodern Turn. Sage Publications.
- ↑ Davidson, Joyce; Henderson (2010-03-01). "‘Coming out’ on the spectrum: autism, identity and disclosure". Social & Cultural Geography.