Wikimedia Meta-Wiki

Research:Recommendations for future research on neurodivergent Wikimedians

These recommendations are for researchers who engage with the Wikimedia platform on the topic of neurodiversity, or who interact with neurodivergent Wikimedians.

Motivation / Goals

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  • Presenting Wikimedia editors who are neurodivergent as a demographic
  • Striving to maintain rigorous use of language and methodology when engaging in work related to neurodiversity and neurodivergent people
  • Prioritizing interrogating how ableism can permeate research design and bias results
  • Investigating research design and potential risks to inform future studies
  • Making the research accessible and communicating research in ways useful to population studied

Potential audiences

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  • Neurodivergent Wikimedians
  • Wikimedia researchers
  • Survey designers
  • Online community researchers
  • Researchers designing future studies about neurodivergence
  • Open movement advocates
  • Anyone interested in Wikimedia’s social responsibility to understand the representation of its contributors
  • Anyone interested in participatory research methods

Methodological Challenges and Areas of Consideration

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Terminology matters

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  • Language is evolving, with ongoing debates about best practices for contemporary usage of terminology around neurodivergent populations. As of 2025, the neurodivergent community has not recommended terms for discussion about itself. Some members of the neurodivergent community disapprove of some terms which the research community has applied to them.[1] For instance, the terms "high functioning autism" has been heavily criticized for focusing on deficits and problems to account for human differences.[2] Researchers should engage in an ongoing process of attuning themselves to the present and historical connotations of the terms they employ[3]
  • The 2025 project Research:Investigating Neurodivergent Wikimedian Experiences found no existing ontology, a type of structured vocabulary, for neurodiversity. Future researchers analyzing topics related to neurodiversity should investigate the development of any recent ontologies, as ontology building projects evolve, including the level of community involvement in shaping vocabularies.
  • Although neurodivergence is an umbrella category, many terms associated with it emerge in biomedical contexts. However, diagnoses and access to medicine differ internationally.[4] Researchers should not assume universal access to diagnoses.
  • Disability Studies scholars focus on the voices of those with lived experience and prioritizing self-determination.[5] There is a tension between attempts to be inclusive when using neurodivergence as an umbrella term, and the value of self-determination in terms of groups themselves choosing to update the term neurodivergence. Collaborating and consulting with community groups can help inform researchers of how to represent populations.[6] At the same time, no one person or group can speak on behalf of large populations, even when they may claim to; a diversity of perspectives is needed.

Mitigating potential harms

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  • Research studies involving human subjects must defer to applicable laws around research ethics and institutional ethical review processes. Requirements vary across jurisdictions and institutions.
  • We recommend the Wikimedia Research grants program consider the benefits of requiring the submission of ethical review certificates, and/or establishing a Wikimedia Research human subjects research review process for grants funded by the Wikimedia Foundation
  • Human subjects research related to studying neurodiversity may need to be considered in line with research safeguards around what are designated as “vulnerable research subjects” or related terms. For instance, The US Department of Health and Human Services (HHS) Policy for Protection of Human Subjects requires studies relating to “individuals with impaired decision-making capacity” to be treated in unique ways, see:
  • Ethical review processes for research done outside of universities vary. Researchers in industry or working outside of universities are not exempt from ethical expectations and should identify appropriate ethical review boards for their research. The Wikimedia Foundation should support the Wikimedia community in establishing mechanisms for ethical review for any Wikimedia research involving human subjects.

Wikipedia/Wikimedia research challenges

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  • This is limited precedent for the analysis of the many formats of Wikimedia administrative pages as they relate to user self-expression and expression of identity[7]
  • Neurodivergent people may be concerned about disclosure of information related to identity and health. Concerns about disclosure might impact information gaps and Wikimedia community awareness of the experiences and representation of neurodivergent contributors.
  • More work is needed to identify best practices for opt-out procedures and procedures for omitting texts from research data collections.
  • Although Wikipedia “administrative pages” are openly licensed with the Creative Commons Attribution-ShareAlike 4.0 License, Wikipedians may not be aware that this means that their work and conversations may be used as a source for research. More work is needed to spread awareness about how interactions on Wikipedia may be used for research to increase transparency and community understanding of the role of researchers in the community.

Potentially biasing factors

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Marginalization and biasing may appear in myriad ways at any point in the research process.

Areas of interest:

  • Ableism
  • Mentalism / sanism
  • Stigmas and stigmatization
  • Masking or camouflaging
    • There is also work focusing specifically on camouflaging and masking behaviors in online spaces.
  • Gender and representation
    • Gender differences in presentation of neurodivergence (behaviors)
    • Gender differences in diagnostics and biomedical approaches
    • Gender differences in stigmatization and stereotypes

Presence of the "neurotypical gaze"

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  • Some work has explored the idea of the ‘neurotypical gaze’
    • “The presence of non-autistic researchers may transform the autistic space, as the autistic space is fragile to the neurotypical gaze.”[8]

Survey considerations

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  • Questionnaires require participants to spend time, often without compensation to provide information to systems that may not have clear outputs. Surveys can be extractive, especially if it is not clear what the respondent is getting back. For instance, people with disabilities are burdened with excessive discuss the endless questionnaires that researchers and administrators disabled people are burdened with excessive questionnaires that researchers and administrators ask them to complete.[9][10]
  • Survey questions require great care. Terminology used in survey questions may bias the results.
  • Surveys may face self-selection biases.
  • Survey questions to the international Wikipedia population need to be translated across multiple languages and global cultures, which have variation in the ways that terms associated with neurodiversity and neurodivergence, including biomedical terminology, are understood and defined. Nuances may be lost in the translation of surveys.

Survey questions relating to disability

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  • It is well documented that not everyone who identifies as having a disability has an official diagnosis, and that access to health care has an effect on who is able to seek an official diagnosis.[11]
  • Disability status relates to personal medical information, and pertains to laws about privacy and collecting personal information. Additional data about Wikimedia contributors with disabilities, with specific questions related to cognitive disabilities would provide greater understanding of factors shaping participation and collaboration.

Participatory research and its challenges

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  • To what extent should neurodivergent Wikimedians have a say in shaping research and representing themselves? Who gets to speak on behalf of groups?
  • Participatory research can deepen the quality and potential impacts of research, however definitions of participatory research vary.
  • Researchers must be careful to ask for feedback about Wikipedian’s comfortability with privacy and openness, and to avoid violating privacy when identifying Wikimedians to co-construct knowledge related to identity and personal health information

References

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  1. ↑ Dwyer, Patrick (2022). "The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers?". Human Development 66 (2): 73–92. doi:10.1159/000523723. 
  2. ↑ Dinishak, Janette (2016). "The Deficit View and Its Critics". Disability Studies Quarterly 36 (4). doi:10.18061/dsq.v36i4.5236. 
  3. ↑ Chellappa, Sarah L. (2023). "Language matters for neuroinclusivity". Nature Mental Health 1 (146). doi:10.1038/s44220-023-00028-w. 
  4. ↑ Doyle, Nancy (2020). "Neurodiversity at work: a biopsychosocial model and the impact on working adults". British Medical Bulletin 135 (1): 108–125. doi:10.1093/bmb/ldaa021. 
  5. ↑ Wehmeyer, Michael; Shogren, Karrie (2017). "Applications of the Self-Determination Construct to Disability". In Wehmeyer, Michael; Shogren, Karrie; Little, Todd; et al. Development of Self-Determination Through the Life-Course. Springer, Dordrecht. doi:10.1007/978-94-024-1042-6_9. 
  6. ↑ Ne'eman, Ari (2023). "Tourette syndrome and Tourettic persons: Internationalizing neurodiversity across diagnostic borders". Developmental Medicine and Child Neurology 65: 1416–7. doi:10.1111/dmcn.15746. 
  7. ↑ Gredel, Eva (2021). "Multimodal self- and other-positioning on Wikipedia user pages". Diskurse - digital: Theorien, Methoden, Fallstudien 3 (1). doi:10.25521/diskurse-digital.2021.160. 
  8. ↑ Bertilsdotter Rosqvist, Hanna; Örulv, Linda; Hasselblad, Serena; Hansson, Dennis; Nilsson, Kirke; Seng, Hajo (2020). Neurodiversity Studies: A New Critical Paradigm. Taylor & Francis. pp. Chapter 10: Designing an autistic space for research. 
  9. ↑ Hall, Emily (2024). "Who Counts? Care, Disability, and the Questionnaire in Jesse Ball’s Census". Journal of Medical Humanities. doi:10.1007/s10912-024-09879-5. 
  10. ↑ Mitchell, David; Snyder, Sharon (2015). The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. University of Michigan Press. 
  11. ↑ "Guide to Demographic Survey Questions" (PDF). National Center for Women & Information Technology. Retrieved 25 March 2025. 

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