Disrupting Oppression: Critical Systems Thinking and Ethics in Autism Research

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref PubMed OpenCitations
Learn more about the sources used

Raymaker, D. M. (2024). Disrupting Oppression: Critical Systems Thinking and Ethics in Autism Research. In ˜The œInternational Library of Bioethics (pp. 137-149). Springer International Publishing. https://doi.org/10.1007/978-3-031-61565-8_11 · ISBN : 9783031615641 · Place of publication : Cham

Publication date: 1 Jan 2024 Added to AutiHub: 6 Jul 2026 Type: Book chapter Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)
  1. Dora M. Raymaker *

Abstract

In recent decades, autistic and other disabled people have fought for–and won–gains in research inclusion, both as participants and as researchers, and fueled shifts toward more ethical research with disability populations. Despite this, by their nature, large, complex systems like the social, cultural, and political systems driving bioethics shift very slowly. This chapter (1) presents four ethical tensions in the past and present landscape of autism research (models of disability, definitions of normality, politics of inclusion, priorities in research), (2) applies a critical systems thinking lens to understand the knowledge-power dynamics that generate these tensions, and (3) uses those dynamics in relationship to Meadow’s leverage framework to consider points of impact for future change. Systems thinking teaches that, given the vast complexity of the world, we can neither control nor predict the future, but we can intentionally work toward the kinds of inclusive, empowered futures we would like to realize.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 3 Oct 2026 01:00.

Cited references
46
With a DOI
28
Without a DOI, from raw bibliography text
17
12 / 46 (26.1%) cited references include at least one author identified as autistic.
References with data to complete
14 / 46 (30.4%)
References with detected author names
34 / 46 (73.9%)
Without detected author names
12
Without a structured title
13
Without a stable identifier
16
References with raw author names still to review
11
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
121
From DOI or external metadata
118
From validated raw bibliography text
3
Raw names already validated
3
Raw names still to review
11
86 / 121 (71.1%) names are linked to an author already present in AutiHub. 35 / 121 (28.9%) names are not yet linked.
Names linked to a person identified as autistic
43 / 121 (35.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 43 / 86 (50.0%). Distinct people identified as autistic: 14 / 75 (18.7%).
  1. Barbara A. Israel , David Satcher (2013). Methods For Community - Based Participatory Research For Health .
    Type: Book OpenAlex: https://openalex.org/W1498878353
    OpenAlex
  2. (n.d.). AASPIRE (Academic Autism Spectrum Partnership in Research and Education). 2023. AASPIRE inclusive research toolkit. https://aaspire.org/inclusion-toolkit . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  3. Kurt Lewin (1946). Action Research and Minority Problems . Journal of Social Issues, 2(4), 34-46. Wiley.
    Type: Article DOI: 10.1111/j.1540-4560.1946.tb02295.x OpenAlex: https://openalex.org/W2000049702
    Crossref OpenAlex OpenCitations
  4. (1980). The systems approach and its enemies . Business Horizons, 23(3), 85-87. Elsevier BV.
    Type: Article DOI: 10.1016/0007-6813(80)90037-3 OpenAlex: https://openalex.org/W1506732837
    OpenAlex
  5. (n.d.). AIR-P (Autism Inclusive Research Network on Physical Health). 2023. https://airpnetwork.ucla.edu . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  6. Brandon S. Aylward , Diana E. Gal-Szabo , Sharief Taraman (2021). Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder . Journal of Developmental & Behavioral Pediatrics, 42(8), 682-689. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000996 OpenAlex: https://openalex.org/W3199889683
    Crossref OpenAlex OpenCitations
  7. Michel Foucault , Colin Gordon (1980). Power/Knowledge: Selected Interviews and Other Writings 1972-1977 .
    Type: Book OpenAlex: https://openalex.org/W1597750586
    Crossref OpenAlex
  8. (n.d.). Anonymous. 2010 Autism research program: Peer review panel summary statement, US Department of Defense.
    Type: Other
    Crossref
  9. M. C. Jackson (1991). The origins and nature of critical systems thinking . Systems Practice, 4(2), 131-149. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf01068246 OpenAlex: https://openalex.org/W1982057530
    Crossref OpenAlex OpenCitations
  12. David N. Bengston (2016). Ten principles for thinking about the future: a primer for environmental professionals . U.S. Department of Agriculture, Forest Service, Northern Research Station.
    Type: Report DOI: 10.2737/nrs-gtr-175 OpenAlex: https://openalex.org/W2776232439
    Crossref OpenAlex OpenCitations
  13. Raymond Caldwell (2012). Leadership and Learning: A Critical Reexamination of Senge’s Learning Organization . Systemic Practice and Action Research, 25(1), 39-55. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11213-011-9201-0 OpenAlex: https://openalex.org/W2001617671
    Crossref OpenAlex OpenCitations
  14. Patricia Berne , Aurora Levins Morales , David Langstaff , Sins Invalid (2018). Ten Principles of Disability Justice . WSQ: Women's Studies Quarterly, 46(1-2), 227-230. Project MUSE.
    Type: Article DOI: 10.1353/wsq.2018.0003 OpenAlex: https://openalex.org/W2800367486
    Crossref OpenAlex OpenCitations
  16. Louise Bradley , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2021). Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health . Autism in Adulthood, 3(4), 320-329. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0071 OpenAlex: https://openalex.org/W3170765972
    Crossref OpenAlex OpenCitations
  18. Sumi Cho , Kimberlé Williams Crenshaw , Leslie McCall (2013). Toward a Field of Intersectionality Studies: Theory, Applications, and Praxis . Signs: Journal of Women in Culture and Society, 38(4), 785-810. University of Chicago Press.
    Type: Article DOI: 10.1086/669608 OpenAlex: https://openalex.org/W2002213000
    Crossref OpenAlex OpenCitations
  19. (n.d.). Brown, Lydia X. Y. 2011. What is self-advocacy? Autistic Hoya. https://www.autistichoya.com/2011/07/what-is-self-advocacy.html . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  20. Nick Walker * , Dora M. Raymaker * (2021). Toward a Neuroqueer Future: An Interview with Nick Walker . Autism in Adulthood, 3(1), 5-10. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.29014.njw OpenAlex: https://openalex.org/W3106097568
    Crossref OpenAlex OpenCitations
  21. F. P. Wheeler , P. Checkland (2000). Systems Thinking, Systems Practice: Includes a 30-Year Retrospective . The Journal of the Operational Research Society, 51(5), 647. JSTOR.
    Type: Article DOI: 10.2307/254200 OpenAlex: https://openalex.org/W2009310991
    OpenAlex
  23. Horst W. J. Rittel , Melvin M. Webber (1973). Dilemmas in a general theory of planning . Policy Sciences, 4(2), 155-169. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf01405730 OpenAlex: https://openalex.org/W2010793828
    Crossref OpenAlex OpenCitations
  24. Sarah Cassidy , K. Gould , Ellen Townsend , Mirabel Pelton , Ashley Robertson , Jacqui Rodgers (2020). Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample . Journal of Autism and Developmental Disorders, 50(10), 3638-3648. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04323-3 OpenAlex: https://openalex.org/W2993272702
    Crossref OpenAlex OpenCitations
  25. Robin Newhouse , Debra J. Barksdale , Julie Ann Miller (2015). The Patient-Centered Outcomes Research Institute . Nursing Research, 64(1), 72-77. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/nnr.0000000000000070 OpenAlex: https://openalex.org/W2024452700
    OpenAlex
  26. P Checkland (1999). Systems thinking, systems practice: includes a 30-year retrospective . Systems thinking, systems practice: includes a 30-year retrospective.
    Type: Other
    Crossref
  27. George G. Lendaris (1986). On Systemness and the Problem Solver: Tutorial Comments . IEEE Transactions on Systems, Man, and Cybernetics, 16(4), 603-610. Institute of Electrical and Electronics Engineers (IEEE).
    Type: Article DOI: 10.1109/tsmc.1986.289266 OpenAlex: https://openalex.org/W2086685572
    Crossref OpenAlex OpenCitations
  28. Katherine McDonald , Dora M. Raymaker * (2013). Paradigm Shifts in Disability and Health: Toward More Ethical Public Health Research . American Journal of Public Health, 103(12), 2165-2173. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2013.301286 OpenAlex: https://openalex.org/W2134344619
    Crossref OpenAlex OpenCitations
  29. CW Churchman (1979). The systems approach and its enemies . The systems approach and its enemies.
    Type: Other
    Crossref
  30. Peter M. Senge (1991). The fifth discipline, the art and practice of the learning organization . Performance + Instruction, 30(5), 37-37. Wiley.
    Type: Article DOI: 10.1002/pfi.4170300510 OpenAlex: https://openalex.org/W2101157755
    Crossref OpenAlex
  31. Allison Shefcyk (2015). Count us in: Addressing gender disparities in autism research . Autism, 19(2), 131-132. SAGE Publications.
    Type: Article DOI: 10.1177/1362361314566585 OpenAlex: https://openalex.org/W2111029785
    Crossref OpenAlex OpenCitations
  32. (n.d.). IACC (Interagency Autism Coordinating Committee). 2017. Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research 2016–2017 Update. U. S. Department of Health and Human Services Interagency Autism Coordinating Committee website. http://iacc.hhs.gov/strategic-plan/2017/index.shtml . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  33. BA Israel (2005). Methods in community-based participatory research for health . Methods in community-based participatory research for health.
    Type: Other
    Crossref
  35. Ivo Van Hilvoorde , Laurens Landeweerd (2010). Enhancing disabilities: transhumanism under the veil of inclusion? Disability and Rehabilitation, 32(26), 2222-2227. Informa UK Limited.
    Type: Article DOI: 10.3109/09638288.2010.491578 OpenAlex: https://openalex.org/W2125962352
    Crossref OpenAlex OpenCitations
  37. (n.d.). Meadows, Donella. 1999. Leverage points: Places to intervene in a system. Hartland.
    Type: Other
    Crossref
  38. (n.d.). Meadows, Donella. 2002. Dancing with systems. The Systems Thinker 13 (2). https://donellameadows.org/archives/dancing-with-systems/ . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  40. Dora M. Raymaker * (2020). Shifting the System: AASPIRE and the Loom of Science and Activism . In Autistic community and the neurodiversity movement: stories from the frontline (pp. 133-145). Springer Singapore.
    Type: Book chapter DOI: 10.1007/978-981-13-8437-0_10 OpenAlex: https://openalex.org/W2984890013
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  41. (n.d.). Moya, Maria J. 2022. Autism Acceptance Month is underway. Here’s why the name is important. USA Today, April 2. https://www.usatoday.com/story/news/health/2022/04/02/autism-acceptance-month-name-change/7243001001/ . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  42. (n.d.). Patient-Centered Outcomes Research Institute. 2013. Engagement resources. https://www.pcori.org/engagement/engagement-resources . Accessed 10 May 2023.
    Type: Other
    Crossref
  43. (n.d.). Praslova, Ludmila N. 2022. Your “Autism Awareness Day” might be excluding autistic people. Harvard Business Review. https://hbr.org/2022/04/your-autism-awareness-day-might-be-excluding-autistic-people . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  44. Dora M. Raymaker * , Christina Nicolaidis (n.d.). Raymaker, Dora M., and Christina Nicolaidis. 2013. Participatory research with autistic communities: Shifting the system. In Worlds of Autism: Across the Spectrum of Neurological Difference, eds. Joyce Davidson and Michael Orsini. Minneapolis: University of Minnesota Press.
    Type: Other
    Crossref
  45. (n.d.). Richards, Aisha. 2023. Evolution of disability models. https://shadesofnoir.org.uk/content/evolution-of-disability-models/ . Accessed 9 Apr 2024.
    Type: Other
    Crossref
  46. Jim Sinclair * (n.d.). Sinclair, Jim. 2005. History of ANI. http://www.autreat.com/History_of_ANI.html . Accessed 9 Apr 2024.
    Type: Other
    Crossref