Transitioning from autism self-advocacy to advocating for the neurodiverse community

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 BibTeX OpenCitations
Learn more about the sources used

Gouws, E. (2025). Transitioning from autism self-advocacy to advocating for the neurodiverse community. African Journal of Disability, 14(0), Article a1560. https://doi.org/10.4102/ajod.v14i0.1560

Publication date: 14 Apr 2025 Added to AutiHub: 7 Oct 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)
  1. Emile Gouws *

Abstract

Background: In this article, I reflect on my continuing journey of becoming an autism self-advocate and how this has extended to advocate for the broader neurodiverse community. Objectives: I aimed to provide an academic analysis of the value of autism self-advocacy with special reference to building resilience to confront discrimination and advocating for equal opportunities, support and inclusion. Method: My autoethnographic reflections are fused with those of my co-constructors to present critical incidents that defined my journey of becoming an internationally recognised advocate for autism. Results: Education has been the transformative force that has changed my life, granting me opportunities to advocate for my broader neurodiverse community on various local and international platforms and guiding me to create an ecosystem of family and professionals who continuously support me and others who are neurodiverse. My advocacy, which aims at raising autism awareness, has changed the perceptions of the community of practice as well as others with an interest in supporting and including individuals living with autism in a significant way. Conclusion: A network of care and support is required to sustain autism self-advocacy and to build on it to advocate for the broader neurodiverse community. Contribution: This demonstrates the need for educating stakeholders to raise their expectations for autistic children and adults and for teachers and psychologists to continue supporting families and children with Autism Spectrum Disorder (ASD) to realise their full human potential.

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: 17 Oct 2026 01:28.

Cited references
46
With a DOI
33
Without a DOI, from raw bibliography text
11
8 / 46 (17.4%) cited references include at least one author identified as autistic.
References with data to complete
13 / 46 (28.3%)
References with detected author names
33 / 46 (71.7%)
Without detected author names
13
Without a structured title
11
Without a stable identifier
11
References with raw author names still to review
12
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
77
From DOI or external metadata
77
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
17
25 / 77 (32.5%) names are linked to an author already present in AutiHub. 52 / 77 (67.5%) names are not yet linked.
Names linked to a person identified as autistic
10 / 77 (13.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 10 / 25 (40.0%). Distinct people identified as autistic: 10 / 76 (13.2%).
  1. (2012). Learning Science in the Schools . Routledge.
    Type: Book DOI: 10.4324/9780203053287 OpenAlex: https://openalex.org/W583760416
    OpenAlex
  2. Tony E. Adams , Carolyn Ellis , Stacy Holman Jones (2017). Autoethnography . The International Encyclopedia of Communication Research Methods, 1-11. Wiley.
    Type: Other DOI: 10.1002/9781118901731.iecrm0011 OpenAlex: https://openalex.org/W4249236756
    Crossref OpenAlex OpenCitations
  3. Scott L. J. Jackson , Logan Hart , Fred R. Volkmar (2018). Preface: Special Issue—College Experiences for Students with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 48(3), 639-642. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3463-7 OpenAlex: https://openalex.org/W2787209080
    Crossref OpenAlex OpenCitations
  4. Carolyn Ellis (2004). The Ethnographic I: A Methodological Novel About Autoethnography . Digital Commons - University of South Florida (University of South Florida).
    Type: Article OpenAlex: https://openalex.org/W1484158722
    OpenAlex
  5. (n.d.). Altman, A., 2011, ‘Discrimination’, in E. N. Zalta, (ed.), The stanford encyclopedia of philosophy, Spring 2011 edn., Metaphysics Research Lab, Stanford University, Stanford, CA, viewed 23 March 2025, https://plato.stanford.edu/entries/discrimination/ .
    Type: Other
    Crossref
  7. Jarkko Saarinen (2004). Tourism and Touristic Representations of Nature . In A Companion to Tourism (pp. 438-449). Wiley.
    Type: Book chapter DOI: 10.1002/9780470752272.ch35 OpenAlex: https://openalex.org/W1595787273
    Crossref OpenAlex OpenCitations
  8. (n.d.). Atlassian, n.d., Jira Service Management, viewed 23 March 2025, https://www.atlassian.com/software/jira/service-management .
    Type: Other
    Crossref
  9. Patrice A. Keats (2010). Soldiers Working Internationally: Impacts of Masculinity, Military Culture, and Operational Stress on Cross-cultural Adaptation . International Journal for the Advancement of Counselling, 32(4), 290-303. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10447-010-9107-z OpenAlex: https://openalex.org/W2014058707
    Crossref OpenAlex OpenCitations
  10. Paul J. Silvia , Ann G. Phillips (2013). Self-awareness Without Awareness? Implicit Self-focused Attention and Behavioral Self-regulation . Self and Identity, 12(2), 114-127. Informa UK Limited.
    Type: Article DOI: 10.1080/15298868.2011.639550 OpenAlex: https://openalex.org/W1984484081
    Crossref OpenAlex OpenCitations
  11. Abir K. Bekhet , Norah L. Johnson , Jaclene A. Zauszniewski (2012). Resilience in Family Members of Persons with Autism Spectrum Disorder: A Review of the Literature . Issues in Mental Health Nursing, 33(10), 650-656. Informa UK Limited.
    Type: Article DOI: 10.3109/01612840.2012.671441 OpenAlex: https://openalex.org/W2102244562
    Crossref OpenAlex OpenCitations
  13. William M.K. Trochim (1989). An introduction to concept mapping for planning and evaluation . Evaluation and Program Planning, 12(1), 1-16. Elsevier BV.
    Type: Article DOI: 10.1016/0149-7189(89)90016-5 OpenAlex: https://openalex.org/W1984519402
    Crossref OpenAlex OpenCitations
  14. Michelle O’Riordan , Filippo Passetti (2006). Discrimination in Autism Within Different Sensory Modalities . Journal of Autism and Developmental Disorders, 36(5), 665-675. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-006-0106-1 OpenAlex: https://openalex.org/W1988370154
    Crossref OpenAlex OpenCitations
  15. David Butz , Kathryn Besio (2009). Autoethnography . Geography Compass, 3(5), 1660-1674. Wiley.
    Type: Article DOI: 10.1111/j.1749-8198.2009.00279.x OpenAlex: https://openalex.org/W4206824173
    Crossref OpenAlex OpenCitations
  17. Robert Chapman * , Walter Veit (2020). Representing the Autism Spectrum . The American Journal of Bioethics, 20(4), 46-48. Informa UK Limited.
    Type: Article DOI: 10.1080/15265161.2020.1730495 OpenAlex: https://openalex.org/W3013050796
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  18. Gábor Petri , Julie Beadle-Brown , Jill Bradshaw (2021). ‘ Even a Self-Advocate Needs to Buy Milk ’ – Economic Barriers to Self-Advocacy in the Autism and Intellectual Disability Movement . Scandinavian Journal of Disability Research, 23(1), 180. Stockholm University Press.
    Type: Article DOI: 10.16993/sjdr.738 OpenAlex: https://openalex.org/W3181634676
    Crossref OpenAlex OpenCitations
  19. Elizabeth C. Pinel , Jennifer K. Bosson (2013). Turning Our Attention to Stigma: An Objective Self-Awareness Analysis of Stigma and Its Consequences . Basic and Applied Social Psychology, 35(1), 55-63. Informa UK Limited.
    Type: Article DOI: 10.1080/01973533.2012.746593 OpenAlex: https://openalex.org/W2013399378
    Crossref OpenAlex OpenCitations
  21. (n.d.). Clayton, L. H., 2006, ‘Concept mapping: An effective, active teaching-learning method’, Nursing Education Perspectives 27(4), 197–203.
    Type: Other
    Crossref
  22. Paul J. Silvia , T. Shelley Duval (2001). Objective Self-Awareness Theory: Recent Progress and Enduring Problems . Personality and Social Psychology Review, 5(3), 230-241. SAGE Publications.
    Type: Article DOI: 10.1207/s15327957pspr0503_4 OpenAlex: https://openalex.org/W2014099757
    Crossref OpenAlex OpenCitations
  23. Barb Cook * , Yenn Purkis * (2022). The Autism and Neurodiversity Self-Advocacy Handbook . Jessica Kingsley Publishers.
    Type: Book DOI: 10.5040/9781805015932 OpenAlex: https://openalex.org/W4403641238
    Crossref OpenAlex OpenCitations
  24. Veronica Hermann , Fredrik Söderqvist , Ann-Christin Karlsson , Anna Sarkadi , Natalie Durbeej (2024). Mental health status according to the dual-factor model in Swedish adolescents: A cross sectional study highlighting associations with stress, resilience, social status and gender . PLOS ONE, 19(3), e0299225. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0299225 OpenAlex: https://openalex.org/W4392361718
    Crossref OpenAlex OpenCitations
  25. Michael J. Ward , Roger N. Meyer * (1999). Self-Determination for People with Developmental Disabilities and Autism . Focus on Autism and Other Developmental Disabilities, 14(3), 133-139. SAGE Publications.
    Type: Article DOI: 10.1177/108835769901400302 OpenAlex: https://openalex.org/W2019721156
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  26. Shelley Duval , Robert A. Wicklund (1973). Effects of objective self-awareness on attribution of causality . Journal of Experimental Social Psychology, 9(1), 17-31. Elsevier BV.
    Type: Article DOI: 10.1016/0022-1031(73)90059-0 OpenAlex: https://openalex.org/W2055183229
    Crossref OpenAlex OpenCitations
  27. (n.d.). Ellis, C., 2004, The ethnographic I: A methodological novel about autoethnography, Rowman and Littlefield Publishers, New York, NY.
    Type: Other
    Crossref
  28. William M. Trochim , Daniel McLinden (2017). Introduction to a special issue on concept mapping . Evaluation and Program Planning, 60, 166-175. Elsevier BV.
    Type: Article DOI: 10.1016/j.evalprogplan.2016.10.006 OpenAlex: https://openalex.org/W2531595221
    Crossref OpenAlex OpenCitations
  29. Richard Melling (2014). Worlds of autism: across the spectrum of neurological difference . Educational Psychology in Practice, 30(2), 208-209. Informa UK Limited.
    Type: Article DOI: 10.1080/02667363.2014.900914 OpenAlex: https://openalex.org/W2090217617
    OpenAlex
  30. Nenad Glumbić , Mirjana Đorđević , Branislav Brojčin (2022). Digital Inclusion of Individuals with Autism Spectrum Disorder . Springer International Publishing.
    Type: Book DOI: 10.1007/978-3-031-12037-4 OpenAlex: https://openalex.org/W4294266027
    Crossref OpenAlex OpenCitations
  31. (n.d.). Gouws, E., 2022, ‘Experiencing university life as an autistic student: A critical autoethnography’, Master’s dissertation, Department of Education, University of Pretoria.
    Type: Other
    Crossref
  32. Laura H Clayton (2006). Concept mapping: an effective, active teaching-learning method. PubMed, 27(4), 197-203.
    Type: Article OpenAlex: https://openalex.org/W2176043054
    OpenAlex
  33. (n.d.). Härkönen, U., 2001, ‘The Bronfenbrenner ecological systems theory of human development’, in International conference PERSON. COLOR. NATURE. MUSIC, Daugavpils University, Saule, Latvia, October 17–21, 2007, pp. 1–18.
    Type: Other
    Crossref
  34. Mitzi Waltz , Karin van den Bosch , Hannah Ebben , Lineke van Hal , Alice Schippers (2015). Autism self-advocacy in the Netherlands: past, present and future . Disability & Society, 30(8), 1174-1191. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2015.1090954 OpenAlex: https://openalex.org/W2204082832
    Crossref OpenAlex OpenCitations
  35. (n.d.). Hughes, J., 2016, Increasing neurodiversity in disability and social justice advocacy groups, Autistic Self Advocacy Network, viewed 15 August 2024, https://autisticadvocacy.org/wp-content/uploads/2016/06/whitepaper-Increasing-Neurodiversity-in-Disability-and-Social-Justice-Advocacy-Groups.pdf .
    Type: Other
    Crossref
  36. Joyce Davidson , Michael Orsini (2013). Cerebralizing Autism within the Neurodiversity Movement . In Worlds of Autism (pp. 73-96). University of Minnesota Press.
    Type: Book chapter DOI: 10.5749/minnesota/9780816688883.003.0004 OpenAlex: https://openalex.org/W2492519712
    Crossref OpenAlex OpenCitations
  37. (n.d.). Iivonen, S., Niemistö, D., Sääkslahti, A. & Kettukangas, T., 2021, ‘What makes John move? Outdoor play physical environmental factors changing a child’s activity from sedentary to physically active: Longitudinal mixed-method case study’, Journal of Early Childhood Education Research 10(3), 21–53.
    Type: Other
    Crossref
  38. (n.d.). Kamperman, S., 2020, ‘Academic ableism and students with intellectual/development disabilities: Rethinking self-advocacy as an anti-ableist practice’, Critical Education 11(17), 21–38. https://doi.org/10 . 14288/ce.v11i17. 18650
    Type: Other
    Crossref
  39. Adam Rosenblatt (2018). Autism, Advocacy Organizations, and Past Injustice . Disability Studies Quarterly, 38(4). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v38i4.6222 OpenAlex: https://openalex.org/W2905861729
    Crossref OpenAlex OpenCitations
  40. Matthew D. Taylor , Iain M. Suthers (2021). The Socio-ecological System of Urban Fisheries in Estuaries . Estuaries and Coasts, 44(7), 1744-1751. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s12237-021-00916-3 OpenAlex: https://openalex.org/W3135847165
    Crossref OpenAlex OpenCitations
  41. (2018). Teachers’ Strategies of Including Learners with Autism Spectrum Disorders in Mainstream Classrooms in Swaziland . International Journal of Humanities, Social Sciences and Education, 5(12). ARC Publications Pvt Ltd..
    Type: Article DOI: 10.20431/2349-0381.0512009 OpenAlex: https://openalex.org/W2943715390
    Crossref OpenAlex OpenCitations
  42. Victoria Newell , Lucy Phillips , Chris Jones , Ellen Townsend , Caroline Richards , Sarah Cassidy (2023). A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability . Molecular Autism, 14(1), 12. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-023-00544-7 OpenAlex: https://openalex.org/W4324354182
    Crossref OpenAlex OpenCitations
  43. (n.d.). Novak, J. D., 2012, ‘Concept mapping: A strategy for organizing knowledge’, in D. Joseph (ed.), Learning science in the schools, p. 2, Routledge, New York, NY.
    Type: Other
    Crossref
  44. Matthes, Jörg 1977- , Davis, Christine S. , Potter, Robert F. , Abrams, Sandra Schamroth (2017). The International Encyclopedia of Communication Research Methods . Wiley eBooks. Wiley.
    Type: Other DOI: 10.1002/9781118901731 OpenAlex: https://openalex.org/W3133648544
    OpenAlex
  46. (n.d.). Petri, G., 2018, ‘“Still Out in the Cold” – Self-advocacy and the Disabled People’s Movement’, PhD dissertation, University of Kent, Tizard Centre, Kent.
    Type: Other
    Crossref