Added on 25/01/2025
Journal article of the type Perspective ( ; english)
*The author has publicly identified as autistic. [Learn more about this mention]
- 17% of authors cited in the bibliography of this resource have publicly identified as autistic (25 out of 150 authors).
- 33% of references cited in this resource contain at least one author who has publicly identified as autistic (17 out of 52 references).
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In this article I explain the value of autistic perspectives in research and argue that support for autistic scholars, community leaders and professionals are required as an inclusive research consideration. I propose consolidation, innovation, and evaluation of inclusive research principles, with consideration given to epistemic agency, autistic participation, and actionable research outcomes. I then present “Eight Principles of Neuro-Inclusion,” a reflexive tool that I have designed as a way of encouraging new developments of inclusive research practices. Through flexible application of this approach, it is hoped that innovative new inclusive methods will materialize, in pursuit of epistemic justice, and in support of actionable research outcomes that benefit our autism community.
For your information:
(1) References in blue are resources listed on our site.
(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.
(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.
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J. Aldridge (2012). "Working with vulnerable groups in social research: Dilemmas by default and design." Qual. Res., 14, doi:10.1177/1468794112455041
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J. Aldridge (2016). "Participatory Research: Working with Vulnerable Groups in Research and Practice," 1st Edn. Bristol: Policy Press.
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American Psychiatric Association [APA] (2013). "Diagnostic and Statistical Manual of Mental Disorders," 5th Edn. Washington, DC: American Psychiatric Association.
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American Psychiatric Association [APA] (2022). "Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR)." Washington, DC: American Psychiatric Association.
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E. P. Apfelbaum, K. W. Phillips, J. A. Richeson (2014). "Rethinking the baseline in diversity research." Perspect. Psychol. Sci., 9, doi:10.1177/1745691614527466
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C. Barnes (2004). "Emancipatory disability research: project or process?" J. Res. Spec. Educ. Needs, 2:1, doi:10.1111/j.1471-3802.2002.00157.x
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H. Bertilsdotter Rosqvist*, M. Botha*, K. Hens, S. O’Donoghue*, A. Pearson*, A. Stenning* (2023). "Cutting our own keys: New possibilities of neurodivergent storying in research." Autism, 27, doi:10.1177/13623613221132107
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M. Botha*, E. Cage (2022). "Autism research is in crisis: A mixed method study of researcher’s constructions of autistic people and autism research." Front. Psychol., 13, doi:10.3389/fpsyg.2022f.1050897
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N. Brown (2021). "Scope and continuum of participatory research." Int. J. Res. Method Educ., 45, doi:10.1080/1743727x.2021.1902980
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M. A. Cascio, J. A. Weiss, E. Racine (2020). "Making autism research inclusive by attending to intersectionality: A review of the research ethics literature." Rev. J. Autism Dev. Disord., 8, doi:10.1007/s40489-020-00204-z
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R. Cooper, K. Cooper, A. Russell, L. Smith (2020). "I’m proud to be a little bit different: The effects of autistic individual’s perceptions of autism and autism social identity on their collective self-esteem." J. Autism Dev. Disord., 51, doi:10.1007/s10803-020-04575-4
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L. Crane, C. Hearst*, M. Ashworth, J. Davies (2023). "Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults." Autism Dev. Lang. Impairments, 8, doi:10.1177/23969415231189608
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R. Davis, C. Crompton (2021). "What do new findings about social interaction in autistic adults mean for neurodevelopmental research?" Perspect. Psychol. Sci., 16, doi:10.1177/1745691620958010
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H. De Jaegher (2013). "Embodiment and sense-making in autism." Front. Integr. Neurosci., 7, doi:10.3389/fnint.2013.00015
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A. M. D’Mello, I. R. Frosch, C. E. Li, A. L. Cardinaux, J. D. E. Gabrieli (2022). "Exclusion of females in autism research: Empirical evidence for a ‘leaky’ recruitment-to-research pipeline." Autism Res., 15, doi:10.1002/aur.2795
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D. Draaisma (2009). "Stereotypes of autism." Philos. Trans. R. Soc. B: Biol. Sci., 364, doi:10.1098/rstb.2008.0324
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A. Ellard-Gray, N. Jeffrey, M. Choubak, S. Crann (2015). "Finding the hidden participant." Int. J. Qual. Methods, 14, doi:10.1177/1609406915621420
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S. Fletcher-Watson, S. Bölte, C. J. Crompton, D. Jones, M. C. Lai, W. Mandy, et al. (2021). "Publishing standards for promoting excellence in autism research." Autism, 25, doi:10.1177/13623613211019830
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J. Flowers, J. Dawes, D. McCleary, H. Marzolf (2023). "Words matter: Language preferences in a sample of autistic adults." Neurodiversity, 1, doi:10.1177/27546330231216548
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E. Gowen, R. Taylor, T. Bleazard, A. Greenstein, P. Baimbridge, D. Poole (2020). "Guidelines for conducting research studies with the autism community." Autism Policy Pract., 2, 29–45.
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A. Grant*, H. Kara (2021). "Considering the autistic advantage in qualitative research: The strengths of autistic researchers." Contemp. Soc. Sci., 16, doi:10.1080/21582041.2021.1998589
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F. V. Gratton, J. F. Strang, M. Song, K. Cooper, A. Kallitsounaki, M. C. Lai, et al. (2023). "The intersection of autism and transgender and nonbinary identities: Community and academic dialogue on research and advocacy." Autism Adulthood, 5, doi:10.1089/aut.2023.0042
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E. Gurbuz, M. Hanley, D. M. Riby (2019). "University students with autism: The social and academic experiences of university in the UK." J. Autism Dev. Disord., 49, doi:10.1007/s10803-018-3741-4
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L. Hasson, S. Keville, J. Gallagher, D. Onagbesan, A. K. Ludlow (2022). "Inclusivity in education for Autism Spectrum Disorders: Experiences of support from the perspective of parent/carers, school teaching staff and young people on the autism spectrum." Int. J. Dev. Disabil., doi:10.1080/20473869.2022.2070418
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J. Henrich, S. J. Heine, A. Norenzayan (2010). "The weirdest people in the world?" SSRN Electron. J., 139, doi:10.2139/ssrn.1601785
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O. Hewitt, P. E. Langdon, K. Tapp, M. Larkin (2023). "A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co-researchers involved and what are their experiences?" J. Appl. Res. Intell. Disabil., 36, doi:10.1111/jar.13100
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L. Hickman (2022). "Ways to make autism research more diverse and inclusive." Stamford, CO: Spectrum.
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S. C. Jones* (2023). "Advice for autistic people considering a career in academia." Autism, 27, doi:10.1177/13623613231161882
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E. A. Kaplan-Kahn, R. Caplan* (2023). "Combating stigma in autism research through centering autistic voices: A co-interview guide for qualitative research." Front. Psychiatry, 14, doi:10.3389/fpsyt.2023.1248247
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A. König, T. Hatzakis, A. Andrushevich, E.-J. Hoogerwerf, E. Vasconcelos, C. Launo, et al. (2022). "A reflection on participatory research methodologies in the light of the COVID-19 – lessons learnt from the European Research Project TRIPS." Open Res. Europe, 1, doi:10.12688/openreseurope.14315.2
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A. Leedham, A. Thompson, R. Smith, M. Freeth (2019). "I was exhausted trying to figure it out: The experiences of females receiving an autism diagnosis in middle to late adulthood." Autism, 24, doi:10.1177/1362361319853442
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K. Lewis, L. G. Hamilton, J. Vincent (2023). "Exploring the experiences of autistic pupils through creative research methods: Reflections on a participatory approach." Infant Child Dev., doi:10.1002/icd.2467
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K. M. Malone, J. N. Pearson, K. N. Palazzo, L. D. Manns, A. Q. Rivera, D. L. Mason-Martin (2022). "The scholarly neglect of black autistic adults in autism research." Autism Adulthood, 4, doi:10.1089/aut.2021.0086
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R. Monk*, A. J. O. Whitehouse, H. Waddington (2022). "The use of language in autism research." Trends Neurosci., 45, doi:10.1016/j.tins.2022.08.009
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G. North (2021). "Reconceptualising reasonable adjustments for the successful employment of autistic women." Disabil. Soc., 38, doi:10.1080/09687599.2021.1971065
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B. Oakley, J. Tillmann, A. Ruigrok, A. Baranger, C. Takow, T. Charman, et al. (2021). "Covid-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review." Int. J. Res. Method Educ., 45, 200–2011.
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T. Ross-Hellauer, J. P. Tennant, V. Banelytė, E. Gorogh, D. Luzi, P. Kraker, et al. (2020). "Ten simple rules for innovative dissemination of research." PLoS Comput. Biol., 16, doi:10.1371/journal.pcbi.1007704
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J. Sinclair* (1993). "Don’t mourn for us." Our Voice, 1, 1–7.
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J. Singer (2016). "NeuroDiversity: The birth of an idea." Seattle: Kindle.
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The Autism Employment Gap (2021). "New shocking data highlights the autism employment gap." (Source)
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S. Thompson-Hodgetts (2022). "Reflections on my experiences as a non-autistic autism researcher." Autism, 27, doi:10.1177/13623613221121432
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N. Walker* (2021). "Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities." Fort Worth: Autonomous Press.
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J. C. Wallis, C. L. Borgman (2012). "Who is responsible for data? An exploratory study of data authorship, ownership, and responsibility?" Proc. Am. Soc. Inf. Sci. Technol., 48, doi:10.1002/meet.2011.14504801188
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