Abstract
The assumption that autistic individuals do not have the theory of mind – the social-cognitive ability to understand other people by attributing mental states to them – has been widespread in the psychological literature. However, the empirical evidence from the original research and its replications failed to prove and support autistic mind-blindness. Yet, it is still present in literature on autism spectrum. Meanwhile, convincing research, that has been conducted among autistic researchers and their allies, is often overlooked by non-autistic specialists. This paper focuses on how autistic autism researchers have been influencing their field of study and how academy can benefit from their work.
References
AASPIRE 2020. About ASAN. Available online at: https://autisticadvocacy.org/about-asan/operational-policy-on-research-inquiries/ (accessed August 31, 2023).
Arky B. 2023 (June 16). “Why Many Autistic Girls Are Overlooked,” Child Mind Institute. Available online at: https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/ (accessed August 31, 2023).
Autism Research Institute 2023. “Mission Statement.” Available online at: https://autism.org/mission-statement/ (accessed August 31, 2023).
Autistic Self Advocacy Network (n.d.). “Operational Policy on Research Inquiries,” Autistic Self Advocacy Network (ASAN). Available online at: https://autisticadvocacy.org/about-asan/operational-policy-on-research-inquiries/ (accessed August 31, 2023).
Autistic Self-Advocacy Network 2022. “For Whose Benefit? Evidence, Ethics and Effectiveness of Autism Interventions.” Available online at: https://autisticadvocacy.org/policy/briefs/intervention-ethics/ (accessed August 31, 2023).
Ball E. & Jeffrey-Wilensky J. 2020 (November 26). “Why Autism Training for Police Isn’t Enough,” Spectrum. Available online at: https://www.spectrumnews.org/news/why-autism-training-for-police-isnt-enough/ (accessed August 31, 2023).
Baron-Cohen S. 1990. “Autism: A Specific Cognitive Disorder of ‘Mind-Blindness’,” International Review of Psychiatry 2(1):81-90. DOI: https://doi.org/10.3109/09540269009028274
Baron-Cohen S. 2002. “The Extreme Male Brain Theory of Autism,” Trends in Cognitive Sciences 6(6):248-254. DOI: https://doi.org/10.1016/S1364-6613(02)01904-6
Baron-Cohen S. 2009. “Autism: The Empathizing-Systemizing (E-S) Theory,” Annals of the New York Academy of Sciences 1156:68-80. DOI: https://doi.org/10.1111/j.1749-6632.2009.04467.x
Baron-Cohen S. 2021. Poszukiwacze wzorów: autyzm a ludzka wynalazczość [orig. The Pattern Sikers], trans. A. Nowak-Młynikowska. Sopot: Smak Słowa.
Baron-Cohen S., Leslie A. M., & Frith U. 1985. “Does the Autistic Child Have a ‘Theory of Mind’?” Cognition 21(1):37-46. DOI: https://doi.org/10.1016/0010-0277(85)90022-8
Bertilsdotter Rosqvist H., Botha M., Hens K., O’Donoghue S., Pearson A., & Stenning A. 2023. “Cutting Our Own Keys: New Possibilities of Neurodivergent Storying in Research,” Autism 27(5):1235-1244. DOI: https://doi.org/10.1177/13623613221132107
Bertilsdotter Rosqvist H., Kourti M., Jackson-Perry D., et al. 2019. “Doing It Differently: Emancipatory Autism Studies within a Neurodiverse Academic Space,” Disability & Society 34:1082-1101. DOI: https://doi.org/10.1080/09687599.2019.1603102
Borland E. 2020 (May 13). “Standpoint Theory,” Encyclopedia Britannica. Available online at: https://www.britannica.com/topic/standpoint-theory (accessed September 30, 2023).
Botha M. & Frost D. M. 2020. “Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population,” Society and Mental Health 10(1):20-34. DOI: https://doi.org/10.1177/2156869318804297
Botha M. 2021. “Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production,” Frontiers in Psychology 12, Article 727542. DOI: https://doi.org/10.3389/fpsyg.2021.727542
Botha M. & Cage E. 2022. “’Autism Research Is in Crisis’: A Mixed Method Study of Researcher’s Constructions of Autistic People and Autism Research,” Frontiers in Psychology 13, Article 1050897. DOI: https://doi.org/10.3389/fpsyg.2022.1050897
Chown N., Robinson J., Beardon L., Downing J., Hughes L., Leatherland J., Fox K., Hickman L., & MacGregor D. 2017. “Improving Research about Us, with Us: A Draft Framework for Inclusive Autism Research,” Disability & Society 32(5):720-734. DOI: https://doi.org/10.1080/09687599.2017.1320273
De Vries P. 2023 (May 3). “What Kind of Autism Research Should We Do, and Where Should We Do It?” Spectrum. DOI: https://doi.org/10.53053/NCPF9992
Dinishak J. & Akhtar N. 2013. “A Critical Examination of Mindblindness as a Metaphor for Autism,” Child Development Perspectives 7:110-114. DOI: https://doi.org/10.1111/cdep.12026
Dwyer P., Acevedo S., Brown H., Grapel J., Jones S., Nachman B., Raymaker D., & Williams Z. 2021. “An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers,” Autism in Adulthood 3(3):209-220. DOI: https://doi.org/10.1089/aut.2021.29019.rtb
Dwyer P. 2021 (April 8). “Revisiting Monotropism,” Autistic Scholar. Available online at: https://www.autisticscholar.com/monotropism/ (accessed October 1, 2023).
Dziewczyny w Spektrum (n.d.). Ludzie, Fundacja Dziewczyny w Spektrum. Available online at: https://dziewczynywspektrum.pl/o-nas/ludzie/ (accessed September 29, 2023).
Edey R., Cook J., Brewer R., Johnson M. H., Bird G., & Press C. 2016. “Interaction Takes Two: Typical Adults Exhibit Mind-blindness towards Those with Autism Spectrum Disorder,” Journal of Abnormal Psychology 125(7):879–885. DOI: https://doi.org/10.1037/abn0000199
Fletcher-Watson S., Adams J., Brook K., Charman T., Crane L., Cusack J., Leekam S., Milton D., Parr J. R., & Pellicano E. 2019. “Making the Future Together: Shaping Autism Research through Meaningful Participation,” Autism 23(4):943-953. DOI: https://doi.org/10.1177/1362361318786721
Fung L. K. 2021. Neurodiversity: From Phenomenology to Neurobiology and Enhancing Technologies (1st Ed.). American Psychiatric Association Publishing. Available online at: http://public.eblib.com/choice/PublicFullRecord.aspx?p=6635136 (accessed October 4, 2023).
Gernsbacher M. A. 2018. “Critical Review of Autism and Theory and Mind: A Tech Report (v2),” Open Science Framework.
Gernsbacher M. A. & Yergeau M. 2019. “Empirical Failures of the Claim that Autistic People Lack a Theory of Mind,” Archives of Scientific Psychology 7(1):102-118. DOI: https://doi.org/10.1037/arc0000067
Grinker R. R. 2010. “Commentary: On Being Autistic, and Social,” Ethos 38(1):172-178. DOI: https://doi.org/10.1111/j.1548-1352.2010.01087.x
Hacking I. 2015. “Let’s Not Talk about Objectivity,” in F. Padovani, A. Richardson, & J. Y. Tsou (Eds.), Objectivity in Science: New Perspectives from Science and Technology Studies (pp. 19-33). Cham: Springer International Publishing.
Heasman B. & Gillespie A. 2019. “Neurodivergent Intersubjectivity: Distinctive Features of How Autistic People Create Shared Understanding,” Autism 23(4):910-921. DOI: https://doi.org/10.1177/1362361318785172
Heasman B. & Gillespie A. 2019. “Participants Over-Estimate How Helpful They Are in a Two-Player Game Scenario Toward an Artificial Confederate That Discloses a Diagnosis of Autism,” Frontiers in Psychology 10, Article 1349. DOI: https://doi.org/10.3389/fpsyg.2019.01349
Hens K. 2021. Towards an Ethics of Autism: A Philosophical Exploration. Cambridge, UK: Open Book Publishers. DOI: https://doi.org/10.11647/obp.0261
Hirvikoski T., Mittendorfer-Rutz E., Boman M., Larsson H., Lichtenstein P., & Bölte S. 2016. “Premature Mortality in Autism Spectrum Disorder,” British Journal of Psychiatry 208:232-238. DOI: https://doi.org/10.1192/bjp.bp.114.160192
Home Office 2018. Police Use of Force Statistics, England and Wales: April 2017 to March 2018.
Jones S. C. 2021. “Let’s Talk About Autistic Autism Researchers,” Autism in Adulthood: Challenges and Management 3(3):206-208. DOI: https://doi.org/10.1089/aut.2021.29012.scj
Kapp S. 2019. “How Social Deficit Models Exacerbate the Medical Model: Autism as Case in Point,” Autism Policy and Practice 2(1):3-28.
Khamsi R. (Host) 2022 (August 26). “Meet Two Autistic Researchers Changing How Autism Research Is Done.” Audio podcast episode, in Science Friday. Available online at: https://www.sciencefriday.com/segments/autism-research/
Kourti M. 2021. “A Critical Realist Approach on Autism: Ontological and Epistemological Implications for Knowledge Production in Autism Research,” Frontiers in Psychology 12, 713423. DOI: https://doi.org/10.3389/fpsyg.2021.713423
Ławicka J. 2022. Jarzmo. Spektrum przemocy. Wrocław: Fundacja Prodeste.
Milton D. 2012. “On the Ontological Status of Autism: The ‘Double Empathy’ Problem,” Disability & Society 27(6):883-887. DOI: https://doi.org/10.1080/09687599.2012.710008
Milton D., & Ryan S. (Eds.). 2022. The Routledge International Handbook of Critical Autism Studies (1st Ed.). London: Routledge. DOI: https://doi.org/10.4324/9781003056577
Murray F. & Lawson W. 2022. “History of Monotropism,” Monotropism. Available online: https://monotropism.org/history/ (accessed: August 31, 2023).
Murray D., Lesser M., & Lawson W. 2005. “Attention, Monotropism and the Diagnostic Criteria for Autism,” Autism: The International Journal of Research and Practice 9(2):139-156. DOI: https://doi.org/10.1177/1362361305051398
Nicolaidis C., Milton D., Sasson N. J., Sheppard E. L., & Yergeau M. 2019. “An Expert Discussion on Autism and Empathy,” Autism in Adulthood: Challenges and Management 1(1):4-11. DOI: https://doi.org/10.1089/aut.2018.29000.cjn
Nuwer R. 2020 (June 10). “Meet the Autistic Scientists Redefining Autism Research,” Spectrum. DOI: https://doi.org/10.53053/POPK3874
Pellicano E., Lawson W., Hall G., Mahony J., Lilley R., Heyworth M., Clapham H., & Yudell M. 2022. “I Knew She’d Get It, and Get Me”: Participants’ Perspectives of a Participatory Autism Research Project,” Autism in Adulthood: Challenges and Management 4(2):120-129. DOI: https://doi.org/10.1089/aut.2021.0039
Prokopiak A. (Ed.) 2020. Osoby ze spektrum autyzmu w biegu życia [Persons with autism spectrum in the life course]. Lublin, Wydawnictwo Uniwersytetu Marii Curie-Skłodowskiej.
Pukki H., Bettin J., Outlaw A. G., Hennessy J., Brook K., Dekker M., Doherty M., Shaw S. C. K., Bervoets J., Rudolph S., Corneloup T., Derwent K., Lee O., Rojas Y. G., Lawson W., Gutierrez M. V., Petek K., Tsiakkirou M., Suoninen A., Minchin J., Döhle R., Lipinski S., Natri H., Reardon E., Estrada G. V., Platon O., Chown N., Satsuki A., Milton D., Walker N., Roldan O., Herrán B., Cañedo C. L., McCowan S., Johnson M., Turner E. J., Lammers J., & Yoon W. H. 2022. “Autistic Perspectives on the Future of Clinical Autism Research,” Autism Adulthood 4(2):93-101. DOI: https://doi.org/10.1089/aut.2022.0017
Rosqvist H., Chown N., & Stenning A. (Eds.) 2020. Neurodiversity Studies: A New Critical Paradigm (1st Ed.). London: Routledge. DOI: https://doi.org/10.4324/9780429322297-1
Saporito K. 2022 (February 3). “Autism Is Underdiagnosed in Girls and Women,” Psychology Today. Available online at: https://www.psychologytoday.com/us/blog/understanding-the-diversity-in-neurodiversity/202202/autism-is-underdiagnosed-in-girls-and/ (accessed September 30, 2023).
Schaeffer L. 2023. “The Urgency of Addressing the Underdiagnosis of Autism in Females,” Journal of Psychiatry and Neurology 1(1):18-20. DOI: https://doi.org/10.37191/Mapsci-JPN-1(1)-002
Sheppard E., Pillai D., Wong G. T.-L., Ropar D., & Mitchell P. 2016. “How Easy Is It to Read the Minds of People with Autism Spectrum Disorder?” Journal of Autism and Developmental Disorders 46(4):1247-1254. DOI: https://doi.org/10.1007/s10803-015-2662-8
Sekułowicz M. 2015. ”Przeciwdziałanie przemocy rówieśniczej wobec dzieci ze spektrum autyzmu w szkole ogólnodostępnej” [Prevention of peer violence against children with autism spectrum in a public school], in M. Kummant (Ed.), Przemoc rówieśnicza wobec dzieci z SPE. Materiały pokonferencyjne. Warszawa: Ośrodek Rozwoju Edukacji.
Shattuck P. T., Narendorf S. C., Cooper B., Sterzing P. R., Wagner M., & Taylor J. L. 2012. “Postsecondary Education and Employment among Youth with an Autism Spectrum Disorder,” Pediatrics 129:1042-1049. DOI: https://doi.org/10.1542/peds.2011-2864
Shkedy G., Shkedy D., & Sandoval-Norton A. H. 2021. “Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, and Zane,” Advances Neurodevelopmental Disorders 5:126-134. DOI: https://doi.org/10.1007/s41252-021-00201-1
Silberman S. 2015. Introduction, Neurotribes. Sidney – Melbourne – Auckland – London: Allen & Unwin Book Publishers.
Sinclair J. 2010. “Being Autistic Together,” Disability Studies Quarterly 30(1). DOI: https://doi.org/10.18061/dsq.v30i1.1075
Singer J. 1999. “’Why Can’t You Be Normal for Once in Your Life?’ From a ‘Problem with No Name’ to the Emergence of a New Category of Difference,” in M. Corker & S. French (Eds.), Disability Discourse (pp. 59–67). McGraw-Hill Education, UK.
Thom-Jones S. C. 2021. “Autistic Researchers Researching Autism, on: Autistic Professor.” Available online at: https://www.autisticprofessor.com/autisticresearchers (accessed August 31, 2023).
Timpson E., Great Britain, and Department for Education 2019. Timpson Review of School Exclusion.
Van Eijk L. & Zietsch B. P. 2021. “Testing the Extreme Male Brain Hypothesis: Is Autism Spectrum Disorder Associated with a More Male-typical Brain?” Autism Research: Official Journal of the International Society for Autism Research 14(8):1597-1608. DOI: https://doi.org/10.1002/aur.2537
Walker N. 2021. Neuroqueer Heresies: Notes on the Neurodiversity Paradigm Autistic Empowerment and Postnormal Possibilities. Forth Worth, TX: Autonomous Press.
Waltz M. 2008. “Autism = Death: The Social and Medical Impact of a Catastrophic Medical Model of Autistic Spectrum Disorders,” Journal of Popular Narrative Media 1(1):13–24. Available online at: https://core.ac.uk/download/pdf/185437394.pdf (accessed September 30, 2023). DOI: https://doi.org/10.3828/pnm.1.1.4
Woods R., Milton D., Arnold L., & Graby S. 2018. “Redefining Critical Autism Studies: A More Inclusive Interpretation,” Disability & Society 33(6):974-979. DOI: https://doi.org/10.1080/09687599.2018.1454380
World Health Organization 2019. “6A02 Autism Spectrum Disorder,” International Statistical Classification of Diseases and Related Health Problems (11th Ed.). Available online at: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/437815624 (accessed September 30, 2023).
Yergeau M. 2018. Authoring Autism: On Rhetoric and Neurological Queerness. Durham: Duke University Press. DOI: https://doi.org/10.1215/9780822372189
License
Copyright (c) 2023 Agnieszka Kędra
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.