“Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research
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, 1050897-1050897. https://doi.org/10.3389/fpsyg.2022.1050897
Authors
Abstract
Introduction While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering statements which set autistic people apart from non-autistic people, and below in status (stigmatization). Method This mixed-method study aimed to investigate how autism researchers construct autistic people and autism research, and to investigate whether including autistic people more in research relates to lower ableism in narratives about autistic people. We used a survey with autism researchers ( N = 195) asking five open-ended questions about autism and autism research, as well as demographics, career length, contact with autistic people (familial and non-familial) and degree to which researchers involve autistic people in their research. We used content analysis to categorize narratives used by autism researchers and cues for ableism (dehumanization, objectification, and stigmatization). We then used binary-logistic regression to identify whether narrative or higher inclusion of autistic people predicted fewer ableist cues, controlling for career length and connections to autistic people. Results and discussion Using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives. Greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length. Next, we used reflexive thematic analysis to analyze researcher’s perceptions of autistic people and autism research. Narratives reflected core ideological disagreements of the field, such as whether researchers consider autism to be an intrinsic barrier to a good life, and whether researchers prioritize research which tackles “autism” versus barriers to societal inclusion for autistic people. Instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence. Lastly, language seemed to act as a tool of normalization of violence. Researchers relied on an amorphous idea of “autism” when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing “autistic people,” despite autism only existing within the context of autistic people.
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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.
-
Mary Beth Walsh (2011). The Top 10 Reasons Children With Autism Deserve ABA . Behavior Analysis in Practice, 4(1), 72-79. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Erin E. Andrews (2017). Disability Models . In Practical Psychology in Medical Rehabilitation (pp. 77-83). Springer International Publishing.Crossref OpenAlex OpenCitations
-
Cos Michael (2021). Is Being Othered a Co-Occurring Condition of Autism? Autism in Adulthood, 3(2), 118-119. SAGE Publications.Crossref OpenAlex OpenCitations
-
(2011). A history of autism: conversations with the pioneers . Choice Reviews Online, 48(08), 48-4518-48-4518. American Library Association.OpenAlex
-
(2013). B2 Diagnostic and Statistical Manual for Mental Disorders..Type: OtherCrossref
-
Eilidh Cage , Jessica Di Monaco , Victoria Newell (2019). Understanding, attitudes and dehumanisation towards autistic people . Autism, 23(6), 1373-1383. SAGE Publications.Crossref OpenAlex OpenCitations
-
Bonnie Moradi (2013). Discrimination, Objectification, and Dehumanization: Toward a Pantheoretical Framework . Nebraska Symposium on Motivation, 60, 153-181. Springer New York.Crossref OpenAlex OpenCitations
-
Sherry R. Arnstein (1969). A Ladder Of Citizen Participation . Journal of the American Institute of Planners, 35(4), 216-224. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Nick Haslam (2006). Dehumanization: An Integrative Review . Personality and Social Psychology Review, 10(3), 252-264. SAGE Publications.Crossref OpenAlex OpenCitations
-
Type: Article OpenAlex: https://openalex.org/W279745879Crossref OpenAlex
-
Hans Asperger (1944). Die „Autistischen Psychopathen” im Kindesalter . Archiv für Psychiatrie und Nervenkrankheiten, 117(1), 76-136. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Kristen Bottema‐Beutel , Shannon Crowley , Micheal Sandbank , Tiffany G. Woynaroski (2021). Adverse event reporting in intervention research for young autistic children . Autism, 25(2), 322-335. SAGE Publications.Crossref OpenAlex OpenCitations
-
Mark R. Fondacaro , Darin Weinberg (2002). Concepts of Social Justice in Community Psychology: Toward a Social Ecological Epistemology . American Journal of Community Psychology, 30(4), 473-492. Wiley.Crossref OpenAlex OpenCitations
-
Baron-Cohen (2009). B5 Autism Test “Could Hit Maths Skills”..Type: OtherCrossref
-
Laura Roche , Dawn Adams , Megan Clark (2021). Research priorities of the autism community: A systematic review of key stakeholder perspectives . Autism, 25(2), 336-348. SAGE Publications.
-
Kristen Gillespie-Lynch , Patricia J. Brooks , Fumio Someki , Rita Obeid , Christina Shane‐Simpson , Steven K. Kapp *Autistic author. Learn more… et al. (2015). Changing College Students’ Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma . Journal of Autism and Developmental Disorders, 45(8), 2553-2566. Springer Science and Business Media LLC.
-
Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Bhaskar (1997). B7 A Realist Theory of Science..Type: OtherCrossref
-
Hannah Pickard , Elizabeth Pellicano , Jacquiline den Houting *Autistic author. Learn more… , Laura Crane (2022). Participatory autism research: Early career and established researchers’ views and experiences . Autism, 26(1), 75-87. SAGE Publications.
-
Herbert G. Kelman (1973). Violence without Moral Restraint: Reflections on the Dehumanization of Victims and Victimizers . Journal of Social Issues, 29(4), 25-61. Wiley.Crossref OpenAlex OpenCitations
-
Monique Botha *Autistic author. Learn more… , David M. Frost (2020). Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population . Society and Mental Health, 10(1), 20-34. SAGE Publications.
-
Kristen Bottema‐Beutel , Steven K. Kapp *Autistic author. Learn more… , Jessica Nina Lester , Noah J. Sasson , Brittany N. Hand (2021). Avoiding Ableist Language: Suggestions for Autism Researchers . Autism in Adulthood, 3(1), 18-29. SAGE Publications.
-
Susan Opotow (1990). Moral Exclusion and Injustice: An Introduction . Journal of Social Issues, 46(1), 1-20. Wiley.Crossref OpenAlex OpenCitations
-
Monique Botha *Autistic author. Learn more… (2021). Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production . Frontiers in Psychology, 12(6), 727542-727542. Frontiers Media SA.
-
Uta Frith , Francesca Happé (1999). Theory of Mind and Self‐Consciousness: What Is It Like to Be Autistic? Mind & Language, 14(1), 82-89. Wiley.Crossref OpenAlex OpenCitations
-
Andrew Cashin , Dip App Sci (2006). Two Terms—One Meaning: The Conundrum of Contemporary Nomenclature in Autism . Journal of Child and Adolescent Psychiatric Nursing, 19(3), 137-144. Wiley.Crossref OpenAlex OpenCitations
-
Monique Botha *Autistic author. Learn more… (2022). Community psychology as reparations for violence in the construction of autism knowledge 1 . In The Routledge International Handbook of Critical Autism Studies (pp. 76-94). Routledge.
-
Robert Chapman *Autistic author. Learn more… (2020). The reality of autism: On the metaphysics of disorder and diversity . Philosophical Psychology, 33(6), 799-819. Informa UK Limited.
-
Monique Botha *Autistic author. Learn more… , Jacqueline Hanlon , Gemma Williams *Autistic author. Learn more… (2023). Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti . Journal of Autism and Developmental Disorders, 53(2), 870-878. Springer Science and Business Media LLC.
-
Steven K. Kapp *Autistic author. Learn more… (2020). Autistic Community and the Neurodiversity Movement . Springer Singapore.
-
Wanda Pillow (2003). Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research . International Journal of Qualitative Studies in Education, 16(2), 175-196. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Elesia Ashkenazy *Autistic author. Learn more… , Katherine McDonald , Sebastian Dern , Amelia E.V. Baggs et al. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum . Autism, 19(7), 824-831. SAGE Publications.
-
Jacqueline Roberts (2010). Can the World Afford Autistic Spectrum Disorder? Nonverbal Communication, Asperger Syndrome and the Interbrain . Journal of Intellectual & Developmental Disability, 35(1), 50-51. Informa UK Limited.OpenAlex
-
MARTHA C. NUSSBAUM (1995). Objectification . Philosophy & Public Affairs, 24(4), 249-291. Wiley.Crossref OpenAlex OpenCitations
-
Jacques-Philippe Leyens , Paola M. Paladino , Ramon Rodriguez-Torres , Jeroen Vaes , Stéphanie Demoulin , Armando Rodriguez-Perez et al. (2000). The Emotional Side of Prejudice: The Attribution of Secondary Emotions to Ingroups and Outgroups . Personality and Social Psychology Review, 4(2), 186-197. SAGE Publications.Crossref OpenAlex OpenCitations
-
Damian Milton *Autistic author. Learn more… (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies . Autism, 18(7), 794-802. SAGE Publications.
-
Simon M. Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Nick Haslam , Steve Loughnan (2014). Dehumanization and Infrahumanization . Annual Review of Psychology, 65(1), 399-423. Annual Reviews.Crossref OpenAlex OpenCitations
-
Jennifer Singh , Judy Illes , Laura Lazzeroni , Joachim Hallmayer (2009). Trends in US Autism Research Funding . Journal of Autism and Developmental Disorders, 39(5), 788-795. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Francesca Happé , Angelica Ronald , Robert Plomin (2006). Time to give up on a single explanation for autism . Nature Neuroscience, 9(10), 1218-1220. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
H. H. Stonnington (1998). Nothing About Us Without Us: Disability Oppression and Empowerment . JAMA: The Journal of the American Medical Association, 280(16), 1456-a-1457. American Medical Association (AMA).OpenAlex
-
Sue Fletcher‐Watson , Jonathan Adams *Autistic author. Learn more… , Kabie Brook *Autistic author. Learn more… , Tony Charman , Laura Crane , James Cusack *Autistic author. Learn more… et al. (2019). Making the future together: Shaping autism research through meaningful participation . Autism, 23(4), 943-953. SAGE Publications.
-
Anne-Marie Nader , Valérie Courchesne , Michelle Dawson *Autistic author. Learn more… , Isabelle Soulières (2016). Does WISC-IV Underestimate the Intelligence of Autistic Children? Journal of Autism and Developmental Disorders, 46(5), 1582-1589. Springer Science and Business Media LLC.
-
Chapman (2021). B19 Simon Baron-Cohen, Neurodiversity-lite, and the History of Eugenic Thought..Type: OtherCrossref
-
Chapman (2021). B20 The Autistic Communities Concerns Regarding Spectrum 10K and Eugenics Are Valid..Type: OtherCrossref
-
Roy Bhaskar (2013). A Realist Theory of Science . Routledge.OpenAlex
-
Charlton (2004). B21 Nothing about us without us: Disability Oppression and Empowerment..Type: OtherCrossref
-
Nicholas Chown *Autistic author. Learn more… , Jackie Robinson , Luke Beardon , Jillian Downing , Elizabeth Hughes , Julia Leatherland et al. (2017). Improving research about us, with us: a draft framework for inclusive autism research . Disability & Society, 32(5), 720-734. Informa UK Limited.
-
Kristen Gillespie-Lynch , Steven K. Kapp *Autistic author. Learn more… , Patricia J. Brooks , Jonathan Pickens , Ben Schwartzman (2017). Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts . Frontiers in Psychology, 8, 438-438. Frontiers Media SA.
-
Steven K. Kapp *Autistic author. Learn more… , Kristen Gillespie-Lynch , Lauren E. Sherman , Ted Hutman (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. American Psychological Association (APA).
-
Cowen (2009). B23 Autism as Academic Paradigm..Type: OtherCrossref
-
Waleed M. Sweileh , Samah W. Al-Jabi , Ansam F. Sawalha , Sa’ed H. Zyoud (2016). Bibliometric profile of the global scientific research on autism spectrum disorders . SpringerPlus, 5(1), 1480. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Herwig Czech (2018). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna . Molecular Autism, 9(1), 29-29. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
C. Oliver (2012). Critical Realist Grounded Theory: A New Approach for Social Work Research . British Journal of Social Work, 42(2), 371-387. Oxford University Press (OUP).Crossref OpenAlex OpenCitations
-
Anna N. De Hooge (2019). Binary Boys: Autism, Aspie Supremacy and Post/Humanist Normativity . Disability Studies Quarterly, 39(1), 2. The Ohio State University Libraries.Crossref OpenAlex OpenCitations
-
Giacomo Vivanti (2020). Ask the Editor: What is the Most Appropriate Way to Talk About Individuals with a Diagnosis of Autism? Journal of Autism and Developmental Disorders, 50(2), 691-693. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Jacquiline den Houting *Autistic author. Learn more… , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
-
Jacquiline den Houting *Autistic author. Learn more… , Julianne M. Higgins *Autistic author. Learn more… , Kathy Isaacs *Autistic author. Learn more… , Joanne Mahony , Elizabeth Pellicano (2021). ‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research . Autism, 25(1), 148-163. SAGE Publications.
-
Majia Holmer Nadesan (2013). Constructing Autism . Routledge.Crossref OpenAlex OpenCitations
-
Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2014). What should autism research focus upon? Community views and priorities from the United Kingdom . Autism, 18(7), 756-770. SAGE Publications.
-
Jacquiline den Houting *Autistic author. Learn more… (2019). Neurodiversity: An insider’s perspective . Autism, 23(2), 271-273. SAGE Publications.
-
L Kanner (1968). Autistic disturbances of affective contact. Acta Paedopsychiatr, 35(4), 100.Type: Article OpenAlex: https://openalex.org/W2192638454OpenAlex
-
Chloe Farahar *Autistic author. Learn more… (2022). Autistic identity, culture, community, and space for well-being . In The Routledge International Handbook of Critical Autism Studies (pp. 229-241). Routledge.
-
Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.Crossref OpenAlex OpenCitations
-
Feinstein (2011). A history of autism: Conversations with the pioneers . A History of Autism: Conversations with the Pioneers..Type: OtherCrossref
-
Jessica M. LaCroix , Felicia Pratto (2015). Instrumentality and the denial of personhood: The social psychology of objectifying others . Rev. Int. Psychol. Soc., 28(1), 183.Type: Article OpenAlex: https://openalex.org/W2244961200Crossref OpenAlex
-
Léo Kanner (1943). Autistic disturbances of affective contact . Nervous Child, 2(3), 217.Type: Article OpenAlex: https://openalex.org/W2255119171Crossref OpenAlex
-
Sue Fletcher‐Watson , Kabie Brook *Autistic author. Learn more… , Sonny Hallett *Autistic author. Learn more… , Fergus Murray *Autistic author. Learn more… , Catherine J. Crompton (2021). Inclusive Practices for Neurodevelopmental Research . Current Developmental Disorders Reports, 8(2), 88-97. Springer Science and Business Media LLC.
-
Julie Smart Ph. D (2015). Challenges to the Biomedical Model of Disability .Type: Article OpenAlex: https://openalex.org/W2406895703OpenAlex
-
Anne V. Kirby , Katherine McDonald (2021). The State of the Science on Autism in Adulthood: Building an Evidence Base for Change . Autism in Adulthood, 3(1), 2-4. SAGE Publications.Crossref OpenAlex OpenCitations
-
Anne McGuire (2016). War on Autism . University of Michigan Press.Crossref OpenAlex
-
Gregory Hollin (2017). Autistic Heterogeneity: Linking Uncertainties and Indeterminacies . Science as Culture, 26(2), 209-231. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Rachel Loomes , Laura Hull , Will Mandy (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis . Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474. Elsevier BV.Crossref OpenAlex OpenCitations
-
Sarah Griffiths , Carrie Allison , Rebecca Kenny , Rosemary Holt , Paula Smith , Simon Baron-Cohen (2019). The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults . Autism Research, 12(10), 1516-1528. Wiley.Crossref OpenAlex OpenCitations
-
Hacking (2001). B39 The Social Construction of what? (8. printing)..Type: OtherCrossref
-
Anna Williams *Autistic author. Learn more… (2018). Authoring autism: on rhetoric and neurological queerness . Disability & Society, 33(6), 996-997. Informa UK Limited.AutiHub · Autistic Scholars OpenAlex
-
Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… , Amelia E.V. Baggs , Elesia Ashkenazy *Autistic author. Learn more… , Katherine McDonald et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants . Autism, 23(8), 2007-2019. SAGE Publications.
-
Jonathan A. Weiss , Michelle A. Fardella (2018). Victimization and Perpetration Experiences of Adults With Autism . Frontiers in Psychiatry, 9, 203-203. Frontiers Media SA.Crossref OpenAlex OpenCitations
-
William S. New , Hristo Kyuchukov (2023). Sukhareva’s (1930) ‘Toward the problem of the structure and dynamics of children’s constitutional psychopathies (Schizoid forms)’: a translation with commentary . European Child & Adolescent Psychiatry, 32(8), 1453-1461. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Kristien Hens , Ingrid Robeyns , Katrien Schaubroeck (2019). The ethics of autism . Philosophy Compass, 14(1), e12559. Wiley.Crossref OpenAlex OpenCitations
-
Elizabeth Pellicano , Wenn Lawson *Autistic author. Learn more… , Gabrielle Hall *Autistic author. Learn more… , Joanne Mahony , Rozanna Lilley , Melanie Heyworth *Autistic author. Learn more… et al. (2022). “I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project . Autism in Adulthood, 4(2), 120-129. SAGE Publications.
-
Gábor Petri (2016). Neurotribes. The Legacy of Autism and How to Think Smarter about People who Think Differently . Tizard Learning Disability Review, 21(4), 226-228. Emerald.OpenAlex
-
Elizabeth Pellicano , Jacquiline den Houting *Autistic author. Learn more… (2022). Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science . Journal of Child Psychology and Psychiatry, 63(4), 381-396. Wiley.
-
Damian Milton *Autistic author. Learn more… , Timimi, Sami (2016). Does autism have an essential nature? Kent Academic Repository (University of Kent).Type: Other OpenAlex: https://openalex.org/W2942193193OpenAlex
-
Lewis (2021). B52 January 2021 Working Definition of Ableism [Professional]..Type: OtherCrossref
-
(2019). B55 What it’s Like to be Autistic at an Autism Research Conference..Type: OtherCrossref
-
Jessica R Steinbrenner , Nancy S. McIntyre , Lindsay F Rentschler , Jamie N Pearson , Paul Luelmo , Maria Elizabeth Jaramillo et al. (2022). Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices . Autism, 26(8), 2026-2040. SAGE Publications.Crossref OpenAlex OpenCitations
-
Milton (2016). B59 Does Autism have an Essential Nature?.Type: OtherCrossref
-
Rose (2020). B75 Regarding the use of Dehumanising Rhetoric..Type: OtherCrossref
-
Silberman (2015). NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently . Neurotribes: The legacy of autism and how to think smarter about people who think differently.Type: OtherCrossref
-
(1993). B77 Don’t Mourn for Us. 1..Type: OtherCrossref
-
Singer (2017). Neurodiversity: The birth of an idea . Neurodiversity: The Birth of an Idea.Type: OtherCrossref
-
Smart (2006). Challenges to the biomedical model of disability. Adv. Med. Psychotherapy Psychodiagn., 12, 1.Type: OtherCrossref
-
Tantam (2009). B83 Can the World Afford Autistic Spectrum Disorder? Nonverbal Communication, Asperger Syndrome and the Interbrain..Type: OtherCrossref
-
Yergeau (2018). Authoring Autism: On Rhetoric and Neurological Queerness . Authoring Autism: On Rhetoric and Neurological Queerness..Type: OtherCrossref