What is autism? Identity in jeopardy and the collaborative way ahead

Alexandrovsky, M., Frayne, M., & Lai, M. C. (2025). What is autism? Identity in jeopardy and the collaborative way ahead. Autism, 29(10), 2371-2378. https://doi.org/10.1177/13623613251371485

Publication date: 30 Aug 2025 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English

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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)

Abstract

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Cited references
87
Total cited references integrated for this publication.
Cited references with an identified autistic author
20 / 87 (23.0%)
Cited author occurrences identified as autistic
45 / 404 (11.1%)
Among occurrences linked to AutiHub author records: 45 / 188 (23.9%). Distinct cited authors identified as autistic: 32 / 358 (8.9%).
Cited author occurrences linked to AutiHub author records
188 / 404 (46.5%)
Distinct linked cited authors: 148 / 358 (41.3%)
Linked cited-author occurrences not identified as autistic
143 / 188 (76.1%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 143 / 404 (35.4%). Distinct linked cited authors not identified as autistic: 116 / 148 (78.4%).
  1. Hans Asperger (1991). ‘Autistic psychopathy’ in childhood . In Autism Asperger syndrome (pp. 37-92). Cambridge University Press.
    Crossref OpenAlex OpenCitations
  2. Gail A. Alvares , Keely Bebbington , Dominique Cleary , Kiah Evans , Emma J Glasson , Murray T. Maybery et al. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis . Autism, 24(1), 221-232. SAGE Publications.
    Crossref OpenAlex OpenCitations
  3. J Leask (2005). Evidence for autism in folklore? Archives of Disease in Childhood, 90(3), 271-271. BMJ.
    Crossref OpenAlex OpenCitations
  4. Uta Frith (1991). Asperger and his syndrome . In Autism and Asperger Syndrome (pp. 1-36). Cambridge University Press.
    Crossref OpenAlex OpenCitations
  5. Catherine Lord , Tony Charman , Alexandra Havdahl , Paul Carbone , Evdokia Anagnostou , Brian Boyd et al. (2022). The Lancet Commission on the future of care and clinical research in autism . The Lancet, 399(10321), 271-334. Elsevier BV.
    Crossref OpenAlex OpenCitations
  6. Damian Milton *Autistic author. Learn more… (2012). On the ontological status of autism: the ‘double empathy problem’ . Disability & Society, 27(6), 883-887. Informa UK Limited.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  7. Duncan E. Astle , Joni Holmes , Rogier Kievit , Susan E. Gathercole (2022). Annual Research Review: The transdiagnostic revolution in neurodevelopmental disorders . Journal of Child Psychology and Psychiatry, 63(4), 397-417. Wiley.
    Crossref OpenAlex OpenCitations
  8. K. S. Kendler , P. Zachar , C. Craver (2011). What kinds of things are psychiatric disorders? Psychological Medicine, 41(6), 1143-1150. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  9. Gray Atherton , Yuko Morimoto , Satoshi Nakashima , Liam Cross (2023). Does the Study of Culture Enrich Our Understanding of Autism? A Cross-Cultural Exploration of Life on the Spectrum in Japan and the West . Journal of Cross-Cultural Psychology, 54(5), 610-634. SAGE Publications.
    Crossref OpenAlex OpenCitations
  10. John N. Constantino (2013). Social Responsiveness Scale . In Social Responsiveness Scale, (pp. 2919-2929). Springer New York.
    Crossref OpenAlex OpenCitations
  11. Uta Frith (2012). The 38th Sir Frederick Bartlett Lecture Why we need cognitive explanations of autism . Quarterly Journal of Experimental Psychology, 65(11), 2073-2092. SAGE Publications.
    Crossref OpenAlex OpenCitations
  12. Autism Research Centre. (2024). What the Spectrum 10K consultation taught us. https://www.autismresearchcentre.com/what-the-spectrum-10k-consultation-taught-us/
    Type: Other
    Crossref
  13. Samuele Cortese , Marco Solmi , Giorgia Michelini , Alessio Bellato , Christina Blanner , Andrea Canozzi et al. (2023). Candidate diagnostic biomarkers for neurodevelopmental disorders in children and adolescents: a systematic review . World Psychiatry, 22(1), 129-149. Wiley.
    Crossref OpenAlex OpenCitations
  14. Berend Verhoeff (2015). Fundamental challenges for autism research: the science–practice gap, demarcating autism and the unsuccessful search for the neurobiological basis of autism . Medicine, Health Care and Philosophy, 18(3), 443-447. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  15. (n.d.). Autistic Self Advocacy Network. (2022 February 14). Open letter to the Lancet Commission on the future of care and clinical research in autism. https://autisticadvocacy.org/2022/02/open-letter-to-the-lancet-commission-on-the-future-of-care-and-clinical-research-in-autism/
    Type: Other
    Crossref
  16. Michael Lombardo (2021). Prototyping as subtyping strategy for studying heterogeneity in autism . Autism Research, 14(10), 2224-2227. Wiley.
    Type: Article DOI: 10.1002/aur.2535 OpenAlex: https://openalex.org/W3165084545
    Crossref OpenAlex OpenCitations
  17. Marion Quirici (2015). Geniuses without Imagination . Journal of Literary & Cultural Disability Studies, 9(1), 71-88. Liverpool University Press.
    Crossref OpenAlex OpenCitations
  18. Andrea Blomkvist , David F. Marks (2023). Defining and ‘diagnosing’ aphantasia: Condition or individual difference? Cortex, 169, 220-234. Elsevier BV.
    Crossref OpenAlex OpenCitations
  19. Vasiliki Kentrou , Lucy A. Livingston , Rachel Grove , Rosa A. Hoekstra , Sander Begeer (2024). Perceived misdiagnosis of psychiatric conditions in autistic adults . eClinicalMedicine, 71, 102586. Elsevier BV.
    Crossref OpenAlex OpenCitations
  20. LEON EISENBERG (1956). THE AUTISTIC CHILD IN ADOLESCENCE . American Journal of Psychiatry, 112(8), 607-612. American Psychiatric Association Publishing.
    Crossref OpenAlex OpenCitations
  21. Brigitte Chamak , Beatrice Bonniau , Emmanuel Jaunay , David Cohen (2008). What Can We Learn about Autism from Autistic Persons? Psychotherapy and Psychosomatics, 77(5), 271-279. S. Karger AG.
    Crossref OpenAlex OpenCitations
  22. Michelle Cleary , Sancia West , Rachel Kornhaber , Catherine Hungerford (2023). Autism, Discrimination and Masking: Disrupting a Recipe for Trauma . Issues in Mental Health Nursing, 44(9), 799-808. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  23. Pat Walsh , Mayada Elsabbagh , Patrick Bolton , Ilina Singh (2011). In search of biomarkers for autism: scientific, social and ethical challenges . Nature Reviews Neuroscience, 12(10), 603-612. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrn3113 OpenAlex: https://openalex.org/W2087640603
    Crossref OpenAlex OpenCitations
  24. Mara Parellada , Álvaro Andreu-Bernabeu , Mónica Burdeus , Antonia San José Cáceres , Elena Urbiola , Linda L. Carpenter et al. (2023). In Search of Biomarkers to Guide Interventions in Autism Spectrum Disorder: A Systematic Review . American Journal of Psychiatry, 180(1), 23-40. American Psychiatric Association Publishing.
    Crossref OpenAlex OpenCitations
  25. Robert S. P. Jones , Jaci C. Huws , Gerhard Beck (2013). ‘I’m not the only person out there’: insider and outsider understandings of autism . International Journal of Developmental Disabilities, 59(2), 134-144. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  26. Ada J. S. Chan , Worrawat Engchuan , Miriam S. Reuter , Zhuozhi Wang , Bhooma Thiruvahindrapuram , Brett Trost et al. (2022). Genome-wide rare variant score associates with morphological subtypes of autism spectrum disorder . Nature Communications, 13(1), 6463-6463. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  27. So Hyun Kim (2020). Decomposing Heterogeneity in Autism Spectrum Disorder Through Neurosubtyping . Biological Psychiatry, 87(12), e37-e38. Elsevier BV.
    Crossref OpenAlex OpenCitations
  28. Boaz Keysar , Shuhong Lin , Dale J Barr (2003). Limits on theory of mind use in adults . Cognition, 89(1), 25-41. Elsevier BV.
    Crossref OpenAlex OpenCitations
  29. 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.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  30. K. S. Kendler (2009). An historical framework for psychiatric nosology . Psychological Medicine, 39(12), 1935-1941. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  31. Robert Chapman *Autistic author. Learn more… , Havi Carel (2022). Neurodiversity, epistemic injustice, and the good human life . Journal of Social Philosophy, 53(4), 614-631. Wiley.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  32. Kate O’Connor , Ian Kirk (2008). Brief Report: Atypical Social Cognition and Social Behaviours in Autism Spectrum Disorder: A Different Way of Processing Rather than an Impairment . Journal of Autism and Developmental Disorders, 38(10), 1989-1997. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  33. Yun‐Ju Chen , Eric Duku , Péter Szatmári , Mackenzie Salt , Isabel Smith , Annie Richard et al. (2024). Trajectories of adaptive functioning from early childhood to adolescence in autism: Identifying turning points and key correlates of chronogeneity . JCPP Advances, 4(2), e12212-e12212. Wiley.
    Crossref OpenAlex OpenCitations
  34. Laurent Mottron (2021). A radical change in our autism research strategy is needed: Back to prototypes . Autism Research, 14(10), 2213-2220. Wiley.
    Type: Article DOI: 10.1002/aur.2494 OpenAlex: https://openalex.org/W3164845480
    Crossref OpenAlex OpenCitations
  35. Berend Verhoeff (2012). What is this thing called autism? A critical analysis of the tenacious search for autism's essence . BioSocieties, 7(4), 410-432. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  36. Léo Kanner (1943). Autistic disturbances of affective contact . Nervous Child, 2(3), 217.
    Type: Article OpenAlex: https://openalex.org/W2255119171
    Crossref OpenAlex
  37. John N. Constantino (2021). Response to “A Radical Change in Our Autism Research Strategy is Needed: Back to Prototypes” by Mottron et al. (2021) . Autism Research, 14(10), 2221-2223. Wiley.
    Type: Article DOI: 10.1002/aur.2529 OpenAlex: https://openalex.org/W3164532338
    Crossref OpenAlex OpenCitations
  38. Berend Verhoeff (2013). Autism in flux: a history of the concept from Leo Kanner to DSM-5 . History of Psychiatry, 24(4), 442-458. SAGE Publications.
    Crossref OpenAlex OpenCitations
  39. Rosalind Cooper , Kate Cooper , Ailsa Russell , Laura G. E. Smith (2021). “I’m Proud to be a Little Bit Different”: The Effects of Autistic Individuals’ Perceptions of Autism and Autism Social Identity on Their Collective Self-esteem . Journal of Autism and Developmental Disorders, 51(2), 704-714. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  40. Berend Verhoeff (2015). Autism's anatomy: A dissection of the structure and development of a psychiatric concept . Data Archiving and Networked Services (DANS).
    Type: Article OpenAlex: https://openalex.org/W2580339358
    Crossref OpenAlex
  41. Heather Thomas , Tom Boellstorff (2017). Beyond the Spectrum: Rethinking Autism . Disability Studies Quarterly, 37(1). The Ohio State University Libraries.
    Crossref OpenAlex OpenCitations
  42. Morton Ann Gernsbacher , Jennifer L. Stevenson , Sebastian Dern (2017). Specificity, contexts, and reference groups matter when assessing autistic traits . PLOS ONE, 12(2), e0171931. Public Library of Science (PLoS).
    Crossref OpenAlex OpenCitations
  43. Juliette Rabot , Eya-Mist Rødgaard , Ridha Joober , Guillaume Dumas , Danilo Bzdok , Boris Bernhardt et al. (2023). Genesis, modelling and methodological remedies to autism heterogeneity . Neuroscience & Biobehavioral Reviews, 150, 105201. Elsevier BV.
    Crossref OpenAlex OpenCitations
  44. Laurent Mottron , David Gagnon (2023). Prototypical autism: New diagnostic criteria and asymmetrical bifurcation model . Acta Psychologica, 237, 103938. Elsevier BV.
    Crossref OpenAlex OpenCitations
  45. Rachael PS John , Fiona J Knott , Kate N Harvey (2018). Myths about autism: An exploratory study using focus groups . Autism, 22(7), 845-854. SAGE Publications.
    Crossref OpenAlex OpenCitations
  46. Michael C. W. English , Gilles E. Gignac , Troy A. W. Visser , Andrew Whitehouse , James T. Enns , Murray T. Maybery (2021). The Comprehensive Autistic Trait Inventory (CATI): development and validation of a new measure of autistic traits in the general population . Molecular Autism, 12(1), 37. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  47. Hannah Hobson , S. Petty (2021). Moving forwards not backwards: heterogeneity in autism spectrum disorders . Molecular Psychiatry, 26(12), 7100-7101. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  48. S. Wolff (1996). The first account of the syndrome Asperger described? European Child & Adolescent Psychiatry, 5(3), 119-132. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  49. Ania M. Fiksinski , Gil D. Hoftman , Jacob A. S. Vorstman , Carrie E. Bearden (2023). A genetics-first approach to understanding autism and schizophrenia spectrum disorders: the 22q11.2 deletion syndrome . Molecular Psychiatry, 28(1), 341-353. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  50. Charlotte Tye , Abigail K. Runicles , Andrew Whitehouse , Gail A. Alvares (2019). Characterizing the Interplay Between Autism Spectrum Disorder and Comorbid Medical Conditions: An Integrative Review . Frontiers in Psychiatry, 9, 438-438. Frontiers Media SA.
    Crossref OpenAlex OpenCitations
  51. Sue Fletcher‐Watson (2024). What’s in a name? The costs and benefits of a formal autism diagnosis . Autism, 28(2), 257-262. SAGE Publications.
    Crossref OpenAlex OpenCitations
  52. Ginny Russell , Will Mandy , Daisy Elliott , Rhianna White , Tom Pittwood , Tamsin Ford (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis . Molecular Autism, 10(1), 9. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  53. Aviya Litman , Natalie Sauerwald , LeeAnne Green Snyder , Jennifer H. Foss‐Feig , Christopher Y. Park , Yun Hao et al. (2025). Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs . Nature Genetics, 57(7), 1611-1619. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  54. Troy Vargason , Richard E. Frye , Deborah L. McGuinness , Juergen Hahn (2019). Clustering of co‐occurring conditions in autism spectrum disorder during early childhood: A retrospective analysis of medical claims data . Autism Research, 12(8), 1272-1285. Wiley.
    Type: Article DOI: 10.1002/aur.2128 OpenAlex: https://openalex.org/W2947642158
    Crossref OpenAlex OpenCitations
  55. Joaquin Fuentes , Amaia Hervás , Patricia Howlin , (ESCAP ASD Working Party) (2021). ESCAP practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment . European Child & Adolescent Psychiatry, 30(6), 961-984. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  56. Laura Fusar-Poli , Natascia Brondino , Pierluigi Politi , Eugenio Aguglia (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder . European Archives of Psychiatry and Clinical Neuroscience, 272(2), 187-198. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  57. Nicholas Silins (2021). The evil demon in the lab: skepticism, introspection, and introspection of introspection . Synthese, 198(10), 9763-9785. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  58. Michael Lombardo , Meng-Chuan Lai , Simon Baron-Cohen (2019). Big data approaches to decomposing heterogeneity across the autism spectrum . Molecular Psychiatry, 24(10), 1435-1450. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  59. Sami Timimi , Damian Milton *Autistic author. Learn more… , Virginia Bovell , Steven K. Kapp *Autistic author. Learn more… , Ginny Russell (2019). Deconstructing Diagnosis: Four Commentaries on a Diagnostic Tool to Assess Individuals for Autism Spectrum Disorders. Autonomy (Birm), 1(6), 26.
    Type: Article OpenAlex: https://openalex.org/W2958492418
    Crossref OpenAlex
  60. Jonathan Green (2022). Autism as emergent and transactional . Frontiers in Psychiatry, 13, 988755-988755. Frontiers Media SA.
    Crossref OpenAlex OpenCitations
  61. Charlotte Simmonds , G. E. Sukhareva (2020). The first account of the syndrome Asperger described? Part 2: the girls . European Child & Adolescent Psychiatry, 29(4), 549-564. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  62. Francesca Happé , Uta Frith (2021). Dimensional or Categorical Approaches to Autism? Both are Needed. A Reply to Nick Chown and Julia Leatherland . Journal of Autism and Developmental Disorders, 51(2), 752-753. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  63. Margaret Danielle Weiss , Peter T. Daniolos , Kevin Coughlin , Norah Mulvaney-Day , Benjamin Cook , Debra Rosenblum (2024). A Scoping Review of the Intersectionality of Autism and Intellectual and Developmental Disability with Social Inequity on Diagnosis and Treatment of Youth . Journal of Child and Adolescent Psychopharmacology, 34(7), 292-301. SAGE Publications.
    Crossref OpenAlex OpenCitations
  64. Catherine A. Ziats , Wesley G. Patterson , Michael Friez (2021). Syndromic Autism Revisited: Review of the Literature and Lessons Learned . Pediatric Neurology, 114, 21-25. Elsevier BV.
    Crossref OpenAlex OpenCitations
  65. Jake Pyne (2020). “Building a Person”: Legal and Clinical Personhood for Autistic and Trans Children in Ontario . Canadian Journal of Law and Society / Revue Canadienne Droit et Société, 35(2), 341-365. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  66. Veronica Mandelli , Ines Severino , Lisa Eyler , Karen Pierce , Eric Courchesne , Michael Lombardo (2024). A 3D approach to understanding heterogeneity in early developing autisms . Molecular Autism, 15(1), 41-41. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  67. Meng-Chuan Lai (2023). Mental health challenges faced by autistic people . Nature Human Behaviour, 7(10), 1620-1637. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  68. Katharine Sanderson (2021). High-profile autism genetics project paused amid backlash . Nature, 598(7879), 17-18. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  69. Itai Yanai , Martin J. Lercher (2024). It takes two to think . Nature Biotechnology, 42(1), 18-19. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  70. Sinclair J. (1993). Don’t mourn for us. Our Voice 1(3). https://www.autreat.com/dont_mourn.html
    Type: Other
    Crossref
  71. Kyle Sterrett , Elaine Clarke , Jane Nofer , Joseph Piven , Catherine Lord (2024). Toward a functional classification for autism in adulthood . Autism Research, 17(10), 2105-2119. Wiley.
    Type: Article DOI: 10.1002/aur.3201 OpenAlex: https://openalex.org/W4400829953
    Crossref OpenAlex OpenCitations
  72. Sukhareva G. E. Wolff S. (1996). The first account of the syndrome Asperger described? Translation of a paper entitled "Die schizoiden Psychopathien im Kindesalter" by Dr. G. E. Ssucharewa
    Type: Other
    Crossref