How Diagnostically Accurate are #Autism Portrayals? A Latent Space Item Response Modeling Approach

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Tien, I. S., Wolpe, S., Huang, Y., Sozeri, S., Lee, M., & Jeong, M. (2025). How Diagnostically Accurate are #Autism Portrayals? A Latent Space Item Response Modeling Approach. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-025-07164-5

Publication date: 3 Dec 2025 Added to AutiHub: 17 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Ingrid S. Tien *
  2. Samara Wolpe
  3. Yingshi Huang
  1. Sila Sozeri
  2. Maxwell Lee
  3. Minjeon Jeong

Abstract

PURPOSE: Increasing social media usage for information-seeking and increasing discussion of autism on social media platforms has been associated with increased awareness of autism. While online conversation about autistic experiences continue to grow, so does the prevalence of autism (Harrop et al., 2024). Therefore, there is a call for research examining the quantity and quality of non-clinically driven social media content. METHODS: Written, audio, and visual content from 597 TikToks and 596 Tweets were pulled and inductively coded for content on autism-related difficulties, disparities, source of content, and alignment with the current diagnostic criteria. RESULTS: Surprisingly, only 20.4% of content collected contained solely diagnostically accurate information, indicating a potentially poor alignment of diagnostic criteria and experiences expressed in social media. To understand how both diagnostically accurate and inaccurate difficulties are represented on this content, a novel latent space modeling methodology was used to generate a picture of the most frequently endorsed items. CONCLUSION: These items, mainly including non-diagnostic items, with the only diagnostic items being associated with social and communicative difficulties, indicate that the primary social media portrayal of autism is not currently aligned with our clinical definition of autism.

Bibliography cited by this reference

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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: 19 Sep 2026 01:01.

Cited references
47
With a DOI
44
Without a DOI, from raw bibliography text
3
5 / 47 (10.6%) cited references include at least one author identified as autistic.
References with data to complete
3 / 47 (6.4%)
References with detected author names
45 / 47 (95.7%)
Without detected author names
2
Without a structured title
3
Without a stable identifier
3
References with raw author names still to review
1
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
144
From DOI or external metadata
144
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
41 / 144 (28.5%) names are linked to an author already present in AutiHub. 103 / 144 (71.5%) names are not yet linked.
Names linked to a person identified as autistic
5 / 144 (3.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 5 / 41 (12.2%). Distinct people identified as autistic: 4 / 138 (2.9%).
  1. Philipp Mayring (2015). Qualitative Content Analysis: Theoretical Background and Procedures . In Approaches to qualitative research in mathematics education. Advances in Mathematics education (pp. 365-380). Springer Netherlands.
    Type: Book chapter DOI: 10.1007/978-94-017-9181-6_13 OpenAlex: https://openalex.org/W159321140
    Crossref OpenAlex OpenCitations
  2. Susan Abel , Tanya Machin , Charlotte Brownlow (2019). Support, socialise and advocate: An exploration of the stated purposes of Facebook autism groups . Research in Autism Spectrum Disorders, 61, 10-21. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2019.01.009 OpenAlex: https://openalex.org/W2914895765
    Crossref OpenAlex OpenCitations
  3. Alexandra Sturm , Sijia Huang , Megan Kuhfeld (2022). Advancing methodologies to improve RRB outcome measures in autism research: Evaluation of the RBS-R. Psychological Assessment, 34(1), 30-42. American Psychological Association (APA).
    Type: Article DOI: 10.1037/pas0001062 OpenAlex: https://openalex.org/W3195549051
    Crossref OpenAlex OpenCitations
  4. Leticia Bode , Emily K. Vraga (2015). In Related News, That Was Wrong: The Correction of Misinformation Through Related Stories Functionality in Social Media . Journal of Communication, 65(4), 619-638. Oxford University Press (OUP).
    Type: Article DOI: 10.1111/jcom.12166 OpenAlex: https://openalex.org/W1613353461
    Crossref OpenAlex OpenCitations
  5. Shameem Ahmed , Md. Forhad Hossain , Kurt Price , Cody Pranger , Md. Monsur Hossain , Moushumi Sharmin (2019). A Tale of the Social-Side of ASD . 2019 IEEE 43rd Annual Computer Software and Applications Conference (COMPSAC), 644-652. IEEE.
    Type: Other DOI: 10.1109/compsac.2019.00098 OpenAlex: https://openalex.org/W2960092255
    Crossref OpenAlex OpenCitations
  6. Jennifer C. Sarrett (2016). Biocertification and Neurodiversity: the Role and Implications of Self-Diagnosis in Autistic Communities . Neuroethics, 9(1), 23-36. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s12152-016-9247-x OpenAlex: https://openalex.org/W2252287480
    Crossref OpenAlex OpenCitations
  7. Adham Beykikhoshk , Ognjen Arandjelović , Dinh Phung , Svetha Venkatesh , Terry Caelli (2015). Using Twitter to learn about the autism community . Social Network Analysis and Mining, 5(1), 22. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s13278-015-0261-5 OpenAlex: https://openalex.org/W1822255859
    Crossref OpenAlex OpenCitations
  8. Hans Asperger (1944). Die „Autistischen Psychopathen” im Kindesalter . Archiv für Psychiatrie und Nervenkrankheiten, 117(1), 76-136. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf01837709 OpenAlex: https://openalex.org/W1965210252
    Crossref OpenAlex OpenCitations
  9. Kinnon Ross MacKinnon , Hannah Kia , Ashley Lacombe-Duncan (2021). Examining TikTok’s Potential for Community-Engaged Digital Knowledge Mobilization With Equity-Seeking Groups . Journal of Medical Internet Research, 23(12), e30315. JMIR Publications Inc..
    Type: Article DOI: 10.2196/30315 OpenAlex: https://openalex.org/W3210688059
    Crossref OpenAlex OpenCitations
  10. Ingrid S. Tien * , Amanda R. Johnson , Junok Kim , Jeffrey J. Wood (2025). Examining Diagnostic Trends and Gender Differences in the ADOS-II . Journal of Autism and Developmental Disorders, 55(1), 1-9. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-023-06191-4 OpenAlex: https://openalex.org/W4389482626
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  11. Kyung-Sun Kim , Sei-Ching Joanna Sin , Tien-I Tsai (2014). Individual Differences in Social Media Use for Information Seeking . The Journal of Academic Librarianship, 40(2), 171-178. Elsevier BV.
    Type: Article DOI: 10.1016/j.acalib.2014.03.001 OpenAlex: https://openalex.org/W2011737919
    Crossref OpenAlex OpenCitations
  12. Schwab Bakombo , Paulette Ewalefo , Anne T. M. Konkle (2023). The Influence of Social Media on the Perception of Autism Spectrum Disorders: Content Analysis of Public Discourse on YouTube Videos . International Journal of Environmental Research and Public Health, 20(4), 3246. MDPI AG.
    Type: Article DOI: 10.3390/ijerph20043246 OpenAlex: https://openalex.org/W4320493535
    Crossref OpenAlex OpenCitations
  14. Jacob Cohen (1960). A Coefficient of Agreement for Nominal Scales . Educational and Psychological Measurement, 20(1), 37-46. SAGE Publications.
    Type: Article DOI: 10.1177/001316446002000104 OpenAlex: https://openalex.org/W2053154970
    Crossref OpenAlex OpenCitations
  15. Mousumi Banerjee , Michelle Capozzoli , Laura McSweeney , Debajyoti Sinha (1999). Beyond kappa: A review of interrater agreement measures . Canadian Journal of Statistics, 27(1), 3-23. Wiley.
    Type: Article DOI: 10.2307/3315487 OpenAlex: https://openalex.org/W2076898331
    Crossref OpenAlex OpenCitations
  16. Kimberly Maich , Christina Belcher , Adam W. J. Davies , Jill Rose , Tricia van Rhijn (2022). Pathology persists and stigma stays: representations of (autistic) Stephen Greaves in the post-apocalyptic world . Disability & Society, 37(6), 955-971. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2020.1862641 OpenAlex: https://openalex.org/W3114541252
    Crossref OpenAlex OpenCitations
  17. M. Brosnan , Emma Chapman , Chris Ashwin (2014). Adolescents with Autism Spectrum Disorder Show a Circumspect Reasoning Bias Rather than ‘Jumping-to-Conclusions’ . Journal of Autism and Developmental Disorders, 44(3), 513-520. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-013-1897-5 OpenAlex: https://openalex.org/W2076740686
    Crossref OpenAlex OpenCitations
  18. Ciera E Kirkpatrick , LaRissa L Lawrie (2024). TikTok as a Source of Health Information and Misinformation for Young Women in the United States: Survey Study . JMIR Infodemiology, 4, e54663. JMIR Publications Inc..
    Type: Article DOI: 10.2196/54663 OpenAlex: https://openalex.org/W4395099370
    Crossref OpenAlex OpenCitations
  19. Monica L. Bellon-Harn , Jianyuan Ni , Vinaya Manchaiah (2020). Twitter usage about autism spectrum disorder . Autism, 24(7), 1805-1816. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320923173 OpenAlex: https://openalex.org/W3033732003
    Crossref OpenAlex OpenCitations
  20. Robert C. MacCallum , Shaobo Zhang , Kristopher J. Preacher , Derek D. Rucker (2002). On the practice of dichotomization of quantitative variables. Psychological Methods, 7(1), 19-40. American Psychological Association (APA).
    Type: Article DOI: 10.1037/1082-989x.7.1.19 OpenAlex: https://openalex.org/W2108096958
    Crossref OpenAlex OpenCitations
  22. Pamela Heaton , Gregory L. Wallace (2004). Annotation: The savant syndrome . Journal of Child Psychology and Psychiatry, 45(5), 899-911. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.2004.t01-1-00284.x OpenAlex: https://openalex.org/W2153219491
    Crossref OpenAlex OpenCitations
  23. Jinwen Luo , Ludovica De Carolis , Biao Zeng , Minjeong Jeon (2023). Bayesian Estimation of Latent Space Item Response Models with JAGS, Stan, and NIMBLE in R . Psych, 5(2), 396-415. MDPI AG.
    Type: Article DOI: 10.3390/psych5020027 OpenAlex: https://openalex.org/W4376278158
    Crossref OpenAlex OpenCitations
  24. Douwe Draaisma (2009). Stereotypes of autism . Philosophical Transactions of the Royal Society B: Biological Sciences, 364(1522), 1475-1480. The Royal Society.
    Type: Article DOI: 10.1098/rstb.2008.0324 OpenAlex: https://openalex.org/W2159723829
    Crossref OpenAlex OpenCitations
  25. Darold A. Treffert (2009). The savant syndrome: an extraordinary condition. A synopsis: past, present, future . Philosophical Transactions of the Royal Society B: Biological Sciences, 364(1522), 1351-1357. The Royal Society.
    Type: Article DOI: 10.1098/rstb.2008.0326 OpenAlex: https://openalex.org/W2172227757
    Crossref OpenAlex OpenCitations
  26. Caroline Kelly , Shivani Sharma , Anna-Theresa Jieman , Shulamit Ramon (2024). Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualitative research . Disability & Society, 39(3), 663-695. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2022.2076582 OpenAlex: https://openalex.org/W4280616533
    Crossref OpenAlex OpenCitations
  27. Zachary Gallin , Ana M. Kolevzon , Abraham Reichenberg , Sidney H. Hankerson , Alexander Kolevzon , Alexander Kolevzon et al. (2025). Racial Differences in the Prevalence of Autism Spectrum Disorder: A Systematic Review . Journal of Autism and Developmental Disorders, 55(9), 3364-3377. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-024-06403-5 OpenAlex: https://openalex.org/W4400127298
    Crossref OpenAlex OpenCitations
  28. Caroline Treweek , Chantelle Wood , Jilly Martin , Megan Freeth (2019). Autistic people’s perspectives on stereotypes: An interpretative phenomenological analysis . Autism, 23(3), 759-769. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318778286 OpenAlex: https://openalex.org/W2802267269
    Crossref OpenAlex OpenCitations
  29. Amit Saha , Nitin Agarwal (2016). Modeling social support in autism community on social media . Network Modeling Analysis in Health Informatics and Bioinformatics, 5(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s13721-016-0115-8 OpenAlex: https://openalex.org/W2279111758
    Crossref OpenAlex OpenCitations
  30. Frances J. Griffith , Catherine H. Stein (2021). Behind the Hashtag: Online Disclosure of Mental Illness and Community Response on Tumblr . American Journal of Community Psychology, 67(3-4), 419-432. Wiley.
    Type: Article DOI: 10.1002/ajcp.12483 OpenAlex: https://openalex.org/W3115077076
    Crossref OpenAlex OpenCitations
  31. Minjeong Jeon , Ick Hoon Jin , Michael Schweinberger , Samuel Baugh (2021). Mapping Unobserved Item–Respondent Interactions: A Latent Space Item Response Model with Interaction Map . Psychometrika, 86(2), 378-403. Cambridge University Press (CUP).
    Type: Article DOI: 10.1007/s11336-021-09762-5 OpenAlex: https://openalex.org/W3097088492
    Crossref OpenAlex OpenCitations
  32. Laura Foran Lewis (2016). Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults . Archives of Psychiatric Nursing, 30(5), 575-580. Elsevier BV.
    Type: Article DOI: 10.1016/j.apnu.2016.03.009 OpenAlex: https://openalex.org/W2326293265
    Crossref OpenAlex OpenCitations
  33. Cristin M. Hall , Erica D. Culler , Anne Frank-Webb (2016). Online Dissemination of Resources and Services for Parents of Children with Autism Spectrum Disorders (ASDs): a Systematic Review of Evidence . Review Journal of Autism and Developmental Disorders, 3(4), 273-285. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-016-0083-z OpenAlex: https://openalex.org/W2465185662
    Crossref OpenAlex OpenCitations
  34. John D. Haltigan , Tamara M. Pringsheim , Gayathiri Rajkumar (2023). Social media as an incubator of personality and behavioral psychopathology: Symptom and disorder authenticity or psychosomatic social contagion? Comprehensive Psychiatry, 121, 152362. Elsevier BV.
    Type: Article DOI: 10.1016/j.comppsych.2022.152362 OpenAlex: https://openalex.org/W4312204614
    Crossref OpenAlex OpenCitations
  35. Clare Harrop , Brianne Tomaszewski , Orla Putnam , Claire Klein , Elena Lamarche , Laura Klinger (2024). Are the diagnostic rates of autistic females increasing? An examination of state‐wide trends . Journal of Child Psychology and Psychiatry, 65(7), 973-983. Wiley.
    Type: Article DOI: 10.1111/jcpp.13939 OpenAlex: https://openalex.org/W4390603815
    Crossref OpenAlex OpenCitations
  36. Chantelle Wood , Megan Freeth (2016). Students’ Stereotypes of Autism . Journal of Educational Issues, 2(2), 131. Macrothink Institute, Inc..
    Type: Article DOI: 10.5296/jei.v2i2.9975 OpenAlex: https://openalex.org/W2532162578
    Crossref OpenAlex OpenCitations
  37. Laura Hull , Will Mandy (2017). Protective Effect or Missed Diagnosis? Females with Autism Spectrum Disorder . Future Neurology, 12(3), 159-169. Informa UK Limited.
    Type: Article DOI: 10.2217/fnl-2017-0006 OpenAlex: https://openalex.org/W2745090619
    Crossref OpenAlex OpenCitations
  38. (n.d.). Internet Research Ethical Guidelines 3. 0 Association of Internet Researchers.
    Type: Other
    Crossref
  39. Aysha Jawed , Heather Graham , Jennifer Smith (2023). Digital trends in autism: a scoping review exploring coverage of autism across YouTube, Twitter, and Facebook . Frontiers in Digital Health, 5, 1222187. Frontiers Media SA.
    Type: Article DOI: 10.3389/fdgth.2023.1222187 OpenAlex: https://openalex.org/W4387119160
    Crossref OpenAlex OpenCitations
  40. Ingjerd Skafle , Elia Gabarron , Anders Nordahl-Hansen (2024). Social media shaping autism perception and identity . Autism, 28(10), 2489-2502. SAGE Publications.
    Type: Article DOI: 10.1177/13623613241230454 OpenAlex: https://openalex.org/W4392108253
    Crossref OpenAlex OpenCitations
  41. T.A.M. McDonald (2020). Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum . Autism in Adulthood, 2(1), 13-23. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0069 OpenAlex: https://openalex.org/W3006983109
    Crossref OpenAlex OpenCitations
  43. Mirko Uljarevic , Booil Jo , Thomas W Frazier , Lawrence Scahill , Eric A. Youngstrom , Antonio Y. Hardan (2021). Using the big data approach to clarify the structure of restricted and repetitive behaviors across the most commonly used autism spectrum disorder measures . Molecular Autism, 12(1), 39. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-021-00419-9 OpenAlex: https://openalex.org/W3164130519
    Crossref OpenAlex OpenCitations
  44. Lister, T. J. P. (2021). What’s in a label? An exploration of how people acquire the label autistic in adulthood and the consequences of doing so (dissertation). What’s in a label? an exploration of how people acquire the label autistic in adulthood and the consequences of doing so. University of Exeter.
    Type: Other
    Crossref
  46. Gayle L. Overton , Ferran Marsà-Sambola , Rachael Martin , Penny Cavenagh (2024). Understanding the Self-identification of Autism in Adults: a Scoping Review . Review Journal of Autism and Developmental Disorders, 11(4), 682-702. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-023-00361-x OpenAlex: https://openalex.org/W4323360123
    Crossref OpenAlex OpenCitations
  47. W Revelle (2015). Revelle, W., & Revelle, M. W. (2015). Package ‘psych.’ The comprehensive R archive network, 337(338), 161–165. The Comprehensive R Archive Network, 337(338), 161.
    Type: Other
    Crossref