AutisTikTok: Analyzing top autism hashtags for creator, content, and persistence over time

This publication is included in the Autistic Autism Scholarship Project. The publication reports one autistic author, without identifying them by name.

Karpinsky, M., McFayden, T. C., Waycaster, A., Neal, A., & Harrop, C. (2025). AutisTikTok: Analyzing top autism hashtags for creator, content, and persistence over time. Research in Autism, 128, Article 202720. https://doi.org/10.1016/j.reia.2025.202720

Publication date: 1 Oct 2025 Added to AutiHub: 15 Oct 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Autistic authors reported by the publication
1

Abstract

Purpose Despite the rising popularity of the social media platform TikTok, only a handful of studies have examined the content of autism-related TikTok videos Methods We extracted and coded the top 40 videos from the five most popular autism hashtags at two time points (N = 400 videos; n = 275 after removal of duplicates). Variables of interest included content and creator characteristics, language use, and understandability/actionability Results Videos received up to 5.26B views and 9.5 M likes. Most commonly, creators were self-advocates (61.8 %) and used she/they pronouns (26.6 %). Content was most likely to use identity-first (80.8 %) and nonableist language (70.6 %) about lived experiences (75.7 %) with mixed positive and negative valence (84 %), although varied by creators. TikTok videos were understandable to lay audiences but did not contain actionable information Conclusion Our results suggest the media portrayal of autism on TikTok differs from the medicalized field of autism information and may serve important roles in psychoeducation and belongingness for neurodivergent communities.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

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: 28 Oct 2026 01:01.

Cited references
63
With a DOI
56
Without a DOI, from raw bibliography text
7
15 / 63 (23.8%) cited references include at least one author identified as autistic.
References with data to complete
3 / 63 (4.8%)
References with detected author names
60 / 63 (95.2%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
7
References with raw author names still to review
3
References with external metadata lookup issues
1
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
334
From DOI or external metadata
334
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
124 / 334 (37.1%) names are linked to an author already present in AutiHub. 210 / 334 (62.9%) names are not yet linked.
Names linked to a person identified as autistic
25 / 334 (7.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 25 / 124 (20.2%). Distinct people identified as autistic: 22 / 286 (7.7%).
  1. Micah O. Mazurek (2013). Social media use among adults with autism spectrum disorders . Computers in Human Behavior, 29(4), 1709-1714. Elsevier BV.
    Crossref OpenAlex
  2. Kelly A. Shaw , Susan Williams , Mary E. Patrick , Miguel Valencia-Prado , Maureen S. Durkin , Ellen M. Howerton et al. (2025). Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years — Autism and Developmental Disabilities Monitoring Network, 16 Sites, United States, 2022 . MMWR. Surveillance Summaries, 74(2), 1-22. Centers for Disease Control MMWR Office.
    Crossref OpenAlex OpenCitations
  3. Sarah J. Shoemaker , Michael S. Wolf , Cindy Brach (2014). Development of the patient education materials assessment tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information . Patient Education and Counseling, 96(3), 395. Elsevier BV.
    Crossref OpenAlex
  4. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Crossref OpenAlex
  5. Hanna Sofie Berg Egge , Elia Gabarrón (2024). TikTok and YouTube Shorts by Autistic Individuals for Increasing Autism Awareness . Studies in Health Technology and Informatics, 316, 1891. IOS Press.
    Crossref OpenAlex OpenCitations
  6. Joyce Davidson (2008). Autistic culture online: virtual communication and cultural expression on the spectrum . Social & Cultural Geography, 9(7), 791-806. Informa UK Limited.
    Crossref OpenAlex
  7. Diego Aragon-Guevara , Grace Castle , Elisabeth Sheridan , Giacomo Vivanti (2025). The reach and accuracy of information on autism on TikTok . Journal of Autism and Developmental Disorders, 55(6), 1953-1958. Springer Science and Business Media LLC.
    Crossref OpenAlex
  8. 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
  9. Sitaram Asur , Bernardo A. Huberman , Gabor Szabo , Chunyan Wang (2021). Trends in social media: persistence and decay . Proceedings of the International AAAI Conference on Web and Social Media, 5(1), 434. Association for the Advancement of Artificial Intelligence (AAAI).
    Crossref OpenAlex
  10. Auxier, B., & Anderson, M. (2021). Social Media Use in 2021. Pew Research Center. 〈 https://documentcloud.adobe.com/spodintegration/index.html?locale=en-us〉 .
    Type: Other
    Crossref
  11. Meng-Chuan Lai , S. Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013-1027. Elsevier BV.
    Crossref OpenAlex
  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.
    Crossref OpenAlex
  13. Gillian Fergie , Shona Hilton , Kate Hunt (2016). Young adults’ experiences of seeking online information about diabetes and mental health in the age of social media . Health Expectations, 19(6), 1324. Wiley.
    Crossref OpenAlex
  14. Erik von Elm , Doug Altman , Matthias Egger , Stuart J Pocock , Peter C Gøtzsche , Jan P Vandenbroucke (2007). The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies . The Lancet, 370(9596), 1453. Elsevier BV.
    Crossref OpenAlex
  15. Arnold, L. , Milton, D. , Beardon, L. , Nicholas Chown *Autistic author. Learn more… (2021). Encyclopedia of Autism Spectrum Disorders . Springer International Publishing.
    OpenAlex
  16. K. Boshoff , D. Gibbs , R. L. Phillips , L. Wiles , L. Porter (2018). Parents’ voices: “Our process of advocating for our child with autism.” a meta-synthesis of parents’ perspectives . Child Care Health and Development, 44(1), 147. Wiley.
    Crossref OpenAlex
  17. Laura Cole , Yasmin Kharwa , Nomfundo Khumalo , Jennifer S. Reinke , Saira B. S. Karrim (2017). Caregivers of School-aged Children with Autism: Social Media as a Source of Support . Journal of Child and Family Studies, 26(12), 3464-3475. Springer Science and Business Media LLC.
    Crossref OpenAlex
  18. Deborah M. Ward , Karen E. Dill-Shackleford , Micah O. Mazurek (2018). Social Media Use and Happiness in Adults with Autism Spectrum Disorder . Cyberpsychology, Behavior, and Social Networking, 21(3), 205-209. SAGE Publications.
    Crossref OpenAlex
  19. Ted Brown , Faith Kuzmiak , Aakanksha Singh , Varun Monga , Theodore Bell , Jessica Nolan et al. (2024). A Cross-Sectional analysis of TikTok autism spectrum disorder content quality . Emerging Trends in Drugs Addictions and Health, 4, 100150. Elsevier BV.
    Crossref OpenAlex
  20. Michelle O’Reilly , Nisha Dogra , Jason Hughes , Paul Reilly , Riya E. George , Natasha Whiteman (2019). Potential of social media in promoting mental health in adolescents . Health Promotion International, 34(5), 981. Oxford University Press (OUP).
    Crossref OpenAlex
  21. Riley Buijsman , Sander Begeer , Anke Scheeren (2023). ‘Autistic person’ or ‘person with autism’? Person-first language preference in Dutch adults with autism and parents . Autism, 27(3), 788-795. SAGE Publications.
    Crossref OpenAlex
  22. Dori Zener (2019). Journey to diagnosis for women with autism . Advances in Autism, 5(1), 2-13. Emerald.
    Crossref OpenAlex
  23. Simon M. Bury , Rachel Jellett , Alexandra Haschek , Michael Wenzel , Darren Hedley , Jennifer R. Spoor (2023). Understanding language preference: Autism knowledge, experience of stigma and autism identity . Autism, 27(6), 1588-1600. SAGE Publications.
    Crossref OpenAlex
  24. Laurel B. Watson (2019). Gender identity and expression in LGBTQ+ communities: implications for the practice of psychology . Psychology of Women Quarterly, 43(3), 298. SAGE Publications.
    Crossref OpenAlex
  25. Elaine B. Clarke , James B. McCauley , Amy Lutz , Marina Gotelli , Stephen J. Sheinkopf , Catherine Lord (2024). Understanding profound autism: implications for stigma and supports . Front Psychiatry, 22(15), 1287096. Frontiers Media SA.
    Crossref OpenAlex
  26. Yuxi Wang , Martin McKee , Aleksandra Torbica , David Stuckler (2019). Systematic literature review on the spread of Health-related misinformation on social media . Social Science Medicine, 240, 112552. Elsevier BV.
    Crossref OpenAlex
  27. Jean M. Twenge , Gabrielle N. Martin (2020). Gender differences in associations between digital media use and psychological well-being: evidence from three large datasets . Journal of Adolescence, 79(1), 91. Wiley.
    Crossref OpenAlex
  28. Blythe Corbett , Rachael A Muscatello , Mark E Klemencic , Millicent West , Ahra Kim , John F. Strang (2023). Greater gender diversity among autistic children by self-report and parent-report . Autism, 27(1), 158. SAGE Publications.
    Crossref OpenAlex
  29. Giorgia Sala , Laura Pecora , Merrilyn Hooley , Mark A Stokes (2020). As diverse as the spectrum itself: trends in sexuality, gender and autism . Current Developmental Disorders Reports, 7(2), 59. Springer Science and Business Media LLC.
    Crossref OpenAlex
  30. Anila M. D'Mello , Isabelle R. Frosch , Cindy E. Li , Annie L. Cardinaux , John D.E. Gabrieli (2022). Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline . Autism Research, 15(10), 1929-1940. Wiley.
    Type: Article DOI: 10.1002/aur.2795 OpenAlex: https://openalex.org/W4292601991
    Crossref OpenAlex
  31. Ailsa Russell , Beth Pearson , Una Masic (2021). A longitudinal study of features associated with autism spectrum in clinic referred, gender diverse adolescents accessing puberty suppression treatment . Journal of Autism and Developmental Disorders, 51(6), 2068. Springer Science and Business Media LLC.
    Crossref OpenAlex
  32. Christie Welch , Deb Cameron , Margaret Fitch , Helene Polatajko (2022). From “since” to “if”: using blogs to explore an insider-informed framing of autism . Disability & Society, 37(4), 638-661. Informa UK Limited.
    Crossref OpenAlex
  33. Daniel Gilmore , Deondray Radford , Meghan K. Haas , Morgan Shields , Lauren Bishop , Brittany N. Hand (2024). Building community and identity online: a content analysis of highly viewed #autism TikTok videos . Autism in Adulthood, 6(1), 95-105. SAGE Publications.
    Crossref OpenAlex
  34. Ginny Russell , Sal Stapley , Tamsin Newlove‐Delgado , Andrew Salmon , Rhianna White , Fiona Warren et al. (2022). Time trends in autism diagnosis over 20 years: a UK population‐based cohort study . Journal of Child Psychology and Psychiatry, 63(6), 674-682. Wiley.
    Crossref OpenAlex
  35. Michelle M. Hughes , Kelly A. Shaw , Monica DiRienzo , Maureen S. Durkin , Amy Esler , Jennifer Hall-Lande et al. (2023). The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016 . Public Health Reports®, 138(6), 971-980. SAGE Publications.
    Crossref OpenAlex
  36. Paraskevi Triantafyllopoulou , Charlotte Clark-Hughes , Peter E. Langdon (2022). Social Media and Cyber-Bullying in Autistic Adults . Journal of Autism and Developmental Disorders, 52(11), 4966-4974. Springer Science and Business Media LLC.
    Crossref OpenAlex
  37. Jargon, J. (2022). TikTok Brain Explained: Why Some Kids Seem Hooked on Social Video Feeds. Wall Street Journal. 〈 https://www.wsj.com/articles/tiktok-brain-explained-why-some-kids-seem-hooked-on-social-video-feeds-11648866192〉 .
    Type: Other
    Crossref
  38. Michelle YoungJin Kim , Junghwan Kim , Bryan Woosung Kim , Kristen Marie Johnson , Jee-In Kim (2022). ASDCLAIMS: twitter dataset of claims on autism spectrum disorder . IEEE International Conference on Big Data (Big Data), 2022, 4385. IEEE.
    Crossref OpenAlex
  39. Matthew J. Maenner , Zachary Warren , Ashley Robinson Williams , Esther Amoakohene , Amanda V. Bakian , Deborah A. Bilder et al. (2023). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020 . MMWR. Surveillance Summaries, 72(2), 1-14. Centers for Disease Control MMWR Office.
    Crossref OpenAlex
  40. Marry L. McHugh (2012). Interrater reliability: the kappa statistic . Biochema medica, 22(3), 276. Croatian Society for Medical Biochemistry and Laboratory Medicine.
    Crossref OpenAlex
  41. Mantas (2024). Digital health and informatics innovations for sustainable health care systems .
    Type: Other
    Crossref
  42. Victoria McDermott (2022). “Tell me something you Didn’t know was Neurodivergence-Related until recently. I’ll Start”: Tiktok as a public sphere for destigmatizing neurodivergence . In Advances in Higher Education and Professional Development (pp. 127). IGI Global.
    Crossref OpenAlex
  43. Amanda Taboas , Karla Doepke , Corinne Zimmerman (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders . Autism, 27(2), 565-570. SAGE Publications.
    Crossref OpenAlex
  44. Nordahl-Hansen (2021). Movie and TV depictions of autism spectrum disorder .
    Type: Other
    Crossref
  45. Perrin, A. (2015). Social Media Useage: 2005—2015. Rep., Pew Research Center, Washington, DC. 〈 https://www.pewresearch.org/internet/2015/10/08/social-networking-usage-2005-2015/〉 .
    Type: Other
    Crossref
  46. Ellen Simpson , Samantha Dalal , Bryan Semaan (2023). Hey, can you add Captions?”: the critical infrastructuring practices of neurodiverse people on TikTok . Proceedings of the ACM on HumanComputer Interaction, 7(CSCW1), 1. Association for Computing Machinery (ACM).
    Type: Article DOI: 10.1145/3579490 OpenAlex: https://openalex.org/W4366004253
    Crossref OpenAlex
  47. Ailsa Russell (2024). Who, when, where, and why: a systematic review of “late diagnosis” in autism . Autism Research.
    Type: Other
    Crossref
  48. Giacomo Vivanti (2024). Autism early intervention – progress, steps backward, and the reconciliation of conflicting narratives . Current Psychiatry Reports, 26(12), 753. Springer Science and Business Media LLC.
    Crossref OpenAlex
  49. Tyler C. McFayden , John F. Strang , Bittner, Sophie , Liles, Kimberly , McAllister, Margaret , Russell, Alison S. et al. (2024). Who, when, where, and why: A systematic review of “late diagnosis” in autism . Carolina Digital Repository (University of North Carolina at Chapel Hill). Wiley.
    OpenAlex
  50. Zheluk (2024). Pre-print. TikTok, autism and . Australian National Disability Service in 2024.
    Type: Other
    Crossref