Representativeness of autistic samples in studies recruiting through social media

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Rødgaard, E. M., Jensen, K., Miskowiak, K. W., & Mottron, L. (2022). Representativeness of autistic samples in studies recruiting through social media. Autism Research, 15(8), 1447-1456. https://doi.org/10.1002/aur.2777

Publication date: 9 Jul 2022 Added to AutiHub: 15 Sep 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)

Abstract

Abstract Survey‐based research with recruitment through online channels is a convenient way to obtain large samples and has recently been increasingly used in autism research. However, sampling from online channels may be associated with a high risk of sampling bias causing findings not to be generalizable to the autism population. Here we examined autism studies that have sampled on social media for markers of sampling bias. Most samples showed one or more indicators of sampling bias, in the form of reversed sex ratio, higher employment rates, higher education level, lower fraction of individuals with intellectual disability, and later age of diagnosis than would be expected when comparing with for example population study results from published research. Findings from many of the included studies are therefore difficult to generalize to the broader autism population. Suggestions for how research strategies may be adapted to address some of the problems are discussed. Lay Summary Online surveys offer a convenient way to recruit large numbers of participants for autism research. However, the resulting samples may not fully reflect the autism population. Here we investigated the samples of 36 autism studies that recruited participants online and found that the demographic composition tended to deviate from what has been reported about the autism population in previous research. The results may thus not be generalizable to autism in general.

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: 15 Sep 2026 07:45.

Cited references
64
With a DOI
61
Without a DOI, from raw bibliography text
2
12 / 64 (18.8%) cited references include at least one author identified as autistic.
References with data to complete
2 / 64 (3.1%)
References with detected author names
62 / 64 (96.9%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
2
References with raw author names still to review
2
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
359
From DOI or external metadata
359
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
187 / 359 (52.1%) names are linked to an author already present in AutiHub. 172 / 359 (47.9%) names are not yet linked.
Names linked to a person identified as autistic
21 / 359 (5.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 21 / 187 (11.2%). Distinct people identified as autistic: 20 / 256 (7.8%).
  1. Sarah R. Crissey (2009). Educational Attainment in the United States: 2007.
    Type: Article OpenAlex: https://openalex.org/W86959386
    OpenAlex
  2. Nicole Aerny‐Perreten , Ma. Felicitas Domínguez‐Berjón , María D. Esteban‐Vasallo , Carmen García‐Riolobos (2015). Participation and factors associated with late or non‐response to an online survey in primary care . Journal of Evaluation in Clinical Practice, 21(4), 688-693. Wiley.
    Crossref OpenAlex OpenCitations
  3. Jennifer Murphy , Freya Prentice , Reubs Walsh , Caroline Catmur , Geoffrey Bird (2020). Autism and transgender identity: Implications for depression and anxiety . Research in Autism Spectrum Disorders, 69, 101466. Elsevier BV.
    Crossref OpenAlex OpenCitations
  4. Chittaranjan Andrade (2020). The Limitations of Online Surveys . Indian Journal of Psychological Medicine, 42(6), 575-576. SAGE Publications.
    Crossref OpenAlex OpenCitations
  5. 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.
    Type: Article DOI: 10.1002/aur.2162 OpenAlex: https://openalex.org/W2949176131
    Crossref OpenAlex OpenCitations
  6. Selma Idring , Michael Lundberg , Harald Sturm , Christina Dalman , Clara Gumpert , Dheeraj Rai et al. (2015). Changes in Prevalence of Autism Spectrum Disorders in 2001–2011: Findings from the Stockholm Youth Cohort . Journal of Autism and Developmental Disorders, 45(6), 1766-1773. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  7. Samuel R. C. Arnold , Kitty-Rose Foley , Ye In (Jane) Hwang , Amanda Richdale , Mirko Uljarević , Lauren P. Lawson et al. (2019). Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA) . BMJ Open, 9(12), e030798. BMJ.
    Crossref OpenAlex OpenCitations
  8. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Lauren P. Lawson , Amanda Richdale , Julian Trollor (2021). Factors associated with age at autism diagnosis in a community sample of Australian adults . Autism Research, 14(12), 2677-2687. Wiley.
    Type: Article DOI: 10.1002/aur.2610 OpenAlex: https://openalex.org/W3199221538
    Crossref OpenAlex OpenCitations
  9. Patricia Howlin , Philippa Moss , Sarah Savage , Michael Rutter (2013). Social Outcomes in Mid- to Later Adulthood Among Individuals Diagnosed With Autism and Average Nonverbal IQ as Children . Journal of the American Academy of Child & Adolescent Psychiatry, 52(6), 572-581.e1. Elsevier BV.
    Crossref OpenAlex OpenCitations
  10. Fabiola Baltar , Ignasi Brunet (2012). Social research 2.0: virtual snowball sampling method using Facebook . Internet Research, 22(1), 57-74. Emerald.
    Crossref OpenAlex OpenCitations
  11. Linda C. Eaves , Helena H. Ho (2008). Young Adult Outcome of Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 38(4), 739-747. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  12. Hannah Belcher *Autistic author. Learn more… , Sharon Morein-Zamir , William Mandy , Ruth M. Ford (2022). Camouflaging Intent, First Impressions, and Age of ASC Diagnosis in Autistic Men and Women . Journal of Autism and Developmental Disorders, 52(8), 3413-3426. Springer Science and Business Media LLC.
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  13. Robert Magnani , Keith Sabin , Tobi Saidel , Douglas Heckathorn (2005). Review of sampling hard-to-reach and hidden populations for HIV surveillance . AIDS, 19(Supplement 2), S67-S72. Ovid Technologies (Wolters Kluwer Health).
    Crossref OpenAlex OpenCitations
  14. Ginny Russell , William 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
  15. Joel R. Evans , Anil Mathur (2005). The value of online surveys . Internet Research, 15(2), 195-219. Emerald.
    Crossref OpenAlex OpenCitations
  16. Maya Bowri , Laura Hull , Carrie Allison , Paula Smith , Simon Baron-Cohen , Meng-Chuan Lai et al. (2021). Demographic and psychological predictors of alcohol use and misuse in autistic adults . Autism, 25(5), 1469-1480. SAGE Publications.
    Crossref OpenAlex OpenCitations
  17. Julie Taylor , Marsha Mailick Seltzer (2011). Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood . Journal of Autism and Developmental Disorders, 41(5), 566-574. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  18. Louise Camm-Crosbie , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality . Autism, 23(6), 1431-1441. SAGE Publications.
    Crossref OpenAlex OpenCitations
  19. Anne Masi , Marilena M. DeMayo , Nicholas Glozier , Adam J. Guastella (2017). An Overview of Autism Spectrum Disorder, Heterogeneity and Treatment Options . Neuroscience Bulletin, 33(2), 183-193. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  20. Sarah Cassidy , Louise Bradley , Heather Cogger-Ward , Jacqui Rodgers (2021). Development and validation of the suicidal behaviours questionnaire - autism spectrum conditions in a community sample of autistic, possibly autistic and non-autistic adults . Molecular Autism, 12(1), 46. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  21. Cameron A Maitland , Sinead Rhodes , Anne O’Hare , Mary E. Stewart (2021). Social identities and mental well-being in autistic adults . Autism, 25(6), 1771-1783. SAGE Publications.
    Crossref OpenAlex OpenCitations
  22. Paul Shattuck , Sarah Carter Narendorf , Benjamin Cooper , Paul R. Sterzing , Mary Wagner , Julie Taylor (2012). Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder . Pediatrics, 129(6), 1042-1049. American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  23. Kei Long Cheung , Peter M. ten Klooster , Cees Smit , Hein de Vries , Marcel E. Pieterse (2017). The impact of non-response bias due to sampling in public health studies: A comparison of voluntary versus mandatory recruitment in a Dutch national survey on adolescent health . BMC Public Health, 17(1), 276-276. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  24. R. M. Groves , S. Presser , S. Dipko (2004). The Role of Topic Interest in Survey Participation Decisions . Public Opinion Quarterly, 68(1), 2-31. Oxford University Press (OUP).
    Crossref OpenAlex OpenCitations
  25. 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
  26. Darren Hedley , Mirko Uljarević , Mirko Uljarević , David F. E. Hedley , David F. E. Hedley (2017). Employment and Living with Autism: Personal, Social and Economic Impact . In Inclusion, Disability and Culture (pp. 295-311). Springer International Publishing.
    Crossref OpenAlex OpenCitations
  27. Peverill Squire (1988). Why the 1936 Literary Digest Poll Failed . Public Opinion Quarterly, 52(1), 125. Oxford University Press (OUP).
    Type: Article DOI: 10.1086/269085 OpenAlex: https://openalex.org/W2169025594
    Crossref OpenAlex OpenCitations
  28. Ella Perry , William Mandy , Laura Hull , Eilidh Cage (2022). Understanding Camouflaging as a Response to Autism-Related Stigma: A Social Identity Theory Approach . Journal of Autism and Developmental Disorders, 52(2), 800-810. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  29. 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
  30. Laura Hull , Lily Levy , Meng-Chuan Lai , K.V. Petrides , Simon Baron-Cohen , Carrie Allison et al. (2021). Is social camouflaging associated with anxiety and depression in autistic adults? Molecular Autism, 12(1), 1. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  31. Bérengère G Digard , Antonella Sorace , Andrew C. Stanfield , Sue Fletcher-Watson (2020). Bilingualism in autism: Language learning profiles and social experiences . Autism, 24(8), 2166-2177. SAGE Publications.
    Crossref OpenAlex OpenCitations
  32. Rachel Loomes , Laura Hull , William 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
  33. Nathan J. Wilson , Ashley Stevens , Preeyaporn Srasuebkul , Michelle Kersten , Zhen Lin , Julian Trollor et al. (2021). Exploring the relationship between community mobility and quality of life, employment and completing further education for autistic adults . Journal of Transport & Health, 22, 101117. Elsevier BV.
    Crossref OpenAlex OpenCitations
  34. Erin Robinson , Laura Hull , K.V. Petrides (2020). Big Five model and trait emotional intelligence in camouflaging behaviours in autism . Personality and Individual Differences, 152, 109565. Elsevier BV.
    Crossref OpenAlex OpenCitations
  35. Catherine Lord , Traolach Brugha , Tony Charman , James Cusack *Autistic author. Learn more… , Guillaume Dumas , Thomas W Frazier et al. (2020). Autism spectrum disorder . Nature Reviews Disease Primers, 6(1), 1. Springer Science and Business Media LLC.
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  36. Elizabeth J. Halstead , Emma C. Sullivan , Dagmara Dimitriou (2021). The Impact of COVID-19 on Sleep in Autistic Adults: Longitudinal Comparisons pre and During Lockdown . Frontiers in Psychiatry, 12, 708339-708339. Frontiers Media SA.
    Crossref OpenAlex OpenCitations
  37. Elizabeth M Weir , Carrie Allison , Simon Baron-Cohen (2021). The sexual health, orientation, and activity of autistic adolescents and adults . Autism Research, 14(11), 2342-2354. Wiley.
    Type: Article DOI: 10.1002/aur.2604 OpenAlex: https://openalex.org/W3199419134
    Crossref OpenAlex OpenCitations
  38. Leah I. Stein Duker , Hee Kyung Sadie Kim , Amber Pomponio , Laura Mosqueda , Beth Pfeiffer (2019). Examining Primary Care Health Encounters for Adults With Autism Spectrum Disorder . American Journal of Occupational Therapy, 73(5), 758-769. SAGE Publications.
    Crossref OpenAlex OpenCitations
  39. Ye In (Jane) Hwang , Samuel R. C. Arnold , Julian Trollor , Mirko Uljarević (2020). Factor structure and psychometric properties of the brief Connor–Davidson Resilience Scale for adults on the autism spectrum . Autism, 24(6), 1572-1577. SAGE Publications.
    Crossref OpenAlex OpenCitations
  40. 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
  41. Martina Micai , Antonio Ciaramella , Tommaso Salvitti , Francesca Fulceri , Laura Maria Fatta , Luise Poustka et al. (2022). Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals’ Experiences . Journal of Autism and Developmental Disorders, 52(4), 1623-1639. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  42. Grace Thompson *Autistic author. Learn more… , Melissa Raine , Susan M Hayward , Hannah Kilpatrick (2020). Gathering community perspectives to inform the design of autism-friendly music-making workshops for wellbeing . International Journal of Wellbeing, 10(5), 117-143. International Journal of Wellbeing.
    Crossref OpenAlex OpenCitations
  43. Catherine Lord , Somer Bishop (2021). Let’s Be Clear That “Autism Spectrum Disorder Symptoms” Are Not Always Related to Autism Spectrum Disorder . American Journal of Psychiatry, 178(8), 680-682. American Psychiatric Association Publishing.
    Crossref OpenAlex OpenCitations
  44. Eric Rubenstein , Sarah Furnier (2021). #Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online . Autism in Adulthood, 3(2), 120-128. SAGE Publications.
    Crossref OpenAlex OpenCitations
  45. Elizabeth M Weir , Carrie Allison , Varun Warrier , Simon Baron-Cohen (2021). Increased prevalence of non-communicable physical health conditions among autistic adults . Autism, 25(3), 681-694. SAGE Publications.
    Crossref OpenAlex OpenCitations
  46. Martina Micai , Antonio Ciaramella , Tommaso Salvitti , Francesca Fulceri , Laura Maria Fatta , Luise Poustka et al. (2021). Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project . Frontiers in Psychiatry, 12, 614102. Frontiers Media SA.
    Crossref OpenAlex OpenCitations
  47. Danna Oomen , Annabel D. Nijhof , Jan R. Wiersema (2021). The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries . Molecular Autism, 12(1), 21. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  48. Melanie Muniandy , Amanda Richdale , Samuel R. C. Arnold , Julian Trollor , Lauren P. Lawson (2021). Inter‐relationships between trait resilience, coping strategies, and mental health outcomes in autistic adults . Autism Research, 14(10), 2156-2168. Wiley.
    Type: Article DOI: 10.1002/aur.2564 OpenAlex: https://openalex.org/W3173243847
    Crossref OpenAlex OpenCitations
  49. Gunnar Toft , Chuang Liu , Jyothi Menon , Diana Schendel , Georg Loss , Vera Ehrenstein (2021). Assessment of Educational Attainment and Employment Among Individuals With Autism Spectrum Disorder in Denmark . JAMA Pediatrics, 175(6), 601. American Medical Association (AMA).
    Crossref OpenAlex OpenCitations
  50. OECD. (2021). Education GPS ‐ United Kingdom. Education GPS. https://gpseducation.oecd.org/CountryProfile?primaryCountry=GBR&treshold=10&topic=EO
    Type: Other
    Crossref
  51. Elizabeth M Weir , Carrie Allison , Ken K. Ong , Simon Baron-Cohen (2021). An investigation of the diet, exercise, sleep, BMI, and health outcomes of autistic adults . Molecular Autism, 12(1), 31-31. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  52. Maj‐Britt Posserud , Berit Skretting Solberg , Anders Engeland , Jan Haavik , Kari Klungsøyr (2021). Male to female ratios in autism spectrum disorders by age, intellectual disability and attention‐deficit/hyperactivity disorder . Acta Psychiatrica Scandinavica, 144(6), 635-646. Wiley.
    Crossref OpenAlex OpenCitations
  53. Nicky Rogge (2021). When the cost has sunk: Measuring and comparing the sunk-cost bias in autistic and neurotypical persons . Journal of Economic Psychology, 87, 102432. Elsevier BV.
    Crossref OpenAlex OpenCitations
  54. U. S. Census Bureau. (2018). Educational Attainment in the United States: 2018.
    Type: Other
    Crossref