Exploring the Identity of Autistic Individuals: Reconstructing the Autism Epidemic Myth

  • Matthew BennettEmail author
  • Amanda A. Webster
  • Emma Goodall
  • Susannah Rowland


Currently, there is much discussion in print, online and television media across the world about the “autism epidemic”. Although the rates of diagnoses of autism spectrum disorder (ASD) have increased, it could not accurately be described as an “epidemic”. This chapter begins with an examination of the origins of this myth and an overview of studies, which have measured the prevalence of autism spectrum diagnoses. It then explores current theories surrounding the increasing numbers of individuals who have received a diagnosis of ASD, with specific attention to the changing diagnostic criteria and greater awareness of the autism spectrum among parents, teachers and healthcare professionals including paediatricians and psychologists. The impact of this myth for the autistic community will be explored, and the implications of a neurodiversity paradigm on revising perceptions around the autism epidemic myth will be discussed. The chapter will conclude with an exploration of the benefits of shifting current thinking from viewing the increasing prevalence of autism as an “epidemic” to be stopped, to developing a consciousness of autistic individuals as comprising part of the natural variation of society who encompass a range of strengths and needs.


History and diagnosis of ASD Prevalence Incidence Public awareness Neurodiversity theory 


  1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders—Fourth edition. Washington, DC: American Psychiatric Publishing. Retrieved from
  2. Australian Bureau of Statistics. (2012). Autism in Australia. Canberra, Australia Retrieved from
  3. Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33–55. Scholar
  4. Baron-Cohen, S. (2017). Editorial perspective: Neurodiversity—A revolutionary concept for autism and psychiatry. Journal of Child Psychology and Psychiatry, 58(6), 744–747. Scholar
  5. Beighley, J., & Matson, J. (2014). Comparing social skills in children diagnosed with autism spectrum disorder according to the DSM-IV-TR and the DSM-5. Journal of Developmental & Physical Disabilities, 26(6), 689–701. Scholar
  6. Beighley, J., Matson, J., Rieske, R. D., Jang, J., Cervantes, P. E., & Goldin, R. L. (2013). Comparing challenging behavior in children diagnosed with autism spectrum disorders according to the DSM-IV-TR and the proposed DSM-5. Developmental Neurorehabilitation, 16(6), 375–381. Scholar
  7. Belcher, C., & Maich, K. (2014). Autism spectrum disorder in popular media: Storied reflections of societal views. Brock Education: A Journal of Educational Research and Practice, 23(2), 97–115.Google Scholar
  8. Bennett, M., & Goodall, E. (2016). A meta-analysis of DSM-5 autism diagnoses in relation to DSM-IV and DSM-IV-TR. Review Journal of Autism and Developmental Disorders, 3(2), 119–124. Scholar
  9. Bent, C. A., Dissanayake, C., & Barbaro, J. (2015). Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010-2012. The Medical Journal of Australia, 2015, 202(6), 317–320. Scholar
  10. Bishop, D. V. M., Whitehouse, A. J. O., Watt, H. J., & Line, E. A. (2008). Autism and diagnostic substitution: Evidence from a study of adults with a history of developmental language sisorder. Developmental Medicine and Child Neurology, 50(5), 341–345.CrossRefGoogle Scholar
  11. Broderick, A. A. (2009). Autism, “recovery (to normalcy)”, and the politics of hope. Journal of Intellectual and Developmental Disability, 47(4), 263–281. Scholar
  12. Broderick, A. A., & Ne’eman, A. (2008). Autism as metaphor: Narrative and counter‐narrative. International Journal of Inclusive Education, 12(5–6), 459–476. Scholar
  13. Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of autism acceptance and mental health in autistic adults. Journal or Autism and Developmental Disorders, 48(2), 473–484. Scholar
  14. Centers for Disease Control and Prevention. (2018). Data & statistics. Retrieved from
  15. Croen, L. A., Grether, J. K., Hoogstrate, J., & Selvin, S. (2002). The changing prevalence of autism in California. Journal of Autism and Developmental Disorders, 32(3), 207–215. Scholar
  16. Dillenburger, K., Jordan, J. A., McKerr, L., Devine, P., & Keenan, M. (2013). Awareness and knowledge of autism and autism interventions: A general population survey. Research in Autism Spectrum Disorders, 7(12), 1558–1567. Scholar
  17. Ebben, H. (2018). The desire to recognize the undesirable: De/Constructing the autism epidemic metaphor and contagion in autism as a discourse. Feminist Formations, 30(1), 141–163.CrossRefGoogle Scholar
  18. Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., … Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179. Scholar
  19. Frame, C. (1962). Children in chains. The Evening News.Google Scholar
  20. Gernsbacher, M. A., Dawson, M., & Hill Goldsmith, H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14(2), 55–58.CrossRefGoogle Scholar
  21. Gibbs, V., Aldridge, F., Chandler, F., Witzlsperger, E., & Smith, K. (2012). Brief report: An exploratory study comparing diagnostic outcomes for autism spectrum disorders under DSM-IV-TR with the proposed DSM-5 revision. Journal of Autism and Developmental Disorders, 42(8), 1750–1756. Scholar
  22. Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Front Psychology, 8, 438. Scholar
  23. Grandin, T. (2013). The autistic brain. New York: Houghton Mifflin Harcourt.Google Scholar
  24. Green, M. S., Swartz, T., Mayshar, E., Lev, B., Leventhal, A., Slater, P. E., et al. (2002). When is an epidemic an epidemic? The Israel Medical Association Journal, 4(1), 3–6.PubMedGoogle Scholar
  25. Grinker, R. R. (2008). Unstrange minds: Remapping the world of autism. New York: Basic Books.Google Scholar
  26. Hansen, S. N., Schendel, D. E., & Parner, E. T. (2015). Explaining the increase in the prevalence of autism spectrum disorders: The proportion attributable to changes in reporting practices. JAMA Pediatrics, 169(1), 56–62. Scholar
  27. Hinkka-Yli-Salomäki, S., Banerjee, P. N., Gissler, M., Lampi, K. M., Vanhala, R., Brown, A. S., et al. (2014). The incidence of diagnosed autism spectrum disorders in Finland. Nordic Journal of Psychiatry, 68(7), 472–480. Scholar
  28. Humphrey, N., & Lewis, S. (2008). Make me normal: The views and experiences of pupils on the autistic spectrum in mainstream secondary schools. Autism, 12(1), 23–46. Scholar
  29. Isaksen, J., Diseth, T. H., Schjølberg, S., & Skjeldal, O. H. (2013). Autism spectrum disorders—Are they really epidemic? European Journal of Paediatric Neurology, 17(4), 327–333. Scholar
  30. Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20–30. Scholar
  31. Jones, S. C., & Harwood, V. (2009). Representations of autism in Australian print media. Disability & Society, 24(1), 5–18. Scholar
  32. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217–250.Google Scholar
  33. Kenny, L., Pellicano, E., Hattersley, C., Molins, B., Povey, C., & Buckley, C. (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462. Scholar
  34. King, M., & Bearman, P. (2009). Diagnostic change and the increased prevalence of autism. International Journal of Epidemiology, 38(5), 1224–1234. Scholar
  35. Krahn, T. M., & Fenton, A. (2012). Funding priorities: Autism and the need for a more balanced research agenda in Canada. Public Health Ethics, 5(3), 296–310. Scholar
  36. Krcek, T. E. (2013). Deconstructing disability and neurodiversity: Controversial issues for autism and implications for social work. Journal of Progressive Human Services, 24(1), 4–22. Scholar
  37. Langan, M. (2011). Parental voices and controversies in autism. Disability & Society, 26(2), 193–205. Scholar
  38. Leonard, H., Dixon, G., Whitehouse, A. J. O., Bourke, J., Aiberti, K., Nassar, N., … Glasson, E. J. (2010). Unpacking the complex nature of the autism epidemic. Research in Autism Spectrum Disorders, 4(4), 548–554. Scholar
  39. Lorenz, T., Reznik, N., & Heinitz, K. (2017). A different point of view: The neurodiversity approach to autism and work. In M. Fitzgerald & J. Yip (Eds.), Autism: Paradigms, recent research and clinical applications. InTech: Open Access.Google Scholar
  40. Lupton, D. (2013). Moral threats and dangerous desires: AIDS in the news media. Routledge.Google Scholar
  41. Maenner, M. J., Rice, C. E., Arneson, C. L., Cunniff, C., Schieve, L. A., Carpenter, L. A., … Durkin, M. S. (2014). Potential impact of DSM-5 criteria on autism spectrum disorder prevalence estimates. JAMA Psychiatry, 71(3), 292–300. Scholar
  42. Mahajan, A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Ortiz, D., Szekeres, G., et al. (2008). Stigma in the HIV/AIDS epidemic: A review of the literature and recommendations for the way forward. AIDS (London, England), 22(Suppl 2), S67.CrossRefGoogle Scholar
  43. McGhee, R. (2017). Sensory-friendly playground helping people with autism to feel safe and calm. Retrieved from
  44. McGuire, A. (2012). Representing autism: A sociological examination of autism advocacy. Atlantis: Critical Studies in Gender, Culture & Social Justice, 35(2), 62–71.Google Scholar
  45. McKeever, B. W. (2013). News framing of Autism: Understanding media advocacy and the combating autism act. Science Communication, 35(2), 213–240. Scholar
  46. McPartland, J. C., Reichow, B., & Volkmar, F. R. (2012). Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 51(4), 368–383. Scholar
  47. Milton, D. E. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18(7), 794–802. Scholar
  48. Mitka, M. (2010). Rising autism rates still pose a mystery. JAMA, 303(7), 602. Scholar
  49. Nassar, N., Dixon, G., Bourke, J., Bower, C., Glasson, E., De Klerk, N., et al. (2009). Autism spectrum disorders in young children: Effect of changes in diagnostic practices. International Journal of Epidemiology, 38(5), 1245–1254. Scholar
  50. Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. BioSocieties, 4(4), 425–445.CrossRefGoogle Scholar
  51. Owren, T. (2013). Neurodiversity: Accepting autistic difference. Learning Disability Practice, 16(4), 32–37.CrossRefGoogle Scholar
  52. Özerk, K. (2016). The issue of prevalence of autism/ASD. International Electronic Journal of Elementary Education, 9(2), 263–306.Google Scholar
  53. Parner, E., Thorsen, P., Dixon, G., Klerk, N., Leonard, H., Nassar, N., … Glasson, E. (2011). A comparison of autism prevalence trends in Denmark and Western Australia. Journal of Autism & Developmental Disorders, 41(12), 1601–1608. Scholar
  54. Pellicano, E., Dinsmore, A., & Charman, T. (2014a). Views on researcher-community engagement in autism research in the United Kingdom: A mixed-methods study. PLoS ONE, 9(10), e109946. Scholar
  55. Pellicano, E., Dinsmore, A., & Charman, T. (2014b). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. Scholar
  56. Pew Research Center. (2008). Health news coverage in the U.S. media. Retrieved from
  57. Robertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1), 27.Google Scholar
  58. Romoser, M. F., & Baker, D. L. (2012). The politics of neurodiversity: Why public policy matters. Review of Disability Studies: An International Journal, 8(1), 78.Google Scholar
  59. Russell, G., Collishaw, S., Golding, J., Kelly, S. E., & Ford, T. (2015). Changes in diagnosis rates and behavioural traits of autism spectrum disorder over time. British Journal of Psychiatry Open, 1(2), 110–115. Scholar
  60. Saracino, J., Noseworthy, J., Steiman, M., Reisinger, L., & Fombonne, E. (2010). Diagnostic and assessment issues in autism surveillance and prevalence. Journal of Developmental & Physical Disabilities, 22(4), 317–330. Scholar
  61. Shattuck, P. T. (2006). The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education. Pediatrics, 117(4), 1028–1037. Scholar
  62. Sheldrick, R. C., & Carter, A. S. (2018). State-level trends in the prevalence of autism spectrum disorder (ASD) from 2000 to 2012: A reanalysis of findings from the Autism and Developmental Disabilities Network. Journal of Autism and Developmental Disorders. Scholar
  63. Silberman, S. (2010). Exclusive: First autistic presidential appointee speaks out. Retrieved from
  64. Sinclair, J. (1993). Don’t mourn for us. Retrieved from
  65. Sontag. (1990). Illness as metaphor and AIDS and its metahpors. New York: Anchor.Google Scholar
  66. Taylor, B., Jick, H., & Maclaughlin, D. (2013). Prevalence and incidence rates of autism in the UK: Time trend from 2004-2010 in children aged 8 years. British Medical Journal Open, 3(10), e003219. Scholar
  67. Volkmar, F. R., & McPartland, J. C. (2014). From Kanner to DSM-5: Autism as an evolving diagnostic concept. Annual Review of Clinical Psychology, 10(1), 193–212. Scholar
  68. Webster, A. A., & Garvis, S. (2017). The importance of critical life moments: An explorative study of successful women with autism spectrum disorder. Autism, 21(6), 670–677. Scholar
  69. Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. JAMA: Journal of the American Medical Association, 289(1), 49–55.
  70. Zhai, Y., Sun, S., Wang, F., & Ding, Y. (2017). Multiplicity and uncertainty: Media coverage of autism causation. Journal of Informetrics, 11(3), 873–887. Scholar

Copyright information

© Springer Nature Singapore Pte Ltd. 2018

Authors and Affiliations

  • Matthew Bennett
    • 1
    Email author
  • Amanda A. Webster
    • 2
  • Emma Goodall
    • 3
  • Susannah Rowland
    • 4
  1. 1.University of WollongongWollongongAustralia
  2. 2.University of WollongongWollongongAustralia
  3. 3.University of WollongongWollongongAustralia
  4. 4.University of WollongongWollongongAustralia

Personalised recommendations