DSM-5 and Challenges to Female Autism Identification

This is a preview of subscription content, access via your institution.

Notes

  1. 1.

    Ratios are commonly reported as 4:1 or 3:1 boys to girls (Egerton and Carpenter 2016; Dworzynski et al. 2012: Loomes et al. 2017), but have been suggested to be as low as 2.5:1 (Kim et al. 2011), 2:1 (Zwaigenbaum et al. 2012) or 1.8:1 (Mattila et al. 2011). A cause of this discrepancy may be found in a closer examination of the study samples. In study samples including intellectual disability, the male–female ratio is likely to be lower, whereas, in study samples including normal to high IQ, the ratio is likely to be greater. Furthermore, Happé suggests that studies including girls and women are generally not fully representative as they predominately focus on only diagnosed participants and, consequently, far less is known about those who are not officially diagnosed (Happé 2019). As discussed below, it is this, frequently hidden, subset of the autistic population, along with more complex and hard to diagnose cases of female autism, which is the focus of this letter.

  2. 2.

    Dunne (2015) describes the Internet as providing her with ‘an online tribe for the tribeless, a diaspora of aliens in a neurotypical universe.’.

  3. 3.

    For example Wrong Planet, Talk about Autism.

  4. 4.

    This is well captured in Rebecca Westcott and Libby Scott’s collaborative writing on autism from a semi-autobiographical perspective of a young female adolescent: ‘Anxiety rating: 9. And believe me when I tell you that an anxiety rating this high at home would mean an instant meltdown. But I’m here with everyone and I can’t let my true feelings out, so instead they’re all bottled up, eating away at me from the inside like nasty little insects’ (Westcott and Scott 2020).

References

  1. American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

    Google Scholar 

  2. Baldwin, S., & Costley, D. (2016). The experiences and needs of female adults with high-functioning autism spectrum disorder. Autism, 20(4), 483–495. https://doi.org/10.1177/1362361315590805.

    Article  PubMed  Google Scholar 

  3. Beardon, L., & Chown, N. (2014). Identification of adults on the autism spectrum: A suggested pathway and good practice principles. GAP, 15(1).

  4. Buckingham, K. (2019). The advantages of autism: A personal journey. In B. Carpenter, F. Happé, & J. Egerton (Eds.), Girls and autism educational, family and personal perspectives (pp. 19–25). Abingdon: Routledge.

    Google Scholar 

  5. Carpenter, B., Happé, F., & Egerton, J. (2019). Where are all the autistic girls? An introduction. In B. Carpenter, F. Happé, & J. Egerton (Eds.), Girls and autism educational, family and personal perspectives (pp. 3–9). Abingdon: Routledge.

    Google Scholar 

  6. Cook, A., Ogden, J., & Winstone, N. (2018). Friendship motivations, challenges and the role of masking for girls with autism in contrasting school settings. European Journal of Special Needs Education, 33(3), 302–315. https://doi.org/10.1080/08856257.2017.1312797.

    Article  Google Scholar 

  7. Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviours of girls and boys with autism spectrum disorder. Autism, 21(6), 678–689. https://doi.org/10.1177/1362361316671845.

    Article  PubMed  Google Scholar 

  8. Dunne, S. (2015). Autism as an adult: ‘On the many days I spend alone I forget how to talk’. The Guardian, 16 September. Retrieved March 1, 2019 from https://www.theguardian.com/social-care-network/social-life-blog/2015/sep/16/autism-as-an-adult-on-the-many-days-i-spend-alone-i-forget-how-to-talk.

  9. Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 788–797.

    Article  Google Scholar 

  10. Egerton, J., & Carpenter, B. (2016). Girls and autism: Flying under the radar, a quick guide to supporting girls with autism spectrum conditions. Retrieved March 1, 2019 from https://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html

  11. Happé, F. (2019). What does research tell us about girls on the autism spectrum? In B. Carpenter, F. Happé, & J. Egerton (Eds.), Girls and autism educational, family and personal perspectives (pp. 10–15). Abingdon: Routledge.

    Google Scholar 

  12. Hiller, R. M., Young, R., & Weber, N. (2014). Sex Differences in autism spectrum disorder based on DSM-5 Criteria: Evidence from clinician and teacher reporting. Journal of Abnormal Child Psychology, 42(8), 1381–1393. https://doi.org/10.1007/s10802-014-9881.

    Article  PubMed  Google Scholar 

  13. Horlock, S. (2019). Girls Group Respecting the female identity of girls with autism in a school setting. In B. Carpenter, F. Happé, & J. Egerton (Eds.), Girls and autism educational, family and personal perspectives (pp. 48–55). Abingdon: Routledge.

    Google Scholar 

  14. Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., et al. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. J Autism Dev Disorder., 47, 2519. https://doi.org/10.1007/s10803-017-3166-5.

    Article  Google Scholar 

  15. Kim, Y. S., Leventhal, B. L., Koh, Y. J., Fombonne, E., Laska, E., Lim, E. C., et al. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168, 904–912.

    Article  Google Scholar 

  16. Kopp, S., & Gillberg, C. (1992). Girls with social deficits and learning problems: Autism, atypical Asperger syndrome of a variant of these conditions. European Child & Adolescent Psychiatry, 1(2), 89–99. https://doi.org/10.1007/BF02091791.

    Article  Google Scholar 

  17. Lawson, W. (2019). Epilogue – A call for action. In B. Carpenter, F. Happé, & J. Egerton (Eds.), Girls and autism educational, family and personal perspectives (pp. 179–186). Abingdon: Routledge.

    Google Scholar 

  18. Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and Meta-analysis. Journal of American Academy of Child and Adolescent Psychiatry, 56(6), 466–474.

    Article  Google Scholar 

  19. Lowry, L. (2017). Misunderstood girls: A look at gender differences in autism. Hanen Early Language Program. Hanen.org. Retrieved March 20, 2019 from https://www.hanen.org/SiteAssets/Articles---Printer-Friendly/Research-in-your-Daily-Work/Misunderstood-Girls-A-look-at-gender-differences-i.aspx.

  20. Madders, T. (2010). You need to know. Campaign report. (National Autistic Society, UK). Retrieved February 1, 2019 from https://www.autism.org.uk/get-involved/campaign/successes/you-need-to-know.aspx.

  21. Mandy, W. (2017). unpublished work. 2017 International meeting for autism research. Retrieved March 20, 2019 from https://www.spectrumnews.org/news/adolescence-unmasks-autism-traits-girls/

  22. Mattila, M. L., Kielinen, M., Linna, S. L., Jussila, K., Ebeling, H., Bloigu, R., et al. (2011). Autism spectrum disorders according to DSM-IV_TR and comparison with DSM-5 draft criteria: An epidemiological study. Journal of the American Academy of Child & Adolescent Psychiatry, 50(6), 583–592.

    Article  Google Scholar 

  23. Russo, F. (2018). The cost of camouflaging autism. Spectrum (21 February) Retrieved March 1, 2019 from https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/.

  24. Steward, R., Crane, L., Mairi Roy, E., Remington, A., & Pellicano, E. (2018). “Life is much more difficult to manage during periods”: Autistic experiences of menstruation. J Autism Dev Disorder, 48, 4287. https://doi.org/10.1007/s10803-018-3664-0.

    Article  Google Scholar 

  25. Szalavitz, M. (2016). Autism—It’s different in girls. Scientific American. Retrieved March 22, 2019 from https://www.scientificamerican.com/article/autism-it-s-different-in-girls/.

  26. Van Wijngaarden-Cremers, P. J. M., van Eeten, E., Groen, W. B. V., Deurzen, P. A., Oosterling, I. J., & Van der Gaag, R. J. (2014). Gender and age differences in the core triad of impairments in autism spectrum disorders: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 44, 627. https://doi.org/10.1007/s10803-013-1913-9.

    Article  PubMed  Google Scholar 

  27. Westcott, R., & Scott, L. (2020). Do you know me? Find your people Find yourself. London: Scholastic.

    Google Scholar 

  28. Westwood, H., Mandy, W., & Tchanturia, K. (2017). Clinical evaluation of autistic symptoms in women with anorexia nervosa. Molecular Autism, 8(1), 12.

    Article  Google Scholar 

  29. Zwaigenbaum, L., Bryson, S. E., Szatmari, P., Brian, J., Smith, I. M., Roberts, W., et al. (2012). Sex differences in children with autism spectrum disorder identified within a high-risk infant cohort. Journal of Autism and Developmental Disorders, 42(12), 2585–2596.

    Article  Google Scholar 

Download references

Acknowledgments

Thank you to Dr. Luke Beardon and Dr. Nick Chown for comments.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Elsa K. Suckle.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Suckle, E.K. DSM-5 and Challenges to Female Autism Identification. J Autism Dev Disord 51, 754–759 (2021). https://doi.org/10.1007/s10803-020-04574-5

Download citation