Abstract
Despite the importance of clinical judgement in autism spectrum disorder (ASD) assessment, little is currently known about challenges faced by diagnosticians when the client is female, any sex/gender biases during the assessment process, and how these issues affect diagnostic outcomes. Forty-seven ASD diagnosticians completed a questionnaire containing two hypothetical case studies (a ‘male’ and ‘female’ ASD presentation), with sex/gender randomly assigned within each. Diagnosticians reported greater ASD symptom severity when female sex/gender pseudonyms were allocated to the case studies, but their confidence in ASD diagnosis was similar regardless of condition. Diagnosticians identified a large number of challenges associated with assessing females for ASD. Many of these related to sex/gender differences in ASD presentation and limitations of diagnostic instruments.
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Notes
Sex refers to biological characteristics differentiating males and females and gender to socially constructed roles and attributes viewed as normative for a particular sex (American Psychiatric Association, 2011). Gendered socialisation begins at birth and resultantly, biological sex and socialised gender are not easily separated, mutually informing an individual’s identity. Therefore, as proposed by Springer et al. (2011) and recommended by Lai et al. (2015), the term sex/gender will be used to reflect the overlap between both constructs (unless otherwise stated).
Supplied as supplementary material.
Only the child’s pseudonym, gendered pronouns and names of friends were altered across conditions. Gender neutral interests were selected.
The precise nature of the regression differed depending on the outcome variable. The probability that a criterion was met (categorical) was modelled using conditional logistic regression with the relevant probabilities estimated from a linear combination of the predictors via a logit link. The remaining dependent variables were numerical and, therefore, modelled as normally distributed and estimated as a linear combination of the predictors via an identity link function.
Descriptive statistics are supplied as supplementary material.
There was some evidence that overall, and in some criteria in particular, criteria were more likely to be considered met for female sex/gender conditions. Due to the categorical treatment of the probability that criteria were met, there was considerable uncertainty surrounding this effect.
References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.
Antezana, L., Factor, R. S., Condy, E. E., Strege, M. V., Scarpa, A., & Richey, J. A. (2018). Gender differences in restricted and repetitive behaviours and interests in youth with autism. Autism Research. https://doi.org/10.1002/aur.2049.
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
Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281–3294. https://doi.org/10.1007/s10803-016-2872-8
Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in Cognitive Sciences, 6(6), 248–254.
Baron-Cohen, S., & Hammer, J. (1997). Is autism an extreme form of the male brain? Advanced Infancy Research, 11, 193–217.
Beck, J. S., Lundwall, R. A., Gabrielsen, T., Cox, J. C., & South, M. (2020). Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism, 24(4), 809–821. https://doi.org/10.1177/1362361320912147
Beggiato, A., Peyre, H., Maruani, A., Scheid, I., Rastam, M., Amsellem, F., Gillberg, C. I., Lebover, M., Bourgeron, T., Gillberg, C., & Delorme, R. (2017). Gender differences in autism spectrum disorders: Divergence among specific core symptoms. Autism Research, 10(4), 680–689. https://doi.org/10.1002/aur.1715
Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. Sage Publications.
Cage, E., & Troxell-Witman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-03878-x
Cassidy, S. A., Gould, J., Townsend, E., Pelton, M., Robertson, A. E., & Rodgers, J. (2019). Is camouflaging autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal of Autism and Developmental Disorders, 50, 3638–3648. https://doi.org/10.1007/s10803-019-04323-3
Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Lawrence Earlbaum Associates.
Constantino, J. N., & Todd, R. D. (2003). Autistic traits in the general population: A twin study. Archives of General Psychiatry, 60(5), 524–530. https://doi.org/10.1001/archpsyc.60.5.524
Cumming, G. (2012). Understanding the new statistics: Effect sizes, confidence intervals, and meta-analysis. Routledge/Taylor & Francis Group.
Denwood, M. J. (2016). Runjags: An R package providing interface utilities, model templates, parallel computing methods and additional distributions for MCMC models in JAGS. Journal of Statistical Software. https://doi.org/10.18637/jss.v071.i09
Duvekot, J., van der Ende, J., Verhulst, F. C., Sleppendel, G., van Daalen, E., Maras, A., & Greaves-Lord, K. (2016). Factors influencing the probability of a diagnosis of autism spectrum disorder in girls versus boys. Autism. https://doi.org/10.1177/1362361316672178
Dworzynski, K., Ronald, A., Bolton, P., & Happe, 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 Adolescent Psychiatry, 51(8), 788–797. https://doi.org/10.1016/j.jaac.2012.05.018
Fombonne, E. (2020). Camouflage and autism. Journal of Child Psychology and Psychiatry, 61(7), 735–738. https://doi.org/10.1111/jcpp.13296
Geelhand, P., Bernard, P., Klein, O., van Tiel, B., & Kissine, M. (2019). The role of gender in the perception of autism symptom severity and future behavioural development. Molecular Autism. https://doi.org/10.1186/s13229-019-0266-4
Giarelli, E., Wiggins, L. D., Rice, C. E., Levy, S. E., Kirby, R. S., Pinto-Martin, J., & Mandell, D. (2010). Sex differences in the evaluation and diagnosis of autism spectrum disorders among children. Disability and Health Journal, 3(2), 107–116. https://doi.org/10.1016/j.dhjo.2009.07.001
Hartung, C. M., & Widiger, T. A. (1998). Gender differences in the diagnosis of mental disorders: Conclusions and controversies of the DSM-IV. Psychological Bulletin, 123(3), 260–278.
Hiller, R. M., Young, R. L., & 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-x
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687
Hull, L., & Mandy, W. (2017). Protective effect or missed diagnosis? Females with autism spectrum disorder. Future Neurology, 12(3), 159–169. https://doi.org/10.2217/fnl-2017-0006
Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-020-00197-9
Jamison, R., Bishop, S., Huerta, M., & Halladay, A. K. (2018). The clinician perspective on sex differences in autism spectrum disorders. Autism, 21(6), 772–784. https://doi.org/10.1177/1362361316681481
Knickmeyer, R., Wheelwright, S. J., & Baron-Cohen, S. (2008). Sex-typical play: Masculinization/defeminization ingirls with an autism spectrum condition. Journal of Autism and Developmental Disorders, 38(6), 1028–1035. https://doi.org/10.1007/s10803-007-0475-0
Kreiser, N. L., & White, S. W. (2014). ASD in females: Are we overstating the gender difference in diagnosis? Clinical Child and Family Psychological Review, 17(1), 67–84. https://doi.org/10.1007/s10567-013-0148-9
Kruschke, J. K. (2010). What to believe: Bayesian methods for data analysis. Trends in Cognitive Sciences, 14, 293–300. https://doi.org/10.1016/j.tics.2010.05.001
Kruschke, J. K. (2018). Rejecting or accepting parameter values in Bayesian estimation. Advances in Methods and Practices in Psychological Science, 1(2), 270–280. https://doi.org/10.1177/2515245918771304
Kruschke, J. K., & Liddell, T. M. (2018). The Bayesian new statistics: Hypothesis testing, estimation, meta-analysis, and power analysis from a Bayesian perspective. Psychonomic Bulletin & Review, 25, 178–206. https://doi.org/10.3758/s13423-016-1221-4
Kruschke, J. K., & Vanpaemel, W. (2015). Bayesian estimation in hierarchical models. In J. R. Busemeyer, Z. Wang, J. T. Townsend, & A. Eidels (Eds.), The oxford handbook of computational and mathematical psychology. Oxford University Press.
Lai, M. C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, 54(1), 11–24. https://doi.org/10.1016/j.jaac.2014.10.003
Leman, P. J., & Tenenbaum, H. R. (2011). Practicing gender: Children’s relationships and the development of gendered behaviour and beliefs. The British Journal of Developmental Psychology, 29, 153–157. https://doi.org/10.1111/j.2044-835X.2011.02032.x
Loomes, R., Hull, L., & Mandy, W. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic meta-analysis. Journal of the American Academy of Child Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013
Muggleton, J. T. B., MacMahon, K., & Johnston, K. (2019). Exactly the same but completely different: A thematic analysis of clinical psychologists’ conceptions of autism across genders. Research in Autism Spectrum Disorders, 62, 75–84. https://doi.org/10.1016/j.rasd.2019.03.004
Navot, N., Jorgenson, A. G., & Webb, S. J. (2017). Maternal experience raising girls with autism spectrum disorder: A qualitative study. Child Care, Health and Development, 43(4), 546. https://doi.org/10.1111/cch.12470
Nowell, S. W., Jones, D. R., & Harrop, C. (2019). Circumscribed interests in autism: Are there sex differences? Advances in Autism. https://doi.org/10.1007/s10803-007-0475-0
Oswald, T. M., Winter-Messiers, M. A., Gibson, B., Schmidt, A. M., Herr, C. M., & Solomon, M. (2015). Sex differences in internalizing problems during adolescence in austism spectrum disorder. Journal of Autism and Developmental Disorders, 46(2), 624–636. https://doi.org/10.1007/s10803-015-2608-1
Plummer, M. (2017). JAGS version 4.3.0 user manual [computer software manual]. Retrieved October 1, 2019, from https://sourceforge.net/projects/mcmc-jags/files/
Posserud, M., Lundervold, A., & Gillberg, C. (2006). Autistic features in a total population of 7- to 9-year-old children assessed by the ASSQ (Autism Spectrum Screening Questionnaire). Journal of Child Psychology and Psychiatry, 47, 167–175. https://doi.org/10.1111/j.1469-7610.2005.01462.x
R Core Team. (2017). R: A language and environment for statistical computing. Vienna, Austria: The R Foundation for Statistical Computing. Retrieved October 1, 2019, from https://www.R-project.org/
Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascome, J., Trubanova Wieckowski, A., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What about the girls? Sex-based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders, 48, 1698–1711. https://doi.org/10.1007/s10803-017-3413-9
Russell, G., Steer, C., & Golding, J. (2011). Social and demographic factors that influence the diagnosis of autistic spectrum disorders. Social Psychiatry and Psychiatric Epidemiology, 46(12), 1283–1293. https://doi.org/10.1007/s00127-010-0294-z
Springer, K. W., Stellman, J. M., & Jordan-Young, R. M. (2011). Beyond a catalogue of differences: A theoretical frame and good practice guidelines for researching sex/gender in human health. Social Science and Medicine. https://doi.org/10.1016/j.socscimed.2011.05.033
Wagenmakers, E. J., Marsman, M., Jamil, T., Ly, A., Verhagen, J., Love, J., Selker, R., Gronau, Q. F., Šmíra, M., Epskamp, S., & Matzke, D. (2017). Bayesian inference for psychology. Part I: Theoretical advantages and practical ramifications. Psychonomic Bulletin & Review, 25, 35–57. https://doi.org/10.3758/s13423-017-1343-3
Whitlock, A., Fulton, K., Lai, M. C., Pellicano, E., & Mandy, W. (2020). Recognition of girls on the autism spectrum by primary school educators: An experimental study. Autism Research, 13(8), 1358–1372. https://doi.org/10.1002/aur.2316
Wickham, H. (2009). ggplot2: Elegant graphics for data analysis. Springer-Verlag.
Wilson, C. E., Murphy, C. M., McAlonan, G., Robertson, D. M., Spain, D., Hayward, H., Woodhouse, E., Deeley, P. Q., Gillan, N., Ohlsen, J. C., Zinkstok, J., Stoencheva, V., Faulkner, J., Yildiran, H., Bell, V., Hammond, N., Craig, M. C., & Murphy, D. G. M. (2016). Does sex influence the diagnostic evaluation of autism spectrum disorder in adults? Autism, 20(7), 808–819. https://doi.org/10.1177/1362361315611381
Young, H., Oreve, M.-J., & Speranza, M. (2018). Clinical characteristics and problems diagnosing autism spectrum disorder in girls. Archives De Pédiatrie, 25(6), 399–403. https://doi.org/10.1016/j.arcped.2018.06.008
Acknowledgments
We would like to thank Autism SA for their role in recruitment and Professor Anna Chur-Hansen for her support and valuable insights into qualitative analyses. This paper has been prepared from a doctoral dissertation (of the first author) and we acknowledge the support of an Australian Government Training Program Scholarship.
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JT, RY, and NW developed the study concept and design. JT collected the data and NW and JT analysed the data. JT drafted the paper, and RY and NW provided critical revisions. All authors approved the final version of the paper for submission.
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Tsirgiotis, J.M., Young, R.L. & Weber, N. A Mixed-Methods Investigation of Diagnostician Sex/Gender-Bias and Challenges in Assessing Females for Autism Spectrum Disorder. J Autism Dev Disord 52, 4474–4489 (2022). https://doi.org/10.1007/s10803-021-05300-5
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DOI: https://doi.org/10.1007/s10803-021-05300-5