Lived Worlds of Autistic Women and Girls: A Neurodiversity Affirming Lifespan Perspective

Dear Colleagues,

Autistic women and girls* present features of their diagnosis differently to males across all key criteria; social communication (Sturrock et al., 2019a), social interaction (Head, et al., 2014), special interests (Tillman, et al., 2018) and sensory sensitivities (Duvekot, et al., 2017). This differing profile in part explains discrepancies in the diagnostic rates between females and males (Estrin, et al., 2021), although greater masking abilities in women (Hull, et al., 2017) and bias/lack of knowledge in professionals (Navot, et al., 2017) also contribute. Currently, autistic women and girls are diagnosed later than males (Rutherford et al., 2016) and have less access to dedicated services (Lai et al., 2015) and higher rates of self-critical behaviours and internalised distress (Lai et al., 2011). Despite increased recognition of diagnostic disparities, much less attention has been paid to the everyday lived experiences of women and girls across their lifespan. Understanding this is essential for building services and responsive affirming supports.

In this upcoming Special Issue of Behavioral Sciences, we explore the journey of autistic women and girls across pivotal periods of development, e.g., early social experiences, building gender identity, adolescence and establishing meaningful relationships, multiple diagnoses, pregnancy and parenthood, careers and aging. We are particularly keen to showcase ND-affirming research, either through co-production, positive psychology or strength-based approaches or investigating community-endorsed practices. We welcome theoretical or applied investigations that contribute to this story, including novel qualitative or quantitative research or systematic reviews.

References

Duvekot, J., van der Ende, J., Verhulst, F. C., Slappendel, G., van Daalen, E., Maras, A., & Greaves-Lord, K. (2017). Factors influencing the probability of a diagnosis of autism spectrum disorder in girls versus boys. Autism, 21(6), 646-658. https://doi.org/10.1177/1362361316672178

Estrin, G. L., Milner, V., Spain, D., Happé, F., & Colvert, E. (2021). Barriers to autism spectrum disorder diagnosis for young women and girls: A systematic review. Review Journal of Autism and Developmental Disorders, 8(4), 454–470. https://doi.org/10.1007/s40489-020-00225-8

Head, A. M., McGillivray, J. A., & Stokes, M. A. (2014). Gender differences in emotionality and sociability in children with autism spectrum disorders. Molecular Autism, 5, 19. https://doi.org/10.1186/2040-2392-5-19

Hull, L., Mandy, W., & Petrides, K. V. (2017). Behavioural and cognitive sex/gender differences in autism spectrum condition and typically developing males and females. Autism, 21(6), 706–727. https://doi.org/10.1177/1362361316669087

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 & Adolescent Psychiatry, 54(1), 11–24. https://doi.org/10.1016/j.jaac.2014.10.003

Lai, M. C., Lombardo, M. V., Pasco, G., Ruigrok, A. N., Wheelwright, S. J., Sadek, S. A., … Baron-Cohen, S. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE, 6(6), e20835. https://doi.org/10.1371/journal.pone.0020835

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), 536–545. https://doi.org/10.1111/cch.12470

Rutherford, M., McKenzie, K., Johnson, T., Catchpole, C., O’Hare, A., McClure, I., … Murray, A. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism, 20(5), 628–634. https://doi.org/10.1177/1362361315617879

Sturrock, A., Yau, N., Freed, J., & Adams, C. (2020). Speaking the same language? A preliminary investigation, comparing the language and communication skills of females and males with high-functioning autism. Journal of autism and developmental disorders, 50(5), 1639-1656. https://doi.org/10.1007/s10803-019-03920-6)

Tillmann, J., Ashwood, K., Absoud, M., Bölte, S., Bonnet-Brilhault, F., Buitelaar, J. K., … Murphy, D. G. M. (2018). Evaluating sex and age differences in ADI-R and ADOS scores in a large European multisite sample of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(7), 2490–2505. https://doi.org/10.1007/s10803-018-3510-4

Dr. Alexandra Sturrock
Dr. Ceri Ellis
Guest Editors

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• autistic
• social interaction
• gender identity