Most studies investigating the experiences and needs of individuals with ASD have largely focused on males. Hence, this study investigates parents’ perspectives on the challenges that their daughters with ASD face. In total, 40 parents of 40 females with autism (age range = 4–29 years; mean = 15.9) participated in the study. Five separate, 2-h long focus groups were conducted, with 7–10 participants in each group. Field notes were analyzed using thematic analysis. Some of the issues parents discussed were similar to those experienced by males with ASD, such as challenges in social interactions. However, other issues discussed were of particular relevance to girls with ASD, including difficulties socializing with other girls, sex-specific puberty issues, barriers in accessing intervention and sexual vulnerability.
This is a preview of subscription content, log in to check access.
Buy single article
Instant access to the full article PDF.
Price includes VAT for USA
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
This is the net price. Taxes to be calculated in checkout.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). Arlington: American Psychiatric Pub.
Aronson, J. (1995). A pragmatic view of thematic analysis. The Qualitative Report, 2(1), 1–3.
Baron-Cohen, S., Lombardo, M. V., Auyeung, B., Ashwin, E., Chakrabarti, B., & Knickmeyer, R. (2011). Why are autism spectrum conditions more prevalent in males? PLoS Biology, 9(6), e1001081.
Bauminger, N., Finzi-Dottan, R., Chason, S., & Har-Even, D. (2008). Intimacy in adolescent friendship: The roles of attachment, coherence, and self-disclosure. Journal of Social and Personal Relationships, 25(3), 409–428.
Begeer, S., Mandell, D., Wijnker-Holmes, B., Venderbosch, S., Rem, D., Stekelenburg, F., & Koot, H. M. (2013). Sex differences in the timing of identification among children and adults with autism spectrum disorders. Journal of Autism And Developmental Disorders, 43(5), 1151–1156.
Bellini, S. (2004). Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19(2), 78–86.
Bernard, H. R., Wutich, A., & Ryan, G. W. (2016). Analyzing qualitative data: Systematic approaches. Thousand Oaks: SAGE.
Bishop, S. L., Veenstra-VanderWeele, J., & Sanders, S. J. (2016). Attention finally being paid to girls at risk of Autism. Journal of the American Academy of Child and Adolescent Psychiatry, 55(3), 159.
Bolick, T. (2001). Asperger syndrome and adolescence: Helping preteens and teens get ready for the real world. Beverly: Fair Winds Press.
Bölte, S., Duketis, E., Poustka, F., & Holtmann, M. (2011). Sex differences in cognitive domains and their clinical correlates in higher-functioning autism spectrum disorders. Autism: The International Journal of Research and Practice, 15(4), 497–511.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
Brewin, B. J., Renwick, R., & Fudge Schormans, A. (2008). Parental perspectives of the quality of life in school environments for children with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 23(4), 242–252.
Brown-Lavoie, S. M., Viecili, M. A., & Weiss, J. A. (2014). Sexual knowledge and victimization in adults with autism spectrum disorders. Journal of Autism And Developmental Disorders, 44(9), 2185–2196.
Byers, E. S., Nichols, S., Voyer, S. D., & Reilly, G. (2013). Sexual well-being of a community sample of high-functioning adults on the autism spectrum who have been in a romantic relationship. Autism: The International Journal of Research and Practice, 17(4), 418–433.
Campbell, J. L., Quincy, C., Osserman, J., & Pedersen, O. K. (2013). Coding in-depth semistructured interviews: Problems of unitization and intercoder reliability and agreement. Sociological Methods & Research, 42(3), 294–320.
CDC. (2014). Prevalence of autism spectrum disorders among children aged 8 years: autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveillance Summaries, 63(2), 1–22.
Chan, J., & John, R. M. (2012). Sexuality and sexual health in children and adolescents with autism. The Journal for Nurse Practitioners, 8(4), 306–315.
Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’ world: Investigating the experiences of girls with autism spectrum disorders during adolescence. Journal of Autism And Developmental Disorders, 44(6), 1261–1274.
Davidovitch, M., Hemo, B., Manning-Courtney, P., & Fombonne, E. (2013). Prevalence and incidence of autism spectrum disorder in an Israeli population. Journal of Autism and Developmental Disorders, 43(4), 785–793.
Dean, M., Harwood, R., & Kasari, C. (2016). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, p. 1362361316671845.
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 & Adolescent Psychiatry, 51(8), 788–797.
Edwards, C., & Titchen, A. (2003). Research into patients’ perspectives: Relevance and usefulness of phenomenological sociology. Journal of Advanced Nursing, 44(5), 450–460.
Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., … & Yasamy, M. T. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179.
Fombonne, E. (2001). Is there an epidemic of autism? Pediatrics, 107(2), 411–412.
Fontana, A., & Frey, J. H. (2003). The interviews: From structured questions to negotiated texts. IN N. K. Denzin & Y. S. Lincoln (Eds.) Collecting and interpreting qualitative materials. Thousand Oaks: Sage.
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.
Gotham, K., Brunwasser, S. M., & Lord, C. (2015). Depressive and anxiety symptom trajectories from school age through young adulthood in samples with autism spectrum disorder and developmental delay. Journal of the American Academy of Child & Adolescent Psychiatry, 54(5), 369–376.
Harrop, C., Shire, S., Gulsrud, A., Chang, Y. C., Ishijima, E., Lawton, K., & Kasari, C. (2015). Does gender influence core deficits in ASD? An investigation into social-communication and play of girls and boys with ASD. Journal of Autism and Developmental Disorders, 45(3), 766–777.
Hellemans, H., Colson, K., Verbraeken, C., Vermeiren, R., & Deboutte, D. (2007). Sexual behavior in high-functioning male adolescents and young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(2), 260–269.
Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77–88.
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.
Hofvander, B., Delorme, R., Chaste, P., Nydén, A., Wentz, E., Ståhlberg, O., … & Råstam, M. (2009). Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry, 9(1), 35.
Jamison, T. R., & Schuttler, J. O. (2017). Overview and preliminary evidence for a social skills and self-care curriculum for adolescent females with autism: The girls night out model. Journal of Autism and Developmental Disorders, 47(1), 110–125.
Kirkovski, M., Enticott, P. G., & Fitzgerald, P. B. (2013). A review of the role of female gender in autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(11), 2584–2603.
Kitzinger, J. (1995). Qualitative research. Introducing focus groups. BMJ: British Medical Journal, 311(7000), 299.
Koenig, K., & Tsatsanis, K. D. (2005). Pervasive developmental disorders in girls. In Handbook of behavioral and emotional problems in girls (pp. 211–237). NewYork: Springer.
Krueger, R. A., & Casey, M. A. (2000). Focus groups. Thousand Oaks, CA: SAGE.
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.
Lai, M. C., Lombardo, M. V., Ruigrok, A. N., Chakrabarti, B., Auyeung, B., Szatmari, P., … & Baron-Cohen, S. (2016). Quantifying and exploring camouflaging in men and women with autism. Autism, p. 1362361316671012.
Mandell, D. S., Walrath, C. M., Manteuffel, B., Sgro, G., & Pinto-Martin, J. A. (2005). The prevalence and correlates of abuse among children with autism served in comprehensive community-based mental health settings. Child Abuse & Neglect, 29(12), 1359–1372.
Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., & Skuse, D. (2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism and Developmental Disorders, 42(7), 1304–1313.
Nichols, S., & Blakeley-Smith, A. (2009). “I’m not sure we’re ready for this…”: Working with families toward facilitating healthy sexuality for individuals with autism spectrum disorders. Social Work in Mental Health, 8(1), 72–91.
Nichols, S., Moravcik, G. M., & Tetenbaum, S. P. (2009). Girls growing up on the autism spectrum: What parents and professionals should know about the pre-teen and teenage years. London: Jessica Kingsley.
Pugliese, C. E., Anthony, L. G., Strang, J. F., Dudley, K., Wallace, G. L., Naiman, D. Q., & Kenworthy, L. (2016). Longitudinal examination of adaptive behavior in autism spectrum disorders: Influence of executive function. Journal of Autism and Developmental Disorders, 46(2), 467–477.
Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology in autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 957–976.
Ryle, R. (2011). Questioning gender: A sociological exploration. Thousand Oaks, CA: Pine Forge Press.
Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(1), 48–59.
Stokes, M. A., & Kaur, A. (2005). High-functioning autism and sexuality a parental perspective. Autism: The International Journal of Research and Practice, 9(3), 266–289.
Van Wijngaarden-Cremers, P. J., van Eeten, E., Groen, W. B., Van 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(3), 627–635.
Volkmar, F. R., Szatmari, P., & Sparrow, S. S. (1993). Sex differences in pervasive developmental disorders. Journal of Autism and Developmental Disorders, 23(4), 579–591.
The authors thank Claire Foster, BA and Stephanie Valencia, BA from the Yale Child Study Center, for reliability checks and comments.
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Hilibrand Fellowship and Marilyn and Jim Simons.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The study was approved by the Human Investigation Committee of Yale University School of Medicine and permission was obtained to write to the parents of female patients who had been evaluated at the Yale Child Study Center Developmental Disabilities clinic. The parents signed an informed consent before their participation.
About this article
Cite this article
Mademtzi, M., Singh, P., Shic, F. et al. Challenges of Females with Autism: A Parental Perspective. J Autism Dev Disord 48, 1301–1310 (2018). https://doi.org/10.1007/s10803-017-3341-8
- Autism Spectrum Disorders
- Focus group