Historically, experts and thus society have focused on the prevalence of autism among boys and men. However, an abundance of research suggests that assigned females at birth are underdiagnosed and misdiagnosed at alarming rates.
One study suggests that 80% of autistic girls remain undiagnosed by the age of 181. Even if this estimate is only half accurate, this is far too high a rate, given the life-changing difference early diagnosis can make.
A number of factors are at play:
• Autism in females assigned at birth may present differently. Some emergent research suggests that girls versus boys with autism tend to exhibit less deficits in the brain areas controlling social-communication.2, 3, 4 Additionally, girls are often more adept at masking their social-communication differences, enabling them to better socially blend in on a surface level.5 When girls with autism show less social-communication challenges compared to boys with autism, it can be misleading.
• Society considers common special interests of autistic girls appropriate. Having special interests from a fairly young age are common among all children with autism. However, compared to boys, girls may have more opportunity to develop special interests that have relational components (animals, celebrities, cartoons, etc.); such special interests may be seen as neurotypical and indicative of social-communication skills. 5 In other words, a passion for Elsa may seem more “normal” and “sociable” than a passion for engines!
• Gender biases persist at the clinical level. The historic focus on boys and men in autism has led to lingering biases that can influence the autism screening and evaluation processes. Even experienced and well-meaning health professionals can fall prey to subconscious gender biases. The notion that autism is a “boy’s disorder” can impact their interpretation of observed behavior of girls.6
At Jigsaw Dx, we seek to educate parents and caregivers on the importance of early intervention of autism (for many excellent reasons!). Girls with autism, compared to boys, face unique challenges requiring support. They’re even more susceptible to victimization from their peers. They’re also more likely to have co-occuring internalization disorders, such as anxiety, depression, eating disorders, and non-suicidal self-harm.5 Compared to both non-autistic girls/women and to autistic boys/men, they are at higher risk of various physical health challenges, including endocrine and reproductive health conditions, and epilepsy.7
REFERENCES
1. McCrossin R. Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children (Basel). 2022;9(2):272. Published 2022 Feb 17. doi:10.3390/children9020272
2. Cauvet É, Van't Westeinde A, Toro R, et al. The social brain in female autism: a structural imaging study of twins. Soc Cogn Affect Neurosci. 2020;15(4):423-436. doi:10.1093/scan/nsaa064’
3. Jack A, Sullivan CAW, Aylward E, et al. A neurogenetic analysis of female autism. Brain. 2021;144(6):1911-1926. doi:10.1093/brain/awab064
4. Supekar K, de Los Angeles C, Ryali S, Cao K, Ma T, Menon V. Deep learning identifies robust gender differences in functional brain organization and their dissociable links to clinical symptoms in autism. Br J Psychiatry. Published online February 15, 2022. doi:10.1192/bjp.2022.13
5. Hull, L., Petrides, K. V., & Mandy, W. (2020). The female autism phenotype and camouflaging: A narrative review. Review Journal of Autism and Developmental Disorders, 7(4), 306-317.
6. Belcher HL, Uglik-Marucha N, Vitoratou S, Ford RM, Morein-Zamir S. Gender bias in autism screening: measurement invariance of different model frameworks of the Autism Spectrum Quotient. BJPsych Open. 2023;9(5):e173. Published 2023 Oct 2. doi:10.1192/bjo.2023.562
7. Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z