The Lost Girls: Gender Bias in Autism

Updated: Jan 23


Seventeen medications. Fourteen psychiatrists. Nine diagnoses. Ten years. That’s what it took for Maya to finally be diagnosed with autism when she was 21-years-old. Along her journey, she was diagnosed with anything and everything, from obsessive-compulsive disorder to borderline personality disorder to paranoid personality disorder [1]. Her doctors never considered autism as an option.


Maya isn’t alone. At least 42% of girls with autism are diagnosed with a different disorder at least once [2], and they’re diagnosed on average one and a half years after boys are, leaving an entire group of girls untested and untreated [3]. There’s even a name for them: the lost girls. Why does such a difference even exist in the first place?


Scientists try to justify the gender gap by highlighting that it’s harder to notice autism in girls because girls are better at mimicking their peers to fit in, leading to more subtle autistic behaviors.


However, if the reason behind this difference is that girls have more subtle autistic behaviors, why did it take Lisa, another young girl with autism, three years to be diagnosed even though her symptoms were so severe that she should have qualified for the early intervention programs at 18 months? Meanwhile, her brother was diagnosed with just one assessment [4].


According to Devlin (2018), the lost girls are a product of archaic societal norms and gender bias. From a young age, girls are pushed to be reserved and quiet, making it much harder to notice the symptoms of autism. The way girls are treated also makes them experts at masking their traits [5]. An autistic girl’s ability to mask can be so powerful to the point where even the most sociable and outgoing girl could be autistic [6].


Despite society treating girls completely differently from boys, these differences are never compensated for. For instance, once a girl is diagnosed, the treatments and behavior therapy plans she receives are virtually identical to that of a boy’s even though her symptoms were so severe that she should have qualified for the early intervention programs at 18 months? Meanwhile, her brother was diagnosed with just one assessment [4].


According to Devlin (2018), the lost girls are a product of archaic societal norms and gender bias. From a young age, girls are pushed to be reserved and quiet, making it much harder to notice the symptoms of autism. The way girls are treated also makes them experts at masking their traits [5]. An autistic girl’s ability to mask can be so powerful to the point where even the most sociable and outgoing girl could be autistic [6].


Despite society treating girls completely differently from boys, these differences are never compensated for. For instance, once a girl is diagnosed, the treatments and behavior therapy plans she receives are virtually identical to that of a boy’s even though autism is different in girls and boys [1]. As of now, scientific research never acknowledges the societal difficulties that come with being a woman as most research only collects data from men, failing to acknowledge and research the differences that exist in females with autism.


There is also a more biological hypothesis for the behavioral differences between boys and girls. More specifically, the gene retinoic acid-related orphan receptor-alpha, RORA, encodes for a protein that exists in the brains of people with autism [7]. RORA is involved in an enzymatic activity that converts testosterone to estrogen, so when there are high levels of testosterone--which often occurs in males--it indicates that RORA is less active. This means that there is no conversion of testosterone to estrogen, leading to a testosterone buildup. Therefore, an abundance of testosterone creates more testosterone, which creates even more testosterone: a feedback loop [7]. For those with autism, their brain tissue has low levels of RORA, meaning those with higher levels of testosterone, which leads to the lower levels of RORA, are more likely to have autism [7]. In females, their higher levels of estrogen, which has the opposite effect of testosterone, regulates RORA and protects them from this [7]. The research is fairly preliminary, but some scientists consider this a possible reason for the gender bias in the diagnoses.


But if the gender difference was solely a scientific one, based on the biological nature of autism, why has the ratio of boys diagnosed compared to girls lowered from 8:1 to 3:1 from 1995 to 2010 [8]?


Either way, the role that society plays in scientific research and medical treatment must not be ignored. Since the beginning of autism research, girls have constantly been pushed aside and kept as an afterthought. Most preliminary research done in the field never reported any studies of girls [9]. Even today, studies include only one female for every three to six males [10]. Girls like Maya and Lisa are never helped because the research for girls with autism simply doesn’t exist; therefore, making it difficult to diagnose girls with autism.


The lost girls are often overlooked and left out of crucial treatment because of systematic sexism and a lack of gender representation in medical research. It wasn’t even until 1993 that women were required to be included in clinical research studies [11]. How many more “Lisas” or “Mayas” will have to suffer before the way that scientific research is conducted changes or before diagnostic processes improve? How long will it take before researchers try to find these lost girls? If they don’t act fast, these girls might never be found.


References:

  1. Mandavilli, A. (2020, August 5). The lost girls. Spectrum. Retrieved November 14, 2021, from https://www.spectrumnews.org/features/deep-dive/the-lost-girls/.

  2. Muller, R. T. (2019, May 2). Why women with autism are so often misdiagnosed. Psychology Today. Retrieved November 14, 2021, from https://www.psychologytoday.com/us/blog/talking-about-trauma/201905/why-women-autism-are-so-often-misdiagnosed.

  3. McCormick, C. E. B., Kavanaugh, B. C., Sipsock, D., Righi, G., Oberman, L. M., Luca, D. M. D., Uzun, E. D. G., Best, C. R., Jerskey, B. A., Quinn, J. G., Jewel, S. B., Wu, P.-C., McLean, R. L., Levine, T. P., Tokadjian, H., Perkins, K. A., Clarke, E. B., Dunn, B., Gerber, A. H., … Morrow, E. M. (2020, January 20). Autism heterogeneity in a densely sampled U.S. population: Results from the first 1,000 participants in the ri‐cart study. Wiley Online Library. Retrieved November 14, 2021, from https://onlinelibrary.wiley.com/doi/10.1002/aur.2261.

  4. Arky, B. (2021, August 28). Why many autistic girls are overlooked. Child Mind Institute. Retrieved November 14, 2021, from https://childmind.org/article/autistic-girls-overlooked-undiagnosed-autism.

  5. Devlin, H. (2018, September 14). Thousands of autistic girls and women 'going undiagnosed' due to gender bias. The Guardian. Retrieved November 14, 2021, from https://www.theguardian.com/society/2018/sep/14/thousands-of-autistic-girls-and-women-going-undiagnosed-due-to-gender-bias.

  6. Stewart, T. (2019, February 5). My daughter concealed autism for 23 years. the diagnosis was life-changing. ABC News. Retrieved November 20, 2021, from https://www.abc.net.au/news/2019-01-13/how-easily-girls-can-mask-the-autism-warning-signs/10701928.

  7. Weaver, J. (2011). Why Autism Strikes More Boys Than Girls. Scientific American Mind, 22(3), 11–11. http://www.jstor.org/stable/24943349

  8. Zeliadt, N. (2021, April 7). Autism's sex ratio, explained. Spectrum. Retrieved November 20, 2021, from https://www.spectrumnews.org/news/autisms-sex-ratio-explained/.

  9. Geelhand, P., Bernard, P., Klein, O., van Tiel, B., & Kissine, M. (2019, March 29). The role of gender in the perception of autism symptom severity and future behavioral development. Molecular Autism. Retrieved November 14, 2021, from https://doi.org/10.1186/s13229-019-0266-4.

  10. Sohn, E. (2021, July 16). Righting the gender imbalance in autism studies. Spectrum. Retrieved November 14, 2021, from https://www.spectrumnews.org/features/deep-dive/righting-gender-imbalance-autism-studies/.

  11. Cooney, E. (2020, June 9). Females still routinely left out of biomedical research - and in analyses. STAT. Retrieved November 20, 2021, from https://www.statnews.com/2020/06/09/females-are-still-routinely-left-out-of-biomedical-research-and-ignored-in-analyses-of-data/.

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