Written by: Caitlin Saliba
Edited by: Holly Paik
Autism Spectrum Disorder (ASD) is defined by the American Psychological Association as a “complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior” (American Psychological Association, 2021). Data shows that the male-to-female ratio for autism is estimated to be about 4:1. However, this may not be the case. As of recently, there has been an increase in discussion as to whether or not females are underdiagnosed with ASD, and new research suggests that the true sex ratio for autism may be closer to 3:1 (Loomes et al, 2017). What could be causing this discrepancy?
A number of factors may be contributing to the underdiagnosis of autism in females, such as females being historically underrepresented in autism or autism-related studies. According to an MIT study, studies often recruit small samples of females, or exclude them entirely. This is in part due to the pre-study screening potential participants go through, which sorts out an exceptional number of females compared to males. This pre-screening test is called the ADOS, or Autism Diagnostic Observation Schedule. It appraises social interaction, communication, play, and repeating behaviors, and calculates a numeric score. These scores determine whether or not subjects are eligible to participate in the study, with certain score thresholds for each section determining that eligibility (Trafton, 2022). However, the use of this system results in autistic females being excluded 2.5 times more often than autistic males. This leads to a severe underrepresentation of females in research and literature (D’Mello et al., 2022). It is not difficult to think of a number of reasons why proper representation for females is important in research on all disorders, including ASD. Overrepresentation of males leads to biased diagnostic criteria by basing it on male-dominated samples, which creates more difficulties for females to get diagnoses, which subsequently leads to barriers to getting proper treatment. These barriers may not be present for males with autism.
In addition to research-related methods that exclude females from research pools, societal or perception-based biases regarding autism combined with sex differences in presentation of ASD also have negative effects on the diagnosis of autism in females. One of the most influential sex differences in this matter is the tendency of females with ASD to camouflage their symptoms, suggesting that autistic traits may be harder to detect in females. This leads to a number of negative outcomes, such as females being misdiagnosed, diagnosed significantly later in life than males, or not diagnosed at all, resulting in no treatment or support. Upon studying this difference, it was found that anxiety was not the driving factor in females masking their symptoms; instead, it might be a result of societal pressures for females to conform to gender roles. Additionally, females might experience more stigma or social backlash for exhibiting traits associated with ASD, such as being disruptive or less empathetic than allistic (non-autistic) females (Schuck et al., 2019). While research on other sex differences between male and female presentations of ASD is both limited and inconsistent, it is unquestionable that females’ tendency to mask their symptoms plays a massive role in the frequency of diagnosis.
Perhaps the most detrimental consequence of the underrepresentation of females in studies and lack of recognition of sex differences is the biased diagnostic criteria found in the DSM-5. While past DSM editions shared the qualities that contribute to underdiagnosis of females, the DSM-5 contains diagnostic criteria that will reduce the amount of people getting diagnosed with autism altogether. One researcher estimated the prevalence to decrease from 1 in 88 children to 1 in 100 children, which may lead to thousands of children not getting the care they need. When using DSM-5 criteria on individuals diagnosed with ASD by the DSM-4, only 81.2% of them met ASD criteria (Maenner et al, 2014). Inevitably, fewer females will be diagnosed with autism during the use of the DSM-5. This may lead to further misdiagnoses of autistic females, which is already an issue that impacts 80% of that population. These females tend to get misdiagnosed with other disorders such as borderline personality disorder, eating disorders, bipolar disorder, and anxiety (Durham University, 2022). As discussed previously, this could result in the prescribing of treatments and psychopharmaceuticals meant to treat the misdiagnosed disorder, which can lead to adverse effects since they are not being properly treated.
It is important across disorders to have proper representation and diagnostic criteria in order to properly encapsulate all presentations of that disorder. While that task is a monumental one, it is important to dedicate resources in researching topics such as the one discussed today in order to fully understand all sides to a disorder, and thus be able to properly treat all individuals who struggle with that disorder, regardless of sex, gender, race, or otherwise. Many studies centering on sex differences in ASD urge fellow researchers to also participate in research on this topic, emphasizing the need for more information.
References:
What is autism spectrum disorder? (2021). https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder
D’Mello, A. M., Frosch, I. R., Li, C. E., Cardinaux, A., & Gabrieli, J. D. E. (2022). Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline. Autism Research, 15(10), 1929–1940. https://doi.org/10.1002/aur.2795
Durham University. (2022, April 22). Women with autism & ADHD aren’t diagnosed until adulthood - Durham University. https://www.durham.ac.uk/research/current/thought-leadership/women-with-autism--adhd-arent-diagnosed-until-adulthood/
Loomes, R., Hull, L., & Mandy, W. (2017). What is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013
Maenner, M. J., Rice, C. E., Arneson, C. L., Cunniff, C., Schieve, L. A., Carpenter, L. A., Van Naarden Braun, K., Kirby, R. S., Bakian, A. V., & Durkin, M. S. (2014). Potential Impact ofDSM-5Criteria on Autism Spectrum Disorder Prevalence Estimates. JAMA Psychiatry, 71(3), 292. https://doi.org/10.1001/jamapsychiatry.2013.3893
Schuck, R. K., Flores, R. E., & Fung, L. K. (2019). Brief Report: Sex/Gender Differences in Symptomology and Camouflaging in Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 49(6), 2597+. https://link-gale-com.proxy.library.stonybrook.edu/apps/doc/A587687562/AONE?u=sunysb&sid=bookmark-AONE&xid=7bf897a9
Trafton, Anne Studies of autism tend to exclude women, researchers find. (2022, September 8). MIT News | Massachusetts Institute of Technology. https://news.mit.edu/2022/studies-autism-women-bias-0908
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