Dear Ms. Astra,

We are writing in response to your article “We Need Better Diagnostic Tests for Autism in Women.” Thank you for sharing your story and how it relates to gender bias in autism spectrum disorder (ASD) diagnosis and treatment. We commend you for highlighting the potentially detrimental effects that girls and women with ASD experience as a result of being undiagnosed, misdiagnosed, or receiving a diagnosis of ASD later in life. We agree that such diagnosis failure may impact women and girls’ mental health, education, employment, and well-being. Importantly, through discussing your story, you describe the importance of standardizing the practice of training teachers, doctors, and psychologists how to better identify autism in girls and women.

There is published data to further support the notion that women are underdiagnosed and receive less support (Rynkiewicz et al., 2019; Lockwood et al., 2021; Young et al., 2018). Historically, autism studies have included three to six times as many males than females, which has resulted in research that is biased toward the male population. According to an article published by the Children’s Hospital of Philadelphia, boys are four times more likely than girls to be diagnosed with ASD, yet newer research suggests that the condition is more common in girls than previously thought (Children’s Hospital of Philadelphia, 2019). In a study entitled “Linguistic markers of autism in girls: evidence of a “blended phenotype” during storytelling,” the authors found that autistic girls used more “cognitive process” words such as “think” and “know” than autistic boys, despite both groups having comparable autism severity (Boorse et al., 2019). These findings support your assertion that there may be a significant difference between boys and girls with respect to strengths and deficits in communication and repetitive speech, criteria classically used to diagnose ASD. Although the CDC states that the rate for ASD is 1 in 34 among boys (or 2.97%) and 1 in 145 among girls (or 0.69%), these statistics may change as we become more aware of potential gender discrimination in autism diagnosis methods and develop better tools to diagnoses autism in girls and women (Maenner et al., 2020).

We appreciate you mentioning that changes to diagnostic criteria and more research are just the beginning. We need more robust therapies and support services for girls and women who are diagnosed with autism in adulthood. Receiving a diagnosis of autism later in life, such as you did, may be scary, frustrating, or confusing. But it may also bring a sense of relief and help women on the spectrum better understand their strengths and challenges. No matter the experience of receiving a diagnosis, every individual with autism deserves access to appropriate resources and support.

In conclusion, ASAT aims to support the efforts to better diagnose and support girls and women who are on the autism spectrum. We prompt readers to visit our website to read more about ASD diagnostic criteria and resources for adults with ASD. However, while there are specific behaviors often associated with ASD, we also encourage readers to continue to be mindful that autism is a spectrum, and not every person meets typical diagnostic criteria.

Sincerely,

Isabelle Mawby (3rd Year Medical Student)

Erin Leif, PhD, BCBA-D

Association for Science in Autism Treatment

References

  1. Boorse, J., Cola, M., Plate, S., Yankowitz, L., Pandey, J., Schultz, R. T., & Parish-Morris, J. (2019). Linguistic markers of autism in girls: evidence of a “blended phenotype” during storytelling.Molecular autism, 10, 14. https://doi.org/10.1186/s13229-019-0268-2
  2. Lockwood Estrin, G., 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
  3. Maenner MJ, Shaw KA, Baio J, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ 2020;69(No. SS-4):1–12. DOI: http://dx.doi.org/10.15585/mmwr.ss6904a1external icon.
  4. Rynkiewicz, A., Janas-Kozik, M., & Słopień, A. (2019). Girls and women with autism. Dziewczęta i kobiety z autyzmem. Psychiatria polska, 53(4), 737–752. https://doi.org/10.12740/PP/OnlineFirst/95098
  5. The Children’s Hospital of Philadelphia. (2019, April 23).Girls and boys on autism spectrum tell stories differently, could explain “missed diagnosis” in girls. Children’s Hospital of Philadelphia. Retrieved from https://www.chop.edu/news/girls-and-boys-autism-spectrum-tell-stories-differently-could-explain-missed-diagnosis-girls
  6. Young, H., Oreve, M. J., & Speranza, M. (2018). Clinical characteristics and problems diagnosing autism spectrum disorder in girls. Archives de pediatrie : organe officiel de la Societe francaise de pediatrie, 25(6), 399–403. https://doi.org/10.1016/j.arcped.2018.06.008

 

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