Late Diagnosis Of ASD In Women

by Kalliope Bessler

Disclaimer: The author of the piece acknowledges that gender and sex are not binary, as evidenced by people’s personal experiences and scientific research. For this article, gender and sex will be discussed primarily in binary terms due to the limited research on individuals with ASD that identify outside of the gender/sex binary.

In 2016 researcher Sarah Bergiela and her cohorts shared that “Compared to males, females are at substantially elevated risk of their ASD (autism spectrum disorder) going undiagnosed: their difficulties are frequently mislabeled or missed entirely.” In the United States, the ratio of girls to boys diagnosed with autism is one to four. For decades, healthcare professionals and researchers have struggled to find conclusive answers as to why girls are supposedly less affected by autism spectrum disorder than boys.

There are a few explanations for why girls are more likely to be missed or diagnosed with ASD later than boys. Some experts have attributed the delayed/less frequent diagnosis to genetic differences between people assigned female at birth and people assigned male at birth, suggesting that girls are just less likely to have autism. However, more evidence suggests that many “higher functioning” girls with ASD do not receive an ASD diagnosis until their teen years or adulthood.

Narrow definitions of autism symptoms could part of the issue. Susan F. Epstein, a clinical neuropsychologist, says that “The model that we have for a classic autism diagnosis has really turned out to be a male model. That’s not to say that girls don’t ever fit it but, girls tend to have a quieter presentation, with not necessarily as much of the repetitive and restricted behavior, or it shows up [differently].” Traditional Western gender stereotypes suggest that girls are just quieter than boys. So, when young girls are very withdrawn or shy, their autism diagnosis is missed because of the assumption that this is typical girl behavior rather than a potential indication of autism. Researchers have also found that some girls with autism may recognize that their behavior is atypical and may mask it in public, meaning that they hide behavior that could be indicative of ASD.

There are terrible consequences for girls with autism being diagnosed later in life or not at all. Dr. Epstein says that undiagnosed girls with ASD may “end up wondering what’s ‘wrong’ with them, which can lead to depression, anxiety, and loss of self-esteem.” Additionally, girls with a missed or late ASD diagnosis miss out on what experts call early intervention, which could include speech and language therapy, work on social skills, and occupational therapy.

ASD diagnosis criteria likely need to be expanded so that fewer girls are overlooked and can receive the necessary support for their ASD throughout their adolescence so they can grow and thrive. Additionally, challenging gender stereotypes about “typical” behavior for boys and girls can lower the number of girls overlooked for autism diagnoses so that fewer girls with ASD miss a diagnosis because their quietness is considered feminine.

SOURCES:

Arky, Beth. “Why Many Autistic Girls Are Overlooked.” Child Mind Institute, Child Mind Institute, 23 Oct. 2019, childmind.org/article/autistic-girls-overlooked-undiagnosed-autism/.

Bergiela, Sarah, et al. “The Experiences of Late-Diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.” Journal of Autism and Developmental Disorders , vol. 46, 2016, pp. 3281–3294., doi:https://doi-org.flagship.luc.edu/10.1007/s10803-016-2872-8.

Centers for Disease Control and Prevention. “Early Intervention and Education for Autism Spectrum Disorder - A Closer Look.” Centers for Disease Control and Prevention, Centers