The Importance of Proper and Timely Autism Diagnosis in Women

Julia Maher ’23

Opinions Staff

Graphic courtesy of People’s World

Since the word “autism” was coined in 1911 by Swiss psychiatrist Eugen Bleuler, knowledge and perspective of the condition have evolved significantly. Once considered to be childhood schizophrenia, significant research on autism since the late twentieth century has debunked that claim. Although more research has occurred, most of it only features males and their experiences of autism. Very little centers on the experiences of autistic females, especially adult women. 

There is a 4:1 ratio of men to women who are diagnosed with autism, which is a significant gap. According to the CDC, 4,357,667 male adults in the U.S. are estimated to be autistic, while 1,080,322 female adults are. Many autistic girls and women are undiagnosed and only realize much later in life that they are autistic. Women are commonly misdiagnosed with other conditions, such as depression, social anxiety, avoidant personality disorder, bipolar disorder, and borderline personality disorder, but these can also be comorbid. One reason women are diagnosed at a lower rate can be attributed to a higher prevalence of social camouflaging, or masking, which is the suppression of autistic traits. Social challenges may overpower camouflaging skills only later on in life for women, which leads to late identification and diagnosis (Beck, “Looking Good but Feeling Bad”). Late diagnosis is linked to several challenges, including “psychological distress, suicidality, and functional challenges” (Beck). It is a cycle—masking is linked to suicide because it is associated with feeling like a burden to others, and masking is also linked to later diagnosis, which correlates with higher rates of suicide due to many different reasons (Cassidy, “Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviors?”). If women are diagnosed later in life, not only do they tend to struggle with their sense of self after believing they were neurotypical for most of their lives, but they also lack the necessary support, resources, and accommodations for maintaining mental and sensory health. Although it is difficult to be diagnosed later in life, diagnoses almost always provide feelings of intense relief and validation for autistic individuals.

Although some people believe that the 4:1 ratio of diagnosis is accurate and based on neurological differences between the biological sexes, it is important to note that the ratio of diagnosis was 8:1 in 1995 (Zeliadt, “Autism’s sex ratio explained”). This indicates that the gap of autism diagnosis between men and women has been closing, which corresponds with more research into what is called the female autism phenotype (Lockwood). It is believed that there are phenotypic differences in autism between men and women. Since we lack an understanding of the female phenotype due to inadequate research, the current diagnostic criteria and instruments may not be suitable for girls and women (Haney, “Autism, Females, and the DSM-5: Gender Bias in Autism Diagnosis”). For example, the DSM states that “stereotyped or repetitive motor movements,” known colloquially as “stimming,” include “lining up toys or flipping objects.” This example, however, is heavily male-centered and stereotypical, and a lot of women stim in different ways or less frequently than men (Moseley, “Self-Reported Sex Differences in High-Functioning Adults with Autism: A Meta-Analysis”). The differences in autism between men and women include that women tend to mask more, have less impulsivity and hyperactivity, have less stereotypies (also known as stimming), and have more social motivation and desire to create friendships than men (Kreiser, “ASD in Females: Are We Overstating the Gender Difference in Diagnosis?”). Women and girls may also have more socially “acceptable” special interests, such as celebrities and boy bands, instead of the stereotypical male fixation on trains or other objects (Moseley). Additionally, clinician bias proves to still be a significant barrier to women receiving proper and timely diagnoses (Lockwood, “Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: A Systematic Review”).

 Since the diagnostic gap has been closing, it is very likely that the ratio will continue evening out until it becomes relatively equal. If diagnostic tools are reformed to be more inclusive to the female autism phenotype, the gap could close to a ratio of 1.8:1 (Beck). The Camouflaging Autistic Traits Questionnaire (CAT-Q) is a useful diagnostic tool to evaluate women for autism because it accounts for masking and compensatory behavior, while other instruments generally do not (Beck). Not only is the gap closing between men and women, but it is also closing in general—1 in 54 children were identified with ASD among a 2018 sample of 8 year olds from 11 communities in the US, but the rate used to be 1 in 2500 in 1985 and 1 in 500 in 1995. Contrary to what some people believe, there is no “autism epidemic” or “autism crisis”—the criteria and research are simply evolving to more fully understand the beautiful diversity and various manifestations of the autism spectrum. And, as a result, autistic individuals are learning to understand and love themselves more deeply with this newfound personal insight. There is, however, a suicide crisis in the community, with autistic individuals being 3 times more likely than neurotypical individuals to have attempted or died by suicide, and, compounded on top of that, autistic women are 2 times more likely than autistic men to attempt suicide. It is important that research, diagnostic criteria, and clinician biases evolve to be more understanding of female presentations of autism so that women can be identified earlier and have lower rates of mental health struggles as a result.

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