Understanding and Diagnosing Autism Across the Gender Spectrum
A note about terminology: Many in the self-advocacy community prefer to use the word “autism” to describe their diagnosis, rather than the diagnostic label “Autism Spectrum Disorder.” To many in this community, autism is a more inclusive term that reflects the neurodiversity of this population, and the use of the word “disorder” can inadvertently place the focus on a person’s perceived deficits. To honor this preference, I will be using “autism” rather than “autism spectrum disorder” or “ASD” throughout this article. Additionally, I will use both person-first and identity-first language interchangeably. Please reference this link to learn more about this choice.
April is Autism Acceptance Month. Part of my work in the autism community has been dedicated to learning about the ways autism appears across the gender spectrum. To date, much of our understanding of autism has come from research conducted primarily with boys and men, particularly white boys and men, leading to a skewed perception of the ways in which autism may present for individuals outside of this demographic. Understanding how autism symptoms manifest for girls, women, and gender non-conforming individuals is crucial to fostering greater awareness and acceptance, and to increasing access to appropriate supports for autistic folks across the gender spectrum.
Autism was first named as a clinical diagnosis in the 1940s. Over the years, the diagnostic criteria and names have changed slightly with each new iteration of our diagnostic manuals, and our understanding of autism is continuing to evolve over time. The current criteria for an autism diagnosis include persistent deficits in social communication and interactions, including the presence of all 3 of the following: 1) deficits in social-emotional reciprocity, 2) deficits in nonverbal communicative behaviors, and 3) deficits in understanding, maintaining, or initiating social relationships. A person must also exhibit at least 2 of the following 4 restricted and repetitive patterns of behavior: 1) stereotyped and/or repetitive use of language, objects, and/or body, 2) insistence on sameness, inflexible adherence to routines, and/or ritualized patterns of behavior, 3) highly restricted or fixated interests that are abnormal in intensity or focus, and 4) hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment. Many of our gold standard diagnostic measures were developed using primarily white male populations. Thus, our perception of how autism “typically” looks is largely based on how these diagnostic criteria manifest in white males.
The CDC currently reports that about 1 in 36 children have been identified as having autism. Natal males (i.e., individuals assigned male at birth) are diagnosed earlier and more often than natal females (i.e., individuals assigned female at birth). Consequently, natal males are diagnosed at a rate of almost 4 times that of natal females. This has certainly contributed to the belief that autism naturally occurs more often in boys and men. However, we are still learning about the distinctive expression of autistic traits across the gender spectrum. It is possible that autism occurs at the same rate in non-male populations, but our standard of practice hasn’t yet caught up to identify autism as effectively in populations that have historically received less attention in the research literature.
When natal females are diagnosed with autism, they are more likely to have co-occurring intellectual disabilities and higher symptom impairment. In other words, girls aren’t likely to get diagnosed unless their symptom presentation requires higher support needs. Based on this finding, many argue that we are missing or under-diagnosing the natal females that require lower levels of support. This pattern is not limited to the diagnostic impressions of clinicians; parents are also less likely to seek autism evaluations for their daughters who present with autism-related difficulties, even when they also have an autistic son.
This discrepancy in accurate identification of autism for natal females vs. natal males could partially be explained by a phenomenon known as camouflaging or masking (i.e., hiding various challenges). Natal females who are diagnosed with autism often report that they consciously hide social difficulties. They may be better at imitating appropriate social skills and display better abilities at maintaining eye contact and engaging in social chit chat (i.e., small talk), in part due to gender socialization that emphasizes cooperative social skills for girls from a young age. Natal females also tend to exhibit more socially accepted restricted and repetitive patterns of behavior. For example, if a young girl has an intensely fixated interest in something that’s generally accepted as “girly” or stereotypically “feminine,” this special interest may not be identified as a clinically significant restricted interest. Although natal females with autism are often better able to mask their symptoms, doing so can come at a significant cost to their wellbeing. Autistic girls, women, and gender non-conforming individuals who camouflage or mask their challenges report high levels of stress, anxiety, and depressive symptoms. They also report low self-esteem and poorer overall quality of life. In order to reduce the mental health burdens of under-diagnosis of autism in natal females, it is imperative that we improve our diagnostic procedures to identify these individuals as early as possible, in order to increase their access to appropriate supports and accommodations.
If you are a parent or a provider who wants to improve your ability to identify autism across the gender spectrum, the following strategies can be easily implemented to help improve identification of autism in natal females: First, although some natal females with autism may appear to have few social difficulties, watch for evidence of being stuck or overly reliant on familiar social routines. Girls and gender-nonconforming children with autism often have social “scripts” that they rely on when interacting with others, and thus might appear to be very socially skilled while engaging these familiar scripts for interactions. However, if they are heavily relying on repetition of a handful of skills, familiar phrases, or repetitive dialogues to express themselves in social situations, and appear stuck or overwhelmed when a situation calls for them to operate outside of these scripts, these are indicators that they might be camouflaging their underlying social impairment. When evaluating an individual for autism, it is especially important to meet with the child across multiple appointments and to gather information across multiple contexts, in order to determine if they exhibit flexible, spontaneous social skills and to see if the “mask” comes off. Autistic girls are also more likely to engage in pretend play than their male counterparts are; however, they may have a tendency to direct the play or insist on completing play sequences in a ritualized, repetitive manner. It then becomes critical to look past the surface of a child’s play and look for evidence of rigidity, restricted scripts, or repetition in the play process. Additionally, look for indications that the child or their family has significantly adapted their environment to avoid meltdowns or burnout. There’s a belief that autistic girls are less likely to exhibit difficulties related to restricted/repetitive patterns of behavior, but many parents report that they go to great lengths to avoid any triggers in these areas. Finally, when evaluating young girls or natal females for autism, compare their behaviors, skills, and impairment to other girls and natal females. So much of the “autism picture” in our heads is based on how autism appears in boys and men, and many girls and gender non-conforming individuals are missed diagnostically because they are being compared to the wrong demographic.
We have a long way to go in improving our diagnostic processes for identifying autistic girls, women, and gender non-conforming folks, as well as providing appropriate supports. Although this endeavor is not without its challenges, it is crucially important as we work to improve visibility, access to care, and ultimately well-being and quality of life for all individuals with autism.
To learn more about early identification of autism this April, please visit https://autismnavigator.com/. To learn more about autism from the self-advocacy community, please visit https://autisticadvocacy.org/.
References
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
Campbell, J. M., Ogletree, B., Rose, A., & Price, J. (2020). Interdisciplinary evaluation of autism spectrum disorder. In Interprofessional Care Coordination for Pediatric Autism Spectrum Disorder (pp. 47-63). Springer, Cham.
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