Hidden in Plain Sight: Understanding Autism in Women
Neurodiversity is a spectrum impacted by several factors in life. While it has a major impact on almost every aspect of a person's life, gender is often an overlooked factor that changes how neurodivergence presents itself.
Adobe Stock, Mya Y. Johnson/Been Beautiful
When thinking of autism, the picture of a young white boy usually comes to mind. From representation in media down to the diagnostic criteria for the disorder, there's a clear focus on white male neurodivergence, leaving little room for females in discussions and created coping methods. Since the conception of the diagnosis, the behavior of young white boys has built the framework of how we view autism. The DSM-5 itself, autism’s diagnostic criteria, uses skewed data that focuses on the experiences of white males, complicating the understanding of autism in women, especially women of color, as people of color have been historically excluded and dismissed in most medical research. The diagnostic rates of autism in women are drastically lower than that of their male counterparts, with a 3:1 ratio of men to women, and many autistic females often get their diagnoses much later in life. This clear difference in the neurodivergent experience cannot be ignored when discussing and researching autism. That being said, the question must be asked: what makes autism in women so difficult to understand?
In order to figure out the reason for the autism diagnosis rate gap between the sexes, the concept of masking must first be established. One of the key differences between the autistic male and female experience is the amount of masking. Masking is the act of suppressing recognizable autistic traits. Depending on the specific ways that autism affects a person, masking presents itself differently. For some, it may be subtle, such as forcibly making eye contact or putting more emotion into speaking. For others, masking can be constantly self-monitoring to ensure avoidance of being perceived as neurodivergent or suppressing stimulatory behaviors to fit in better. But oftentimes, in women, masking is almost instilled in them as a necessary skill to have to be seen as “normal” or to assert yourself as a woman.
The idea of “acting like a lady” is something that often causes neurodivergent women to mask in order to achieve. There’s a larger societal pressure on women to act a certain way, and because of these expectations, autistic women often mask more heavily. Autistic women frequently describe their masking as a survival skill created to fit in with their neurotypical peers, with many stating that they had their autistic traits “bullied” out of them to succeed in social settings. In a patriarchal society, women are held to a higher standard. They are allowed less leeway when their actions and personalities differ from the norm. Where men are allowed the free pass of “boys will be boys,” a woman acting “strange” can lead to their femininity and value as a woman to be questioned. The way in which they carry themselves has a lot more weight when women are often judged by their ability to appeal to what men desire and expect from a female. It is because of this standard that women often mask more heavily than men, making it difficult to notice and succinctly diagnose women.
Another issue attributing to the disparity in female diagnosis is the bias that women face in medical spaces. Historically, women have often been ignored when voicing medical issues, with most concerns being dismissed by doctors attributing their symptoms to their periods or hormone cycles. This medical skepticism extends itself into the realm of psychology, in which women have to work twice as hard to attempt to get themselves a formal diagnosis. A UCLA study revealed that 80% of autistic females remain undiagnosed as of age 18. Additionally, circling back to the DSM-5 criteria, most autism research and diagnostic material was based on men. Until very recently, autism has been perceived as a male trait. And because of the difference in presentation of autism in women, getting a diagnosis is extremely difficult. Oftentimes, women are instead misdiagnosed with other mental disorders. Their autism can lead to anxiety and depression as a result of their heavy masking and social difficulties, and because these disorders are more socially acceptable for women to have, the autism they stem from is often ignored in favor of a false diagnosis. This struggle contrasts with that of the male autistic experience, in which men are four times more likely to be diagnosed with autism and have an easier time than women to receive an official diagnosis.
It’s not all terrible, however. With the rise of social media, digestible and easily accessible information on the neurodivergent experience has led to the public becoming more educated on how autism may present in women. TikTok, especially, has led to more of a stigmatization of mental illness and neurodivergence, especially in younger spaces. And, with this new age of easily accessible information, autism can be more easily understood and recognized among women and high-masking individuals. The impact of information on diagnosis rates has already begun to arise in minority groups, in which their diagnosis rates have risen significantly due to what is assumed to be a further destigmatization of neurodivergence within non-white ethnic groups. This increase in diagnostic rates proves there is a possibility of creating change in the disparity between male and female diagnoses, one that can only exist if we first change our mindsets and perceptions of autism as a whole. While difficult, with proper education and open-mindedness, we can work together to make navigating the world as a neurodivergent woman easier and finally see what has been hidden in plain sight.
