Women on the autism spectrum often fly under the diagnostic radar. If they receive a diagnosis, it is frequently after years of being misunderstood and living with unsupported difficulties.
After being identified in her fifties, one woman exclaimed, “Finally something that makes sense! I’m amazed that a few words can bring validation to my confusing journey and unlock a way to move forward.”
Understanding why autism escapes detection is the foundation for reversing this trend. It is vital to recognize the silent struggles of women if we are to decrease risk and increase well-being for all those impacted.
FOUR REASONS WOMEN WITH AUTISM REMAIN HIDDEN IN PLAIN SIGHT
Bargiela (2016) noted that girls on the spectrum often have fewer visible behavior problems, such as outbursts, misconduct, or aggression. Their concealed struggles are often unnoticed at school. While watching others for social cues, many autistic girls merely appear shy, quiet, and compliant — in other words, as “traditionally female.”
In contrast to what others see, women on the spectrum often struggle below the surface with debilitating anxiety, fear of being misunderstood, loneliness, and perfectionism. Although a “teacher’s pet” may appear successful academically, there is a notable risk she will struggle to navigate peer relationships and sexuality, social communication, and unanticipated changes.
Many women on the spectrum describe developing a social facade by mimicking their peers or fictional characters. The effort required to hide their struggles, however, is often excessively draining. The chronic alertness to what others are doing may result in meltdowns and poor resilience for even mundane daily tasks. Women on the autism spectrum who smile and nod in front of others frequently describe an anxious confusion just below the surface.
Upon receiving a diagnosis, many autistic females realize the irony that their efforts to match others have blocked their access to appropriate recognition and assistance. One explained, “I guess I should have given up trying to be good. All that happened was that no one saw my pain or helped me.”
A common autistic characteristic is an all-or-nothing approach to interests and hobbies. For example, an autistic individual may be obsessed with trains, space, or the weather.
The all-encompassing interests of autistic women may appear more conventional than those of autistic men. Ironically, some women on the spectrum have intense fixations with people or relationships. In contrast to their keen interest, however, these women struggle to navigate the complexities of real-life connections and maintain friendships over time.
Other women on the spectrum describe an intense focus on health, motherhood, environmental issues, spirituality, or animal rights. Although autistic women may live and breathe one topic, others may dismiss the fixated quality because the cause appears worthy of commitment.
Individuals on the spectrum may present with rituals such as completing tasks in a particular order or frequency daily. In addition to rigid adherence to these personal rules, the individual may also show repetition of movements or behaviors.
Autistic females may show higher awareness than males that their routines may be judged negatively by others. As a result, they often internalize these “quirks” to protect their projected persona.
A woman on the spectrum explained that she felt a strong need to complete the same five tasks in a repetitive order each time she left the house. To avoid the scrutiny of others, she forced herself to get in the car, reassuring herself that she would mentally perform the checklist during the drive. “No one realized I had to imagine myself completing each one, but the time and energy I spent on the mental rituals — while trying to get other things done at the same time — was debilitating.”
Increased recognition of autistic characteristics in women is vital to the goal of bringing relief to those who struggle in silence. There is hope for each individual when what is hidden is seen with clarity and autism-specific supports applied.
Bargiela, S., Steward, R. & Mandy, W. The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. J Autism Dev Disord 46, 3281–3294 (2016). https://doi.org/10.1007/s10803-016-2872-8