Reasons for Late Diagnosed Autism in Females

by NeuroSpark Health
Late Diagnosed Autism in Females

With the rapidly expanding visibility and representation around autism as a spectrum that presents much differently and more subtly than what was stereotypically understood about autism presentations in boys and men, it is clear that women assigned female at birth (AFAB) and socialized as female, have been missed, misunderstood, and left on the sidelines without accurate diagnosis and support. Technology and social media have enabled many autistic girls and women to speak out and come together about their experiences. Many AFAB women discover that they deeply resonate and identify with these lived experiences and begin their process of researching to find out if they could be autistic, too. There is also a growing body of research that is finally beginning to explore how autism presentations and experiences can be significantly different between the sexes. The neurodiversity movement is on its way to getting to the bottom of this diagnostic disparity of autism between males and females, especially with more women pursuing autism assessment in adulthood now that they are equipped with this new knowledge.

Reasons for Late Diagnosis in Females

Masking
It is commonly understood that masking is more common, and possibly more intense, in AFAB women than in AMAB males. This is thought to be due to the way girls and women are generally socialized. They are taught to fit into social expectations and blend into a variety of social landscapes. They are expected to be pleasant, polite, and accommodating. This could also mean that they learn to filter, modify, and moderate their behaviors and personalities in order to conform to society’s “ideal” female. Unfortunately, this instills the message that girls and women’s needs are secondary to the expectations of those around them. So they learn and adapt to tolerate discomfort and camouflage who they are in order to avoid being seen as “too much, too different, too sensitive,” etc.

Male-dominated research and stereotypes
Historically, autism research and education was based on observable autism characteristics in primarily white boys assigned male at birth. As such, the diagnostic criteria has also been historically based on the autism presentation of white AMAB boys. Autism research is also historically lacking ethnic, racial, and socioeconomic factors as well. This excludes females, especially those who hold intersectional identities, from the conceptualization, conversation, and diagnosis of autism.

Externalizing vs. internalizing behaviors 
Male behavior is typically more externalizing (apparent) than females who typically lean towards more internalizing (less apparent) behaviors. A meltdown/tantrum can be considered an example of an observable, externalizing behavior and an autistic shutdown can be considered an internalizing behavior. This contributes to the missed and misdiagnosis of autism in females, especially when providers are not trained to assess more subtle or underrepresented autistic traits. 

Misdiagnosis and co-occurring conditions
Autistic women may be given a variety of misdiagnoses before receiving an accurate diagnosis of autism. Common misdiagnoses include anxiety disorders, mood disorders, personality disorders. While there is a high prevalence of autism and co-occuring conditions, misdiagnosis and missed diagnosis creates situations where women can be treated incorrectly (or incompletely) when providers fail to recognize significant features of their neurotype.

Interests that seem more “typical” or “common”
One trait of autism is having intense, specific interests in which their participation is more frequent or much more intense than neurotypical interests and hobbies. Even the DSM-5-TR lists one example of special interests as “learning the detailed schedules of an entire public transportation system.” One topic of conversation is that autistic women and girls may have special interests that are more popular, common, or aligned with their peers. For example, having a special interest in a television show that is popular amongst other females. Since many other females also like it, their interest in it is not seen as “atypical” even if their participation in it is significantly above average.
 

Why women pursue autism assessment in adulthood

Understanding their past 
Part of the journey of self-discovery and identity exploration for late diagnosed autistic women is being able to reflect on their childhood and understand it in a new way. This could also mean being able to rewrite or reframe the narratives that they were conditioned into believing about themselves. Maybe they were told that they were too shy or sensitive as a child, and now as an adult they realize that they were actually autistic this whole time. They get to reframe their past from a neurodiversity-affirming lens. This can be a transformative and healing process. 

Identifying their needs 
Because of their increased tendency to mask, many later-identified and late diagnosed autistic females may have deprioritized their own needs. Some women report that they have been masking and tolerating high levels of stress and discomfort for so long that it can be difficult to uncover or identify what their needs even are. Self-diagnosis or professional diagnosis can be the catalyst for autistic women to make a decision to honor their brains and bodies in a way that supports their neurodivergence.

Burnout 
Autistic AFAB women may decide to pursue a “late” autism diagnosis after reaching a period of intense burnout. This could be because they have spent so long performing in their jobs and roles, and finally reach a point where it is no longer sustainable to them. Even women who have been comfortably self-diagnosed as autistic for years, may decide to pursue a formal diagnosis so that they may receive disability-related work accommodations.

Mental Health
Many late diagnosed autistic women experience mental health challenges, often as a result of navigating a world that may feel overwhelming. Pursuing an autism assessment can be a proactive step towards addressing mental health concerns, as it provides diagnostic clarity and allows for support that is tailored to the individual's strengths, differences, and needs.

Parenting 
There are many adult women who start searching for an autism assessment for themselves after their children are diagnosed as autistic. Late-diagnosed autistic mothers report that they began seeing a lot of similarities between themselves and their autistic children and want to learn more about their own neurotypes in relation to their kids. Late identified autistic women may pursue assessment with the knowledge that autism is hereditary and tends to run in families.

Validation
Many women also report that they are hoping for an affirming and validating assessment experience. They want to feel affirmed in the challenges and differences that they have experienced their whole lives, and they want to be seen by a provider who “gets it.” After an often long history of feeling misunderstood or dismissed by others, including medical professionals, finally getting that professional validation can be a big relief. 
 

NeuroSpark Health is neurodivergent-owned and a women-owned practice. 

All of the team at NeuroSpark recognizes and respects the unique experiences of autistic individuals who have been socialized as female. We specialize in understanding the complexities and nuanced experiences of late-identified autistic women who may present with more underrepresented or “subtle” autistic traits. We are happy to support autistic women through adult autism assessments, autism-affirming therapy, coaching, and help with ADA accommodations.