Authenticity And Wellbeing In Late Diagnosed Autistic Women

Autism in womenis often diagnosed later in life compared to men. Some reasons for this late diagnosis include:

Late diagnosis can have significant consequences for autistic women’s mental health, self-understanding, and access to support services.

However,receiving a diagnosiscan provide a framework for understanding one’s experiences, allowing autistic women to embrace their authentic selves and live more freely without the pressure to mask or conform to societal expectations.

Portrait of a young woman covering her eyes with her palms and laughing with the reflection of a rainbow on her hands.

Key Points

Rationale

Autism spectrum condition(ASC) has historically been researched and diagnosed with a male-centric lens, leading to a lack of recognition and understanding of the female ASC phenotype (Bargiela et al., 2016; Zener, 2019).

Autistic girls and women are more likely to be diagnosed later in life, often after experiencing challenges in social situations, relationships, and mental health (Gould & Ashton-Smith, 2011; Zener, 2019).

To address this gender discrepancy, recent research has begun exploring the unique experiences and presentations of ASC in females (Baldwin & Costley, 2015; Cridland et al., 2014).

By centering the voices of late-diagnosed autistic women, this study aims to contribute to a more comprehensive understanding of the female ASC experience and inform improvements in diagnostic tools, clinical practices, and support services.

Method

This qualitative study employed a purposive sampling technique to recruit eight late-diagnosed autistic women residing in Australia.

The researchers familiarised themselves with the data through multiple readings, coded for similarities and differences in experiences, and constructed themes that addressed the intersections of gender and ASC.

Power dynamics and the politics of representation were considered throughout the coding and analysis process, consistent with feminist research practices (Bailey, 2011).

Sample

The eight participants, aged between 24 and 53 years (mean age = 39.12, SD = 9.3), had received formal diagnoses of Asperger’s Syndrome or ASC, with an average age at diagnosis of 36.75 years.

One participant identified as culturally diverse, but socioeconomic status, ethnicity, and nationality were not recorded for the sample.

Results

The study identified two core themes: “Managing and masking the self” and “Lost identity found: Finding the authentic self.”

The first theme encompassed participants’ experiences of masking their autistic traits to meet social expectations and reduce vulnerability. Masking was described as both a natural and planned behavior with psychological consequences.

As ‘Sally’ shared,

“I’ve been conditioned to do it [in] non-visible ways, so I clench my toes, I press my toes into the floor or into my shoes, I mash my teeth together, [that] is one of my stims [demonstrates], clicking, socially acceptable things, like clicking my pen, or chewing.”

The second theme explored the impact of diagnosis on participants’ identity and well-being. Receiving a diagnosis provided a framework for understanding past experiences and allowed participants to embrace their authentic selves.

‘Maisy’ expressed,

“just knowing, that is quite a relief and the other sense or feeling I got after I had processed the whole diagnosis was one of joy, and it wasn’t just your everyday happiness, it was a very heighten[ed] joyfulness.”

Insight and Depth

This study is particularly informative as it sheds light on the complex interplay between gender norms, societal expectations, and the experience of being an autistic woman.

The findings highlight the significant impact of masking on autistic women’s mental health and sense of self, as well as the transformative power of diagnosis in facilitating self-acceptance and authenticity.

The research also challenges the dominant, masculinized construction of ASC and emphasizes the need for a reconceptualization of the ontological status of ASC to incorporate diverse experiences across the gender spectrum.

This reconceptualization is crucial for improving diagnostic processes, support services, and societal understanding of neurodiversity.

Strengths

The study had several methodological strengths, including:

Limitations

The study had some limitations, including:

These limitations suggest that the findings may not be generalizable to all autistic women and highlight the need for further research with larger, more diverse samples.

Implications

The results of this study have significant implications for the understanding and support of autistic women. The findings underscore the need for:

Variables that may influence the results include the age at diagnosis, co-occurring mental health conditions, socioeconomic status, and cultural background of the participants.

Further research exploring these variables could provide a more comprehensive understanding of the diverse experiences of autistic women.

Conclusion

This study highlights the importance of understanding the unique experiences of late-diagnosed autistic women and the complex interplay between gender norms, societal expectations, and ASC.

The findings emphasize the need for a reconceptualization of ASC that incorporates diverse experiences across the gender spectrum and informs improvements in diagnostic processes, support services, and societal understanding of neurodiversity.

Further research with larger, more diverse samples is necessary to explore the intersections of gender, ASC, and other variables such as socioeconomic status, ethnicity, and co-occurring conditions.

As the field continues to evolve, it is crucial to acknowledge the sensitivity and complexity of this topic and ensure that the voices and experiences of autistic women are centered in research, clinical practice, and societal discourse.

References

Primary reference

Seers, K., & Hogg, R. (2023). “Fake it ‘till you make it”: Authenticity and wellbeing in late diagnosed autistic women.Feminism & Psychology,33(1), 23-41.https://doi.org/10.1177/09593535221101455

Other references

Bailey, L. F. (2011). Feminist research. In S. Lapan, M. Quataroli, & F. Riemer (Eds.),Qualitative research: An introduction to methods and design(pp. 391–423). John Wiley & Sons.

Baldwin, S., & Costley, D. (2015). The experiences and needs of female adults with high-functioning autism spectrum disorder.Autism, 20(4), 483–495.https://doi.org/10.1177/1362361315590805

Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype.Journal of Autism and Developmental Disorders, 46(10), 3281–3294.https://doi.org/10.1007/s10803-016-2872-8

Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’ world: Investigating the experiences of girls with autism spectrum disorders during adolescence.Journal of Autism and Developmental Disorders, 44(6), 1261–1274.https://doi.org/10.1007/s10803-013-1985-6

Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum.Good Autism Practice, 12(1), 34–41.

Zener, D. (2019). Journey to diagnosis for women with autism.Advances in Autism, 5(1), 2–13.https://doi.org/10.1108/AIA-10-2018-0041

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Method#

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Results#

Insight and Depth#

Strengths#

Limitations#

Implications#

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