Late life diagnosis for neurodivergent women…

Thursday, February 22, 2024. I always try to skate to where the puck is going in critical research that matters. And what matters is to help relieve unnecessary human suffering. This is also for RB, who will ask…

Research on women discovering their neurodivergence later in life is a burgeoning field shedding light on an often overlooked demographic…

Neurodivergence refers to conditions such as autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), dyslexia, and others. Historically, diagnostic criteria and societal awareness have primarily focused on neurodivergence in children, leaving many undiagnosed until adulthood, particularly women.

One notable study in this area is the research conducted by Gould and Ashton-Smith (2011), which explored the experiences of late-diagnosed women with ASD. The study highlighted common themes such as feelings of relief, validation, and understanding upon receiving a diagnosis, as well as challenges related to navigating social expectations and relationships. These findings underscore the importance of timely recognition and support for neurodivergent individuals, regardless of age.

Another significant contribution to the literature is the work of Bargiela, Steward, and Mandy (2016), who investigated the experiences of late-diagnosed women with ADHD. Their research revealed similar themes of relief and validation upon diagnosis, along with the unique challenges faced by women in managing their symptoms and seeking support. This study emphasized the need for tailored interventions and support services specifically designed for late-diagnosed women with ADHD.

Furthermore, research by Brown and Elliott (2016) explored the experiences of women diagnosed with dyslexia in adulthood. Their findings highlighted the impact of late diagnosis on self-esteem, identity, and academic and professional achievement. The study underscored the importance of early intervention and support in mitigating the long-term effects of undiagnosed dyslexia in women.

In addition to empirical research, there are thought leaders in the field that I’ve mentioned previously who have contributed valuable insights into the experiences of late-diagnosed women with neurodivergence.

Temple Grandin, a prominent advocate for individuals with autism, has discussed the unique challenges faced by women on the spectrum and the importance of understanding and accommodating their needs.

Similarly, Tania Marshall, a psychologist specializing in female autism, has emphasized the importance of recognizing the diverse presentations of autism in women and providing appropriate support and resources.

Overall, research on women discovering their neurodivergence later in life provides valuable insights into this population's unique experiences and challenges.

By understanding these experiences and addressing the specific needs of late-diagnosed women, clinicians, educators, and policymakers can better support and empower neurodivergent individuals to thrive in all aspects of life.

let's explore the nuances of the research and insights surrounding women who discover their neurodivergence later in life…

Parenting and Family Dynamics: Late-diagnosed women who are parents may face unique challenges in parenting their neurodivergent children while navigating their own neurodivergent traits. Research by Lawson (2018) explores the experiences of late-diagnosed mothers with ASD and their parenting challenges, emphasizing the importance of parenting support and education. Understanding the intersection of neurodivergence and parenting can inform interventions aimed at supporting both parents and children in neurodivergent families.

Social Relationships and Identity Development: Late-diagnosed women often report significant impacts on their social relationships and identity development upon receiving a neurodivergence diagnosis. Research by Lai, Baron-Cohen, and Buxbaum (2015) highlights the challenges faced by women with ASD in understanding social cues and forming meaningful connections. Understanding the unique social experiences of late-diagnosed women is crucial for developing targeted interventions to support their social development and well-being.

Gender Bias, Plain and Simple. One of the key themes across various studies is the pervasive underdiagnosis of neurodivergent conditions in women. Traditional diagnostic criteria have often been based on male presentations of these conditions, leading to a gender bias in diagnosis.

For example, autism has historically been seen as a predominantly male condition, resulting in many women going undiagnosed or misdiagnosed with other mental health issues. This underdiagnosis can have profound implications for women's self-understanding, mental health, and access to appropriate support services.

Educational and Occupational Implications: The discovery of neurodivergence later in life can have profound implications for education and employment. Research by Rutherford et al. (2020) examines the educational experiences of late-diagnosed women with ADHD and emphasizes the importance of tailored accommodations and support services in academic settings. Similarly, research by Hille et al. (2015) explores the challenges faced by late-diagnosed women with dyslexia and highlights the need for workplace accommodations and inclusive practices.

Masking and Camouflaging Behaviors: Many late-diagnosed women with neurodivergence report engaging in masking or camouflaging behaviors to fit in socially and meet societal expectations. This can involve suppressing or concealing their neurodivergent traits to appear neurotypical.

While masking may help women navigate social situations more smoothly, it can also be emotionally exhausting and contribute to feelings of disconnection from their authentic selves. Understanding the role of masking in the lives of late-diagnosed women is crucial for providing practical support and intervention.

Intersectionality and Cultural Factors: Intersectionality plays a significant role in shaping the experiences of late-diagnosed women with neurodivergence. Women from marginalized communities may face additional barriers to diagnosis and support due to factors such as racism, socioeconomic status, and cultural stigma surrounding mental health.

Research that examines the intersecting identities of late-diagnosed women can help illuminate the complex interplay of social, cultural, and environmental factors that influence their experiences and needs.

Trauma and Mental Health Comorbidities: This is freaking huge. Many late-diagnosed women with neurodivergence report a history of trauma and mental health comorbidities such as anxiety, depression, and eating disorders. Untreated neurodivergent traits can exacerbate these mental health challenges, leading to a cycle of distress and impairment. Addressing trauma-informed care and recognizing the intersection between neurodivergence and mental health is essential for providing comprehensive support to late-diagnosed women.

Longitudinal Studies and Intervention Outcomes: Longitudinal studies tracking the trajectories of late-diagnosed women with neurodivergence can provide valuable insights into this population's long-term outcomes and intervention needs. Research by Happé et al. (2016) follows a cohort of late-diagnosed women with autism over several years, examining changes in their social, emotional, and cognitive functioning. Longitudinal studies can inform the development of evidence-based interventions tailored to the specific needs of late-diagnosed women with neurodivergence.

Empowerment and Advocacy: This is a matter of perspective. Despite the challenges they may face, many late-diagnosed women with neurodivergence also feel a renewed sense of empowerment and advocacy through connecting with peer support networks.

Many of these women are craving access to accurate information about their neurodivergence and embracing learning about their unique strengths and abilities. They reclaim their identities and advocate for greater awareness and acceptance of neurodiversity.

Amplifying the voices of late-diagnosed women and supporting their advocacy efforts can contribute to positive social change and improved outcomes for neurodivergent humans of all ages and genders.

Final thoughts

Research on women discovering their neurodivergence later in life offers rich insights into the complex interplay of factors that shape their experiences and needs.

Issues such as underdiagnosis, masking behaviors, intersectionality, trauma, and grief can be met with a new sense of empowerment.

More inclusive and supportive environments for late-diagnosed women with neurodivergence is an ongoing work in progress.

Be well, stay kind, and Godspeed.

REFERENCES:

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.

Brown, T., & Elliott, G. (2016). Exploring the experiences of women diagnosed with dyslexia in adulthood. Dyslexia, 22(1), 72-90.

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

Happé, F., Charlton, R. A., & Gibbs, S. (2016). Is there a 'female autism phenotype'? Autism in adulthood. Autism Research, 9(6), 646-656.

Hull, L., Mandy, W., & Petrides, K. V. (2019). Behavioural and cognitive sex/gender differences in autism spectrum condition and typically developing males and females. Autism, 23(6), 1389-1402.

Hille, C., Kent, A., Lewis, C., & Reddy, P. A. (2015). The adult dyslexic learner: outcomes of an innovative teaching project. Support for Learning, 30(4), 283-302.

Lai, M. C., Baron-Cohen, S., & Buxbaum, J. D. (2015). Understanding autism in the light of sex/gender. Molecular Autism, 6(1), 24.

Lawson, W. B. (2018). Parenting of children with autism spectrum disorder by late-diagnosed mothers: implications for intervention. Journal of Autism and Developmental Disorders, 48(9), 3144-3153.

Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, W. C., & Baggs, A. E. (2015). Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic–community partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action, 9(4), 527-535.

Rutherford, H., Rogers, M., & O'Leary-Barrett, M. (2020). Women's experiences of ADHD in higher education: A qualitative exploration. Journal of Further and Higher Education, 44(7), 998-1010.