Qualitative Exploration Of Self-Diagnosed Autistic Women And Gender-Diverse Individuals

Self-diagnosis of autism involves identifying as autistic without formal clinical assessment.

It’s particularly relevant for women and gender non-conforming individuals who often face barriers to diagnosis due to gender bias in diagnostic criteria and clinical practice.

Self-diagnosis can provide a framework for understanding one’s experiences and accessing community support, especially when formal diagnosis is inaccessible or undesired.

Friedman, A., Paltoglou, A., & Sorte, R. (2024). A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis. Neurodiversity. https://doi.org/10.1177/27546330241307828

Key Points

1. The study explored experiences of self-diagnosed autistic women and gender-diverse adults, focusing on how they construct autistic identity outside formal diagnosis.
2. Three main themes emerged: autistic self-discovery, living without a diagnosis, and self-doubt and self-diagnosis.
3. Self-diagnosis was found to be an empowering way of attaining a positive autistic identity outside the deficit paradigm embedded in diagnostic pathways.
4. Participants faced unique challenges like masking, gender bias, and fear of disbelief, but also reported benefits such as greater self-awareness and self-advocacy.
5. The research highlights the need for recognition of self-diagnosis and challenges the necessity of formal diagnosis for identity and support access.
6. Limitations include a small sample size and potential exclusion of non-verbal autistic individuals.

Rationale

The study addresses a significant gap in autism research by focusing on self-diagnosed autistic women and gender-diverse adults, an underrepresented group in the literature.

As awareness of neurodiversity grows, more adults are self-identifying as autistic without formal diagnosis (Overton et al., 2023).

Women and gender non-conforming individuals face additional barriers to diagnosis, making their experiences particularly important to explore (Fusar-Poli et al., 2022).

This research aims to understand how autistic identity is constructed outside formal diagnostic processes, challenging the dominant medical model of autism.

Method

The study employed a qualitative approach using interpretative phenomenological analysis (IPA).

Semi-structured one-to-one online interviews were conducted with participants by an autistic researcher.

Interviews were transcribed using denaturalized transcription convention. The IPA method was chosen for its effectiveness in delivering insight into lived experiences and its focus on insider perspectives.

Sample

Six participants aged 18-69 were recruited through social media platforms.

Inclusion criteria were: age 18 or over, self-identifying as autistic, and identifying as either female or outside the gender binary.

The sample included four females, one non-binary individual, and one genderfluid/genderqueer person.

Results

Three themes were found:

1. Autistic self-discovery

Understanding myself better: Participants described gaining new insights and self-acceptance through self-diagnosis. “It all makes sense now” (Riley)

Defining autism for ourselves: Participants viewed autism as an integral part of their identity and often in positive terms. “We connect so deeply and we see things so differently” (Willow)

2. Living without a diagnosis

Masking to get by: Participants described efforts to hide autistic traits in public. “Masking is just not being yourself in public” (Sophia)

Making own accommodations: Participants found ways to adapt their environments to suit their needs. “I’ve managed to change my life to suit me” (Sophia)

Confronting gendered bias: Participants noted additional challenges faced by autistic women and gender-diverse individuals. “Autistic women definitely get an even shorter end of the stick” (Willow)

Managing trust and disclosure: Participants were selective about disclosing their self-diagnosis, often trusting other autistic individuals most. “I think I trust other autistic people more than I trust anybody else” (June)

3. Self-doubt and self-diagnosis

Dealing with self-doubt: Participants described questioning the validity of their self-diagnosis. “There was a bit of doubt that, is this real or is it just because I know about autism that I’m seeing it in myself” (Sophia)

Challenging the diagnostic model: Participants recognized both benefits and drawbacks of formal diagnosis. “There’s a lot of things a diagnosis gives you, but there’s also a lot of things that it takes away” (Riley)

Insight and Depth

This study provides valuable insights into the experiences of self-diagnosed autistic women and gender-diverse adults, a population often overlooked in autism research.

It challenges the dominant medical model of autism by exploring how individuals construct their autistic identity outside formal diagnostic processes.

The research highlights the complex interplay between self-discovery, societal pressures, and personal challenges faced by this group, offering a nuanced understanding of autistic experiences beyond traditional diagnostic categories.

Implications

The findings suggest that self-diagnosis can be a valid and empowering path to autistic self-discovery, challenging the necessity of formal diagnosis for identity formation and support access.

This has implications for how autism is conceptualized and supported in healthcare, education, and social settings.

The study emphasizes the need for greater recognition of diverse autistic experiences, particularly those of women and gender-diverse individuals, and calls for a shift away from deficit-based models of autism towards more inclusive, identity-affirming approaches.

Strengths

This study had several methodological strengths, including:

1. The study was conducted by an autistic researcher, potentially enhancing understanding and interpretation of participants’ experiences.
2. Use of IPA allowed for in-depth exploration of lived experiences and meaning-making processes.
3. Inclusion of gender-diverse participants broadened the scope of perspectives beyond binary gender categories.
4. The research addresses an important gap in the literature on self-diagnosed autistic adults.
5. The study challenges dominant narratives about autism diagnosis and identity, contributing to broader discussions in the field.

Limitations

This study also had several methodological limitations, including:

1. Small sample size (n=6) limits generalizability of findings.
2. Participants were recruited only from the UK, potentially missing diverse cultural perspectives.
3. The use of semi-structured interviews may have excluded autistic individuals with alternative communication preferences.
4. The study relied on self-reported experiences, which may be subject to recall bias or social desirability effects.
5. The research focused primarily on adults who were able to articulate their experiences verbally, potentially excluding non-speaking autistic individuals or those with significant communication differences.

Conclusion

This study offers important insights into the experiences of self-diagnosed autistic women and gender-diverse adults, highlighting both challenges and benefits of constructing autistic identity outside formal diagnostic processes.

It emphasizes the need for greater recognition of diverse autistic experiences and challenges the medical model’s dominance in autism discourse.

Future research should expand on these findings with larger, more diverse samples and explore alternative methods to include a wider range of autistic voices.

Understanding and validating self-diagnosis as a legitimate path to autistic identity is crucial for improving support and acceptance for all autistic individuals, regardless of diagnostic status.

References

Primary reference

Friedman, A., Paltoglou, A., & Sorte, R. (2024). A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis. Neurodiversity. https://doi.org/10.1177/27546330241307828

Other references

Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187-198. https://doi.org/10.1007/s00406-020-01189-w

Overton, G. L., Marsa-Sambola, F., Martin, R., & Cavenagh, P. (2023). Understanding the Self-identification of Autism in Adults: a Scoping Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s00406-020-01189-w

Keep learning

Suggested Socratic questions for a college class:

1. How might the experiences of self-diagnosed autistic individuals differ from those with formal diagnoses, and what implications does this have for our understanding of autism?
2. In what ways does the medical model of autism limit our understanding of autistic experiences, and how can alternative perspectives expand our knowledge?
3. How do societal expectations and gender norms intersect with autistic experiences, particularly for women and gender-diverse individuals?
4. What ethical considerations arise when discussing self-diagnosis versus formal diagnosis in autism research and practice?
5. How might the findings of this study influence policies and practices related to autism support and accommodation in various settings (e.g., healthcare, education, workplace)?
6. What role does the neurodiversity movement play in shaping perceptions of autism and autistic identity, and how does this study contribute to that discourse?
7. How can researchers balance the need for scientific rigor with the importance of including diverse autistic voices in their studies?
8. In what ways might the experiences of self-diagnosed autistic adults inform early intervention and support strategies for autistic children?
9. How does the concept of masking relate to broader discussions about authenticity, mental health, and social expectations?
10. What are the potential benefits and drawbacks of moving away from a diagnostic model of autism towards a more identity-based understanding?