Understanding the hidden reality: research gaps and intersectionality in neurodiversity

This is the second post in our four-part series on neurodiversity. If you missed our introduction to key concepts and neurotypes, you can read it here [add hyperlink].

In our first post, we explored what neurodiversity means and introduced you to the various neurotypes that make up this rich spectrum of human variation. We ended with a striking statistic: 15-20% of the global population is likely neurodivergent. But there’s more to this story – a hidden reality that shapes who gets counted in these numbers and who remains invisible.

Today, we’ll dig deeper into why our understanding of neurodiversity is incomplete, examining the significant gaps in research and the ways that intersecting identities create compounded challenges for neurodivergent people.

The global knowledge gap

Most neurodiversity research comes from wealthy, Western countries, creating significant blind spots in our understanding. While we have reasonably detailed prevalence data from the United States, Europe, and parts of Asia, vast regions of the world remain understudied. This means that “global” statistics may not truly represent global reality – they may reflect the experiences of neurodivergent people in societies with established healthcare systems and diagnostic frameworks, while millions of neurodivergent people in low- and middle-income countries remain invisible in the data.

Cultural factors also influence how neurodivergent traits are perceived and diagnosed. Behaviors that might stand out in one culture could be considered normal variation in another. Communication styles, social expectations, and family structures all vary dramatically across cultures, yet most diagnostic tools were developed based on Western populations and may not accurately capture neurodivergence in different cultural contexts.

The intersection of identity and exclusion

Neurodivergent people don’t exist in isolation – they also have gender, racial, ethnic, socioeconomic, and other identities that intersect with their neurodivergence. This intersectionality often compounds exclusion and creates additional barriers to diagnosis, support, and acceptance.

Women and girls, for example, are significantly underdiagnosed across all neurotypes, often because early research focused primarily on boys and men. Many diagnostic criteria still reflect how neurodivergence typically presents in males, missing the different ways it may manifest in females. Similarly, people of color face additional barriers to diagnosis due to healthcare disparities, cultural biases in assessment tools, and the fact that early research was predominantly conducted on white populations.

Socioeconomic status creates another layer of complexity. Families with higher incomes typically have earlier access to evaluation and intervention services, while those with fewer resources may face longer waits, limited options, or may never receive a formal diagnosis at all. LGBTQ+ neurodivergent people often face the dual challenge of navigating both neurotypical and heteronormative expectations, potentially experiencing rejection from multiple communities.

These intersecting identities don’t just add challenges – they multiply them. A neurodivergent person who is also a racial minority, from a low-income background, or part of another marginalized group may face exponentially greater barriers to accessing support, achieving educational success, or finding employment that accommodates their needs.

The invisibility of many neurodivergent people isn’t just about individual circumstances though – it reflects broader systemic issues. Healthcare systems that prioritize crisis intervention over developmental support, educational systems designed for neurotypical learning styles, and workplaces that value conformity over diversity all contribute to making neurodivergent people less visible in statistics and marginalized in communities.

The value of lived experience

Perhaps one of the most significant gaps in neurodiversity research is the lack of emphasis on lived experience – understanding the day-to-day realities of neurodivergent people outside of medical or diagnostic frameworks. Traditional research often focuses on what neurodivergent people “can’t do” or how they differ from neurotypical norms, rather than exploring what their lives actually look like, what brings them joy, how they navigate the world, and what they need to thrive their way.

Lived experience research asks different questions: How do neurodivergent people describe their own experiences? What strategies do they develop that work for them? What environments allow them to thrive? What are their relationships like? How do they find meaning and purpose? These questions shift the focus from pathology to humanity, from deficit to the full spectrum of human experience.

Neurodivergent people understand nuances that external observers might miss – the difference between stimming for joy versus stimming for regulation, the way certain environments can be simultaneously challenging and energizing, or how masking affects not just social interactions but sense of self.

When we center on lived experience, we often discover that many “problems” attributed to neurodivergence are actually problems with how society is structured. We learn about innovative solutions that neurodivergent people have developed organically. We gain insight into strengths and capabilities that traditional assessments miss entirely.

The path forward: toward inclusive understanding

Recognizing these hidden realities is the first step toward building a more complete understanding of neurodiversity. This means:

Raising awareness to neurodiversity
Supporting research in underrepresented regions and communities
Developing culturally appropriate diagnostic tools and assessment methods
Training healthcare and education providers to recognize unconscious bias in their practice
Creating support systems that address intersectional needs
Listening to neurodivergent voices from all backgrounds, not just those from privileged communities

In our next post, we’ll explore how the neurodiversity movement is challenging traditional medical models and creating space for a more empowering narrative – one that celebrates different minds rather than pathologizing them.

Ready to continue this journey? Join us for “From Disorder to Diversity: Reframing How We See Different Minds” [add hyperlink] where we’ll discover how changing our perspective can change everything.

References

Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989(1), 139-167.

Durkin, M. S., Maenner, M. J., Baio, J., Christensen, D., Daniels, J., Fitzgerald, R., … & Yeargin-Allsopp, M. (2017). Autism spectrum disorder among US children (2002–2010): socioeconomic, racial, and ethnic disparities. American Journal of Public Health, 107(11), 1818-1826.

Elsabbagh, M. (2020). Linking risk factors and outcomes in autism spectrum disorder: is there evidence for resilience? British Medical Journal, 368, I6880 https://www.bmj.com/content/368/bmj.l6880

Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., & Mandy, W. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519-2534.

Jacobsen, D., Eddy, S., Hennessy, S., Zeiss, D., Sanchez, R., Astley, S., … & Solden, S. (2024). The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021. The Lancet Psychiatry, 11(12), 1059-1069. https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(24)00363-8/fulltext

Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., … & Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15(5), 778-790.