Abstract
We are grateful to Arenas and colleagues for their thoughtful response to our recent systematic review on the lived experiences of receiving an autism diagnosis in adulthood. 1 Their reflections add important weight to the growing discussion about how lived experience can and should inform health care education and practice, and we welcome the opportunity to extend this dialogue further.
We write to underscore one key theme of their commentary: the urgent need to understand experiences of adult autism diagnosis within diverse cultural contexts, particularly low- and middle-income countries (LMICs). Our systematic review identified no studies sited in a region defined as LMIC, with 85% of studies coming from just three high-income, western, English-speaking countries (United States, United Kingdom, and Australia). We acknowledge that this imbalance partially reflects the fact that, due to resource and capacity limitations, we were only able to screen articles published in the English language—an example of how regional inequalities in scientific impact can be perpetuated in evidence synthesis as well as original research.
As Arenas and colleagues note, autism research and service models remain dominated by evidence and practices from high-income countries in the Global North. This bias clearly limits the international generalizability of the published literature—and, worse, risks inappropriately imposing culturally specific assumptions onto communities made doubly vulnerable through neurodivergence and economic inequality. For autism scholarship, it also impoverishes our understanding of the contingency of autistic experience on cultural contexts, rendering us less able to identify the risks and opportunities inherent in the ways autistic experiences are shaped by religions, languages, laws, politics, and local norms. The sharing of information on the PROPANDA initiative by Arenas and colleagues is a highly welcome addition to the international conversation, demonstrating the importance of developing models that reflect local realities while contributing to global knowledge.
Understanding autism experiences, policy, and practice in LMICs is not relevant only to people living in those regions. In an increasingly migratory world, where migrants represent over 1 in 30 global citizens, 2 adult autism services in high-income countries will increasingly encounter immigrants among their service-user cohort. These migrants bring with them the understandings and outcomes produced by their history of engagement (or lack thereof) with services in their home country, which could impact future service engagement in unpredictable ways. Autistic people who move between cultural contexts—whether through immigration, asylum, or transnational family life—may encounter differing diagnostic criteria, health care systems, and cultural interpretations of neurodevelopmental differences. This can delay diagnosis, create barriers to care, and shape lived experiences of identity and belonging in ways that current research rarely captures. Sensitive and effective support for neurodivergent migrants requires an appreciation of the vast regional diversity in autistic experiences. Newly initiated research by our team 3 is investigating the intersectional experiences of adult autism and immigration in Ireland, exploring how this “double minority” status inflects the experience of both neurodivergence and migration.
This trajectory of work reflects our broader commitment, which is aligned with the spirit of Arenas and colleagues’ commentary: lived experience should not be seen as an optional complement to professional knowledge but as a core element of good practice. When education and research actively integrate first-person perspectives, professionals are better equipped to deliver care that is both scientifically sound and responsive to real lives. Diagnosis is not a purely technical procedure but a deeply personal event, whose experience hinges not only on professional knowledge but also the capacity of practitioners to listen, understand, and respect autistic perspectives. 4 Without this recognition, the diagnostic process risks becoming another form of marginalization rather than an avenue to empowerment.