Letter: From Technique to Human Experience: Integrating Lived Experience into Health Care Education on Neurodevelopmental Conditions

In recent years, the academic community and health care services have faced a growing global visibility of individuals with neurodevelopmental conditions, particularly autism spectrum. ¹ This trend is increasingly evident in adults, especially due to the late identification of individuals who present with high levels of co-occurring conditions or misdiagnoses. ² However, most of the research in this population—both epidemiological and those addressing assessment and intervention—originates from high-income countries, while literature from low- and middle-income countries (LMICs) is still scarce. ³ In Brazil, significant data gaps hinder the development of targeted public policies and limit access to specialized diagnostic services for autism and other neurodevelopmental conditions. ⁴

In parallel, adult assessment remains constrained by the lack of validated tools with adequate sensitivity and specificity for this age group. ⁵ Coupled with insufficient specialized training in the identification of adults on the autism spectrum and other neurodevelopmental conditions, ⁶ this perpetuates an unclear epidemiological picture in LMICs and contributes to underdiagnosis due to limited specialized service availability. Multidimensional models with multiprofessional approaches that integrate the perspectives of neurodivergent individuals have shown promise, enabling individualized care and valuing the lived experience of those receiving a diagnosis.^7,8

In their systematic review of qualitative studies, Nayyar and colleagues ⁹ emphasize that receiving an autism diagnosis in adulthood can foster understanding and belonging, but also bring challenges, often exacerbated when personal experiences are overlooked. They underscore the need for policies and services that are sensitive to the lived experiences of newly diagnosed adults. We argue that such sensitivity must extend beyond specialized services to all stages of health care professional training. The integration of technical assessment skills with appreciation of lived experience enhances diagnostic accuracy, identifies the difficulties and strengths of each individual, informs tailored interventions, and improves engagement. ¹⁰

To address these challenges in the south of Brazil, we developed the Programa de Pesquisa e Avaliação do Neurodesenvolvimento em Adolescentes e Adultos (PROPANDA—Neurodevelopment Research and Evaluation Program in Adolescents and Adults). PROPANDA combines education for health care professionals with a multidisciplinary assessment clinic specialized in autism and other neurodevelopmental conditions. This service is integrated into the Unified Health System, the Brazilian public health system, and offers diagnostic assessments to individuals from late adolescence through adulthood. In addition, PROPANDA fosters research and supports the training of new investigators, contributing to the expansion of the literature on neurodevelopmental conditions in LMIC populations.

Crucially, these experiences illuminate the reality of autistic adults in our context and highlight potential differences from other countries. PROPANDA also includes researchers and educators with lived experience of neurodevelopmental conditions in the training of future psychiatrists, neurologists, psychologists, and speech–language pathologists. This ensures that neurodiverse perspectives inform both clinical reasoning and care delivery.

We advocate for embedding lived experience into education and practice for neurodevelopmental conditions as a foundational element of accurate diagnosis, individualized interventions, and humanized care. In LMIC contexts—where data gaps, limited resources, and training deficits converge—such integration is not only valuable but essential to address inequities and improve outcomes for neurodivergent adults.