Developmental diversity: Putting the development back into research about developmental conditions

Abstract

The dominant discourse surrounding neurodevelopmental conditions such as autism and ADHD emphasizes biological explanations. Neurodevelopmental conditions are conceived as different types of brains, the result of different types of genes. This way of thinking is present both in medical research and in clinical practice. Indeed, it is widely acknowledged that the idea of having a biological diagnosis helps people see beyond blame and guilt. It aids acceptance. However, simplistic approaches to biology risks neglecting the experiences and stories of autistic people in favor of finding etiological causes. At the same time, there is growing awareness that risks, functioning, and resilience are not solely defined by genes and brains but have a cultural and experiential component as well. Furthermore, atypical cognitive trajectories are not straightforwardly associated with poor outcomes. In this paper we describe the concept of developmental diversity as an alternative to more categorical approaches to neurodevelopmental conditions. We explore how dynamic models of life offer possibilities to look at neurodevelopmental conditions differently: rather than seeing autistic people as people with fundamental flaws in their genes or software faults in their brains that have to be explained, autism appears as a phenomenon that exists in interaction with the context, as a meaningful reaction to the environment. We explore what it would mean for research to go from a diagnosis-based approach to a developmental diversity approach that will define wellbeing and functioning in a more granular way across developmental trajectories. We argue that this would mean incorporating lived experiences into biological research and going beyond genes-environment dichotomies. Next to yielding a more complete picture on the phenomenon of autism, we describe how an approach that takes developmental diversity as a starting point offers a new way to look at existing challenges of autism research, such as how to deal with the significant overlap between diagnosis. Our hypothesis is that thinking with developmental diversity rather than categorical difference both represents an opportunity for a more inclusive society, and fundamentally can alter the way we perform research. As such, it is in line with requests of neurodiversity and disability movements.