Affirming neurodiversity : a study on the ethics of early autism detection and intervention
Autism is ever more considered an expression of neurodiversity, instead of a disorder. But what does this shift mean for clinical care for autistic people and their relatives? This doctoral dissertation explores the ethics of early autism detection and intervention. It investigates what good and just early autism care could look like in this era of neurodiversity. The first two introductory chapters unpack this ethical debate. I provide a state-of-the-art overview of early autism detection and intervention research, and I discuss the neurodiversity movement’s critical appraisal of such practices. Four stand-alone studies make up the main part of this dissertation. In the first study, my colleagues and I analysed the ethics of returning children’s individual research findings to their parents in the context of early autism research. For the second and third study, we conducted in-depth interviews to explore the lived experiences and opinions regarding early autism care among autistic adolescents, and parents of a young (potentially) autistic child. In the fourth study, I explored insights from disability studies and crip theory alongside a feminist ethics’ understanding of ‘vulnerability’ to analyse the ethics of early autism interventions. The dissertation concludes with a final chapter bringing together the main findings of these four studies. Here, I call to reform, not abandon, early clinical autism care. To this extent, I provide three guiding elements towards neurodiversity-affirmative approaches to autism care. First, I suggest carefully reconceptualising autism ‘diagnosis’ and ‘intervention’: depathologising autism as such and readjusting interventions to target autistics-endorsed priorities. Second, I call for a careful revision of ‘expert knowledge’ by including autistic experts by experience in clinical practice. Lastly, I propose that clinical autism practitioners carefully, but explicitly embrace the political dimensions of their work and become active allies in the struggle for autistic emancipation.
Leuven : KU Leuven & Universiteit Antwerpen , 2023
263 p.
Supervisor: Noens, Ilse [Supervisor]
Supervisor: Hens, Kristien [Supervisor]
Supervisor: Steyaert, Jean [Supervisor]
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Creation 18.10.2023
Last edited 19.10.2023
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