Care Without Limits? The Experience of Parents of Children with Autism Spectrum Disorders
Care Without Limits? The Experience of Parents of Children with Autism Spectrum Disorders

Summary/Abstract: This article focuses on certain ethical issues that are evident in the images of children with autism spectrum disorders, drawn from semi-structured interviews and focus groups conducted with their parents. The main subject of study is to what extent, why, and how parents’ images adopt, modify, contest and/or combine different normative models of dealing with their children’s condition. Parental care is examined in the context of ethically relevant concepts, such as normality and disability, normative moral agent, and ultimately, good life. The analysis addresses the ethical limits of care experienced, as a burden, but also as an aspect of mutual growing. The ethical conceptions of vulnerability and autonomy are discussed, as well as the moral problems of stigmatization and social exclusion. The study uses biographical research methods and approaches from the field of bioethics and ethics of care, critical disability studies, and social studies of autism. A conclusion is reached that parents strive towards medical and social normalization of their children, but also respect their difference, thus attaching ethical value to it.

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