Research that engages the experiences and insights of autistics and their caregivers can be more ethical, less stigmatizing, and innovative. To avoid reproducing established assumptions, researchers should learn how autistics and their caregivers understand behavioral and communicative differences, and how they prioritize interventions and accommodations. Fostering “autistic flourishing” requires that researchers focus on similarities between autistics and neurotypical people while allowing for autistic differences. Consulting autistics helps ensure that their personhood is acknowledged.

McCoy, Liu, Lutz, and Sisti (2020) raise concerns about “partial representation,” in which nonelected advocates or advocacy organizations fail to engage and hold themselves accountable to the full range of people they purport to represent. They are right to point out that the autism community is vulnerable to partial representation. This open peer commentary notes some elements among those engaged with autism that may not fit under the type of “federated model” of representation McCoy, et al recommend. Advocates should tread (...) carefully to avoid some types of harm that do not arise when forming federations on other topics. The influence of antivaxxers and other questionable or harmful movements might even lead us to think, despite the value of open debate and engagement, that there is benefit to partial representation if it prevents potential harms that could arise from legitimizing dangerous practices. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper (...) is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers (...) and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being. (shrink)

The diagnosis of autism is on the rise. Autistic people, parents, professionals, and policy makers alike face important questions about the right approach toward autism. For example, there are questions about the desirability of early detection, the role and consequences of underlying cognitive theories, and whether autism is a disorder to be treated or an identity to be respected. How does the fact that autism is a heterogeneous concept affect the answers to these questions? Who has the authority or knowledge (...) to speak on behalf of people with autism? In this paper, we describe a cluster of research topics which should be on the agenda of the emerging field of autism ethics. These topics include the very concept of autism itself, the question whether autism is primarily an identity or a disorder, the ethical questions that parents of autistic children face, metaethical questions, the ethical consequences of epistemological questions, and a cluster of questions related to social justice, stigma, and paternalism. (shrink)

Journal of Social Philosophy, EarlyView.

The philosophical literature on well-being and the good life contains very little explicit discussion of what makes for a better or worse death. The purpose of this essay is to highlight some commonly held views about the good death and investigate whether these views are recognized by the leading theories of well-being. While the most widely discussed theories do have implications about what constitutes a good death, they seem unable to fully accommodate these popular good death views. I offer two (...) partial explanations for why these views have been neglected in discussions of well-being and make two corresponding recommendations for future work in the philosophy of well-being. (shrink)

There are roughly two philosophical literatures on “happiness,” each corresponding to a different sense of the term. One uses ‘happiness’ as a value term, roughly synonymous with well-being or flourishing. The other body of work uses the word as a purely descriptive psychological term, akin to ‘depression’ or ‘tranquility’. An important project in the philosophy of happiness is simply getting clear on what various writers are talking about: what are the important meanings of the term and how do they connect? (...) While the “well-being” sense of happiness receives significant attention in the contemporary literature on well-being, the psychological notion is undergoing a revival as a major focus of philosophical inquiry, following on recent developments in the science of happiness. This entry focuses on the psychological sense of happiness (for the well-being notion, see the entry on well-being). The main accounts of happiness in this sense are hedonism, the life satisfaction theory, and the emotional state theory. Leaving verbal questions behind, we find that happiness in the psychological sense has always been an important concern of philosophers. Yet the significance of happiness for a good life has been hotly disputed in recent decades. Further questions of contemporary interest concern the relation between the philosophy and science of happiness, as well as the role of happiness in social and political decision-making. (shrink)