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- Convenors:
-
Anna Stenning
(Durham University)
Cinzia Greco (University of Manchester)
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- Discussant:
-
Angela Marques Filipe
(Durham University)
- Format:
- Closed Panel
- Location:
- HG-06A33
- Sessions:
- Friday 19 July, -
Time zone: Europe/Amsterdam
Short Abstract:
The panel proposes that transforming autism research to address global inequities requires new methods which both allow us to think more critically about research based on lived experience and address the implicit ableism and Eurocentrism of biomedical constructions of autism.
Long Abstract:
In this panel, we aim to discuss the intersection of knowledge, methodology and ethics developing around autism as experience, research object and political identity. Current debates around autism and autism research show two main approaches. The first advocates for participatory or emancipatory research with or by autistic people and autistic communities (see, for example, Pellicano 2022; Chown et al 2017). The second argues that we need to re-centre efforts on finding treatments and cures for those for whom existing approaches are deemed insufficient.
The points at the centre of the debate reflect ongoing controversies around the autism diagnosis and its transformations over time, as well as around who is legitimated to talk about autistic experiences. The controversies will likely increase until the definition of autism crystallizes again with the publication of the DSM-6. This panel seeks to explore whether those working on autism research can move beyond understanding participatory, autistic-led or coproduced research and more traditional biomedical research on autism as necessarily in conflict. The panel proposes that it is necessary both to think more critically about lived experience and to explore the implicit ableism and Eurocentrism of biomedical constructions of autism. We will discuss theories and methods for enhancing the reflexivity of conceptual research while keeping sight of the role of empirical research in understanding the heterogeneity of autistic people’s experiences globally. We intend further to use autism as both a case study and a prism to explore wider issues of being subjects and objects of research, and of voice, advocacy and identity within neuro-medical subjectivities.
Accepted papers:
Session 1 Friday 19 July, 2024, -Paper short abstract:
I will reflect on anthropological research with autistic children and adults, the unlearning of neurotypical modes of meeting and the co-creation of neurodiverse attunements. The possibilities for expanded research methods produced by these engagements will be explored.
Paper long abstract:
In this paper I reflect on long-term research with autistic children and adults and learning non-normative communication styles. In this context, normative modes of communicating, that predominantly focus on speech and linguistically driven tempos of back and forth, needed to be unlearned. Instead, my attention shifted to the sensory worlds and embodiments of my interlocutors, and their own ways of communicating. By following these ways of being I attuned to neurodiverse modes and rhythms of meeting.
I offer a novel kind of approach - sensory-rhythmic attention - to conceptualise these instances of neurodiverse attunement. These insights are of importance for thinking about novel research methods. They provide alternative ways to think about ethnographic methods and participant observation in the context of neuro-medical subjectivities. Sensory-rhythmic attention as method prioritizes leaning into modes of being with. It importantly ruptures prevailing anthropological, and ableist, emphases on spoken conversation as a route to describing the perspectives of interlocutors. The approach detailed allows an acknowledgement of the multiple scales and temporalities of anthropological research methods, offering new possibilities.
Paper short abstract:
This paper proposes that autistic-led autism research illuminates the norms of patient-centred medicine and the subsequent socio-cultural constraints on transformative autism research. I draw on the idea of disability as a rupture that summons new understandings of health for marginalised subjects.
Paper long abstract:
In the Transatlantic region, autistic self-advocacy and patient-centred medicine have catalysed autistic-led and participatory research on autistic health and illness. However, autistic-led research on autism can also be understood through Wolf-Meyer and Friedner’s conception of disability as rupture (2022), where autism ‘serves as a foil to rupture everyday expectations of bodies and their capacities’ and, provides a means to illuminate neglected pathways to health for marginalised groups. Autistic-led research has shown the relevance of societal stigma and identity management to autistic people’s mental health (e.g. Kapp et al 2019; Pearson and Rose 2023); it has shown how external barriers to accessing healthcare (Grant, A. et al. 2023); and identified health phenomena that are specific to autistic ways of being (Kapp 2019). Yet, the majority of funding continues to be directed at biological research on a cure for autism, which perpetuates stigma (Turnock et al 2022).
This paper examines whether the contexts of advocacy and patient-centred medicine have supported the aims of autistic autism researchers for transformative research on the causes of autistic illness and suffering. It will introduce two instances (ASPIRE; Crompton 2020) wherein autistic-led research deploys methods and frameworks that unravel the foundational assumptions of patient-centred medicine in the region, namely its implicit individualism, ableism and Eurocentrism. This paper concludes that, while the prevailing norms of patient-centred medicine constrain expressions of autistic knowledge about health beyond the subfield of autism research, the processes of ‘making and doing’ such research are transformative for those involved.
Paper short abstract:
Considering autism as a lens through which to analyse social changes, I explore the transformations of sociality and communication shaped by neoliberal ideologies of subjectivity. I draw on the idea of the looping effect to explore the porous boundaries between normality, ability and disabilities.
Paper long abstract:
In recent decades, one of the salient features of the debate on autism has been its focus on the increase in diagnoses. Various explanations for the phenomenon – both biomedical and social – have been proposed: these include a redefinition of the autistic condition and a greater understanding of the autistic experience. However, in the biomedical and psychiatric fields, autism is still interpreted as a deficit and not as a difference. Autistic people are still described as lacking social skills and the ability to understand neurotypical forms of communication. Following this model, many available therapies aim to compensate for these alleged deficits. However, the social and communication skills considered appropriate are not innate but socially, culturally and historically determined. In this presentation, drawing on different sources and methodologies, including documentary research, analysis of medical literature and auto-ethnography, I explore a looping effect between autism and society. With the term “looping effect”, philosopher of science Ian Hacking defined how a classification – e.g. an autism diagnosis – and the people classified interact and are mutually transformed in the process.
In this paper, by considering autism as a lens through which to understand social transformation, I analyse another looping effect: how new ideas (and ideology) of normality redefine disability. Specifically, I examine how new ideas of sociality, developing in particular in the Global North and influenced by a neoliberal approach to individuality, are transforming the boundaries of appropriate behaviour and how these changes are impacting the definition of autism.