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Short abstract:

Reducing prognostic uncertainty requires distinguishing between physiological uncertainty about whether the proposed treatment can physiologically achieve the desired effect and normative uncertainty about whether the physiological effects of the treatment constitute an acceptable outcome.

Long abstract:

In the medical futility literature, distinctions are made between physiological and normative (or quantitative versus qualitative) futility, as these are two factors that influence whether a medical treatment can be considered futile or not. Physiological futility depends on the treatment’s capacity to achieve the desired effect, whereas normative futility depends on the desirability of the achievable outcome. Observations in various intensive care units and interviews with medical professionals, patients and family of patients show that the uncertainty regarding physiological futility is highly acknowledged and prognostic tools are developed to address it. Yet, the fieldwork also shows that normative futility judgments are often just as uncertain—not just due to uncertainty about the physiological outcome but also due to uncertainty about how the outcome will be experienced and evaluated. Additionally, there is uncertainty about how environmental, technological, contextual, and institutional support can impact said experience and evaluation. I argue that any serious quest to reduce (neuro)prognostic uncertainty requires distinguishing between uncertainty whether the proposed treatment can physiologically achieve the desired effect (physiological uncertainty) and uncertainty whether the physiological effects of the treatment constitute an acceptable outcome (normative uncertainty). For treatments and interventions designed to improve neurodiverse experiences, the normative uncertainty is especially high. I conclude that normative uncertainty can render normative futility judgments so undetermined that it is more accurate to say they require prediction rather than identification. Hence, (neuro)prognostic practices may require two—not one—predictions and, as a consequence, different parties may offer distinct expertise to inform such distinct predictions.

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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.

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.

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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.

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.

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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.

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.

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Short abstract:

Autistic joy challenges biomedical ideas that autistic people are “suffering” from autism. Through considering a multimodal ethnographic knitting project about autistic interests and passions, this paper argues that autistic joy shapes research beyond neurotypical norms.

Long abstract:

Biomedical approaches to autism position autistic people as “suffering” from autism. Further, such approaches promote the idea that autistic people lack emotions, along with the narrative capacity to express them. Autistic joy challenges such stereotypes, and it can also shape ways of doing research beyond neurotypical norms. This paper presents a project motivated by autistic joy to reflect on how practices of making—in this case, knitting—can promote more equitable ways of doing and presenting research. This methodological decision, based on the autistic researcher’s own passion and practice of knitting, was the starting point for a multimodal ethnographic project about autistic adults’ passions and intense interests, sometimes known colloquially as “special interests.” This project explored how U.S.-based autistic adults craft narratives that can change cultural concepts of autism, creating their own knowledges of what it means to be autistic. While these narratives might draw on biomedical concepts and categories, they also present autistic interests as a site of meaning-making and cultural production that exceeds biomedical descriptions of autism. Through participatory textile methods, this project explored new representational possibilities for such narratives and materialized autistic joy through making.

In considering autistic joy, this project shows how autistic “lived experience” is not something to be slotted into existing research paradigms but an opportunity to consider the entwined nature of concept, method, and ethics. This project considers neurodiversity as not simply an ontological fact, but as an epistemological opportunity to make diverse forms of knowledge.