Autistic autobiography and hermeneutical injustice

Dinishak, Janette

doi:10.1111/meta.12514

Cited by 8 publications

(8 citation statements)

References 36 publications

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“…Broadly, epistemic injustice refers to a range of injustices carried out against a person in their capacity as a knower or a producer of knowledge; see Catala et al (2021) for a detailed discussion of the many types of epistemic injustice autistic people face. In short, autistic people face both testimonial injustice, in which biases against autistic people serve to diminish their credibility as epistemic agents; and hermeneutical injustice, in which the epistemic resources (e.g., concepts and language) necessary for autistic people to understand and articulate their experiences are lacking ( Fricker, 2007 ; Catala et al, 2021 ; Dinishak, 2021 ). Addressing this epistemic injustice is both a necessary precondition for, and a likely result of, effective participatory autism research.…”

Section: Discussionmentioning

confidence: 99%

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

et al. 2022

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Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.

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Section: Discussionmentioning

confidence: 99%

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

et al. 2022

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“…Services and supports might be provided under medical assumptions. Language used by neurotypicals might not even offer neurodivergent people the vocabulary to fully articu-late their experiences (Belek, 2019;Dinishak, 2021), let alone to interpret them in a positive, non-deficit-oriented way (Dinishak, 2021). Indeed, autistic adolescents report few opportunities for any kind of learning about their neurotype (Jarrett, 2014).…”

Section: Dwyermentioning

confidence: 99%

The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers?

Dwyer

2022

Human Development

122

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This paper presents the concepts of “neurodiversity” and the “neurodiversity approaches” towards disability. This paper discusses how confusion regarding the meaning of these concepts exacerbates debate and conflict surrounding the neurodiversity approaches. For example, some claim the neurodiversity approaches focus solely on society and denies contributions of individual characteristics to disability (a controversial stance), whereas this paper joins other literature in acknowledging the contributions of both individual and society to disability. This paper also addresses other controversies related to neurodiversity, such as uncertainty regarding the scope of the approaches – to whom do they apply? – and their implications for diagnostic categories. Finally, this paper provides recommendations for developmental researchers who wish to carry out neurodiversity-aligned research: scholars are urged to study both individual neurodivergent people and the contexts around them; to consider both strengths and weaknesses; to recognize their own biases; and to listen to and learn from neurodivergent people.

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“…Rather, these qualitative methods provide nuanced accounts of particular people in a particular place and time. Given the heterogeneity of autism, and the great diversity of lived autistic experience (Dinishak, 2021 ), that particularity is appropriate to the study of autistic lives.…”

Section: Limitations and Future Directionsmentioning

confidence: 99%

“Peas in a pod”: Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults

Lilley

Lawson

Hall

et al. 2022

J Autism Dev Disord

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In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: ‘conceptualising the Autistic family’, ‘creating Autistic community’, and ‘contesting Autistic identity’. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults.

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Autistic autobiography and hermeneutical injustice

Cited by 8 publications

References 36 publications

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers?

“Peas in a pod”: Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults

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