Improving research about us, with us: a draft framework for inclusive autism research

Chown, Nick; Robinson, Jackie; Beardon, Luke; Downing, Jillian; Hughes, Elizabeth; Leatherland, J. F.; Fox, Katrina; Hickman, Laura; Macgregor, D. H.

doi:10.1080/09687599.2017.1320273

Cited by 145 publications

(120 citation statements)

References 21 publications

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“…3 Among those considering sex as representing an intensive interest (corresponding to DSM criteria of restricted or repetitive interests), some represent it as being sexually attracted to one's 'special interest' 4 or having sex as a special interest in itself. 5 This is true to the extent that for some contributors, strong focus and intensity 6 is a necessary condition for sexual desire. For example (as part of a debate between contributors about living with an autistic person, largely discussed in a tongue in cheek fashion), a contributor writes:…”

Section: Sexual Intensity Spectrummentioning

confidence: 99%

Not Doing it Properly? (Re)producing and Resisting Knowledge Through Narratives of Autistic Sexualities

Rosqvist

Jackson-Perry

2020

Sex Disabil

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Autism is conceptualized in much scientific literature as being associated with restricted and repetitive interests, characterized by an 'empathy deficit', and negatively impacting social communication. Meanwhile, 'good and healthy' sexuality is largely considered to be a social endeavor: asexuality and sexualities defined by acts rather than by partner gender-for example kink or BDSM-are broadly pathologized. Perhaps, therefore, first-hand autistic experiences of sexuality challenge existing assumptions about 'good and healthy' sexualities within couplehood. As a theoretical starting point to explore this potential, we revisit Gayle Rubin's notion of 'sex within the charmed circle' to ask whether autistic sexuality can ever truly 'fit' within this (neurotypically defined) virtuous sexual arena. We further consider the ways in which the intersection of autism and sexuality is understood and experienced in first-hand autistic accounts of sexuality within a specific context, through analysis of a Swedish online discussion forum in which autistic people discuss sexuality. In doing so we seek both to better understand autistic sexual experience, and to track and deconstruct potentially restrictive assumptions of (non-autistic) couple sexuality more generally. We also consider ways in which assumptions of deficit concerning both nonnormative sexualities and autism may have a deleterious effect on autistic people and on research more broadly, limiting theoretical and conceptual understandings of autism and autistic ways of (sexual) being by a default comparison to sexual and neurological norms.

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Section: Sexual Intensity Spectrummentioning

confidence: 99%

Not Doing it Properly? (Re)producing and Resisting Knowledge Through Narratives of Autistic Sexualities

Rosqvist

Jackson-Perry

2020

Sex Disabil

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“…Critically, an autistic and non-autistic researcher worked together to design and conduct this study, a participatory approach which has been growing (e.g. Chown, Robinson, et al, 2017 ). The research question for this study was ‘ what are the experiences of autistic people who have dropped out of university?…”

mentioning

confidence: 99%

Dropping out and moving on: A qualitative study of autistic people’s experiences of university

Cage

Howes²

2020

Autism

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Autistic people are at high risk of dropping out of university, but little research has examined this issue. Fourteen autistic people participated in semi-structured interviews examining their experiences at university and the reasons they had dropped out. Thematic analysis identified patterns in participants’ responses. Themes were categorised as systemic issues, challenges within university or life after dropping out. Systemic issues centred around accessing diagnosis, autism understanding, mental health and outsider status. Challenges at university included culture shock, becoming disengaged, lack of proactive support and perceived inevitability of dropping out. Finally, life after dropping out was characterised by processing of trauma and shame, and realisation of doing ‘what’s right for you’. Together, these themes suggest that many improvements could be made at universities, such as more proactive support and creating more accessible environments. Societal-level change is also needed to improve educational opportunities for autistic people. Lay abstract Many autistic people now go to university, but many of them also drop out of their studies. In fact, it is believed that autistic people are at higher risk of dropping out, but little research has been done to understand why this is happening. This research used interviews to take an in-depth look at 14 autistic people’s experiences of dropping out of university. All the things the participants talked about were examined closely by the researchers who identified common themes in what the participants discussed. The first set of themes captured some overarching issues faced by autistic people, such as difficulties with getting diagnosed, a lack of autism understanding, mental health challenges and feeling like an outsider. The next themes were organised within challenges faced at university, including a feeling of culture shock, becoming disengaged from one’s studies, a lack of proactive support from their university and a feeling that dropping out became inevitable. Finally, there were themes about life after dropping out, which involved a sense that the experience at university had been traumatic and shameful, but they believed people had to do what is right for them. All of these themes suggest that universities need to be better at supporting autistic people when they first come to university, and that they should actively offer clear support throughout and try and make the university environment more accessible for everyone, to ensure more autistic people have a positive university experience.

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“…However, qualifications appear to be attached to the level of control that is awarded to lived experience researchers through notions of reciprocated accountability and non-disabled reflection and interpretation. In terms of reciprocated accountability, Stone and Priestly (1996) as cited in Chown et al (2017), speak of the accountability of researchers with disability to non-disabled investigators as well as the answerability of non-disabled researchers to those with lived experience. With regard to non-disabled reflection and interpretation, Callus (2019) supports the value of non-disabled researchers considering perspectives and understanding them via their personal outlook.…”

Section: Discussionmentioning

confidence: 99%

Non-disabled Space Invaders! A Study Critically Exploring the Scholarly Reporting of Research Attributes for Persons With and Without Disability

Mellifont¹

2020

SSJ

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Social justice requires that the “nothing about us without us” disability inclusion mantra not be rejected or watered down in knowledge production activities. Appreciating the need for a greater representation of disability in these activities, this investigative study aims to (a) determine if there is a statistically significant difference in the median research attribute reporting scores between articles whose content refers to the term “researchers with lived experience” and articles whose content refers to “non-disabled researchers,” and (b) to critically discuss how the scholarly literature reports on the attributes of researchers with and without disability. Enabling this exploration, this study has applied the Mann-Whitney U test and thematic analysis to a purposive sample of 20 articles that were retrieved from a Scopus database search. Findings reveal that the median score of reported research attributes was statistically significantly higher in the group of articles whose content referred to the term researchers with lived experience than in the articles that referred to non-disabled researchers. Results also highlight attributes of empathy, ability, rigor and activism that are reportedly shared across the two groups of articles. Crucially, attention is given to a theme reported as unique to the researchers with disability group. This is the attribute of having firsthand knowledge of disability (i.e., lived experience). The study concludes by recognising that lived experience, when incorporated throughout the research process, can help to redress deficiencies that might otherwise be present.

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Improving research about us, with us: a draft framework for inclusive autism research

Cited by 145 publications

References 21 publications

Not Doing it Properly? (Re)producing and Resisting Knowledge Through Narratives of Autistic Sexualities

Not Doing it Properly? (Re)producing and Resisting Knowledge Through Narratives of Autistic Sexualities

Dropping out and moving on: A qualitative study of autistic people’s experiences of university

Non-disabled Space Invaders! A Study Critically Exploring the Scholarly Reporting of Research Attributes for Persons With and Without Disability

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