Tracing disorder across theories of autism, empathy, and mental health care

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

“…We argue that the key to moving the field forward is, therefore, the adoption of an appropriately critical stance that starts in a different place from where it tends to be now (Parsons et al 2017a), such that social inclusion, perspectives, and agency and participation become the conceptual and methodological means for shaping research questions, designs, objectives, and the eventual utilisation of outcomes. These ideas are in line with: Fletcher-Watson et al (2018), reporting on their seminar series focusing on the meaningful participation of autistic people in research more generally; Beck's (2018) rethinking of what empathy means in autism research; and Robertson's (2009) analysis of quality of life and neurodiversity. Our roadmap for research in the autism and technology field (Table 2) provides the basis for thinking differently about research and, therefore, doing research differently.…”

“…Applying Freire's lens to the autism and technology field, autistic people have been, and in many ways continue to be, the oppressed in Freireian terms, not least because (usually non-autistic) researchers have traditionally held all the power and autistic people have not always been involved in ways that move beyond the role of passive participant. This is beginning to change in some areas (for example, Beck 2018;Chown et al 2017;Fletcher-Watson et al 2018) but such approaches represent the exception rather than the norm.…”

“…Important questions were raised about who is defined as having the 'problem'; whether this should be characterised as a 'problem' in any case and, therefore, where and for whom does the 'problem' lie? Such questions are also represented in Milton's (2012) characterisation of the 'doubleempathy problem', which discusses that the 'problem' (and, therefore, answers provided by research) is generally identified as being located within the autistic individual; that is, as the person having difficulties in understanding and communicating within neurotypical assumptions and contexts (Beck 2018). However, as one of our stakeholders said: 'Rather than using technology to enhance individuals with ASCs' understanding of us, can we use technology to enhance our understanding of them?…”

“…(1970,76) Seminar stakeholders highlighted how important it is to critically examine the cultural assumptions embedded in the field; for example, questioning 'is there only one right way to communicate?' and whether there should be 'Theories of mind' rather than a dominant 'Theory of Mind' (see also Beck 2018). Mark Bushby, an autistic self-advocate who presented at the second seminar (see Yuill et al 2015), cautioned about the danger of 'neurotypical syndrome', which is 'assuming their way is the right way and that way is superior' (http://digitalbubbles.org.uk/?page_id=904).…”

Stories of Madness: Exploring Resistance, Conformity, Resiliency, Agency, and Disengagement in Mental Health Narratives

“…Somewhat astonishingly, his compassion was growing more than his anger from being bullied, as he believed those experiences gave him a deeper empathy for his peers. The empathy he was building transcended expressions for individual persons, but rather was operating in a fluid and expressive network that encompassed everyone; both his friends and enemies (Beck, 2018).…”