Picture my well-being: Listening to the voices of students with autism spectrum disorder

Danker, Joanne; Strnadová, Iva; Cumming, Therese M.

doi:10.1016/j.ridd.2019.04.005

Cited by 35 publications

(42 citation statements)

References 32 publications

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“…Moreover, these findings are consistent with previous reviews of ASD literature with regards to ASD and the experience of anxiety (van Steensel et al, 2011). This increased risk of anxiety for autistic individuals results in the identified increased risk of discomfort and/or stress for autistic individuals when participating in research, particularly if this research requires them to take part in interviews where they need to respond directly to questions (Danker, Strnadova & Cumming, 2019;Tozer, 2014). As suggested by Midgley et al (2014), it can be this increased risk of harm experienced by marginalised groups and the focus of ethics committees on the construct of non-maleficence, or 'do no harm', that may actually discourage researchers from engaging in research with these groups.…”

Section: The Value Of Respect For Human Beings Is Central To the National Statement On Ethicalsupporting

confidence: 88%

“…To address this, it is recommended that researchers employ universal design throughout the research design to both minimise this risk of increased anxiety, and manage this risk effectively throughout the research process (NHMRC, 2007(NHMRC, [updated 2018). Universal design strategies for research provide a sliding scale of support, as required by the individual, along with participant choice regarding their involvement (Danker et al, 2019). Strategies suggested for the current research project included participant choice on the number and length of interviews, as well as a choice of place and time of interviews.…”

Section: The Value Of Respect For Human Beings Is Central To the National Statement On Ethicalmentioning

confidence: 99%

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Researching Within the Educational Margins

2020

Palgrave Studies in Education Research Methods

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The following chapter will address the many challenges faced when conducting research with the autistic community. In particular, the considerations, challenges and wicked problems that were encountered as the researcher worked towards obtaining ethical clearance for the research study 'Self-determination for the rest of my life: Young autistic adults' insights into the interaction between Queensland secondary school transition practices and post-school quality of life'. The question of why and how autistic people came to be marginalised within education and educational research, and the impact that this has for the people themselves and for research outcomes will be addressed. The specific and evolving strategies employed to address some of the challenges and wicked problems within this research project are shared, while considering the processes needed for developing effective, and at times innovative, strategies to effectively include this marginalised group. Throughout the chapter, concepts and approaches for further engaging the autistic community in communicating their experiences and articulating their voices are woven into the discussion, with the aim of supporting researchers, autistic people and the wider community to engage in reflective dialogues about effective educational research with the autistic community.Autism spectrum disorder (ASD) is a condition in which individuals display differences in how they engage in social communication. Rigid and repetitive interests and behaviours are also exhibited (Diagnostic and Statistical Manual 5 th edition [DSM 5], 2013). Contemporary understandings recognise one condition, autism spectrum disorder, with a strong emphasis on acknowledging the wide spectrum and levels of differences each individual experiences, and the supports required by each (DSM 5, 2013: Vaccaro, Kimball, Wells & Ostiguy, 2015.Thus, the use of the umbrella term 'autism' throughout the chapter is utilised, whilst acknowledging the significant variation that exists between individuals with the same diagnosis.The researcher has both a personal and professional interest in this topic, as both the parent of a young autistic adult, and as an educator who has worked for many years supporting autistic people within the Queensland education system in Australia. Both experiences have shown that education can, and often does, function as an agent of marginalisation for people with autism. Research supports this experience, finding that the majority of individuals with autism experience poor academic and social outcomes throughout school and poor post

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Section: The Value Of Respect For Human Beings Is Central To the National Statement On Ethicalsupporting

confidence: 88%

Section: The Value Of Respect For Human Beings Is Central To the National Statement On Ethicalmentioning

confidence: 99%

Researching Within the Educational Margins

2020

Palgrave Studies in Education Research Methods

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“…Situations of interaction were sometimes associated with a feeling of sensory overload (Elwin et al, 2013; Madriaga, 2010; Smith & Sharp, 2013; Suplee et al, 2014). The visual challenges, the hyperacusis and the intolerance of odours, among others, hindered daily communication and relationships, and created problems at work or school (Anderson et al, 2020; Danker et al, 2019; Davidson, 2010; Landon et al, 2016; A. E. Robertson & Simmons, 2015; Robledo et al, 2012; Tint & Weiss, 2018).…”

Section: Resultsmentioning

confidence: 99%

The sensory experiences of autistic people: A metasynthesis

Sibéoni

Massoutier

Valette

et al. 2022

Autism

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Qualitative literature reports the sensory experiences of autistic individuals in the first person. Following a thematic synthesis procedure, this metasynthesis aimed to explore specifically the lived experience of these sensory features. Four databases were systematically searched for qualitative studies describing sensory issues reported by autistic individuals. Article quality was assessed with the Critical Appraisal Skills Programme. Thematic analysis was used to identify and synthesise key themes. The 32 articles included reported data from 430 participants. Data analysis produced two themes structuring the sensory experiences of autistic people: (1) the everyday experience through body, thoughts and emotions, and (2) the relational experience, relationships being experienced as both a problem and a solution. Four dimensions are found in our results: physical, emotional, relational and social. Whereas a scientific approach to the sensory experience of autistic people is based on a cause–effect model, our results suggest that autistic people experience these dimensions holistically, as inseparable, and not in terms of cause and effect. This original finding brings new research perspectives, beyond the dichotomy between sensory features and social communications issues, and concrete implications within the health care system to provide more effective and respectful care to autistic people. Lay abstract Sensory atypicalities are very common among autistic people and are integrated in several theories and explanatory models of autism. Qualitative studies have explored these singular sensory experiences from the perspectives of autistic people themselves. This article gathers all these qualitative studies and provides original findings regarding the everyday sensory experience of autistic people, that is, around four dimensions – physical, emotional, relational and social – experienced holistically, as inseparable, and not hierarchically or in terms of cause and effect. Adopting this holistic view could improve the adaptation of the sensory environment in health care facilities and the training of professionals around this specific issue.

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“…Methodologically, photovoice also exposed researchers to the educational challenges disabled students face at school. This is knowledge that researchers otherwise would not have been able to access (Capewell, 2016;Danker et al, 2017Danker et al, , 2019Goodall, 2020;Mamaniat, 2014;Obrusnikova & Cavalier, 2011;Okyere et al, 2019;Zilli et al, 2020). Although authors did not report on their level of participant engagement, ABR allowed participants to carefully reflect on their educational experiences.…”

Section: Themesmentioning

confidence: 99%

Behind the Paintbrush: Understanding the Impact of Visual Arts-Based Research (ABR) in the Lives of Disabled Children and Youth as well as Methodological Insights in ABR Application

Moola

Buliung

Posa

et al. 2022

CJDS

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Arts-based research (ABR) makes many promises, including the opportunity to engage with embodied ways of being and knowing, raise social and political concerns, as well as to address novel, participant-led inquiries. In this critical narrative review of the literature, we examine how disabled children and youth employ ABR methods in research contexts by carefully examining studies that use visual ABR. A secondary aim is to glean methodological insights from the application of ABR to the lives of disabled children and youth to help foster this critical dialogue. We decided to undertake this narrative review of the literature to better understand how ABR is used in pediatric disability contexts.

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Picture my well-being: Listening to the voices of students with autism spectrum disorder

Cited by 35 publications

References 32 publications

Researching Within the Educational Margins

Researching Within the Educational Margins

The sensory experiences of autistic people: A metasynthesis

Behind the Paintbrush: Understanding the Impact of Visual Arts-Based Research (ABR) in the Lives of Disabled Children and Youth as well as Methodological Insights in ABR Application

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