Aoife Munroe
Mary Immaculate College, Limerick, Ireland ([email protected])
Traditionally, research on the topic of autism was primarily carried out on, about or for autistic individuals (Chown et al., 2017). However, there has been a gradual shift away from this approach in recent times with momentum for inclusive and neurodiversity affirming research growing (Pellicano and Stears, 2011). Encouraging steps have been made in autism research in terms of establishing research priorities and engaging autistic people and their families in research. Despite this, research with autistic young people remains scant (Eilis, 2017). Inclusive research must take place with members of the relevant community (Fletcher-Watson et al., 2021). Furthermore, thorough reflection on the ethical considerations is required when working with vulnerable populations to ensure inclusive research practice. The current study aimed to amplify the voices of autistic girls and provide them with the opportunity to share their experiences of mainstream education provision. Participatory research has been identified as a transformative approach to truly ethical and inclusive research, however, Pickard et al. (2022) highlight that early career researchers are often limited in their capacity to facilitate truly participatory research practices, as a result of time, funding and support. This paper details how the researcher adopted the Inclusive Practices for Neurodevelopmental Research model as a framework to attend to the ethical considerations for including autistic girls in the current study. Fletcher-Watson et al. (2021) appreciates different degrees of inclusion depending on the resources available, the scale of the research and the probable impact. Six key pillars are identified as essential in the delivery of inclusive research within this model. Each of the six pillars will be introduced and detail provided on how the researcher responded to the pillar in terms of its practical implementation. This paper will have implications for future researchers in terms of learning from the actions of the current project and continuing to improve practice when engaging with inclusive research.
Keywords |
Inclusive Research, Ethics, Ethical Practice, Autism, Neurodiversity, Participation |
References |
[1] Chown, N., Robinson, J., Beardon, L., et al., (2017) 'Improving research about us, with us: a draft framework for inclusive autism research', Disability and Society, 32(5), 720-734. [2] Pellicano, E. and Stears, M. (2011) ‘Bridging autism, science and society: moving toward an ethically informed approach to autism research’, Autism Research, 4(4), 271-282. [3] Eilis, J. (2017) ‘Researching the Social Worlds of Autistic Children: An Exploration of How an Understanding of Autistic Children’s Social Worlds is Best Achieved’, Children & Society, 31(1), 23-36. [4] Fletcher-Watson, S., Brook, K., Hallett, S., Murray, F. and Crompton, C.J. (2021) 'Inclusive Practices for Neurodevelopmental Research', Current Developmental Disorder Reports, 8, 88-97. [5] Pickard, H., Pellicano, E., den Houting, J., & Crane, L. (2022) ‘Participatory autism research: Early career and established researchers’ views and experiences’, Autism, 26(1), 75-87. |