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Articles

The experience of participation: eliciting the views of children on the autism spectrum

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Pages 1700-1708 | Received 20 Jul 2020, Accepted 25 Mar 2021, Published online: 26 Mar 2021

References

  • Askari S, Anaby D, Bergthorson M, et al. Participation of children and youth with autism spectrum disorder: a scoping review. Rev J Autism Dev Disord. 2015;2(1):103–114.
  • Imms C, Granlund M, Wilson PH, et al. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol. 2017;59(1):16–25.
  • Simpson K, Adams D, Bruck S, et al. Investigating the participation of children on the autism spectrum across home, school, and community: a longitudinal study. Child Care Health Dev. 2019;45(5):681–687.
  • Egilson ST, Jakobsdóttir G, Ólafsdóttir LB. Community participation and environment of children with and without autism spectrum disorder: parent perspectives. Scand J Educ Res. 2017;24(3):187–196.
  • Fletcher-Watson S, Adams J, Brook K, et al. Making the future together: shaping autism research through meaningful participation. Autism. 2019;23(4):943–953.
  • Nicholas DB, Orjasaeter JD, Zwaigenbaum L. Considering methodological accommodation to the diversity of ASD: a realist synthesis review of data collection methods for examining first-person experiences. Rev J Autism Dev Disord. 2019;6(2):216–232.
  • World Health Organization. International classification of functioning, disability and health: children and youth version (ICF-CY). Geneva (Switzerland): World Health Organization 2007.
  • Hilton CL, Crouch MC, Israel H. Out-of-school participation patterns in children with high-functioning autism spectrum disorders. Am J Occup Ther. 2008;62(5):554–563.
  • Hochhauser M, Engel-Yeger B. Sensory processing abilities and their relation to participation in leisure activities among children with high-functioning autism spectrum disorder (HFASD). Res Autism Spectrum Disord. 2010;4(4):746–754.
  • King G, Law M, King S, et al. Children’s assessment of participation and enjoyment (CAPE). San Antonia (TX): PsychCorp; 2004.
  • Adair B, Ullenhag A, Rosenbaum P, et al. Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review. Dev Med Child Neurol. 2018;60(11):1101–1116.
  • Brewster S, Coleyshaw L. Participation or exclusion? Perspectives of pupils with autistic spectrum disorders on their participation in leisure activities. Br J Learn Disabil. 2011;39(4):284–291.
  • Fayette R, Bond C. A systematic literature review of qualitative research methods for eliciting the views of young people with ASD about their educational experiences. Euro J Special Needs Educ. 2018;33(3):349–365.
  • Morris C. Measuring participation in childhood disability: how does the capability approach improve our understanding? Dev Med Child Neurol. 2009;51(2):92–94.
  • Preece D, Jordan R. Obtaining the views of children and young people with autism spectrum disorders about their experience of daily life and social care support. Br J Learn Disabil. 2010;38(1):10–20.
  • Brown BT, Morris G, Nida RE, et al. Brief report: making experience personal: internal states language in the memory narratives of children with and without Asperger’s disorder. J Autism Dev Disord. 2012;42(3):441–446.
  • Harrington C, Foster M, Rodger S, et al. Engaging young people with Autism Spectrum Disorder in research interviews. Br J Learn Disabil. 2014;42(2):153–161.
  • Lewis A. Methodological issues in exploring the ideas of children with autism concerning self and spirituality. J Religion Disabil Health. 2009;13(1):64–76.
  • MacLeod AG, Lewis A, Robertson C. “Charlie: please respond!” Using a participatory methodology with individuals on the autism spectrum. Int J Res Meth Educ. 2014;37(4):407–420.
  • Beresford B, Rabiee P, Sloper P. Priorities and perceptions of disabled children and young people and their parents regarding outcomes from support services. Vol. 15. York (UK): University of York; 2007.
  • Tesfaye R, Courchesne V, Yusuf A, et al. Assuming ability of youth with autism: synthesis of methods capturing the first-person perspectives of children and youth with disabilities. Autism. 2019;23(8):1882–1896.
  • Danker J, Strnadova I, Cumming TM. Engaging students with autism spectrum disorder in research through participant-driven photo-elicitation research technique. The. Australas J Spec Educ. 2017;41(1):35–50.
  • Steinbrenner J, Hume K, Odom S, et al. Evidence-based practices for children, youth, and young adults with autism. Chapel Hill (NC): The University of North Carolina at Chapel Hill; Chapel Hill (NC): Frank Port Graham Child Development Institute; National Clerainghouse on Autism Evidence and Practice Review Team; 2020.
  • Jenkin E, Wilson E, Campain R, et al. The principles and ethics of including children with disability in child research. Child Soc. 2020;34(1):1–16.
  • Patton MQ. Qualitative research and evaluation methods. 4th ed. Los Angeles (CA): Sage; 2015.
  • Loomes R, Hull L, Mandy WPL. What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. J Am Acad Child Adolesc Psychiatry. 2017;56(6):466–474.
  • Rutter M, Bailey A, Berument S, et al. Social communication questionnaire. Los Angeles (CA): Western Psychological Services; 2003.
  • Eaves L, Wingert H, Ho H, et al. Screening for autism spectrum disorders with the social communication questionnaire. Dev Behav Pediatr. 2006;27:95–103.
  • Bruininks R, Woodcock R, Weatherman R, et al. Scales of independent behavior - revised comprehensive manual. Rolling Meadows (IL): Riverside Publishing; 1996.
  • Flewitt R. Conducting research with young children: some ethical considerations. Early Child Dev Care. 2005;175(6):553–565.
  • Thomas N, O’Kane C. The ethics of participatory research with children. Children Soc. 1998;12(5):336–348.
  • Nicolaidis C, Raymaker D, Kapp SK, et al. The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism. 2019;23(8):2007–2019.
  • Pascal C, Bertram T. Listening to young citizens: the struggle to make real a participatory paradigm in research with young children. Euro Early Childhood Educ Res J. 2009;17(2):249–262.
  • Loyd D. Gaining views from pupils with autism about their participation in drama classes. Br J Learn Disabil. 2015;43(1):8–15.
  • Read JC, MacFarlane S. Using the fun toolkit and other survey methods to gather opinions in child computer interaction. Paper presented at the 2006 conference on Interaction Design and Children; 2006 June; Tampere, Finland.
  • Imms C, Adair B, Keen D, et al. ‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev Med Child Neurol. 2016;58(1):29–38.
  • Thorne S, Kirkham SR, MacDonald-Emes J. Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Res Nurs Health. 1997;20(2):169–177.
  • Brantlinger E, Jimenez R, Klingner J, et al. Qualitative studies in special education. Exceptional Cildren. 2005;71(2):195–207.
  • Bengtsson M. How to plan and perform a qualitative study using content analysis. NursingPlus Open. 2016;2:8–14.
  • Creswell J. Qualitative inquiry and research design. 3rd ed. Thousand Oaks (CA): SAGE; 2013.
  • Rosenberg L, Bart O, Ratzon NZ, et al. Personal and environmental factors predict participation of children with and without mild developmental disabilities. J Child Fam Stud. 2013;22(5):658–671.
  • Maciver D, Rutherford M, Arakelyan S, et al. Participation of children with disabilities in school: a realist systematic review of psychosocial and environmental factors. PLoS One. 2019;14(1):e0210511.
  • Mazurek MO, Wenstrup C. Television, video game and social media use among children with ASD and typically developing siblings. J Autism Dev Disord. 2013;43(6):1258–1271.
  • Jewitt C. An introduction to using video for research. Southampton (UK): National Centre for Research Methods; 2012. (National Centre for Research Methods Working Paper).
  • Scott-Barrett J, Cebula K, Florian L. Listening to young people with autism: learning from researcher experiences. Int J Res Meth Educ. 2019;42(2):163–184.
  • Obrusnikova I, Cavalier AR. Perceived barriers and facilitators of participation in after-school physical activity by children with autism spectrum disorders. J Dev Phys Disabil. 2011;23(3):195–211.
  • Maxwell G, Augustine L, Granlund M. Does thinking and doing the same thing amount to involved participation? Empirical explorations for finding a measure of intensity for a third ICF-CY qualifier. Dev Neurorehabil. 2012;15(4):274–283.
  • Simpson K, Keen D, Adams D, et al. Participation of children on the autism spectrum in home, school, and community. Child Care Health Dev. 2018;44(1):99–107.

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