‘We have so much to offer’: Community members’ perspectives on autism research

Article


Haar, Tori, Brownlow, Charlotte, Hall, Gabrielle, Heyworth, Melanie, Lawson, Wenn, Poulsen, Rebecca, Reinisch, Tamara and Pellicano, Elizabeth. 2024. "‘We have so much to offer’: Community members’ perspectives on autism research." Autism: the international journal of research and practice. https://doi.org/10.1177/13623613241248713
Article Title

‘We have so much to offer’: Community members’ perspectives on autism research

ERA Journal ID6119
Article CategoryArticle
AuthorsHaar, Tori, Brownlow, Charlotte, Hall, Gabrielle, Heyworth, Melanie, Lawson, Wenn, Poulsen, Rebecca, Reinisch, Tamara and Pellicano, Elizabeth
Journal TitleAutism: the international journal of research and practice
Number of Pages14
Year2024
PublisherSAGE Publications Ltd
Place of PublicationUnited Kingdom
ISSN1362-3613
1461-7005
Digital Object Identifier (DOI)https://doi.org/10.1177/13623613241248713
Web Address (URL)https://journals.sagepub.com/doi/10.1177/13623613241248713
AbstractAutism research is on the cusp of significant change. There are mounting calls from Autistic self-advocates, researchers, and other scientists for a paradigm shift in autism research. Yet little is known about what non-academic members of the Autistic and autism communities think about autism research. We – a team of Autistic and non-autistic researchers – addressed this gap by conducting a secondary analysis of data collected as part of an in-depth research priority-setting exercise in Australia. Specifically, we asked: what are community members’ views and experiences of autism research? In immersive online text-based focus-group discussions held over 10 days, 55 community members, including Autistic people, family members, and professionals, shared their perspectives and experiences of autism research. We analysed the data using reflexive thematic analysis, adopting an inductive approach. Respondents resoundingly agreed that autism research could play a powerful role in helping to shape good Autistic lives, yet they felt that to do that effectively, major changes were needed. These included a shift away from overly narrow, deficits-based views of Autistic people to a greater focus on contextual factors, and more community-led decisions in what is researched and how. These findings highlight new possibilities for research processes, findings, and translation.
Keywordsengagement; neurodiversity; participatory research; translational research
Contains Sensitive ContentDoes not contain sensitive content
ANZSRC Field of Research 2020420699. Public health not elsewhere classified
Byline AffiliationsMacquarie University
Cooperative Research Centre for Living with Autism (Autism CRC), Australia
Reframing Autism, Australia
University of Southern Queensland
ORIMA Research, Australia
University College London, United Kingdom
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Bertilsdotter Rosqvist, Hanna, Brownlow, Charlotte and O'Dell, Lindsay. 2015. "An association for all: notions of the meaning of autistic self-advocacy politics within a parent-dominated autistic movement ." Journal of Community and Applied Social Psychology. 25 (3), pp. 219-231. https://doi.org/10.1002/casp.2210
SPSS explained, 2nd ed
Hinton, Perry R., McMurray, Isabella and Brownlow, Charlotte. 2014. SPSS explained, 2nd ed. London, United Kingdom. Routledge.
A critical consideration of the use of therapeutic recordings in the training and professional development of psychologists
Lamont-Mills, Andrea, Christensen, Steven and Brownlow, Charlotte. 2014. "A critical consideration of the use of therapeutic recordings in the training and professional development of psychologists." Journal of Critical Psychology, Counselling, and Psychotherapy. 14 (4), pp. 276-285.
Deficit and asset identity constructions of single women without children living in Australia: an analysis of discourse
Addie, Elizabeth and Brownlow, Charlotte. 2014. "Deficit and asset identity constructions of single women without children living in Australia: an analysis of discourse." Feminism and Psychology. 24 (4), pp. 423-439. https://doi.org/10.1177/0959353514539463
Constructing a theory of mind: reflections by people with autism
O'Dell, Lindsay and Brownlow, Charlotte. 2004. "Constructing a theory of mind: reflections by people with autism." British Psychological Society Developmental Psychology Conference (2004). Leeds, United Kingdom 02 - 05 Sep 2004
SPSS explained
Hinton, Perry, Brownlow, Charlotte, McMurray, Isabella and Cozens, Bob. 2004. SPSS explained. London, United Kingdom. Routledge.
Ethical issues for qualitative research in on-line communities
Brownlow, Charlotte and O'Dell, Lindsay. 2002. "Ethical issues for qualitative research in on-line communities." Disability and Society. 17 (6), pp. 685-694. https://doi.org/10.1080/0968759022000010452
The citizen-worker: ambivalent meanings of 'real jobs', 'full citizenship' and 'adulthood' in the case of autistic people
Bertilsdotter Rosqvist, Hanna, O'Dell, Lindsay and Brownlow, Charlotte. 2014. "The citizen-worker: ambivalent meanings of 'real jobs', 'full citizenship' and 'adulthood' in the case of autistic people." Australian Community Psychologist. 26 (1), pp. 18-27.
Autism as a form of biological citizenship
Brownlow, Charlotte and O'Dell, Lindsay. 2013. "Autism as a form of biological citizenship." Davidson, Joyce and Orsini, Michael (ed.) Worlds of autism: across the spectrum of neurological difference. Minneapolis, MN. United States. University of Minnesota Press. pp. 97-114
Exploring the potential for social networking among people with autism: challenging dominant ideas of 'friendship'
Brownlow, Charlotte, Bertilsdotter Rosqvist, Hanna and O'Dell, Lindsay. 2015. "Exploring the potential for social networking among people with autism: challenging dominant ideas of 'friendship'." Scandinavian Journal of Disability Research. 17 (2), pp. 188-193. https://doi.org/10.1080/15017419.2013.859174
Becoming an autistic adult: exploring the transitions of young people with autism from education/care to working life
O'Dell, Lindsay, Brownlow, Charlotte and Bertilsdotter Rosqvist, Hanna. 2013. "Becoming an autistic adult: exploring the transitions of young people with autism from education/care to working life." Alexander, Michael, Baird, Marian and Pocock, Barbara (ed.) 5th International Community, Work and Family Conference (CWFC 2013): Changes and Challenges in a Globalising World. Sydney, Australia 17 - 19 Jul 2013 Sydney, Australia.
Commentary: challenging representations of autism – exploring possibilities for broadcasting the self on YouTube
Brownlow, Charlotte, O'Dell, Lindsay and Bertilsdotter Rosqvist, Hanna. 2013. "Commentary: challenging representations of autism – exploring possibilities for broadcasting the self on YouTube." Journal on Developmental Disabilities. 19 (1), pp. 90-95.
Making friends
Brownlow, Charlotte. 2012. "Making friends." Brace, Nicola and Byford, Jovan (ed.) Investigating psychology: key concepts, key studies, key approaches. Oxford, United Kingdom. Oxford University Press. pp. 233-271
The development of friendships and sociality: exploring the friendships of people with autism
Brownlow, Charlotte, O'Dell, Lindsay and Bertilsdotter Rosqvist, Hanna. 2012. "The development of friendships and sociality: exploring the friendships of people with autism." 47th Annual Australasian Society for Intellectual Development Conference (ASID 2012): Research to Practice. Wellington, New Zealand 07 - 09 Nov 2012 Keswick, SA. Australia.
Mapping the social geographies of autism: online and off-line narratives of neuro-shared and separate spaces
Bertilsdotter Rosqvist, Hanna, Brownlow, Charlotte and O'Dell, Lindsay. 2013. "Mapping the social geographies of autism: online and off-line narratives of neuro-shared and separate spaces." Disability and Society. 28 (3), pp. 367-379. https://doi.org/10.1080/09687599.2012.714257
Constructions of Aspergers syndrome identity in public spaces: explorations in online and offline interactions
Bertilsdotter Rosqvist, Hanna, Brownlow, Charlotte and O'Dell, Lindsay. 2011. "Constructions of Aspergers syndrome identity in public spaces: explorations in online and offline interactions ." Disability and Public Space Conference 2011. Oslo, Norway 28 - 29 Apr 2011 Oslo, Norway.
Understanding, and working with, autism: from deficit to neurodiversity
Brownlow, Charlotte. 2010. "Understanding, and working with, autism: from deficit to neurodiversity ." Making Research Count Workshop (2010). Kings College, United Kingdom 11 May 2010
Transitioning to adulthood: autism and biological citizenship
Brownlow, Charlotte and O'Dell, Lindsay. 2011. "Transitioning to adulthood: autism and biological citizenship." 7th Biennial Conference of the International Society of Critical Health Psychology. Adelaide, Australia 18 - 20 Apr 2011
Exploring the transitions of young people with autism from childhood to young adulthood
O'Dell, Lindsay and Brownlow, Charlotte. 2009. "Exploring the transitions of young people with autism from childhood to young adulthood." 7th European Congress of Community Psychology. Paris, france 29 - 30 Oct 2009
Constructing 'NT Syndrome': impairments of being non-autistic
Brownlow, Charlotte and O'Dell, Lindsay. 2008. "Constructing 'NT Syndrome': impairments of being non-autistic." 2nd International Conference on Community Psychology (2ICCP). Lisbon, Portugal 04 - 06 Jun 2008
Constructing an autistic identity: AS voices online
Brownlow, Charlotte and O'Dell, Lindsay. 2006. "Constructing an autistic identity: AS voices online." Intellectual and Developmental Disabilities: journal of policy, practice, and perspectives. 44 (5), pp. 315-321. https://doi.org/10.1352/0047-6765
Media reports of links between MMR and autism: a discourse analysis
O'Dell, Lindsay and Brownlow, Charlotte. 2005. "Media reports of links between MMR and autism: a discourse analysis." British Journal of Learning Disabilities. 33, pp. 194-199. https://doi.org/10.1111/j.1468-3156.2005.00304.x
Making friends
Brownlow, Charlotte. 2010. "Making friends." Brace, Nicola and Byford, Jovan (ed.) Discovering psychology. Milton Keynes, United Kingdom. Open University Press. pp. 233-269
Presenting the self: negotiating a label of autism
Brownlow, Charlotte. 2010. "Presenting the self: negotiating a label of autism." Journal of Intellectual and Developmental Disability. 35 (1), pp. 14-21. https://doi.org/10.3109/13668250903496336
Neurodiverse spaces: exploring the potential for social networking to reconstruct our ideas of 'friendship'
O'Dell, Lindsay, Brownlow, Charlotte and Bertilsdotter Rosqvist, Hanna. 2011. "Neurodiverse spaces: exploring the potential for social networking to reconstruct our ideas of 'friendship'." Critical Autism Seminar Day (2011). Sheffield, United Kingdom 18 Jan 2011
Challenging understandings of 'Theory of Mind': a brief report
Brownlow, Charlotte and O'Dell, Lindsay. 2009. "Challenging understandings of 'Theory of Mind': a brief report." Intellectual and Developmental Disabilities: journal of policy, practice, and perspectives. 47 (6), pp. 473-478. https://doi.org/10.1352/1934-9556-47.6.473
Re-presenting autism: the construction of 'NT Syndrome'
Brownlow, Charlotte. 2010. "Re-presenting autism: the construction of 'NT Syndrome'." Journal of Medical Humanities. 31 (3), pp. 243-255. https://doi.org/10.1007/s10912-010-9114-4
Representations of autism: implications for community healthcare practice
Brownlow, Charlotte and O'Dell, Lindsay. 2009. "Representations of autism: implications for community healthcare practice." Community Practitioner. 82 (7), pp. 18-21.