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

Added on 19/06/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Tori Haar*, Charlotte Brownlow, Gabrielle Hall*, Melanie Heyworth*, Wenn Lawson*, Rebecca Poulsen*, Tamara Reinisch, Elizabeth Pellicano , 'We have so much to offer': Community members' perspectives on autism research published in the journal "Autism", Preprint, 14 pages , doi:10.1177/13623613241248713

*Five co-authors are autistics. [Learn more about this mention]

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Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven't asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.

For your information:

(1) References in blue are resources listed on our site;

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site;

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic. [Learn more about this mention]

  • Australian Autism Research Council. (2019). "Australian Autism Research Council: 2019 Research priorities". (Source)

  • Australian Autism Research Council. (2021). "Australian Autism Research Council: 2020-21 Research priority update". (Source)

  • A. Baines (2012). "Positioning, strategizing, and charming: how students with autism construct identities in relation to disability". Disability & Society, 27(4). doi:10.1080/09687599.2012.662825

  • M. Botha* (2021). "Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production". Front. Psychol., 12. doi:10.3389/fpsyg.2021.727542

  • S. Bottini (2018). "Social reward processing in individuals with autism spectrum disorder: A systematic review of the social motivation hypothesis". Research in Autism Spectrum Disorders, 45. doi:10.1016/j.rasd.2017.10.001

  • V. Braun, V. Clarke (2019). "Reflecting on reflexive thematic analysis". Qualitative Research in Sport, Exercise and Health, 11(4). doi:10.1080/2159676x.2019.1628806

  • J. Brett, S. Staniszewska, C. Mockford, S. Herron-Marx, J. Hughes, C. Tysall, R. Suleman (2014). "A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities". Patient, 7(4). doi:10.1007/s40271-014-0065-0

  • E. Cage, J. Di Monaco, V. Newell (2018). "Experiences of Autism Acceptance and Mental Health in Autistic Adults". J Autism Dev Disord, 48(2). doi:10.1007/s10803-017-3342-7

  • M. Ariel Cascio, J. Weiss, E. Racine, I. (2020). "Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities". Autism, 24(7). doi:10.1177/1362361320918763

  • R. Chapman*, H. Carel (2022). "Neurodiversity, epistemic injustice, and the good human life". Journal of Social Philosophy, 53(4). doi:10.1111/josp.12456

  • C. Chevallier, G. Kohls, V. Troiani, E. Brodkin, R. Schultz (2012). "The social motivation theory of autism". Trends in Cognitive Sciences, 16(4). doi:10.1016/j.tics.2012.02.007

  • C. Clements, A. Zoltowski, L. Yankowitz, B. Yerys, R. Schultz, J. Herrington (2018). "Evaluation of the Social Motivation Hypothesis of Autism". JAMA Psychiatry, 75(8). doi:10.1001/jamapsychiatry.2018.1100

  • S. Cribb, L. Kenny, E. Pellicano (2019). "'I definitely feel more in control of my life': The perspectives of young autistic people and their parents on emerging adulthood". Autism, 23(7). doi:10.1177/1362361319830029

  • R. van der Cruijsen, B. Boyer (2021). "Explicit and implicit self-esteem in youth with autism spectrum disorders". Autism, 25(2). doi:10.1177/1362361320961006

  • R. Davis, C. Crompton (2021). "What Do New Findings About Social Interaction in Autistic Adults Mean for Neurodevelopmental Research?". Perspect Psychol Sci, 16(3). doi:10.1177/1745691620958010

  • G. Dawson (2013). "Dramatic Increase in Autism Prevalence Parallels Explosion of Research Into Its Biology and Causes". JAMA Psychiatry, 70(1). doi:10.1001/jamapsychiatry.2013.488

  • M. Fricker (2007). "Epistemic injustice: Power and the ethics of knowing". Oxford University Press.

  • M. Ann Gernsbacher (2017). "Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma". Child Psychology Psychiatry, 58(7). doi:10.1111/jcpp.12706

  • E. Goffman (1990). "Stigma: Notes on the management of spoiled identity".

  • S. Heraty, A. Lautarescu, D. Belton, A. Boyle, P. Cirrincione, M. Doherty*, S. Douglas, J. Roderik Derk Plas, K. Van Den Bosch, P. Violland, J. Tercon, A. Ruigrok, D. G.M. Murphy, T. Bourgeron, C. Chatham, E. Loth, B. Oakley, G. McAlonan, T. Charman, N. Puts, L. Gallagher, E. J.H. Jones (2023). "Bridge-building between communities: Imagining the future of biomedical autism research". Cell, 186(18). doi:10.1016/j.cell.2023.08.004

  • D. Hess (2016). "Undone science: Social movements, mobilized publics, and industrial transitions". MIT Press.

  • K. Jaswal (2018). "Being vs. Appearing socially uninterested: Challenging assumptions about social motivation in autism". Behavioral and Brain Sciences, 42, 1–73.

  • C. Jose, P. George-Zwicker, L. Tardif, A. Bouma, D. Pugsley, L. Pugsley, M. Bélanger, J. Gaudet, M. Robichaud (2020). "'We are the stakeholders with the most at stake': scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project". Res Involv Engagem, 6(1). doi:10.1186/s40900-020-00233-2

  • S. Kapp* (2020). "Autistic community and the neurodiversity movement: Stories from the frontline". Palgrave Macmillan.

  • S. Kapp* (2023). "Profound Concerns about 'Profound Autism': Dangers of Severity Scales and Functioning Labels for Support Needs". Education Sciences, 13(2). doi:10.3390/educsci13020106

  • S. Luterman (2019). "What it's like to be autistic at an autism research conference". (Source)

  • K. Malone, J. Pearson, K. Palazzo, L. Manns, A. Rivera, D. Mason Martin (2022). "The Scholarly Neglect of Black Autistic Adults in Autism Research". Autism in Adulthood, 4(4). doi:10.1089/aut.2021.0086

  • L. Markauskaite (2016). "Epistemic fluency and professional education: Innovation, knowledgeable action and actionable knowledge.

  • C. Michael (2021). "Is Being Othered a Co-Occurring Condition of Autism?". Autism in Adulthood, 3(2). doi:10.1089/aut.2021.0019

  • D. Milton*, M. Bracher (2013). "Autistics speak but are they heard?"" Medical Sociology Online, 7, 61–69

  • Nature. (2018) "The best research is produced when researchers and communities work together". Nature, 562, 7.

  • A. Ne’eman (2021). "When disability is defined by behavior, outcome measures should not promote ‘Passing’". AMA Journal of Ethics, 23, E569–E575.

  • C. Nicolaidis, D. Raymaker*, K. McDonald, S. Dern, E. Ashkenazy, C. Boisclair, S. Robertson, A. Baggs (2011). "Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates". cpr, 5(2). doi:10.1353/cpr.2011.0022

  • J. Ocloo, R. Matthews (2016). "From tokenism to empowerment: progressing patient and public involvement in healthcare improvement". BMJ Qual Saf, 25(8). doi:10.1136/bmjqs-2015-004839

  • Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (2012). "IACC autism spectrum disorder research portfolio analysis report 2010". www.iacc.hhs.gov/portfolio-analysis/2010/index.shtml

  • Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (2019). "2016 IACC autism spectrum disorder research: Portfolio analysis report". (Source)

  • M. Oliver (1996). "Understanding Disability". Mackays of Chatham

  • E. Omeni, M. Barnes, D. MacDonald, M. Crawford, D. Rose (2014). "Service user involvement: impact and participation: a survey of service user and staff perspectives". BMC Health Serv Res, 14(1). doi:10.1186/s12913-014-0491-7

  • E. Pellicano (2013). "A future made together: Shaping autism research in the UK".

  • E. Pellicano (2020). "Commentary: Broadening the research remit of participatory methods in autism science – a commentary on Happé and Frith (2020)". Child Psychology Psychiatry, 61(3). doi:10.1111/jcpp.13212

  • E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research". Autism Research, 4(4). doi:10.1002/aur.201

  • B. Pratt (2021). "Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?". BMC Med Ethics, 22(1). doi:10.1186/s12910-021-00685-5

  • D. Raymaker* (2013). "Worlds of autism: Across the spectrum of neurological difference".

  • L. Roche, D. Adams, M. Clark (2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25(2). doi:10.1177/1362361320967790

  • P. Rong, Q. Fu, X. Zhang, H. Liu, S. Zhao, X. Song, P. Gao, R. Ma (2022). "A bibliometrics analysis and visualization of autism spectrum disorder". Frontiers in Psychiatry, 13, Article 884600.

  • G. Russell, S. Starr, C. Elphick, R. Rodogno, I. Singh (2018). "Selective patient and public involvement: The promise and perils of pharmaceutical intervention for autism". Health Expectations, 21(2). doi:10.1111/hex.12637

  • P. Shattuck, J. Steinberg, J. Yu, X. Wei, B. Cooper, L. Newman, A. Roux (2014). "Disability Identification and Self-Efficacy among College Students on the Autism Spectrum". Autism Research and Treatment, 2014. doi:10.1155/2014/924182

  • J. Singer (1998). "Odd people in: The birth of community amongst people on the 'Autistic Spectrum'"". Faculty of Humanities and Social Science.

  • W. Tan (2024). "A comprehensive mixed-methods systematic review of participatory autism research".

  • D. Weiting Tan (2023). "Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?". Autism in Adulthood, 5(3). doi:10.1089/aut.2023.0021

  • S. Thompson-Hodgetts (2023). "Reflections on my experiences as a non-autistic autism researcher". Autism, 27(1). doi:10.1177/13623613221121432

  • M. Tomasello, M. Carpenter, J. Call, T. Behne, H. Moll (2005). "Understanding and sharing intentions: The origins of cultural cognition". Behav Brain Sci, 28(5). doi:10.1017/s0140525x05000129

  • N. Walker* (2012). "Loud hands: Autistic people, speaking".

  • P. Ward, J. Thompson, R. Barber, C. Armitage, J. Boote, C. Cooper, G. Jones (2010). "Critical perspectives on 'consumer involvement' in health research". Journal of Sociology, 46(1). doi:10.1177/1440783309351771

  • E. Williams, K. Gleeson, B. Jones (2019). "How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A qualitative metasynthesis". Autism, 23(1). doi:10.1177/1362361317723836

  • D. Woodly (2022). "A political economy of justice".


 
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