Added on 07/11/2024
Journal article of the type Scientific research ( ; english)
*Two co-authors had publicly identified as autistic. [Learn more about this mention]
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Despite the enormous amounts of money spent on autism research, there has been little focus to date on what members of the autistic community believe should be prioritised by autism researchers. Our systematic review of the literature identified three published studies that had developed wide-ranging autism research priority sets. We undertook an in-depth analysis of these priorities sets to determine whether research focused on each priority had the potential to benefit the well-being of and/or emancipate autistic individuals. For this purpose, we used published ‘inclusive research’ criteria. We also compared the three sets of autism research priorities in the context of autistic well-being and emancipation. Our findings demonstrated substantial differences between the priorities in the studies in terms of whether they might benefit and/or be emancipatory for autistic people. Autistic people were a small minority of participants in studies where participant numbers had been recorded. There has yet to be a study focused solely on understanding the autism research priorities of autistic adults.
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(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.
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Australian Autism Research Council (2021). "Australian Autism Research Council: 2020-21 research priority update." Brisbane: Autism CRC.
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P. E. Cervantes, M. Matheis, J. Estabillo, D. E. Seag, K. L. Nelson, R. Peth-Pierce, S. M. Horwitz (2021). "Trends over a decade in NIH funding for autism spectrum disorder services research." Journal of Autism and Developmental Disorders, 51(8), doi:10.1007/s10803-020-04746-3
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N. Chown* (2019). "Who benefits from autism research? And to what extent is it participatory and/or emancipatory? A brief follow-up to Pellicano, Dinsmore and Charman (2014)." Autism Policy and Practice, 2(1), 93-95.
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N. Chown*, J. Robinson, L. Beardon, J. Downing, L. Hughes, J. Leatherland, D. MacGregor (2017). "Improving research about us, with us: A draft framework for inclusive autism research." Disability & Society, 32(5), 720-734.
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M. Clark, D. Adams (2020). "Listening to parents to understand their priorities for autism research." PloS One, 15(8), doi:10.1371/journal.pone.0237376
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J. Den Houting*, E. Pellicano (2019). "A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017." Journal of Autism and Developmental Disorders, 49(11), doi:10.1007/s10803-019-04155-1
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R. Deonandan, E. Y. Liu, B. Kolisnyk, A. T. M. Konkle (2016). "An analysis of Canadian institute for health research funding for research on autism spectrum disorder." Autism Research and Treatment, 2016, doi:10.1155/2016/8106595
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J. Dewinter, A. I. van der Miesen, L. G. Holmes (2020). "INSAR special interest group report: Stakeholder perspectives on priorities for future research on autism, sexuality, and intimate relationships." Autism Research, 13(8), doi:10.1002/aur.2340
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M. Doherty* (2022). Personal communication.
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T. Frazier (2019). "Autism Research Priorities." Encyclopedia of Autism Spectrum Disorders, 1-7.
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T. W. Frazier, G. Dawson, D. Murray/*, A. Shih, J. S. Sachs, A. Geiger (2018). "Brief report: A survey of autism research priorities across a diverse community of stakeholders." Journal of Autism and Developmental Disorders, 48(11), doi:10.1007/s10803-018-3642-6
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J. B. Gardiner (2017). "Special Educational Needs and Inclusion: How Have the Major Historical Changes to the Language of Special Education and Inclusive Policy Influenced the Provision for Children with SEN/D within English Primary Schools?"
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K. Gotham, A. R. Marvin, J. L. Taylor, Z. Warren, C. M. Anderson, P. A. Law, J. K. Law, P. H. Lipkin (2015). "Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data." Autism, 19, doi:10.1177/1362361315583818
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Government Accountability Office (2015). "Federal autism research: Updated information on funding from fiscal years 2008 through 2012."
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S. Graby* (2015). "Neurodiversity: Bridging the gap between the disabled people’s movement and the mental health system survivors’ movement." Madness, Distress and the Politics of Disablement, 13-25.
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L. Harris, D. Gilmore, A. Longo, B. N. Hand (2021). "Patterns of US federal autism research funding during 2017–2019." Autism, 25(7), doi:10.1177/13623613211003430
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Interagency Autism Coordinating Committee (IACC) (2016). "2016-2017 interagency autism coordinating committee strategic plan for autism spectrum disorder." (Source)
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J. Kornack, A. Persicke, P. Cervantes, J. Jang, D. Dixon (2014). "Economics of autism spectrum disorders: An overview of treatment and research funding." Handbook of Early Intervention for Autism Spectrum Disorders, doi:10.1007/978-1-4939-0401-3_9
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T. M. Krahn, A. Fenton (2012). "Funding priorities: Autism and the need for a more balanced research agenda in Canada." Public Health Ethics, 5(3), doi:10.1093/phe/phs027
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C. Lehmann (2014). "Autism Research to Receive Large Funding Increase."
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D. B. Nicholas, S. Hodgetts, L. Zwaigenbaum, L. E. Smith, P. Shattuck, J. R. Parr, M. E. Stothers (2017). "Research needs and priorities for transition and employment in autism: Considerations reflected in a “Special Interest Group” at the International Meeting for Autism Research." Autism Research, 10(1), doi:10.1002/aur.1683
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C. O'Connor (2015). "Jessica Alba's Honest Co. Funding research on chemical link to autism." (Source)
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Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC) (2010). "IACC autism spectrum disorder research portfolio analysis report. 2012." (Source)
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E. Pellicano, A. Dinsmore, T. Charman (2013). "A future made together: Shaping autism research in the UK." London: Institute of Education, University of London.
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L. Roche, D. Adams, M. Clark (2020). "Research priorities of the autism community: A systematic review of key stakeholder perspectives." Autism, 25(2), doi:10.1177/1362361320967790
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P. T. Shattuck, L. Lau, K. A. Anderson, A. A. Kuo (2018). "A national research agenda for the transition of youth with autism." Pediatrics, 141(Supplement 4), doi:10.1542/peds.2016-4300m
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K. Simpson, D. Adams, V. Manokara, S. Malone (2022). "Research and training priorities of staff supporting individuals with intellectual disabilities with or without autism." Journal of Policy and Practice in Intellectual Disabilities, 19(3), doi:10.1111/jppi.12403
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R. A. Vasa, A. Keefer, J. Reaven, M. South, S. W. White (2018). "Priorities for advancing research on youth with autism spectrum disorder and co-occurring anxiety." Journal of Autism and Developmental Disorders, 48(3), doi:10.1007/s10803-017-3320-0
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G. Warner, H. Cooper, J. Cusack* (2019). "A review of the autism research funding landscape in the United Kingdom." London: Autistica. (Source)
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J. D. Zwicker, J. H. Emery (2014). "Autism research funding allocation: can economics tell us if we have got it right?" Autism Research, 7(6), doi:10.1002/aur.1423
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