{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T07:54:25Z","timestamp":1791359665968,"version":"4.3.1"},"reference-count":40,"publisher":"Springer Science and Business Media LLC","issue":"3","license":[{"start":{"date-parts":[[2026,5,18]],"date-time":"2026-05-18T00:00:00Z","timestamp":1779062400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,5,18]],"date-time":"2026-05-18T00:00:00Z","timestamp":1779062400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100000077","name":"Division of Social and Economic Sciences","doi-asserted-by":"publisher","award":["1737149"],"award-info":[{"award-number":["1737149"]}],"id":[{"id":"10.13039\/100000077","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Bioethical Inquiry"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Autism research depends on the participation of autistic children and adults as well as their families, but researchers have not routinely involved autistic people in the planning or execution of research. Community-engaged research practices, standard in other fields such as areas of public health, are gaining acceptance in autism research, although some researchers and other stakeholders remain concerned about their appropriateness, feasibility, or utility. This study, part of a larger project on stakeholder views on the ethics of community engagement practices in autism research, examines researchers\u2019 ethical beliefs about community engagement. We find that the researchers with whom we spoke cite multiple specific ethical and epistemological benefits of these practices and relatively few risks. Barriers to community engagement are, in their view, often institutional and practical, including the longer timelines of community-engaged research, resistance or lack of comprehension on the part of funding organizations and grant reviewers, the need for additional resources to support appropriate compensation, and ensuring that community stakeholders and researchers have a shared understanding of terminology.<\/jats:p>","DOI":"10.1007\/s11673-025-10511-x","type":"journal-article","created":{"date-parts":[[2026,5,18]],"date-time":"2026-05-18T13:49:15Z","timestamp":1779112155000},"page":"629-642","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["\"They Really Save Us From Ourselves\""],"prefix":"10.1007","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5062-6656","authenticated-orcid":false,"given":"Chloe","family":"Silverman","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Yudell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Carroll-Scott","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,5,18]]},"reference":[{"issue":"1","key":"10511_CR1","doi-asserted-by":"publisher","first-page":"37","DOI":"10.1089\/aut.2021.0067","volume":"5","author":"J Ashburner","year":"2023","unstructured":"Ashburner, J., V. Tomkins, N. Bobir, et al. 2023. Co-design and co-production of a goal setting tool for autistic adolescents and adults. Autism in Adulthood 5(1): 37\u201350.","journal-title":"Autism in Adulthood"},{"key":"10511_CR2","unstructured":"Autism Science Foundation. 2023. CDC reports profound autism statistics for the first time. https:\/\/autismsciencefoundation.org\/press_releases\/cdc-profound-autism-statistics\/. Accessed\u00a013 Mar 2026."},{"issue":"4","key":"10511_CR3","doi-asserted-by":"publisher","first-page":"822","DOI":"10.1177\/1362361320908410","volume":"24","author":"TW Benevides","year":"2020","unstructured":"Benevides, T.W., S.M. Shore, K. Palmer, et al. 2020. Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism 24(4): 822\u2013833.","journal-title":"Autism"},{"issue":"1","key":"10511_CR4","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1186\/s40900-024-00573-3","volume":"10","author":"C Benz","year":"2024","unstructured":"Benz, C., W. Scott-Jeffs, K.A. McKercher, et al. 2024. Community-based participatory research through co-design: Supporting collaboration from all sides of disability. Research Involvement and Engagement 10(1): 47.","journal-title":"Research Involvement and Engagement"},{"key":"10511_CR5","doi-asserted-by":"publisher","first-page":"1050897","DOI":"10.3389\/fpsyg.2022.1050897","volume":"13","author":"M Botha","year":"2022","unstructured":"Botha, M. and E. Cage. 2022. \u201cAutism research is in crisis\u201d: A mixed-methods study of researcher\u2019s constructions of autistic people and autism research.\u201d Frontiers in Psychiatry 13: 1050897.","journal-title":"Frontiers in Psychiatry"},{"key":"10511_CR6","doi-asserted-by":"publisher","first-page":"1244451","DOI":"10.3389\/fpsyt.2023.1244451","volume":"14","author":"K Bottema-Beutel","year":"2023","unstructured":"Bottema-Beutel, K., S.K. Kapp, N. Sasson, M.A. Gernsbacher, H. Natri, and M. Botha. 2023. Anti-ableism and scientific accuracy in scientific research: A false dichotomy. Frontiers in Psychiatry 14: 1244451.","journal-title":"Frontiers in Psychiatry"},{"issue":"1","key":"10511_CR7","doi-asserted-by":"publisher","first-page":"86","DOI":"10.1093\/phe\/phad003","volume":"16","author":"RCH Brown","year":"2023","unstructured":"Brown, R.C.H. and M. de Barra. 2023. A taxonomy of non-honesty in public health communication. Public Health Ethics 16(1): 86\u2013101.","journal-title":"Public Health Ethics"},{"issue":"7","key":"10511_CR8","doi-asserted-by":"publisher","first-page":"1676","DOI":"10.1177\/1362361320918763","volume":"24","author":"Cascio, M.A., J.A. Weiss, E. Racine, and the Autism Research Ethics Task Force","year":"2020","unstructured":"Cascio, M.A., J.A. Weiss, E. Racine, and the Autism Research Ethics Task Force. 2020. Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities. Autism 24(7): 1676\u20131690.","journal-title":"Autism"},{"issue":"1","key":"10511_CR9","doi-asserted-by":"publisher","first-page":"148","DOI":"10.1177\/1362361320951696","volume":"25","author":"J den Houting","year":"2021","unstructured":"den Houting J., J. Higgins, K. Isaacs, J. Mahony, and E. Pellicano. 2021. \u201cI\u2019m not just a guinea pig\u201d: Academic and community perceptions of participatory autism research. Autism 25(1): 148\u2013163.","journal-title":"Autism"},{"key":"10511_CR10","doi-asserted-by":"crossref","unstructured":"Donaldson, A.L., e. corbin, A.H. Zisk, and B. Eddy. 2023. Promotion of communication access, choice, and agency for autistic students. Language, Speech, and Hearing Services in Schools 54(1): 140\u2013155.","DOI":"10.1044\/2022_LSHSS-22-00031"},{"issue":"1","key":"10511_CR11","doi-asserted-by":"publisher","first-page":"61","DOI":"10.1177\/1362361315626577","volume":"21","author":"S Fletcher-Watson","year":"2017","unstructured":"Fletcher-Watson, S., F. Apicella, B. Auyeung, et al. 2017. Attitudes of the autism community to early autism research. Autism 21(1): 61\u201374.","journal-title":"Autism"},{"key":"10511_CR12","doi-asserted-by":"publisher","first-page":"275463302312165","DOI":"10.1177\/27546330231216548","volume":"1","author":"J Flowers","year":"2023","unstructured":"Flowers, J., J. Dawes, D. McCleary, and H. Marzolf. 2023. Words matter: Language preferences in a sample of autistic adults. Neurodiversity 1: 27546330231216548.","journal-title":"Neurodiversity"},{"issue":"2","key":"10511_CR13","doi-asserted-by":"publisher","first-page":"259","DOI":"10.1080\/09687599.2023.2279932","volume":"40","author":"E Fraser-Barbour","year":"2025","unstructured":"Fraser-Barbour, E., S. Robinson, S. Gendera, et al. 2025. Shifting power to people with disability in co-designed research. Disability and Society 40(2): 259\u2013280.","journal-title":"Disability and Society"},{"issue":"5","key":"10511_CR14","doi-asserted-by":"publisher","first-page":"455","DOI":"10.1177\/1556264619858524b","volume":"14","author":"T Garfield","year":"2019","unstructured":"Garfield, T. and M. Yudell. 2019. Commentary 2: Participatory justice and ethics in autism research. Journal of Empirical Research on Human Research Ethics 14(5): 455\u2013457.","journal-title":"Journal of Empirical Research on Human Research Ethics"},{"issue":"3","key":"10511_CR15","doi-asserted-by":"publisher","first-page":"809","DOI":"10.1007\/s10803-018-3783-7","volume":"49","author":"G Hollin","year":"2019","unstructured":"Hollin, G. and W. Pearce. 2019. Autism scientists\u2019 reflections on the opportunities and challenges of public engagement: A qualitative analysis. Journal of Autism and Developmental Disorders 49(3): 809\u2013818.","journal-title":"Journal of Autism and Developmental Disorders"},{"issue":"6","key":"10511_CR16","doi-asserted-by":"publisher","first-page":"971","DOI":"10.1177\/00333549231163551","volume":"138","author":"MM Hughes","year":"2023","unstructured":"Hughes, M.M., K.A. Shaw, M. DiRienzo, et al. 2023. The prevalence and characteristics of children with profound autism, 15 Sites, United States, 2000-2016. Public Health Reports 138(6): 971\u2013980.","journal-title":"Public Health Reports"},{"key":"10511_CR17","unstructured":"International Society for Autism Research. n.d. Autistic Researchers Committee. https:\/\/www.autism-insar.org\/page\/insararc. Accessed\u00a031 Mar 2026."},{"issue":"2","key":"10511_CR18","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3390\/educsci13020106","volume":"13","author":"SK Kapp","year":"2023","unstructured":"Kapp, S.K. 2023. Profound concerns about \u201cprofound autism\u201d: Dangers of severity scales and functioning labels for support needs. Education Sciences 13(2): 1\u20136.","journal-title":"Education Sciences"},{"issue":"4","key":"10511_CR19","first-page":"1","volume":"39","author":"EA Largent","year":"2017","unstructured":"Largent, E.A., and H.F. Lynch. 2017. Paying research participants: The outsized influence of \u201cundue influence\u201d. IRB 39(4): 1\u20139.","journal-title":"IRB"},{"issue":"5","key":"10511_CR20","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1002\/hast.898","volume":"48","author":"EA Largent","year":"2018","unstructured":"Largent, E.A., H.F. Lynch, and M.S. McCoy. 2018. Patient-engaged research: Choosing the \u201cright\u201d patients to avoid pitfalls. Hastings Center Report 48(5): 26\u201334.","journal-title":"Hastings Center Report"},{"issue":"1","key":"10511_CR21","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1093\/jurban\/jtg014","volume":"80","author":"RD Lasker","year":"2003","unstructured":"Lasker, R.D. and E.S. Weiss. 2003. Broadening participation in community problem solving: A multidisciplinary model to support collaborative practice and research. Journal of Urban Health: Bulletin of the New York Academy of Medicine 80(1): 14\u201347.","journal-title":"Journal of Urban Health: Bulletin of the New York Academy of Medicine"},{"issue":"10321","key":"10511_CR22","doi-asserted-by":"publisher","first-page":"271","DOI":"10.1016\/S0140-6736(21)01541-5","volume":"399","author":"C Lord","year":"2022","unstructured":"Lord, C., T. Charman, A. Havdahl, et al. 2022. The Lancet Commission on the future of care and clinical research in autism. The Lancet Commissions 399(10321): 271\u2013334.","journal-title":"The Lancet Commissions"},{"key":"10511_CR23","doi-asserted-by":"crossref","unstructured":"Lutz, A.S.F. 2024. Chasing the intact mind: How the severely autistic and intellectually disabled were excluded from the debates that affect them the most. Oxford: Oxford University Press.","DOI":"10.1093\/oso\/9780197683842.001.0001"},{"issue":"4","key":"10511_CR24","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1080\/15265161.2020.1730482","volume":"20","author":"MS McCoy","year":"2020","unstructured":"McCoy, M.S., E.Y. Liu, A.S.F. Lutz, and D. Sisti. 2020. Ethical advocacy across the autism spectrum: Beyond partial representation. The American Journal of Bioethics 20(4): 13\u201324.","journal-title":"The American Journal of Bioethics"},{"issue":"12","key":"10511_CR25","doi-asserted-by":"publisher","first-page":"e7","DOI":"10.2105\/AJPH.2013.301605","volume":"103","author":"L Mikesell","year":"2013","unstructured":"Mikesell, L., E. Bromley, and D. Khodyakov. 2013. Ethical community-engaged research: A literature review. American Journal of Public Health 103(12): e7\u2013e14.","journal-title":"American Journal of Public Health"},{"key":"10511_CR26","volume-title":"Community-based participatory research for health: From process to outcomes","year":"2008","unstructured":"Minkler, M. and N. Wallerstein. (Eds). 2008. Community-based participatory research for health: From process to outcomes\u00a0(2nd ed.). San Francisco: Jossey-Bass.","edition":"2"},{"issue":"4","key":"10511_CR27","doi-asserted-by":"publisher","first-page":"673","DOI":"10.1002\/aur.2928","volume":"16","author":"HM Natri","year":"2023","unstructured":"Natri, H.M., O. Abubakare, K. Asasumasu, et al. 2023. Anti-ableist language is fully compatible with high-quality autism research. Autism Research 16(4): 673\u2013676.","journal-title":"Autism Research"},{"issue":"7","key":"10511_CR28","doi-asserted-by":"publisher","first-page":"824","DOI":"10.1177\/1362361315576221","volume":"19","author":"C Nicolaidis","year":"2015","unstructured":"Nicolaidis, C., D. Raymaker, E. Ashkenazy, et al. 2015. \u201cRespect the way I need to communicate with you\u201d: Healthcare experiences of adults on the autism spectrum. Autism 19(7): 824\u2013831.","journal-title":"Autism"},{"issue":"8","key":"10511_CR29","doi-asserted-by":"publisher","first-page":"2007","DOI":"10.1177\/1362361319830523","volume":"23","author":"C Nicolaidis","year":"2019","unstructured":"Nicolaidis, C., D. Raymaker, S.K. Kapp, et al. 2019. The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism 23(8): 2007\u20132019.","journal-title":"Autism"},{"issue":"6","key":"10511_CR30","doi-asserted-by":"publisher","first-page":"761","DOI":"10.1007\/s11606-012-2262-7","volume":"28","author":"C Nicolaidis","year":"2012","unstructured":"Nicolaidis, C., D. Raymaker, K. McDonald, et al. 2012. Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine 28(6): 761\u2013769.","journal-title":"Journal of General Internal Medicine"},{"issue":"4","key":"10511_CR31","doi-asserted-by":"publisher","first-page":"381","DOI":"10.1111\/jcpp.13534","volume":"63","author":"E Pellicano","year":"2022","unstructured":"Pellicano, E. and J. den Houting. 2022. Annual research review: Shifting from \u2018normal science\u2019 to neurodiversity in autism science. The Journal of Child Psychology and Psychiatry 63(4): 381\u2013396.","journal-title":"The Journal of Child Psychology and Psychiatry"},{"issue":"7","key":"10511_CR32","doi-asserted-by":"publisher","first-page":"756","DOI":"10.1177\/1362361314529627","volume":"18","author":"E Pellicano","year":"2014","unstructured":"Pellicano, E., A. Dinsmore, and T. Charman. 2014a. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism 18(7): 756\u2013770.","journal-title":"Autism"},{"issue":"10","key":"10511_CR33","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0109946","volume":"9","author":"E Pellicano","year":"2014","unstructured":"\u2014\u2014\u2014. 2014b. Views on researcher-community engagement in autism research in the United Kingdom: A mixed-methods study. PLOS ONE 9(10): e109946.","journal-title":"PLOS ONE"},{"issue":"1","key":"10511_CR34","doi-asserted-by":"publisher","first-page":"75","DOI":"10.1177\/13623613211019594","volume":"26","author":"H Pickard","year":"2021","unstructured":"Pickard, H., E. Pellicano, J. den Houting, and L. Crane. 2021. Participatory autism research: Early career and established researchers\u2019 views and experiences. Autism 26(1): 75\u201387.","journal-title":"Autism"},{"issue":"11","key":"10511_CR35","doi-asserted-by":"publisher","first-page":"2071","DOI":"10.1002\/aur.3027","volume":"16","author":"R Poulsen","year":"2023","unstructured":"Poulsen, R., Dwyer, P., Gassner, D., Heyworth, M. and Z.J. Williams. 2023. The INSAR Community Collaborator Request: using community-academic partnerships to enhance outcomes of participatory autism research. Autism Research 16(11): 2071-2076.","journal-title":"Autism Research"},{"issue":"3","key":"10511_CR36","doi-asserted-by":"publisher","first-page":"497","DOI":"10.1002\/aur.2876","volume":"16","author":"A Singer","year":"2022","unstructured":"Singer, A., A. Lutz, J. Escher, and A. Halladay. 2022. A full semantic toolbox is essential for autism research and practice to thrive. Autism Research 16(3): 497\u2013501.","journal-title":"Autism Research"},{"issue":"5","key":"10511_CR37","doi-asserted-by":"publisher","first-page":"488","DOI":"10.1177\/1556264615615008","volume":"10","author":"L Tamariz","year":"2015","unstructured":"Tamariz, L., H. Medina, J. Taylor, O. Carrasquillo, E. Kobetz, and A. Palacio. 2015. Are research ethics committees prepared for community-based participatory research? Journal of Empirical Research on Human Research Ethics: An International Journal 10(5): 488\u2013495.","journal-title":"Journal of Empirical Research on Human Research Ethics: An International Journal"},{"issue":"10","key":"10511_CR38","doi-asserted-by":"publisher","first-page":"1787","DOI":"10.1002\/aur.2792","volume":"15","author":"G Vivanti","year":"2022","unstructured":"Vivanti, G. 2022. What does it mean for an autism intervention to be evidence-based? Autism Research 15(10): 1787\u20131792.","journal-title":"Autism Research"},{"issue":"9","key":"10511_CR39","doi-asserted-by":"publisher","first-page":"1656","DOI":"10.1002\/aur.2985","volume":"16","author":"R Woods","year":"2023","unstructured":"Woods, R., K. Williams, and C. Watts. 2023. \u201cProfound autism\u201d: The dire consequences of diagnostic overshadowing.\u201d Autism Research 16(9): 1656\u20131657.","journal-title":"Autism Research"},{"issue":"1","key":"10511_CR40","doi-asserted-by":"publisher","first-page":"1","DOI":"10.7243\/2054-992X-1-1","volume":"1","author":"CA Wright","year":"2014","unstructured":"Wright, C.A., S.D. Wright, M.L. Diener, and J. Eaton. 2014. Autism spectrum disorder and the applied collaborative approach: A review of community based participatory research and participatory action research. Journal of Autism 1(1): 1\u201311.","journal-title":"Journal of Autism"}],"container-title":["Journal of Bioethical Inquiry"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11673-025-10511-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11673-025-10511-x","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11673-025-10511-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T07:48:33Z","timestamp":1791359313000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11673-025-10511-x"}},"subtitle":["Autism Researchers\u2019 Insights on Community Engagement and Ethics"],"short-title":[],"issued":{"date-parts":[[2026,5,18]]},"references-count":40,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026,9]]}},"alternative-id":["10511"],"URL":"https:\/\/doi.org\/10.1007\/s11673-025-10511-x","relation":{},"ISSN":["1176-7529","1872-4353"],"issn-type":[{"value":"1176-7529","type":"print"},{"value":"1872-4353","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5,18]]},"assertion":[{"value":"22 August 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"1 September 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"18 May 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Approval to conduct this study was obtained from the Drexel Institutional Review Board (IRB), which also reviewed and approved our informed consent procedures. Informed consent was obtained from all participants in the study.","order":1,"name":"Ethics","label":"Ethical Approval","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors have no conflicts of interest to declare that are relevant to the content of this article.","order":2,"name":"Ethics","label":"Competing Interests","group":{"name":"EthicsHeading","label":"Declarations"}}]}}