« Nous avons besoin d'une recherche génétique centrée sur la communauté et fortement éthique » : une étude qualitative des attitudes de la communauté envers la génétique de l'autisme

Titre original en anglais : “We Need Community-Centred, Strongly Ethical Genetic Research”: A Qualitative Investigation of Community Attitudes Toward Autism Genetics

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref
En savoir plus sur les sources utilisées

Pugsley, K., Siryj, N., Alvares, G. A., Baxter, E., Bellgrove, M. A., Chau, T., Cooper, L., Curd, H., Douglas, S., Furley, K., Gordon, R. L., Guastella, A. J., Hawi, Z., Karo, A., Kerestes, R., King, K., Poulsen, R., Rabba, A. S., Rose, M.,..., & Johnson, B. (2026). “We Need Community-Centred, Strongly Ethical Genetic Research”: A Qualitative Investigation of Community Attitudes Toward Autism Genetics. Autism in Adulthood. https://doi.org/10.1177/25739581251370568

Date de publication: 02/02/2026 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI)

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
23
Auteur·ices de la publication identifié·es comme autistes
1 / 23 (4,3 %)
  1. Kealan Pugsley
  2. Natasha Siryj
  3. Gail A. Alvares
  4. Emilie Baxter
  5. Mark A. Bellgrove
  6. Tracey Chau
  7. Louise Cooper
  8. Helen Curd
  1. Stacey Douglas
  2. Kirsten Furley
  3. Robyn-Leigh Gordon
  4. Adam J. Guastella
  5. Ziarih Hawi
  6. Amanda Karo
  7. Rebecca Kerestes
  8. Kylie King
  1. Rebecca Poulsen *
  2. Aspasia Stacey Rabba
  3. Marissa Rose
  4. Judah P.E. Teo
  5. Alexandra Ure
  6. Elizabeth Pellicano
  7. Beth Johnson

Résumé

Contexte : La génétique de l'autisme a historiquement attiré une proportion substantielle des financements de la recherche sur l'autisme à l'échelle internationale. Cependant, plus récemment, plusieurs controverses centrées sur la conduite éthique et le manque de consultation de la communauté ont émergé. Cela a déclenché des protestations menées par des personnes Autistes en faveur de l'inclusion fonctionnelle et significative des voix Autistes dans la conception de la recherche. Méthodes : Nous avons collaboré avec des personnes Autistes, leurs alliés et d'autres parties prenantes concernées par les résultats pour les personnes Autistes afin de cocréer une étude qualitative examinant les perceptions des individus concernant la génétique de l'autisme. Nous avons interrogé 33 personnes Autistes australiennes, leurs familles et soutiens, ainsi que des professionnels de l'autisme, dans le cadre d'une série d'entretiens semi-structurés coconçus (n = 20), de groupes de discussion (n = 2 groupes) et d'enquêtes qualitatives (n = 7). Les personnes interrogées étaient majoritairement des femmes (79 %), blanches (67 %), détenaient des qualifications de troisième cycle (c.-à-d. master, doctorat) (36 %) et avaient reçu leur diagnostic d'autisme ou s'étaient autodiagnostiquées à l'âge adulte (le cas échéant, 93 %). De nombreuses personnes interrogées occupaient plusieurs rôles croisés au sein des communautés Autiste et de l'autisme. Nous avons transcrit leurs données textuellement et les avons analysées dans le cadre d'un réalisme critique à l'aide d'une analyse thématique réflexive. Résultats : Les membres de la communauté ont fait part de préoccupations concernant le potentiel eugénique de la recherche en génétique et la manière dont elle perpétue des attitudes négatives à l'égard de l'autisme et des personnes Autistes. Les personnes interrogées ressentaient un sentiment de désillusion et de méfiance envers le domaine, découlant de l'échec persistant des chercheurs sur l'autisme à intégrer les besoins de la communauté dans leurs objectifs. Certaines estimaient que, bien que les connaissances en génétique puissent présenter des bénéfices pour la santé de la communauté Autiste, ceux-ci ne pourraient être obtenus que par l'instauration de la confiance et une meilleure prise en compte des voix Autistes dans cette recherche. Conclusion : Les résultats mettent en évidence les diverses perspectives de la communauté sur la recherche en génétique de l'autisme en Australie, montrant comment les études génétiques sont perçues comme ignorant les souhaits, les besoins et les priorités des personnes Autistes et de leurs soutiens. Ces éclairages offrent une occasion unique de réévaluer la trajectoire future de la recherche en génétique de l'autisme, avec un fort appel à l'action des participants pour intégrer les voix Autistes de manière fonctionnellement significative à tous les niveaux et à toutes les étapes de la production des connaissances.

Background: Autism genetics has historically attracted a substantial proportion of autism research funding internationally. However, more recently, several controversies centered on ethical conduct and lack of community consultation have emerged. This has triggered Autistic-led protests for the functional and meaningful inclusion of Autistic voices in the research design. Methods: We collaborated with Autistic people, their allies, and other stakeholders concerned with Autistic outcomes to cocreate a qualitative study investigating individuals’ perceptions of autism genetics. We spoke to 33 Australian Autistic people, their families and supporters, and autism professionals in a series of codesigned semi-structured interviews ( n = 20), focus groups ( n = 2 groups), and qualitative surveys ( n = 7). Interviewees were predominantly women (79%), White (67%), held postgraduate qualifications (i.e., master’s, doctorate) (36%), and received their autism diagnosis or self-diagnosed in adulthood (where applicable, 93%). Many interviewees held multiple intersecting roles across the Autistic and autism communities. We transcribed their data verbatim and analyzed these within a critical realist framework using reflexive thematic analysis. Results: Community members reported concerns about the eugenic potential of genetics research and how it perpetuates negative attitudes about autism and Autistic people. Interviewees felt a sense of disillusionment and distrust toward the field stemming from persistent failure of autism researchers to integrate community needs within its aims. Some believed that while genetics knowledge could hold health benefits for the Autistic community, these could only be achieved through trust-building and improved engagement of Autistic voices in this research. Conclusion: Findings highlight the diverse community perspectives on autism genetics research within Australia, capturing how genetic studies are perceived to ignore the wants, needs, and priorities of Autistic people and their supporters. These insights offer a unique opportunity to reevaluate the trajectory of autism genetics research into the future, with a strong call to action from participants to embed Autistic voices in a functionally meaningful way at all levels and stages of knowledge generation.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
76
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
15 / 76 (19,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
32 / 576 (5,6 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 32 / 129 (24,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 21 / 536 (3,9 %).
Occurrences citées rattachées à la base AutiHub
129 / 576 (22,4 %)
Auteurices cité·es distinct·es rattaché·es : 98 / 536 (18,3 %)
Occurrences rattachées, non identifiées comme autistes
97 / 129 (75,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 97 / 576 (16,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 77 / 98 (78,6 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
Crossref: introuvable (1) · DataCite: introuvable (1)
  1. JUSTIN JAGOSH , Ann C. Macaulay , PIERRE PLUYE , JON SALSBERG , PAULA L. BUSH , JIM HENDERSON et al. (2012). Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice . The Milbank Quarterly, 90(2), 311-346. Wiley.
    Type: Article DOI: 10.1111/j.1468-0009.2012.00665.x OpenAlex: https://openalex.org/W1589185784
    Crossref OpenAlex
  2. Stefan N. Hansen , Diana E. Schendel , Richard W. Francis , Gayle C. Windham , Michaeline Bresnahan , Stephen Z. Levine et al. (2019). Recurrence Risk of Autism in Siblings and Cousins: A Multinational, Population-Based Study . Journal of the American Academy of Child & Adolescent Psychiatry, 58(9), 866-875. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2018.11.017 OpenAlex: https://openalex.org/W2922177855
    Crossref OpenAlex
  3. Katherine Gotham , Alison R Marvin , Julie Lounds Taylor , Zachary Warren , Connie M Anderson , Paul A Law et al. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data . Autism, 19(7), 794-804. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315583818 OpenAlex: https://openalex.org/W1927816754
    Crossref OpenAlex
  4. Sven Sandin , Paul Lichtenstein , Ralf Kuja-Halkola , Christina Hultman , Henrik Larsson , Abraham Reichenberg (2017). The Heritability of Autism Spectrum Disorder . JAMA, 318(12), 1182. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.2017.12141 OpenAlex: https://openalex.org/W2757581422
    Crossref OpenAlex
  5. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex
  6. Jakob Grove , Jakob Grove , Stephan Ripke , Thomas D. Als , Manuel Mattheisen , Raymond K. Walters et al. (2019). Identification of common genetic risk variants for autism spectrum disorder . Nature Genetics, 51(3), 431-444. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41588-019-0344-8 OpenAlex: https://openalex.org/W2914482125
    Crossref OpenAlex
  7. Felicity Kate Boardman (2014). The expressivist objection to prenatal testing: The experiences of families living with genetic disease . Social Science & Medicine, 107, 18-25. Elsevier BV.
    Type: Article DOI: 10.1016/j.socscimed.2014.02.025 OpenAlex: https://openalex.org/W1985238979
    Crossref OpenAlex
  8. F. Kyle Satterstrom , Jack A. Kosmicki , Jiebiao Wang , Michael S. Breen , Silvia De Rubeis , Joon-Yong An et al. (2020). Large-Scale Exome Sequencing Study Implicates Both Developmental and Functional Changes in the Neurobiology of Autism . Cell, 180(3), 568-584.e23. Elsevier BV.
    Type: Article DOI: 10.1016/j.cell.2019.12.036 OpenAlex: https://openalex.org/W2955503846
    Crossref OpenAlex
  9. Holly K. Tabor , Tracy Brazg , Julia Crouch , Emily E. Namey , Stephanie M. Fullerton , Laura M. Beskow et al. (2011). Parent Perspectives on Pediatric Genetic Research and Implications for Genotype-Driven Research Recruitment . Journal of Empirical Research on Human Research Ethics, 6(4), 41-52. SAGE Publications.
    Type: Article DOI: 10.1525/jer.2011.6.4.41 OpenAlex: https://openalex.org/W2016725163
    Crossref OpenAlex
  10. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Chercheur·euses autistes Crossref OpenAlex
  11. Philip S. Gorski (2013). “What is Critical Realism? And Why Should You Care?” . Contemporary Sociology: A Journal of Reviews, 42(5), 658-670. SAGE Publications.
    Type: Article DOI: 10.1177/0094306113499533 OpenAlex: https://openalex.org/W2020311323
    Crossref OpenAlex
  12. (s. d.). Office of National Autism Coordination National Institute of Mental Health National Institutes of Health on behalf of the Interagency Autism Coordinating Committee. 2019–2020 IACC autism research portfolio analysis report. March 2021 2024.
    Type: Autre
    Crossref
  13. Laurence Baret , Beatrice Godard (2011). Opinions and intentions of parents of an autistic child toward genetic research results: two typical profiles . European Journal of Human Genetics, 19(11), 1127-1132. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/ejhg.2011.106 OpenAlex: https://openalex.org/W2075938454
    Crossref OpenAlex
  14. Deonandan R (2016). An analysis of Canadian Institute for health research funding for research on autism spectrum disorder . Autism Res Treat, 2016, 8106595.
    Type: Autre
    Crossref
  15. Karen Tracy (1995). Action-Implicative Discourse Analysis . Journal of Language and Social Psychology, 14(1-2), 195-215. SAGE Publications.
    Type: Article DOI: 10.1177/0261927x95141011 OpenAlex: https://openalex.org/W2085826629
    Crossref OpenAlex
  17. Magan Trottier , Wendy Roberts , Irene Drmic , Stephen W. Scherer , Rosanna Weksberg , Cheryl Cytrynbaum et al. (2013). Parents’ Perspectives on Participating in Genetic Research in Autism . Journal of Autism and Developmental Disorders, 43(3), 556-568. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1592-y OpenAlex: https://openalex.org/W2095187372
    Crossref OpenAlex
  19. Sarah J. Tracy (2010). Qualitative Quality: Eight “Big-Tent” Criteria for Excellent Qualitative Research . Qualitative Inquiry, 16(10), 837-851. SAGE Publications.
    Type: Article DOI: 10.1177/1077800410383121 OpenAlex: https://openalex.org/W2103879113
    Crossref OpenAlex
  20. Ellis R (2023). An investigation of autistic opinions about autism-related genomic research . PsyArXiv.
    Type: Prépublication
    Crossref
  23. Andrea Cornwall , Rachel Jewkes (1995). What is participatory research? Social Science & Medicine, 41(12), 1667-1676. Elsevier BV.
    Type: Article DOI: 10.1016/0277-9536(95)00127-s OpenAlex: https://openalex.org/W2140960626
    Crossref OpenAlex
  24. Christy D. Roberts , Laura M. Stough , Linda H. Parrish (2002). The Role of Genetic Counseling in the Elective Termination of Pregnancies Involving Fetuses with Disabilities . The Journal of Special Education, 36(1), 48-55. SAGE Publications.
    Type: Article DOI: 10.1177/00224669020360010501 OpenAlex: https://openalex.org/W2144500938
    Crossref OpenAlex
  25. Jarle Johannessen , Terje Nærland , Cinnamon Bloss , Marcella Rietschel , Jana Strohmaier , Elen Gjevik et al. (2016). Parents’ attitudes toward genetic research in autism spectrum disorder . Psychiatric Genetics, 26(2), 74-80. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/ypg.0000000000000121 OpenAlex: https://openalex.org/W2419429828
    Crossref OpenAlex
  26. Allen Buchanan (1996). Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion . Social Philosophy and Policy, 13(2), 18-46. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0265052500003447 OpenAlex: https://openalex.org/W2171508442
    Crossref OpenAlex
  27. Afiqah Yusuf , Mayada Elsabbagh (2015). At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data . BMC Medical Ethics, 16(1), 88. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12910-015-0082-0 OpenAlex: https://openalex.org/W2208511062
    Crossref OpenAlex
  28. Kathryn Asbury , Umar Toseeb , Naomi Barrow (2024). What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? Autism, 28(7), 1838-1846. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231213431 OpenAlex: https://openalex.org/W4392622989
    Crossref OpenAlex
  29. the Australian Autism Biobank team , Gail A. Alvares , Paul A. Dawson , Cheryl Dissanayake , Valsamma Eapen , Jacob Gratten et al. (2018). Study protocol for the Australian autism biobank: an international resource to advance autism discovery research . BMC Pediatrics, 18(1), 284-284. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12887-018-1255-z OpenAlex: https://openalex.org/W2888847695
    Crossref OpenAlex
  30. Jacob A. S. Vorstman , Jeremy R. Parr , Daniel Moreno-De-Luca , Richard J. L. Anney , John I. Nurnberger Jr , Joachim F. Hallmayer (2017). Autism genetics: opportunities and challenges for clinical translation . Nature Reviews Genetics, 18(6), 362-376. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrg.2017.4 OpenAlex: https://openalex.org/W2592063610
    Crossref OpenAlex
  31. Ipsita Dey , Sreerupa Chakrabarty , Rajanya Nandi , Rakshita Shekhar , Sakhi Singhi , Shoba Nayar et al. (2024). Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India . Autism, 28(1), 187-198. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231154067 OpenAlex: https://openalex.org/W4361267800
    Crossref OpenAlex
  32. Heather Westwood , Kate Tchanturia (2017). Autism Spectrum Disorder in Anorexia Nervosa: An Updated Literature Review . Current Psychiatry Reports, 19(7), 41-41. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-017-0791-9 OpenAlex: https://openalex.org/W2619800727
    Crossref OpenAlex
  33. Putnam OC (2023). How autistic adults’ priorities for autism research differ by gender identity: A mixed-methods study . Womens Health (Lond), 19, 174550572311603.
    Type: Autre
    Crossref
  34. David G. Amaral , Matthew P. Anderson , Olaf Ansorge , Steven Chance , Carolyn Hare , Patrick R. Hof et al. (2018). Autism BrainNet . Handbook of Clinical Neurology, 150, 31-39. Elsevier.
    Type: Article DOI: 10.1016/b978-0-444-63639-3.00003-7 OpenAlex: https://openalex.org/W2792175027
    Crossref OpenAlex
  36. Stina Lou , Kathrine Carstensen , Olav Bjørn Petersen , Camilla Palmhøj Nielsen , Lone Hvidman , Maja Retpen Lanther et al. (2018). Termination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision‐making process of pregnant couples . Acta Obstetricia et Gynecologica Scandinavica, 97(10), 1228-1236. Wiley.
    Type: Article DOI: 10.1111/aogs.13386 OpenAlex: https://openalex.org/W2803271174
    Crossref OpenAlex
  37. (s. d.). Spectrum 10K. https://spectrum10k.org/ Published n.d. Accessed.
    Type: Autre
    Crossref
  40. (s. d.). Natri H. Spectrum 10K and the questionable past present and future of genetic autism research. 2021.
    Type: Autre
    Crossref
  41. Matthew J Hollocks , Jian Wei Lerh , Iliana Magiati , Richard Meiser-Stedman , Traolach Brugha (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis . Psychological Medicine, 49(4), 559-572. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291718002283 OpenAlex: https://openalex.org/W2889987209
    Crossref OpenAlex
  42. Felicity K Boardman , Rachel Hale (2018). How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening . Molecular Genetics & Genomic Medicine, 6(6), 941-956. Wiley.
    Type: Article DOI: 10.1002/mgg3.463 OpenAlex: https://openalex.org/W2891140221
    Crossref OpenAlex
  43. Katharine Sanderson (2021). High-profile autism genetics project paused amid backlash . Nature, 598(7879), 17-18. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/d41586-021-02602-7 OpenAlex: https://openalex.org/W3203258513
    Crossref OpenAlex
  45. den Houting J (2021). Participatory and inclusive autism research practice guides . Participatory and Inclusive Autism Research Practice Guides, 192236536X.
    Type: Autre
    Crossref
  48. (s. d.). Centre for Inclusive Design. Easy English versus plain English. https://centreforinclusivedesign.org.au/blog/2021/12/10/easy-english-versus-plain-english-guide/ Published 2020. Accessed.
    Type: Autre
    Crossref
  49. James Rowlands (2021). Interviewee Transcript Review as a Tool to Improve Data Quality and Participant Confidence in Sensitive Research . International Journal of Qualitative Methods, 20. SAGE Publications.
    Type: Article DOI: 10.1177/16094069211066170 OpenAlex: https://openalex.org/W4205562689
    Crossref OpenAlex
  50. Virginia Braun , Victoria Clarke (2022). Thematic Analysis . Dans Encyclopedia of Quality of Life and Well-Being Research (pp. 1-7). Springer International Publishing.
    Type: Chapitre de livre DOI: 10.1007/978-3-319-69909-7_3470-2 OpenAlex: https://openalex.org/W4320081749
    Crossref OpenAlex
  51. Tracy B. Grossman , Stephen T. Chasen (2020). Abortion for Fetal Genetic Abnormalities: Type of Abnormality and Gestational Age at Diagnosis . American Journal of Perinatology Reports, 10(01), e87-e92. Georg Thieme Verlag KG.
    Type: Article DOI: 10.1055/s-0040-1705173 OpenAlex: https://openalex.org/W3010942287
    Crossref OpenAlex
  52. Christian P. Schaaf , Catalina Betancur , Ryan K. C. Yuen , Jeremy R. Parr , David H. Skuse , Louise Gallagher et al. (2020). A framework for an evidence-based gene list relevant to autism spectrum disorder . Nature Reviews Genetics, 21(6), 367-376. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41576-020-0231-2 OpenAlex: https://openalex.org/W3017117216
    Crossref OpenAlex
  53. Fryer T (2020). A short guide to ontology and epistemology: Why everyone should be a critical realist . A short guide to ontology and epistemology: Why everyone should be a critical realist.
    Type: Autre
    Crossref
  54. Felicity K. Boardman (2021). Whose life is worth preserving? Disabled people and the expressivist objection to neonatology . Acta Paediatrica, 110(2), 391-393. Wiley.
    Type: Article DOI: 10.1111/apa.15336 OpenAlex: https://openalex.org/W3022617524
    Crossref OpenAlex
  55. M. Ariel Cascio , Jonathan A. Weiss , Éric 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), 1676-1690. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320918763 OpenAlex: https://openalex.org/W3036990083
    Crossref OpenAlex
  56. (s. d.). NVivo [computer program]. Version 14. 23. 02023.
    Type: Autre
    Crossref
  57. Anne Honey , Katherine M. Boydell , Francesca Coniglio , Trang Thuy Do , Leonie Dunn , Katherine Gill et al. (2020). Lived experience research as a resource for recovery: a mixed methods study . BMC Psychiatry, 20(1), 456-456. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-020-02861-0 OpenAlex: https://openalex.org/W3087707867
    Crossref OpenAlex
  58. Felicity K. Boardman (2021). Attitudes toward population screening among people living with fragile X syndrome in the UK: ‘I wouldn’t wish him away, I’d just wish his fragile X syndrome away’ . Journal of Genetic Counseling, 30(1), 85-97. Wiley.
    Type: Article DOI: 10.1002/jgc4.1355 OpenAlex: https://openalex.org/W3104714435
    Crossref OpenAlex
  59. Paul Steven Miller , Rebecca Leah Levine (2013). Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities . Genetics in Medicine, 15(2), 95-102. Elsevier BV.
    Type: Article DOI: 10.1038/gim.2012.102 OpenAlex: https://openalex.org/W3124158599
    Crossref OpenAlex
  60. Laurel Richardson (2000). Evaluating Ethnography . Qualitative Inquiry, 6(2), 253-255. SAGE Publications.
    Type: Article DOI: 10.1177/107780040000600207 OpenAlex: https://openalex.org/W4255254336
    Crossref OpenAlex
  63. Tracy Finch , Joan Mackintosh , Alex Petrou , Helen McConachie , Ann Le Couteur , Deborah Garland et al. (2022). “We couldn’t think in the box if we tried. We can’t even find the damn box”: A qualitative study of the lived experiences of autistic adults and relatives of autistic adults . PLOS ONE, 17(3), e0264932. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0264932 OpenAlex: https://openalex.org/W4221104382
    Crossref OpenAlex
  64. Felicity Boardman , Gareth Thomas (2023). Expressivist objections to prenatal screening and testing: Perceptions of people living with disability . Sociology of Health & Illness, 45(6), 1223-1241. Wiley.
    Type: Article DOI: 10.1111/1467-9566.13559 OpenAlex: https://openalex.org/W4298326603
    Crossref OpenAlex
  67. Jacky (Manidoomakwakwe) Ellis (2023). Imagining Neurodivergent Futures from the Belly of the Identity Machine: Neurodiversity, Biosociality, and Strategic Essentialism . Autism in Adulthood, 5(3), 225-235. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0075 OpenAlex: https://openalex.org/W4313462048
    Crossref OpenAlex
  68. John H. Ward , Elizabeth M Weir , Carrie Allison , Simon Baron-Cohen (2023). Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults . Molecular Autism, 14(1), 35-35. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-023-00565-2 OpenAlex: https://openalex.org/W4386892471
    Crossref OpenAlex
  69. Carolina Baeza-Velasco , Judith Vergne , Marianna Poli , Larissa Kalisch , Raffaella Calati (2025). Autism in the context of joint hypermobility, hypermobility spectrum disorders, and Ehlers–Danlos syndromes: A systematic review and prevalence meta-analyses . Autism, 29(8), 1939-1958. SAGE Publications.
    Type: Article DOI: 10.1177/13623613251328059 OpenAlex: https://openalex.org/W4408906503
    Crossref OpenAlex
  70. Agebjörn J (2024). Association between autism and PTSD among adult psychiatric outpatients . J Autism Dev Disord, 10.1007/s10803.
    Type: Autre
    Crossref
  71. Whitehorne-Smith P (2023). Australasian Autism Research Council 2023 Research Priority Update: focus on five priority areas . Australasian Autism Research Council 2023 Research Priority Update: focus on five priority areas.
    Type: Autre
    Crossref
  73. Haar T (2024). ‘We have so much to offer’: Community members’ perspectives on autism research . Autism, 136236132412487.
    Type: Autre
    Crossref
  74. (s. d.). Australian Autism Research Council. Australian Autism Research Council: 2019 Research priorities. 2019.
    Type: Autre
    Crossref
  75. (s. d.). Simpson K van der Meer L Adams D et al. A systematic review of how quality of life and wellbeing is measured in autistic individuals with and without complex support and/or communication needs. 2023.
    Type: Autre
    Crossref
  76. (s. d.). Cooperative Research Centre for Living with Autism. Inclusive research practice guides and checklists for autism research. 2016.
    Type: Autre
    Crossref