Commentary: Addressing stigma through relational research design
Heyworth, M. (2024). Commentary: Addressing stigma through relational research design. Neurodiversity, 2. https://doi.org/10.1177/27546330241230428
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Abstract
The history of research on parenting autistic children is complicated by the inheritance of “mother-blaming,” which continues to occur, albeit indirectly or implicitly. Parents of autistic children often experience and internalize stigma, which arises from the messaging that suboptimal parenting can exacerbate a child's autistic traits. This stigmatization is echoed by parents of other neurodivergent groups, including ADHD. For neurodivergent parents of neurodivergent children, this stigma may be compounded, since stigma is experienced both as a neurodivergent individual, and as the parent of a neurodivergent individual. Researchers have an ethical duty to pay attention to experiences of stigma when we study any vulnerable group so that stigma does not become a barrier to participation. In this commentary, I critically reflect on a study I designed, which did not adequately address parents’ potential stigma or sufficiently anticipate the impact of experiences of stigma on participation. I then outline the steps I took to modify the design, framed within a relational ethics of care, to acknowledge and account for the stigma that might have otherwise excluded parents of autistic children—especially parents who are autistic and otherwise neurodivergent themselves—from participating.
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-
Mitzi M. Waltz (2015). Mothers and Autism: The Evolution of a Discourse of Blame . AMA Journal of Ethics, 17(4), 353-358. American Medical Association (AMA).Type: Article DOI: 10.1001/journalofethics.2015.17.4.mhst1-1504 OpenAlex: https://openalex.org/W235035220Crossref OpenAlex OpenCitations
-
Holly Allen (2017). Bad Mothers and Monstrous Sons: Autistic Adults, Lifelong Dependency, and Sensationalized Narratives of Care . Journal of Medical Humanities, 38(1), 63-75. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Ruth Gwernan‐Jones , Darren A. Moore , Ruth Garside , Michelle Richardson , Jo Thompson‐Coon , Morwenna Rogers et al. (2015). ADHD, parent perspectives and parent–teacher relationships: grounds for conflict . British Journal of Special Education, 42(3), 279-300. Wiley.Crossref OpenAlex OpenCitations
-
Nel Noddings (2019). Caring . University of California Press.Crossref OpenAlex OpenCitations
-
Linda M. Blum (2007). Mother-Blame in the Prozac Nation . Gender & Society, 21(2), 202-226. SAGE Publications.Crossref OpenAlex OpenCitations
-
Kevin Ka Shing Chan , Chun Bun Lam (2018). Self-stigma among parents of children with autism spectrum disorder . Research in Autism Spectrum Disorders, 48, 44-52. Elsevier BV.Crossref OpenAlex OpenCitations
-
Sandra Eldridge , Sally Kerry (2012). Pilot and Feasibility Studies . In A Practical Guide to Cluster Randomised Trials in Health Services Research (pp. 60-73). Wiley.OpenAlex
-
JONATHYNE BRIGGS (2020). THE ENDURING FORTRESS: THE INFLUENCE OF BRUNO BETTELHEIM IN THE POLITICS OF AUTISM IN FRANCE . Modern Intellectual History, 17(4), 1163-1191. Cambridge University Press (CUP).Crossref OpenAlex OpenCitations
-
Timothy R. Broady , Gerard Stoyles , Corinne Morse (2017). Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum . Health & Social Care in the Community, 25(1), 224-233. Hindawi Limited.Crossref OpenAlex OpenCitations
-
Barbara Groot , Annyk Haveman , Tineke Abma (2022). Relational, ethically sound co-production in mental health care research: epistemic injustice and the need for an ethics of care . Critical Public Health, 32(2), 230-240. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Alexandra Harborne , Miranda Wolpert , Linda Clare (2004). Making Sense of ADHD: A Battle for Understanding? Parents' Views of Their Children Being Diagnosed with ADHD . Clinical Child Psychology and Psychiatry, 9(3), 327-339. SAGE Publications.Crossref OpenAlex OpenCitations
-
M. Ariel Cascio , Jonathan A. Weiss , Éric Racine (2020). Person‐Oriented Research Ethics to Address the Needs of Participants on the Autism Spectrum . Ethics & Human Research, 42(5), 2-16. Wiley.Crossref OpenAlex OpenCitations
-
Mirka Koro-Ljungberg , Regina Bussing (2009). The Management of Courtesy Stigma in the Lives of Families With Teenagers With ADHD . Journal of Family Issues, 30(9), 1175-1200. SAGE Publications.Crossref OpenAlex OpenCitations
-
Susan L. Neely-Barnes , Heather R. Hall , Ruth J. Roberts , J. Carolyn Graff (2011). Parenting a Child With an Autism Spectrum Disorder: Public Perceptions and Parental Conceptualizations . Journal of Family Social Work, 14(3), 208-225. Informa UK Limited.Crossref OpenAlex OpenCitations
-
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.Crossref OpenAlex OpenCitations
-
Amber-Sophie Dugdale , Andrew R. Thompson , Alexandra Leedham , Nigel Beail , Megan Freeth (2021). Intense connection and love: The experiences of autistic mothers . Autism, 25(7), 1973-1984. SAGE Publications.Crossref OpenAlex OpenCitations
-
David Farrugia (2009). Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder . Sociology of Health & Illness, 31(7), 1011-1027. Wiley.Crossref OpenAlex OpenCitations
-
Noor Shuhada Salleh , Khatijah Lim Abdullah , Tang Li Yoong , Subhashini Jayanath , Maruzairi Husain (2020). Parents' Experiences of Affiliate Stigma when Caring for a Child with Autism Spectrum Disorder (ASD): A Meta-Synthesis of Qualitative Studies . Journal of Pediatric Nursing, 55, 174-183. Elsevier BV.Crossref OpenAlex OpenCitations
-
María C. Fernández , Emily Arcia (2004). Disruptive Behaviors and Maternal Responsibility: A Complex Portrait of Stigma, Self-Blame, and Other Reactions . Hispanic Journal of Behavioral Sciences, 26(3), 356-372. SAGE Publications.Crossref OpenAlex OpenCitations
-
Elodie Charbonnier , Serge Caparos , Bastien Trémolière (2019). The role of mothers’ affiliate stigma and child’s symptoms on the distress of mothers with ADHD children . Journal of Mental Health, 28(3), 282-288. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Rachael Stacey , Eilidh Cage (2023). “Simultaneously Vague and Oddly Specific”: Understanding Autistic People's Experiences of Decision Making and Research Questionnaires . Autism in Adulthood, 5(3), 263-274. SAGE Publications.Crossref OpenAlex OpenCitations
-
Carole A. Robinson , Kaley York , Alexandra Rothenberg , Laura J. L. Bissell (2015). Parenting a Child with Asperger’s Syndrome: A Balancing Act . Journal of Child and Family Studies, 24(8), 2310-2321. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Isabelle Courcy , Catherine des Rivières (2017). “From cause to cure”: A qualitative study on contemporary forms of mother blaming experienced by mothers of young children with autism spectrum disorder . Journal of Family Social Work, 20(3), 233-250. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Belinda A. Gargaro , Nicole Rinehart , John L. Bradshaw , Bruce J. Tonge , Dianne M. Sheppard (2011). Autism and ADHD: How far have we come in the comorbidity debate? Neuroscience & Biobehavioral Reviews, 35(5), 1081-1088. Elsevier BV.Crossref OpenAlex OpenCitations
-
David E. Gray (2002). ‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism . Sociology of Health & Illness, 24(6), 734-749. Wiley.Crossref OpenAlex OpenCitations
-
Jenny L. Davis , Bianca Manago (2016). Motherhood and associative moral stigma: The moral double bind. Stigma and Health, 1(2), 72-86. American Psychological Association (APA).Crossref OpenAlex OpenCitations
-
Patty Douglas , Estée Klar (2019). Beyond disordered brains and mother blame . In The Routledge Companion to Motherhood (pp. 205-214). Routledge.Crossref OpenAlex OpenCitations
-
Sydney H. Kinnear , Bruce G. Link , Michelle S. Ballan , Ruth L. Fischbach (2016). Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives . Journal of Autism and Developmental Disorders, 46(3), 942-953. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Ellis C. (2017). The Routledge international handbook on narrative and life history . The Routledge international handbook on narrative and life history, 432.Type: OtherCrossref
-
Fiona Robinson (2020). Resisting hierarchies through relationality in the ethics of care . International Journal of Care and Caring, 4(1), 11-23. Bristol University Press.Crossref OpenAlex OpenCitations
-
Chloe Farahar *Autistic author. Learn more… (2022). Autistic identity, culture, community, and space for well-being . In The Routledge International Handbook of Critical Autism Studies (pp. 229-241). Routledge.
-
Rozanna Lilley , Wenn Lawson *Autistic author. Learn more… , Gabrielle Hall *Autistic author. Learn more… , Joanne Mahony , Hayley Clapham *Autistic author. Learn more… , Melanie Heyworth *Autistic author. Learn more… et al. (2022). ‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood . Autism, 26(6), 1395-1408. SAGE Publications.
-
Orit Karnieli-Miller , Roni Strier , Liat Pessach (2009). Power Relations in Qualitative Research . Qualitative Health Research, 19(2), 279-289. SAGE Publications.Crossref OpenAlex OpenCitations
-
Jessica Gill , Pranee Liamputtong (2011). Being the Mother of a Child With Asperger's Syndrome: Women's Experiences of Stigma . Health Care for Women International, 32(8), 708-722. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Gloria Filax , Dena Taylor (2019). Disabled mothers . In The Routledge Companion to Motherhood (pp. 77-88). Routledge.Crossref OpenAlex OpenCitations
-
Rozanna Lilley (2013). Crying in the park: Autism stigma, school entry and maternal subjectivity . Studies in the Maternal, 5(2). Open Library of the Humanities.Crossref OpenAlex OpenCitations
-
Sue Fletcher‐Watson , Kenneth Larsen , Erica Salomone , Members of the COST ESSEA Working Groups (2019). What do parents of children with autism expect from participation in research? A community survey about early autism studies . Autism, 23(1), 175-186. SAGE Publications.Crossref OpenAlex OpenCitations
-
Kaaren Haas , Debra Costley , Marita Falkmer , Amanda L. Richdale , Kate Sofronoff , Torbjörn Falkmer (2016). Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 46(5), 1793-1805. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Helen McConachie , Colin Wilson , David Mason , Deborah Garland , Jeremy R. Parr , Alexia Rattazzi et al. (2020). What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries . Autism in Adulthood, 2(1), 4-12. SAGE Publications.Crossref OpenAlex OpenCitations
-
Tally Moses (2013). Stigma and family. In The stigma of disease and disability: Understanding causes and overcoming injustices. (pp. 247-268). American Psychological Association.Crossref OpenAlex OpenCitations
-
Cath Rogers , Laurence Lepherd , Rahul Ganguly , Sebastian Jacob-Rogers (2017). Perinatal issues for women with high functioning autism spectrum disorder . Women and Birth, 30(2), e89-e95. Elsevier BV.Crossref OpenAlex OpenCitations
-
Amy E. Hurley-Hanson , Cristina M. Giannantonio , Amy Jane Griffiths (2020). Autism in the Workplace . Springer International Publishing.Crossref OpenAlex OpenCitations
-
Pamela Ventola , Jiedi Lei , Courtney Paisley , Eli Lebowitz , Wendy Silverman (2017). Parenting a Child with ASD: Comparison of Parenting Style Between ASD, Anxiety, and Typical Development . Journal of Autism and Developmental Disorders, 47(9), 2873-2884. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Emeline Han , Katrina Scior , Eric Heath , Kana Grace , Laura Crane (2023). Development of stigma-related support for autistic adults: Insights from the autism community . Autism, 27(6), 1676-1689. SAGE Publications.Crossref OpenAlex OpenCitations
-
Pei-Yun Lin , Wen-Jiun Chou , Ray C. Hsiao , Tai-Ling Liu , Cheng-Fang Yen (2023). Association of Affiliate Stigma with Parenting Stress and Its Moderators among Caregivers of Children with Attention-Deficit/Hyperactivity Disorder . International Journal of Environmental Research and Public Health, 20(4), 3192. MDPI AG.Crossref OpenAlex OpenCitations
-
Meisie Mofokeng , Anna E van der Wath (2017). Challenges experienced by parents living with a child with attention deficit hyperactivity disorder . Journal of Child & Adolescent Mental Health, 29(2), 137-145. National Inquiry Services Center (NISC).Crossref OpenAlex OpenCitations
-
Heyworth M. (2023). I’m the family ringmaster and juggler’: Autistic parents’ experiences of parenting during the COVID-19 pandemic . Autism in Adulthood, 5(1), 24.Type: OtherCrossref
-
Kathy Leadbitter , Kathy Leadbitter , Catherine Aldred , Helen McConachie , Ann Le Couteur , Tony Charman et al. (2018). The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention . Journal of Autism and Developmental Disorders, 48(4), 1052-1062. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Helen McConachie , David Mason , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People . Journal of Autism and Developmental Disorders, 48(5), 1596-1611. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Sandra Thom-Jones *Autistic author. Learn more… (2022). Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools . Autism in Adulthood, 4(2), 104-109. SAGE Publications.
-
Sophie Leitch , Emma Sciberras , Brittany Post , Bibi Gerner , Nicole Rinehart , Jan M. Nicholson et al. (2019). Experience of stress in parents of children with ADHD: A qualitative study . International Journal of Qualitative Studies on Health and Well-being, 14(1), 1690091-1690091. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Ivor Goodson (2016). The Routledge International Handbook on Narrative and Life History . Routledge.OpenAlex
-
Alice Turnock , Kate Langley , Catherine R.G. Jones (2022). Understanding Stigma in Autism: A Narrative Review and Theoretical Model . Autism in Adulthood, 4(1), 76-91. SAGE Publications.Crossref OpenAlex OpenCitations
-
Xiaoli Liao , Xianyang Lei , Yamin Li (2019). Stigma among parents of children with autism: A literature review . Asian Journal of Psychiatry, 45, 88-94. Elsevier BV.Crossref OpenAlex OpenCitations
-
Ahmet Özaslan , Murat Yıldırım (2021). Internalized stigma and self esteem of mothers of children diagnosed with attention deficit hyperactivity disorder . Children's Health Care, 50(3), 312-324. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Lenny van Rosmalen , René van der Veer , Frank CP van der Horst (2020). The nature of love: Harlow, Bowlby and Bettelheim on affectionless mothers . History of Psychiatry, 31(2), 227-231. SAGE Publications.Crossref OpenAlex OpenCitations
-
Thaddeus Metz , Sarah Clark Miller (2016). Relational Ethics . The International Encyclopedia of Ethics, 1-10. Wiley.Crossref OpenAlex OpenCitations
-
Lodder A. (2019). Stigma of living as an autism carer: A brief psycho-social support intervention (SOLACE). Study protocol for a randomised controlled feasibility study . Pilot and Feasibility Studies, 5(34).Type: OtherCrossref
-
Elizabeth Pellicano , Wenn Lawson *Autistic author. Learn more… , Gabrielle Hall *Autistic author. Learn more… , Joanne Mahony , Rozanna Lilley , Melanie Heyworth *Autistic author. Learn more… et al. (2022). “I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project . Autism in Adulthood, 4(2), 120-129. SAGE Publications.
-
Pohl A. L. (2020). A comparative study of autistic and non-autistic women’s experience of motherhood . Molecular Autism, 11(3).Type: OtherCrossref