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Journal of Autism and Developmental Disorders

26-04-2024 | Original Article

Autistic Women’s Experience of Motherhood: A Qualitative Analysis of Reddit

Auteurs: Sandra Thom-Jones, Imogen Melgaard, Chloe S. Gordon

Gepubliceerd in: Journal of Autism and Developmental Disorders

Abstract

Autistic mothers remain under-represented in parental and autism research despite the associated physical and psychosocial challenges that accompany the transition to motherhood. Extant literature suggests autistic mothers experience sensory difficulties, communication challenges, stigma, and comorbidities as difficulties, but these studies have focused on autistic women in the perinatal period. The aim of this study was to examine reflections on motherhood from a Reddit community for autistic parents. Identified themes were Autistic Mothering is Different, Autistic Mothers Need Autistic Mothers, Autistic Mothers Experience Stigma, and Learnings from Lockdown. Findings extend existing research by offering insight into the ways autism impacts mothers beyond the perinatal period and have important implications for the future design and delivery of support services for autistic mothers.

‘Data scraping’ refers to the process of using a computer program to extract data from another program (Marres & Weltevrede, 2013).

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787

Ammari, T., Schoenebeck, S., & Romero, D. (2019). Self-declared throwaway accounts on Reddit: How platform affordances and shared norms enable parenting disclosure and support. Proceedings of the ACM on Human-Computer Interaction, 3(135), 1–30. https://doi.org/10.1145/3359237CrossRef

Australian Government. (2010). National Standards for Mental Health Services 2010. Australian Government. https://www1.health.gov.au/internet/publications/publishing.nsf/Content/mental-pubs-n-servst10-toc~mental-pubs-n-servst10-st3

Aylott, J. (2010). Improving access to health and social care for people with autism. Nursing Standard, 24(27), 47–56. https://doi.org/10.7748/ns2010.03.24.27.47.c7621CrossRefPubMed

Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281–3294. https://doi.org/10.1007/s10803-016-2872-8CrossRefPubMedCentralPubMed

Biggs, L. J., Shafiei, T., Forster, D. A., Small, R., & McLachlan, H. L. (2015). Exploring the views and experiences of callers to the PANDA Post and Antenatal Depression Association Australian National Perinatal Depression Helpline: A cross-sectional survey. BMC Pregnancy and Childbirth, 15(1), 1–15. https://doi.org/10.1186/s12884-015-0594-0CrossRef

Boettcher, N. (2021). Studies of depression and anxiety using Reddit as a data source: Scoping review. JMIR Mental Health, 8(11):e29487. https://doi.org/10.2196/29487

Braun, V., & Clarke, V. (2014). What can “thematic analysis” offer health and wellbeing researchers? International Journal of Qualitative Studies on Health and Well-Being, 9(1), 26152. https://doi.org/10.3402/qhw.v9.26152CrossRefPubMed

Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806CrossRef

Carter, E. W., Gustafson, J. R., Sreckovic, M. A., Steinbrenner, J. R. D., Pierce, N. P., Bord, A., Stabel, A., Rogers, S., Czerw, A., & Mullins, T. (2017). Efficacy of peer support interventions in general education classrooms for high school students with autism spectrum disorder. Remedial and Special Education, 38(4), 207–221. https://doi.org/10.1177/0741932516672067CrossRef

Chi, Y., & Chen, H. (2023). Investigating Substance Use via Reddit: Systematic Scoping Review. Journal of Medical Internet Research, 25:e48905. https://doi.org/10.2196/48905

Dewinter, J., De Graaf, H., & Begeer, S. (2017). Sexual orientation, gender identity, and romantic relationships in adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(9), 2927–2934. https://doi.org/10.1007/s10803-017-3199-9CrossRefPubMedCentralPubMed

Donovan, J. (2020). Childbirth experiences of women with autism spectrum disorder in an acute care setting. Nursing for Women’s Health, 24(3), 165–174. https://doi.org/10.1016/j.nwh.2020.04.001CrossRefPubMed

Eldevik, S., Hastings, R. P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Meta-analysis of early intensive behavioral intervention for children with autism. Journal of Clinical Child & Adolescent Psychology, 38(3), 439–450. https://doi.org/10.1080/15374410902851739CrossRef

Forster, D. A., McLardie-Hore, F. E., McLachlan, H. L., Davey, M. A., Grimes, H. A., Dennis, C. L., Mortensen, K., Moorhead, A. M., Tawia, S., Gold, L., Shafiei, T., Small, R., East, C. E., & Amir, L. H. (2019). Proactive peer (mother-to-mother) breastfeeding support by telephone (ringing up about breastfeeding early [RUBY]): A multicentre, unblinded, randomised controlled trial. EClinicalMedicine, 8, 20–28. https://doi.org/10.1016/j.eclinm.2019.02.003CrossRefPubMedCentralPubMed

Gardner, M., Suplee, P. D., Bloch, J., & Lecks, K. (2016). Exploratory study of childbearing experiences of women with Asperger syndrome. Nursing for Women’s Health, 20(1), 28–37. https://doi.org/10.1016/j.nwh.2015.12.001CrossRefPubMed

George, R., & Stokes, M. A. (2018). Gender identity and sexual orientation in autism spectrum disorder. Autism, 22(8), 970–982. https://doi.org/10.1177/1362361317714587CrossRefPubMed

Green, J., & Thorogood, N. (2004). Qualitative methods for health research. Sage.

Halladay, A. K., Bishop, S., Constantino, J. N., Daniels, A. M., Koenig, K., Palmer, K., Messinger, D., Pelphrey, K., Sanders, S. J., Singer, A. T., Taylor, J. L., & Szatmari, P. (2015). Sex and gender differences in autism spectrum disorder: Summarizing evidence gaps and identifying emerging areas of priority. Molecular Autism, 6(1), 1–5. https://doi.org/10.1186/s13229-015-0019-yCrossRef

Hollander, E., Cartwright, C., Wong, C. M., DeCaria, C. M., DelGiudice-Asch, G., Buchsbaum, M. S., & Aronowitz, B. R. (1998). A dimensional approach to the autism spectrum. CNS Spectrums, 3(3), 22–39. https://doi.org/10.1017/S1092852900005678CrossRef

Hosozawa, M., Cable, N., Ikeda, A., Dong, J.-Y., Ikehara, S., & Iso, H. (2021). Risk of postpartum depression and very early child mistreatment among mothers reporting higher autistic traits: Evidence from the Japan Environment and Children’s Study. Journal of Affective Disorders, 280, 11–16. https://doi.org/10.1016/j.jad.2020.10.073CrossRefPubMed

Howlin, P., & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinions in Psychiatry, 30(2), 69–76. https://doi.org/10.1097/yco.0000000000000308CrossRef

Jamnik, M., & Lane, D. (2017). The use of Reddit as an inexpensive source for high-quality data. Practical Assessment, Research & Evaluation, 22, 1–10. https://doi.org/10.7275/j18t-c009CrossRef

Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215. https://doi.org/10.1542/peds.2007-2361CrossRefPubMed

Landa, R. J. (2018). Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. International Review of Psychiatry, 30(1), 25–39. https://doi.org/10.1080/09540261.2018.1432574CrossRefPubMed

Levitt, H. M., Motulsky, S. L., Wertz, F. J., Morrow, S. L., & Ponterotto, J. G. (2017). Recommendations for designing and reviewing qualitative research in psychology: Promoting methodological integrity. Qualitative Psychology (Washington, D.C.), 4(1), 2–22. https://doi.org/10.1037/qup0000082

Litchman, M. L., Tran, M. J., Dearden, S. E., Guo, J. W., Simonsen, S. E., & Clark, L. (2019). What women with disabilities write in personal blogs about pregnancy and early motherhood: Qualitative analysis of blogs. JMIR Pediatrics and Parenting, 2(1), e12355. https://doi.org/10.2196/12355CrossRefPubMedCentralPubMed

Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013CrossRef

Marres, N., & Weltevrede, E. (2013). Scraping the social? Issues in live social research. Journal of Cultural Economy, 6(3), 313–335. https://doi.org/10.1080/17530350.2013.772070CrossRef

Mason, A., Jang, K., Morley, K., Scarf, D., Collings, S. C., & Riordan, B. C. (2021). A content analysis of Reddit users’ perspectives on reasons for not following through with a suicide attempt. Cyberpsychology, Behavior, and Social Networking. Advance online publication. https://doi.org/10.1089/cyber.2020.0521

McCurdy, E. E., & Cole, C. L. (2014). Use of a peer support intervention for promoting academic engagement of students with autism in general education settings. Journal of Autism and Developmental Disorders, 44(4), 883–893. https://doi.org/10.1007/s10803-013-1941-5CrossRefPubMed

McDonnell, C. G., & DeLucia, E. A. (2021). Pregnancy and parenthood among autistic adults: Implications for advancing maternal health and parental wellbeing. Autism in Adulthood, 3(1), 1–115. https://doi.org/10.1089/aut.2020.0046CrossRef

Mead, S., Hilton, D., & Curtis, L. (2001). Peer support: A theoretical perspective. Psychiatric Rehabilitation Journal, 25(2), 134–141. https://doi.org/10.1037/h0095032CrossRefPubMed

Meilleur, A.-A.S., Jelenic, P., & Mottron, L. (2015). Prevalence of clinically and empirically defined talents and strengths in autism. Journal of Autism and Developmental Disorders, 45(5), 1354–1367. https://doi.org/10.1007/s10803-014-2296-2CrossRefPubMed

Melton, C. A., Olusanya, O. A., Ammar, N., & Shaban-Nejad, A. (2021). Public sentiment analysis and topic modeling regarding COVID-19 vaccines on the Reddit social media platform: A call to action for strengthening vaccine confidence. Journal of Infection and Public Health, 14(10), 1505–1512. https://doi.org/10.1016/j.jiph.2021.08.010CrossRefPubMedCentralPubMed

Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E. V., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 824–831. https://doi.org/10.1177/1362361315576221CrossRefPubMedCentralPubMed

Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52–60. https://doi.org/10.1089/aut.2020.0043CrossRefPubMedCentralPubMed

Pilkington, P. D., & Rominov, H. (2017). Fathers’ worries during pregnancy: A qualitative content analysis of Reddit. The Journal of Perinatal Education, 26(4), 208–218. https://doi.org/10.1891/1058-1243.26.4.208CrossRefPubMedCentralPubMed

Pohl, A. L., Crockford, S. K., Blakemore, M., Allison, C., & Baron-Cohen, S. (2020). A comparative study of autistic and non-autistic women’s experience of motherhood. Molecular Autism, 11(1), 3. https://doi.org/10.1186/s13229-019-0304-2CrossRefPubMedCentralPubMed

PurpleElla. (2017, September 14). AUTISTIC MOTHER. YouTube. https://www.youtube.com/watch?v=Dol2JO--tjw

QSR International Pty Ltd. (2020). NVivo (released in March 2020), https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Santos, A. D., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in Adulthood, 2(2), 132–143. https://doi.org/10.1089/aut.2019.0079CrossRefPubMed

Ritchie, J., Lewis, J., & Elam, G. (2003). Designing and selecting samples. In J. Ritchie & J. Lewis (Eds.), Qualitative research practice: A guide for social science students and researchers (pp. 77–108). Sage.

Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology in autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 957–976. https://doi.org/10.1016/j.rasd.2010.12.003CrossRef

Rogers, C., Lepherd, L., Ganguly, R., & Jacob-Rogers, S. (2017). Perinatal issues for women with high functioning autism spectrum disorder. Women and Birth, 30(2), e89–e95. https://doi.org/10.1016/j.wombi.2016.09.009CrossRefPubMed

Rosqvist, H. (2019). Knowing what to do: Exploring meanings of development and peer support aimed at people with autism. International Journal of Inclusive Education, 23(2), 174–187. https://doi.org/10.1080/13603116.2018.1427807CrossRef

Ryan, A. (2006). Post-positivist approaches to research. In M. Antonesa (Ed.), Researching and writing your thesis: A guide for postgraduate students (pp. 12–26). MACE: Maynooth Adult and Community Education.

Savin-Baden, M., & Major, C. H. (2013). Qualitative research: The essential guide to theory and practice. Routledge.

Shalaby, R. A. H., & Agyapong, V. I. (2020). Peer support in mental health: Literature review. JMIR Mental Health, 7(6), e15572. https://doi.org/10.2196/15572CrossRefPubMedCentralPubMed

Sowles, S. J., McLeary, M., Optican, A., Cahn, E., Krauss, M. J., Fitzsimmons-Craft, E. E., Wilfley, D. E., & Cavazos-Rehg, P. A. (2018). A content analysis of an online pro-eating disorder community on Reddit. Body Image, 24, 137–144. https://doi.org/10.1016/j.bodyim.2018.01.001CrossRefPubMedCentralPubMed

Sundelin, H. E., Stephansson, O., Hultman, C. M., & Ludvigsson, J. F. (2018). Pregnancy outcomes in women with autism: A nationwide population-based cohort study. Clinical Epidemiology, 10, 1817–1826. https://doi.org/10.2147/CLEP.S176910CrossRefPubMedCentralPubMed

Teague, S. J., & Shatte, A. B. R. (2021). Peer support of fathers on Reddit: Quantifying the stressors, behaviors, and drivers. Psychology of Men & Masculinities. Advance Online Publication. https://doi.org/10.1037/men0000353CrossRef

Trevarthen, C. (1998). Children with autism: Diagnosis and interventions to meet their needs. Jessica Kingsley Publishers.

YoSamdySam. (2019, August 3). Being an AUTISTIC mother: What’s it like? YouTube. https://www.youtube.com/watch?v=dKAF48NSsJI

Titel: Autistic Women’s Experience of Motherhood: A Qualitative Analysis of Reddit
Auteurs: Sandra Thom-Jones
Imogen Melgaard
Chloe S. Gordon
Publicatiedatum: 26-04-2024
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-024-06312-7

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