"This changed our course and changed us as parents": Sense of self-continuity inscription in the discourse of parents of children with autism

Manuscript (ελληνικά)
Published: Apr 21, 2026
DOI: https://doi.org/10.12681/psy_hps.45304
Keywords:
parental identity, sense of self-continuity, parental experiences, autism, interpretative phenomenological analysis
Dimitrios Vitzilaios
Department of Primary Education, University of the Aegean
https://orcid.org/0009-0003-4763-1184
Elias Kourkoutas
Department of Primary Education, University of Crete
https://orcid.org/0000-0002-5855-2778
Abstract

The present study addresses the dynamic process of identity formation in parents of children with autism spectrum disorder, as constructed through meaning-making narratives, emotional experiences, and the sense of continuity within their life stories. Within the framework of the qualitative methodology, the research data were collected by conducting in-depth semi-structured interviews, in which seven parents of children with autism spectrum disorder participated, while the method of interpretative phenomenological analysis was applied to generate the findings. The analysis revealed a range of risk and protective factors for the parents’ sense of self-continuity. The experience of autism did not emerge in the parents’ discourse as a biographical disruption, but rather as an opportunity for redefinition and meaning-making of parenthood. The emotional relationship with the child was highlighted as a central element in the construction of the self, contributing to the emergence of newly revised dimensions in the individuals’ identity.

Article Details
  • Section
  • SPECIAL SECTION
Creative Commons License

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

The journal PSYCHOLOGY adopts a Platinum open-access policy. Submission, processing or publication costs are waived by the Hellenic Psychological Society. Papers published in the journal PSYCHOLOGY are licensed under a 'Creative Commons Attribution-ShareAlike 4.0 International' licence. The authors reserve the copyright of their work and grant the journal the right of its first publication. Third-party licensees are allowed to use the published paper immediately after publication as they wish, provided they retain the defined by the license copyright formalities, regarding the reference to its author(s) and its initial publication in the journal PSYCHOLOGY. Moreover, any adjusted work should be shared under the same reuse rights, so with the same CC license.

Downloads
Download data is not yet available.
References
Alimohamadi, A., Ghasemzadeh, M., Fooladi, F., Abdolmohamadi, K., Killikelly, C., & Janghorbanian, Z. (2024). Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder. Journal of Pediatric Nursing, 77, e97-e107. https://doi.org/10.1016/j.pedn.2024.03.036
Banchefsky, S., & Park, B. (2016). The “new father”: Dynamic stereotypes of fathers. Psychology of Men & Masculinity, 17(1), 103–107. https://psycnet.apa.org/doi/10.1037/a0038945
Band‐Winterstein, T., & Avieli, H. (2017). The experience of parenting a child with disability in old age. Journal of Nursing Scholarship, 49(4), 421-428. http://dx.doi.org/10.1111/jnu.12305
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of intellectual disability Research, 51(9), 702-714. https://psycnet.apa.org/doi/10.1111/j.1365-2788.2007.00960.x
Blankenship, J. (2015). Autism as an ambiguous loss: The experience of multiple family members [Doctoral dissertation, Alliant International University]. ProQuest OpenView. https://www.proquest.com/openview/ddb6c976267bbdd546ed378e9e61b88f/1?pq-origsite=gscholar&cbl=18750&diss=y
Bloch, J. S., & Weinstein, J. D. (2009). Families of young children with autism. Social Work in Mental Health, 8(1), 23–40. https://doi.org/10.1080/15332980902932342
Bölte, S. (2014). The power of words: Is qualitative research as important as quantitative research in the study of autism? Autism, 18(2), 67–68. http://dx.doi.org/10.1177/1362361313517367
Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press. http://dx.doi.org/10.2307/j.ctvjhzrh4
Brewin, B. J., Renwick, R., & Fudge Schormans, A. (2008). Parental perspectives of the quality of life in school environments for children with Asperger syndrome. Focus on Autism and other developmental disabilities, 23(4), 242-252. http://dx.doi.org/10.1177/1088357608322997
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167-182. https://doi.org/10.1111/1467-9566.ep11339939
Bury, M. (1991). The sociology of chronic illness: A review research and prospects. Sociology of Health and Illness, 13(4), 451-468. https://doi.org/10.1111/j.1467-9566.1991.tb00522.x
Bury, M. (2001). Illness narratives: Fact or fiction?. Sociology of Health & Illness, 23(3), 263-285. https://doi.org/10.1111/1467-9566.00252
Carter, E., Swedeen, B., Walter, M. C. M., & Moss, C. K. (2012). “I don't have to do this by myself?” Parent-led community conversations to promote inclusion. Research and Practice for Persons with Severe Disabilities, 37(1), 9-23. https://doi.org/10.1177/1044207317739408
Çelik, H., & Halil, E. K. Ş. İ. (2018). Mothers’ reflections of ambiguous loss on personal family functioning in families with autistic children. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 19(4), 723–745. https://doi.org/10.21565/ozelegitimdergisi.383589
Cocks, A. (2008). Researching the lives of disabled children: The process of participant observation in seeking inclusivity. Qualitative Social Work, 7, 163–180. https://doi.org/10.1177/1473325008089628
Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2015). Qualitative research with families living with autism spectrum disorder: Recommendations for conducting semistructured interviews. Journal of Intellectual and Developmental Disability, 40(1), 78-91. http://dx.doi.org/10.3109/13668250.2014.964191
Dababnah, S., & Parish, S. L. (2013). “At a moment, you could collapse”: Raising children with autism in the West Bank. Children and Youth Services Review, 35(10), 1670-1678. http://dx.doi.org/10.1016/j.childyouth.2013.07.007
Davis III, R. F., & Kiang, L. (2020). Parental stress and religious coping by mothers of children with autism. Psychology of Religion and Spirituality, 12(2), 137. https://psycnet.apa.org/doi/10.1037/rel0000183
Erikson, E. H. (1959). Identity and the life cycle [Monograph]. Psychological Issues, 1(1), 1–171.
Fadjukoff, P., Pulkkinen, L., Lyyra, A. L., & Kokko, K. (2016). Parental identity and its relation to parenting and psychological functioning in middle age. Parenting, 16(2), 87-107. https://doi.org/10.1080/15295192.2016.1134989
Firth, I., & Dryer, R. (2013). The predictors of distress in parents of children with autism spectrum disorder.Journal of Intellectual & Developmental Disability, 38, 163–171. https://doi.org/10.3109/13668250.2013.773964
Frantzen, K. K., Lauritsen, M. B., Jørgensen, M., Tanggaard, L., Fetters, M. D., Aikens, J. E., & Bjerrum, M. (2016). Parental self-perception in the autism spectrum disorder literature: Α systematic mixed studies review. Review Journal of Autism and Developmental Disorders, 3(1), 18-36. https://link.springer.com/article/10.1007/s40489-015-0063-8
Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2019). Parent engagement in autism-related care: a qualitative grounded theory study. Health Psychology and Behavioral Medicine, 7(1), 1-18. https://doi.org/10.1080/21642850.2018.1556666
Gergen, K. J., & Gergen M. M, (1997). Narratives of the self. In Hinchman L. P. & Hinchman S. K. (Eds.), Memory, Identity, Community (pp. 161-184). State University of New York Press.
Gulsrud, A. C., Jahromi, L. B., & Kasari, C. (2010). The co-regulation of emotions between mothers and their children with autism. Journal of Autism and Developmental disorders, 40(2), 227-237. https://doi.org/10.1007/s10803-009-0861-x
Habermas, T., & Köber, C. (2015). Autobiographical reasoning is constitutive for narrative identity: The role of the life story for personal continuity. In McLean K. C. & Syed M. (Eds.), The Oxford Handbook of Identity Development (pp. 149-165). Oxford University Press. http://dx.doi.org/10.1080/09658211.2014.920885
Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in Comprehensive Pediatric Nursing, 33(4), 187–204. https://doi.org/10.3109/01460862.2010.528644
Hastings, R. P. (2016). Do children with intellectual and developmental disabilities have a negative impact on other family members? The case for rejecting a negative narrative. International Review of Research in Developmental Disabilities, 50, 165-194. http://dx.doi.org/10.1016/bs.irrdd.2016.05.002
Heydari, A., Shahidi, L. H., & Mohammadpour, A. (2015). Spiritual journey in mothers’ lived experiences of caring for children with autism spectrum disorders. Global Journal of Health Science, 7(6), 79. https://doi.org/10.5539/gjhs.v7n6p79
Howard, K., Katsos, N., & Gibson, J. (2019). Using interpretative phenomenological analysis in autism research. Autism, 23(7), 1871-1876. https://doi.org/10.1177/1362361318823902
Ilias, K., Cornish, K., Kummar, A. S., Park, M. S. A., & Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder (ASD) in Southeast Asia: A systematic review. Frontiers in Psychology, 9, 280. https://doi.org/10.3389/fpsyg.2018.00280
Ίσαρη, Φ. (2006). Ο εαυτός και η ταυτότητα ως διαλογική σχέση και πολιτισμική αφήγηση. Στο Μ. Πουρκός (Επιμ.), Κοινωνικο-ιστορικο-πολιτισμικές προσεγγίσεις στην ψυχολογία και την εκπαίδευση (σσ. 268–280). Ατραπός.
Ίσαρη, Φ., & Πουρκός, Μ. (2015). Ποιοτική μεθοδολογία έρευνας: Εφαρμογές στην ψυχολογία και στην εκπαίδευση. Ελληνικά Ακαδημαϊκά Ηλεκτρονικά Συγγράμματα και Βοηθήματα (Κάλλιπος). https://repository.kallipos.gr/
Jaffe, J., Diamond, M. O., & David, J. (2005). Unsung lullabies: Understanding and coping with infertility. St. Martin's Griffin.
Kaniel, S., & Siman-Tov, A. (2011). Comparison between mothers and fathers in coping with autistic children: A multivariate model. European Journal of Special Needs Education, 26(4), 479-493. https://psycnet.apa.org/doi/10.1080/08856257.2011.597186
Kaspar, P., & Kroese, B. S. (2017). What makes a good mother? An interpretative phenomenological analysis of the views of women with learning disabilities. Women's studies international forum, 62, 107-115. Pergamon. http://dx.doi.org/10.1016/j.wsif.2017.04.005
Keen, S., Lomeli-Rodriguez, M., & Joffe, H. (2022). From challenge to opportunity: Virtual qualitative research during COVID-19 and beyond. International Journal of Qualitative Methods, 21, 1–11. https://doi.org/10.1177/16094069221105075
Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89. https://doi.org/10.1016/j.eurpsy.2018.09.004
Kourkoutas, E., Langher, V., Caldin, R., & Fountoulaki, E. (2012). Experiences of parents of children with autism: Parenting, schooling, and social inclusion of autistic children. In J. Ripoll, A. L. Comunian, & C. M. Brown (Eds.), Expanding horizons: Current research on interpersonal acceptance (pp. 103–125). BrownWalker Press.
Lalvani, P. (2012). Parents' participation in special education in the context of implicit educational ideologies and socioeconomic status. Education and Training in Autism and Developmental Disabilities, 474-486. https://www.jstor.org/stable/23879640
Lalvani, P., & Hale, C. (2015). Squeaky wheels, mothers from hell, and CEOs of the IEP: Parents, privilege, and the “fight” for inclusive education. Understanding and Dismantling Privilege, 5(2), 21-41. https://doi.org/10.1177/15407969241259365
Lester, J. N. (Ed.). (2021). Discursive psychology and disability. Springer Nature. http://dx.doi.org/10.1007/978-3-030-71760-5
Lin, C. R., Tsai, Y. F., & Chang, H. L. (2008). Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: Α qualitative study. Journal of Clinical Nursing, 17(20), 2733-2740. https://doi.org/10.1111/j.1365-2702.2008.02456.x
Lo, C. K., & Wong, S. Y. (2022). The effectiveness of parenting programs in regard to improving parental reflective functioning: Α meta-analysis. Attachment & Human Development, 24(1), 76-92. http://dx.doi.org/10.1080/14616734.2020.1844247
Loukisas, T. D., & Papoudi, D. (2016). Mothers’ experiences of children in the autistic spectrum in Greece: Narratives of development, education and disability across their blogs. International Journal of Disability, Development and Education, 63(1), 64–78. https://doi.org/10.1080/1034912X.2015.1111304
MacLeod, A. (2019). Interpretative phenomenological analysis (IPA) as a tool for participatory research within critical autism studies: A systematic review. Research in Autism Spectrum Disorders, 64, 49-62. https://doi.org/10.1016/j.rasd.2019.04.005
Makino, A., Hartman, L., King, G., Wong, P. Y., & Penner, M. (2021). Parent experiences of autism spectrum disorder diagnosis: A scoping review. Review Journal of Autism and Developmental Disorders, 8(3), 267-284. https://psycnet.apa.org/doi/10.1007/s40489-021-00237-y
McAdams, D. P. (2008). The life story interview. https://www.sesp.northwestern.edu/foley/instruments/interview/
McAdams, D. P., & Cox, K. S. (2010). Self and identity across the life span. In R. M. Lerner & W. F. Overton (Eds.), Handbook of life-span development (Vol. 2, pp. 158–207). Wiley. https://doi.org/10.1002/9780470880166.hlsd002006
McAdams, D. P., & Zapata-Gietl, C. (2015). Three strands of identity development across the human life course: Reading Erik Erikson in full. In K. C. McLean & M. Syed (Eds.), The Oxford handbook of identity development (pp. 81–94). Oxford University Press. https://doi.org/10.1093/oxfordhb/9780199936564.001.0001
McAdams, D. P., & McLean, K. C. (2013). Narrative identity. Current Directions in Psychological Science, 22(3), 233–238. https://doi.org/10.1177/0963721413475622
McLean, K. C., Syed, M., & Shucard, H. (2016). Bringing identity content to the fore: Links to identity development processes. Emerging Adulthood, 4(5), 356-364. https://psycnet.apa.org/doi/10.1177/2167696815626820
Miller, A. L., Love, H. R., Kurth, J. A., & Zagona, A. L. (2019). Parent identity and family-school partnerships: Animating diverse enactments for (special) education decision making. Inclusion, 7(2), 92-110. http://dx.doi.org/10.1352/2326-6988-7.2.92
Milliken, P. J., & Northcott, H. C. (2003). Redefining parental identity: Caregiving and schizophrenia. Qualitative Health Research, 13(1), 100-113. https://doi.org/10.1177/1049732302239413
Mueller, T. G., & Buckley, P. C. (2014). Fathers’ experiences with the special education system: The overlooked voice. Research and Practice for Persons with Severe Disabilities, 39(2), 119–135. https://doi.org/10.1177/1540796914544548
Murray, S. J., & Holmes, D. (2014). Interpretive phenomenological analysis (IPA) and the ethics of body and place: Critical methodological reflections. Human Studies, 37(1), 15-30. http://dx.doi.org/10.1007/s10746-013-9282-0
O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56(2), 135-146. http://dx.doi.org/10.1111/j.1741-3729.2007.00447.x
O’Reilly, M. (2021). Exploring the rhetoric of “burden”: The discursive positioning of the impact of psychiatric disability in child mental health assessments. In J. N. Lester (Ed.), Discursive psychology and disability (pp. 47–75). Palgrave Macmillan. https://doi.org/10.1007/978-3-030-71760-5_3
Ozturk, Y., Riccadonna, S., & Venuti, P. (2014). Parenting dimensions in mothers and fathers of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(10), 1295–1306. https://doi.org/10.1016/j.rasd.2014.07.001
Pakenham, K. I., Sofronoff, K., & Samios, C. (2004). Finding meaning in parenting a child with Asperger syndrome: Correlates of sense making and benefit finding. Research in developmental disabilities, 25(3), 245-264. https://doi.org/10.1016/j.ridd.2003.06.003
Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309
Partridge, S. E. (1988). The parental self‐concept: A theoretical exploration and practical application. American Journal of Orthopsychiatry, 58(2), 281-287. https://psycnet.apa.org/doi/10.1111/j.1939-0025.1988.tb01589.x
Pellicano, L., Dinsmore, A., & Charman, T. (2013). A future made together: Shaping autism research in the UK [Research report]. Institute of Education, University of London. http://crae.ioe.ac.uk/post/64979963005/a-future-made-together
Petalas, M. A., Hastings, R. P., Nash, S., Dowey, A., & Reilly, D. (2009). “I like that he always shows who he is”: The perceptions and experiences of siblings with a brother with autism spectrum disorder. International Journal of Disability, Development and Education, 56, 381–399. http://dx.doi.org/10.1080/10349120903306715
Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009). Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability, 34(2), 133-141. https://doi.org/10.1080/13668250902845236
Piotrowski, K. (2018). Adaptation of the Utrecht-Management of Identity Commitments Scale (U-MICS) to the measurement of the parental identity domain. Scandinavian Journal of Psychology, 59(2), 157–166. https://doi.org/10.1111/sjop.12416
Pisula, E., & Kossakowska, Z. (2010). Sense of coherence and coping with stress among mothers and fathers of children with autism. Journal of Autism and Developmental Disorders, 40(12), 1485–94. https://doi.org/10.1007/s10803-010-1001-3
Pleck, J. H., & Stueve, J. L. (2004). A narrative approach to paternal identity: The importance of parental identity “conjointness.” In D. R. Day & M. E. Lamb (Eds.), Conceptualizing and measuring paternal involvement (pp. 83–107). Erlbaum.
Rabbitte, K., Prendeville, P., & Kinsella, W. (2017). Parents’ experiences of the diagnostic process for girls with autism spectrum disorder in Ireland: An Interpretative Phenomenological Analysis. Educational and Child Psychology, 34(2), 54-66. http://dx.doi.org/10.53841/bpsecp.2017.34.2.54
Rasmussen, P. S., Pedersen, I. K., & Pagsberg, A. K. (2020). Biographical disruption or cohesion? How parents deal with their child's autism diagnosis. Social Science & Medicine, 244, 112673. https://doi.org/10.1016/j.socscimed.2019.112673
Raymond-Barker, P., Griffith, G. M., & Hastings, R. P. (2018). Biographical disruption: Experiences of mothers of adults assessed for autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 83-92. https://doi.org/10.3109/13668250.2016.1262011
Robson, C. (2024). Real world research (5th ed.). Wiley.
Roy-Chowdhury, S. (2015). Why does a systemic psychotherapy ‘work’?. In O’Reilly, M. & Lester, J.N. (Eds), The Palgrave Handbook of Child Mental Health: Discourse and Conversation Studies (pp. 194-213). Palgrave Macmillan UK. https://doi.org/10.1057/9781137428318_11
Shu, B. C., Lo, L. H., Lin, L. L., Hsieh, S. C., Li, S. M., & Wu, S. C. (2006). Process of self-identity transformation in women with autistic adolescent. Journal of Nursing Research, 14(1), 55–64. https://doi.org/10.1097/01.jnr.0000387562.11447.a1
Singh, S. (2019). I am who I need to be: Reflections on parental identity development from a father of a child with disabilities. Disability & Society, 34(5), 837-841. https://doi.org/10.1080/09687599.2019.1589754
Slade, A., Aber, J. L., Bresgi, I., Berger, B., & Kaplan, M. (2004). Parent Development Interview–Revised [Unpublished clinical interview protocol]. Yale Child Study Center.
Smith, J. A. (1999). Identity development during the transition to motherhood: An interpretative phenomenological analysis. Journal of Reproductive and Infant Psychology, 17(3), 281-299. https://doi.org/10.1080/02646839908404595
Smith, J. A. (2017). Interpretative phenomenological analysis: Getting at lived experience. The Journal of Positive Psychology, 12(3), 303–304. https://psycnet.apa.org/doi/10.1080/17439760.2016.1262622
Smith, J. A., & Fieldsend, M. (2021). Interpretative phenomenological analysis. American Psychological Association. https://psycnet.apa.org/doi/10.1037/0000252-008
Smith, J. A., & Osborn, M. (2007). Pain as an assault on the self: An interpretative phenomenological analysis of the psychological impact of chronic benign low back pain. Psychology and health, 22(5), 517-534. https://doi.org/10.1080/14768320600941756
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis. SAGE Publications. https://doi.org/10.1080/14780880903340091
Τσιώλης, Γ. (2014). Μέθοδοι και τεχνικές ανάλυσης στην ποιοτική κοινωνική έρευνα. Κριτική.
Voulgarakis, H. M., Lisa, J. A. S., Conde, K. A., & Davies, E. A. (2021). The experience of parenting children with autism spectrum disorder: A qualitative content analysis. Child Care in Practice. https://doi.org/10.1080/13575279.2021.1939655
Most read articles by the same author(s)