Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study

Wanda Man Wai  Chau; Penny Jayne  Furness

doi:10.29333/ajqr/12950

Wanda Man Wai Chau ¹ ^* , Penny Jayne Furness ²

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AM J QUALITATIVE RES, Volume 7, Issue 1, pp. 168-190

https://doi.org/10.29333/ajqr/12950

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Abstract

Literature reports the challenges of parenting a child with Autism Spectrum Disorder (ASD), and its impacts on emotional and psychosocial wellbeing, both generally and specifically in the Hong Kong context. Positive parenting experiences are less well defined; however, research and theory in the positive psychology field suggests that people living with adversity can find and create meaning, positivity and happiness. This study aimed to investigate Hong Kong parents’ experiences and perceptions of happiness and well-being in raising their children with ASD. Eight parents (2 fathers; 6 mothers) were interviewed in-depth about their parenting-related perceptions and experiences of happiness and well-being. A thematic analysis generated four themes: A Growth Mindset, Connectedness, Self-Care, and A Better Me, each comprising several related sub-themes. Findings indicated that happiness was crucial for these parents, despite the challenges of raising a child with ASD in Hong Kong, and that they actively sought out activities to enhance their happiness, satisfaction and meaning. Results are in keeping with positive psychology theory, add specific detail relating to this group and could be extended with further research. Findings could also inform policy makers and support services in the development of welfare plans, educational resources and social support for this group of vulnerable families in future.

Keywords: Autism spectrum disorder, happiness, parenting, qualitative, thematic analysis

References

Aktan, O., Orakcı, Ş., & Durnalı, M. (2020). Investigation of the relationship between burnout, life satisfaction and quality of life in parents of children with disabilities. European Journal of Special Needs Education, 35(5), 679–695. https://doi.org/10.1080/08856257.2020.1748429
Al-Oran Haytham Mohammad, & Khuan Lee. (2021). Predictors of parenting stress in parents of children diagnosed with autism spectrum disorder: A scoping review. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery, 57(1), Article 103. https://doi.org/10.1186/s41983-021-00345-w
American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). DSM-5.
Benson, P. R. (2014). Coping and psychological adjustment among mothers of children with ASD: An accelerated longitudinal study. Journal of Autism and Developmental Disorders, 44(8), 1793–1807. https://doi.org/10.1007/s10803-014-2079-9
Bhaskar, R. (1978). A realist theory of science. Harvester Press.
Boniwell, I., Tunariu, A. D., & Hefferon, K. (2019). Positive psychology: Theory, research and applications (2nd ed.). Open University Press.
Boyle, G., Saklofske, D. H., & Matthews, G. (2014). Measures of personality and social psychological constructs Elsevier Science & Technology. https://doi.org/10.1016/C2010-0-68427-6
Braun, V., & Clarke, V. (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238
Brisini, K. S. C., & Solomon, D. H. (2020). Children’s transitions and relational turbulence in marriage: Can transition processing communication help? Journal of Family Communication, 20(1), 82–96. https://doi.org/10.1080/15267431.2019.1662421
Calhoun, L. G., & Tedeschi, R. G. (2004). The foundations of oosttraumatic growth: New considerations. Psychological Inquiry, 15(1), 93–102. https://doi.org/10.1207/s15327965pli1501_03
Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2011). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders; J Autism Dev Disord, 42(2), 266–277. https://doi.org/10.1007/s10803-011-1241-x
Carmassi, C., Dell’oste, V., Foghi, C., Bertelloni, C. A., Conti, E., Calderoni, S., Battini, R., & Dell’osso, L. (2021). Post-traumatic stress reactions in caregivers of children and adolescents/young adults with severe diseases: A systematic review of risk and protective factors. International Journal of Environmental Research and Public Health, 18(1), 1–20. https://doi.org/10.3390/ijerph18010189
Casey, L. B., Zanksas, S., Meindl, J. N., Parra, G. R., Cogdal, P., & Powell, K. (2012). Parental symptoms of posttraumatic stress following a child's diagnosis of autism spectrum disorder: A pilot study. Research in Autism Spectrum Disorders, 6(3), 1186-1193. https://doi.org/10.1016/j.rasd.2012.03.008
Centers for Disease Control and Prevention. (2021). Data and statistics on autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/data.html
Chao, R. (1994). Beyond parental control and authoritarian parenting style: Understanding Chinese parenting through the cultural notion of training. Child Development, 65(4), 1111–1119. https://doi.org/10.1111/j.1467-8624.1994.tb00806.x
Chen, W.-W. (2015). The relations between perceived parenting styles and academic achievement in Hong Kong: The mediating role of students’ goal orientations. Learning and Individual Differences, 37, 48–54. https://doi.org/10.1016/j.lindif.2014.11.021
Clarke, V., & Braun, V. (2013). Successful qualitative research: A practical guide for beginners. SAGE Publications.
Cook, J. L., Jones, R. M., Dick, A. J., & Singh, A.. (2005). Revisiting men’s role in father involvement: The importance of personal expectations. Fathering (Harriman, Tenn.), 3(2), 165–178. https://doi.org/10.3149/fth.0302.165
Crisp (2020). Essential social psychology (4th edition.). SAGE Publications.
Dellapiazza, F., Audras-Torrent, L., Michelon, C., & Baghdadli, A. (2021). Clinical characteristics of children with ASD and comorbid ADHD: Association with social impairment and externalizing and internalizing behaviours. Research in Developmental Disabilities, 113, 103930–103930. https://doi.org/10.1016/j.ridd.2021.103930
Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The Satisfaction with Life Scale. Journal of Personality Assessment, 49(1), 71–75. https://doi.org/10.1207/s15327752jpa4901_13
Dweck, C. S. (2006). Mindset: The new psychology of success: Vol. February 2012. Random House Publishing Group.
Education Bureau of the Government of the Hong Kong Special Administrative Region. (2019). EDB to enhance support for students with autism spectrum disorders. https://www.info.gov.hk/gia/general/201910/03/P2019100300291.htm?fontSize=1
Fiske, S. T., & Taylor, S. E. (1991). Social cognition (2nd ed.). McGraw-Hill.
Forrest, D. L., Kroeger, R. A., & Stroope, S. (2019). Autism spectrum disorder symptoms and bullying victimization among children with autism in the United States. Journal of Autism and Developmental Disorders, 50(2), 560–571. https://doi.org/10.1007/s10803-019-04282-9
Frey, B. S., & Stutzer, A. (2010). Happiness and public choice. Public Choice, 144(3/4), 557–573. https://doi.org/10.1007/s11127-010-9681-y
Gau, Chou, M.-C., Chiang, H.-L., Lee, J.-C., Wong, C.-C., Chou, W.-J., & Wu, Y.-Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263–270. https://doi.org/10.1016/j.rasd.2011.05.007
Goldberg, D. P., Gater, R., Sartorius, N., Ustun, T. B., Piccinelli, M., Gureje, O., & Rutter, C. (1997). The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychological Medicine, 27(1), 191–197. https://doi.org/10.1017/S0033291796004242
Greenlee, J. L., Piro‐Gambetti, B., Putney, J., Papp, L. M., & Hartley, S. L. (2022). Marital satisfaction, parenting styles, and child outcomes in families of autistic children. Family Process, 61(2), 941–961. https://doi.org/10.1111/famp.12708
Held, B. S. (2002). The tyranny of the positive attitude in America: Observation and speculation. Journal of Clinical Psychology, 58(9), 965–991. https://doi.org/10.1002/jclp.10093
Held, B. S. (2004). The negative side of positive psychology. The Journal of Humanistic Psychology, 44(1), 9–46. https://doi.org/10.1177/0022167803259645
Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism: the International Journal of Research and Practice, 9(2), 125–137. https://doi.org/10.1177/1362361305051403
Hoseinnejad, H., Chopaniyan, F., Sarvi Moghanlo, O., Rostami, M., & Dadkhah, A. (2020). Marital satisfaction and happiness in parents with autistic and normal children. Iranian Rehabilitation Journal, 18(1), 49–56. https://doi.org/10.32598/irj.18.1.655.1
Huang, A. X., Hughes, T. L., Sutton, L. R., Lawrence, M., Chen, X., Ji, Z., & Zeleke, W. (2017). Understanding the self in individuals with Autism Spectrum Disorders (ASD): A review of literature. Frontiers in Psychology, 8, 1422–1422. https://doi.org/10.3389/fpsyg.2017.01422
Huang, C.-Y., Yen, H.-C., Tseng, M.-H., Tung, L.-C., Chen, Y.-D., & Chen, K.-L. (2013). Impacts of autistic behaviors, emotional and behavioral problems on parenting stress in caregivers of children with autism. Journal of Autism and Developmental Disorders, 44(6), 1383–1390. https://doi.org/10.1007/s10803-013-2000-y
Husser, J. A., & Fernandez, K. E. (2017). We are happier than we realize: Underestimation and conflation in measuring happiness. Journal of Happiness Studies, 19(2), 587–606. https://doi.org/10.1007/s10902-016-9831-0
Huta, V. (2016). An overview of hedonic and eudaimonic well-being concepts. In L. Reinecke & M. B. Oliver (Eds.), The Routledge handbook of media use and well-being: International perspectives on theory and research on positive media effects (pp. 14–33). Routledge. https://doi.org/10.4324/9781315714752
Ivtzan, I., Lomas, T., Hefferon, K., & Worth, P. (2015). Second wave positive psychology: Embracing the dark side of life. Routledge. https://doi.org/10.4324/9781315740010
Johnson, J., & Piercy, F. P. (2017). Exploring partner intimacy among couples raising children on the autism spectrum: A grounded theory investigation. Journal of Marital and Family Therapy, 43(4), 644–661. https://doi.org/10.1111/jmft.12247
Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and well-being in parents of children with Autism Spectrum Disorders (ASD). Journal of Autism and Developmental Disorders, 45(8), 2582–2593. https://doi.org/10.1007/s10803-015-2430-9
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172–183. https://doi.org/10.1111/j.1365-2788.2005.00732.x
Lee, G. K. (2009). Parents of children with high functioning autism: How well do they cope and adjust? Journal of Developmental and Physical Disabilities, 21(2), 93–114. https://doi.org/10.1007/s10882-008-9128-2
Lee, L.-C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2007). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. https://doi.org/10.1007/s10803-007-0491-0
Lewington, L., Lee, J., & Sebar, B. (2021). “I’m not just a babysitter”: Masculinity and men’s experiences of first-time fatherhood. Men and Masculinities, 24(4), 571–589. https://doi.org/10.1177/1097184X21993884
Lien, K., Lashewicz, B., Mitchell, J., & Boettcher, N. (2021). Blending traditional and nurturing fathering: Fathers of children with autism managing work and family. Family Relations, 70(1), 264–281. https://doi.org/10.1111/fare.12472
Ling, C. Y. M., Mak, W. W. S., & Cheng, J. N. S. (2010). Attribution model of stigma towards children with autism in Hong Kong. Journal of Applied Research in Intellectual Disabilities, 23(3), 237–249. https://doi.org/10.1111/j.1468-3148.2008.00456.x
Liu, X., & To, S. (2020). Personal growth experience among parents of children with autism participating in intervention. Journal of Autism and Developmental Disorders, 51(6), 1883–1893. https://doi.org/10.1007/s10803-020-04681-3
Mak, W. W. S., & Kwok, Y. T. Y. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science & Medicine, 70(12), 2045–2051. https://doi.org/10.1016/j.socscimed.2010.02.023
Murray, M. J. (2010). Attention-deficit/hyperactivity disorder in the context of autism spectrum disorders. Current Psychiatry Reports, 12(5), 382–388. https://doi.org/10.1007/s11920-010-0145-3
Neff, K. D. (2003). The development and validation of a scale to measure self-compassion. Self and Identity, 2(3), 223–250. https://doi.org/10.1080/15298860390209035
Nelson, S. K., Kushlev, K., & Lyubomirsky, S. (2014). The pains and pleasures of parenting: When, why, and how is parenthood associated with more or less well-being? Psychological Bulletin, 140(3), 846–895. https://doi.org/10.1037/a0035444
Ng, F. F.-Y., Pomerantz, E. M., & Deng, C. (2014). Why are chinese mothers more controlling than american mothers? “My child is my report card.” Child Development, 85(1), 355–369. https://doi.org/10.1111/cdev.12102
Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 2016(1), 745–762.
Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(3), 1–16. https://doi.org/10.3390/brainsci11030309
Pedro, M. F., Ribeiro, T., & Shelton, K. H. (2015). Romantic attachment and family functioning: The mediating role of marital satisfaction. Journal of Child and Family Studies, 24(11), 3482–3495. https://doi.org/10.1007/s10826-015- 0150-6
Rafferty, D., Tidman, L., & Ekas, N. V. (2020). Parenting experiences of fathers of children with autism spectrum disorder with or without intellectual disability. Journal of Intellectual Disability Research, 64(6), 463–474. https://doi.org/10.1111/jir.12728
Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437–451. https://doi.org/10.1177/0145445509336427
Reed, P., & Osborne, L. A. (2012). Diagnostic practice and its impacts on parental health and child behaviour problems in autism spectrum disorders. Archives of Disease in Childhood, 97(10), 927–931. https://doi.org/10.1136/archdischild-2012-301761
Schoen, R., Kim, Y. J., Nathanson, C. A., Fields, J., & Astone, N. M. (1997). Why do americans want children? Population and Development Review, 23(2), 333–358. https://doi.org/10.2307/2137548
Seligman, M. E. P. (2004). Authentic happiness: Using the new positive psychology to realize your potential for lasting fulfillment. Atria.
Seligman, M. E. P. (2011). Flourish: A visionary new understanding of happiness and well-being. Free Press.
Sun, I. Y., Cortez, A. C. M. , & Fernandes, F. D. M. (2019). Learning disabilities in children with autism. In S. Misciagna (Ed.), Learning disabilities: Neurological bases, clinical features and strategies of intervention (pp. 12-21). IntechOpen. https://doi.org/10.5772/intechopen.89234
Tait, K., Fung, F., Hu, A., Sweller, N., & Wang, W. (2015). Understanding Hong Kong Chinese families’ experiences of an autism/ASD diagnosis. Journal of Autism and Developmental Disorders, 46(4), 1164–1183. https://doi.org/10.1007/s10803-015-2650-z
Tedeschi, R. G., & Calhoun, L. G. (1996). The posttraumatic growth inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9(3), 455–471. https://doi.org/10.1002/jts.2490090305
The Education University of Hong Kong. (2016, March 31). Survey: Most parents of children with autism report discriminatory experiences. https://www.eduhk.hk/fehd/en/highlights.php?id=1197
Timmons, L., Ekas, N. V., & Johnson, P. (2017). Thankful thinking: A thematic analysis of gratitude letters by mothers of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 34, 19–27. https://doi.org/10.1016/j.rasd.2016.11.009
Towle, P. O., Vacanti-Shova, K., Shah, S., & Higgins-D’alessandro, A. (2013). School-aged functioning of children diagnosed with autism spectrum disorder before age three: Parent-reported diagnostic, adaptive, medication, and school placement outcomes. Journal of Autism and Developmental Disorders, 44(6), 1357–1372. https://doi.org/10.1007/s10803-013-1997-2
Trafimow, D., Triandis, H. C., & Goto, S. G. (1991). Some tests of the distinction between the private self and the collective self. Journal of Personality and Social Psychology, 60(5), 649–655. https://doi.org/10.1037/0022-3514.60.5.649
Tsermentseli, S., & Kouklari, E.-C. (2021). Impact of child factors on parenting stress of mothers of children with autism spectrum disorder and intellectual disability: A UK school-based study. Early Child Development and Care, 191(10), 1555–1566. https://doi.org/10.1080/03004430.2019.1658090
Veenhoven, R., & Ehrhardt, J. (1995). The cross-national pattern of happiness: Test of predictions implied in three theories of happiness. Social Indicators Research, 34(1), 33–68. https://doi.org/10.1007/BF01078967
Voliovitch, Y., Leventhal, J. M., Fenick, A. M., Gupta, A. R., Feinberg, E., Hickey, E. J., Shabanova, V., & Weitzman, C. (2021). Parenting stress and its associated components prior to an autism spectrum disorder (ASD) diagnostic evaluation. Journal of Autism and Developmental Disorders, 51(10), 3432–3442. https://doi.org/10.1007/s10803-020-04804-w
Waizbard-Bartov, E., Yehonatan-Schori, M., & Golan, O. (2018). Personal growth experiences of parents to children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(4), 1330–1341. https://doi.org/10.1007/s10803-018-3784-6
Wang, M.-C., Richard Lightsey, O., Pietruszka, T., Uruk, A. C., & Wells, A. G. (2007). Purpose in life and reasons for living as mediators of the relationship between stress, coping, and suicidal behavior. The Journal of Positive Psychology, 2(3), 195–204. https://doi.org/10.1080/17439760701228920
Yakushko, O., & Blodgett, E. (2021). Negative reflections about positive psychology: On constraining the field to a focus on happiness and personal achievement. The Journal of Humanistic Psychology, 61(1), 104–131. https://doi.org/10.1177/0022167818794551
Yi, H., Siu, Q. K. Y., Ngan, O. M. Y., & Chan, D. F. Y. (2020). Parents’ experiences of screening, diagnosis, and intervention for children with autism spectrum disorder. American Journal of Orthopsychiatry, 90(3), 297–311. https://doi.org/10.1037/ort0000433
Zhang, W., Yan, T. T., Barriball, K. L., While, A. E., & Liu, X. H. (2015). Post-traumatic growth in mothers of children with autism: A phenomenological study. Autism: The International Journal of Research and Practice, 19(1), 29–37. https://doi.org/10.1177/1362361313509732

Citation

Chau, W. M. W., & Furness, P. J. (2023). Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study. American Journal of Qualitative Research, 7(1), 168-190. https://doi.org/10.29333/ajqr/12950

Chau, W. M. W., and Furness, P. J. (2023). Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study. American Journal of Qualitative Research, 7(1), pp. 168-190. https://doi.org/10.29333/ajqr/12950

Chau WMW, Furness PJ. Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study. AM J QUALITATIVE RES. 2023;7(1), 168-190. https://doi.org/10.29333/ajqr/12950

Chau, Wanda Man Wai, and Penny Jayne Furness. "Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study". American Journal of Qualitative Research 2023 7 no. 1 (2023): 168-190. https://doi.org/10.29333/ajqr/12950

Chau, Wanda Man Wai et al. "Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study". American Journal of Qualitative Research, vol. 7, no. 1, 2023, pp. 168-190. https://doi.org/10.29333/ajqr/12950

Chau WMW, Furness PJ. Happiness in Parents of Children with Autism Spectrum Disorder: A Qualitative Study. AM J QUALITATIVE RES. 2023;7(1):168-90. https://doi.org/10.29333/ajqr/12950