Challenges and coping strategies of autism parenting: A systematic literature review of parents’ autoethnographies
DOI:
https://doi.org/10.24200/jonus.vol9iss2pp340-370Abstract
Background and Purpose: Parents of autistic children face caregiving challenges, yet there is a dearth of research specifically analysing parents’ autoethnographies. This systematic literature review explores themes of challenges and coping strategies in autism caregiving, guided by the Transactional Theory of Stress and Coping (Lazarus & Folkman, 1984).
Methodology: Following Kitchenham and Charters’ (2007) guidelines, a systematic literature search of autoethnographies by parents of autistic children was conducted using online databases. The search was guided by two questions: (1) What are the challenges faced by parents caring for their autistic children?; and (2) What are the coping strategies employed by parents in caring for their autistic children?
Findings: Twelve autoethnographies were analysed. Themes regarding challenges included parents experiencing fears, feeling despair and facing barriers and stigmatisation. Coping strategies identified included parents seeking answers, having hopes, and gaining empowerment besides providing support. Limitations and future research directions were discussed.
Contributions: This paper emphasises understanding challenges faced by parents of autistic children. It illuminates emotional and societal aspects of autism parenting, emphasising the necessity for tailored support systems. Additionally, it reveals parents' coping strategies, including empowerment and supporting others, indicating increased understanding of their children's autism and active facilitation of support networks.
Keywords: Well-being, Autism parenting, Autoethnography, challenges, coping.
References
Abdullah, H., Asraf, R. M., Ali, M. A. M., & Baharudin, D. F. (2022). The challenges in raising autistic children: The voices of mothers. International Journal of Evaluation and Research in Education (IJERE), 11(1), 78-87. http://doi.org/10.11591/ijere.v11i1.21837
Alcock, J. (2016). An Autoethnography of parenting a daughter whose complex disability was diagnosed in her adulthood. Autism Open Access, 6, 193. http://doi.org/10.4172/2165-7890.1000193
Bakar, R. A. (2019). Understanding support for parents of autistic children through a whatsapp group. Asia Proceedings of Social Sciences, 4(2), 117-120.
Bakar, R. A., & Bakar, J. A. (2019). WhatsApp as a source of support for parents of autistic children. International Journal of Recent Technology and Engineering (IJRTE), 8(2S9), 202-206. https://doi.org/10.35940/ijrte.B1046.0982S919
Bakar, R. A., Bakar, J. A., Azri, M. A., Abdullah, A. H., & Abd Ghani, K. D. (2022). Understanding swimming instructors’ knowledge growth in teaching swimming to children with autism. Journal of Positive School Psychology, 6(3), 194-205.
Barrett, E. (2022). Exhausted, scared, anxious, stressed, frustrated, sad, but hopeful: Transitioning two boys with autism from home to school. In Transition Programs for Children and Youth with Diverse Needs (pp. 3-8). Emerald Publishing Limited.
Bochner, A. P., & Ellis, C. (2022). Why autoethnography?. Social Work and Social Sciences Review, 23(2), 8-18. https://doi.org/10.1921/swssr.v23i2.2027
Bogdan, R., & Biklen, S. K. (1997). Qualitative research for education. Allyn & Bacon.
Britton, V. C. (2013). Appreciating autism: Stories of my son. (Doctoral dissertation, Simon Fraser University). Summit Research Repository. https://summit.sfu.ca/item/12915
Clasquin-Johnson, M. G., & Clasquin-Johnson, M. (2018). ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism. African Journal of Disability, 7(1), 1-8.
Collins, J. A., & Fauser, B. C. (2005). Balancing the strengths of systematic and narrative reviews. Human Reproduction Update, 11(2), 103-104.
Davidson, J., & Henderson, V. L. (2010). ‘Coming out’on the spectrum: autism, identity and disclosure. Social & Cultural Geography, 11(2), 155-170. https://doi.org/10.1080/14649360903525240
Dobai, A., & Hopkins, N. (2022). Ethnic identity concealment and disclosure: Contexts and strategies. British Journal of Social Psychology, 61(3), 790-807. https://doi.org/10.1111/bjso.12507
Dorman, B. (2019). Autism, community building, and volunteering: A personal journey. Research papers of the Anthropological Institute, (7), 154-163.
Ellis, C., Adams, T. E., & Bochner, A. P. (2011). Autoethnography: an overview. Historical Social Research/Historische Sozialforschung, 273-290.
Ferrari, R. (2015). Writing narrative style literature reviews. Medical Writing, 24(4), 230-235.
Giolo, S. R., Fernandes, Y. R., & dos Anjos, A. (2023). Changes experienced by Brazilian parents of children with autism spectrum disorder in their work routine and social life. Open Access Library Journal, 10(6), 1-16. https://doi.org/10.4236/oalib.1110314
Gorlin, J. B., McAlpine, C. P., Garwick, A., & Wieling, E. (2016). Severe childhood autism: The family lived experience. Journal of Pediatric Nursing, 31(6), 580-597. https://doi.org/10.1016/j.pedn.2016.09.002
Gray, D. E. (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.
Green, B. N., Johnson, C. D., & Adams, A. (2006). Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. Journal of Chiropractic Medicine, 5(3), 101-117.
Hall, L. J., Hoxie, N. A., Grundon, G. S., & Cordero, Y. N. (2022). Parent-researcher perspectives on role intersectionality related to autism research. Frontiers in Rehabilitation Sciences, 3, 31. https://doi.org/10.3389/fresc.2022.718398
Hannon, M. D. (2017). Acknowledging intersectionality: An autoethnography of a Black school counselor educator and father of a student with autism. Journal of Negro Education, 86(2), 154-162.
Hazen, E. P., Stornelli, J. L., O’Rourke, J. A., Koesterer, K., & McDougle, C. J. (2014). Sensory symptoms in autism spectrum disorders. Harvard Review of Psychiatry, 22(2), 112-124. https://doi.org/10.1097/01.HRP.0000445143.08773.58
Jani, S. H. M., Misbahrudin, N. T., & Salleh, N. (2022). Waqf as an alternative to government expenditure in financing autism spectrum disorder children’s cost: Experience in from Malaysia. International Journal of Academic Research in Business & Social Sciences, 12(2), 413-424. https://doi.org/10.6007/IJARBSS/v12-i2/12891
Kapp, L., & Brown, O. (2011). Resilience in families adapting to autism spectrum disorder. Journal of Psychology in Africa, 21(3), 459-463. https://doi.org/10.1080/14330237.2011.10820482
Kavsak, H. (2023). A parent's autoethnography: Examining my experiences and identity as parent, educator, and researcher while teaching literacy to my adolescent sons who have autism and use augmentative and alternative communication [Master’s thesis, Brock University St. Catharines, Ontario]. http://hdl.handle.net/10464/17442
Kitchenham, B., & Charters, S. (2007). Guidelines for performing systematic literature reviews in software engineering (EBSE Technical Report EBSE-2007-01), 1-57. Keele University and Durham University.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
Lee, J. D., Terol, A. K., Yoon, C. D., & Meadan, H. (2023). Parent-to-parent support among parents of children with autism: A review of the literature. Autism, 13623613221146444. https://doi.org/10.1177/13623613221146444
Levy, Y., & Ellis, T. J. (2006). A systems approach to conduct an effective literature review in support of information systems research. Informing Science, 9.
Lilley, R. (2013). Crying in the park: Autism stigma, school entry and maternal subjectivity. Studies in the Maternal, 5(2), 1-28. https://doi.org/10.16995/sim.21
Liu, X. Y., & To, S. M. (2023). Narrative analysis of parents’ experiences with participating in the intervention of children on the autism spectrum in mainland China. Disability and Rehabilitation, 45(19), 3070-3078. https://doi.org/10.1080/09638288.2022.2120098
Lowenstein, E., & Jones, D. L. (2021). Mother-teacher-scholar-advocates: narrating work-life on the professorial plateau. Journal of Organizational Ethnography, 10(2), 132-146. https://doi.org/10.1108/JOE-07-2020-0026
Manning, J., & Adams, T. E. (2015). Popular culture studies and autoethnography: An essay on method. The Popular Culture Studies Journal, 3, 187-221.
Marsack-Topolewski, C. N., & Church, H. L. (2019). Impact of caregiver burden on quality of life for parents of adult children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 124(2), 145-156. https://doi.org/10.1352/1944-7558-124.2.145
Marsack‐Topolewski, C. N., Perry, T. E., & Chan, K. T. (2021). “I'm glad she chose me as her parent”: Rewards of caregiving for adults with autism. Family Relations, 70(5), 1465-1476. https://doi.org/10.1111/fare.1251
McLeod, P. L., & Leshed, G. (2011). As long as they don’t know where I live: Information disclosure strategies for managing identity in second life. In Reinventing ourselves: Contemporary concepts of identity in virtual worlds (pp. 191-211). London: Springer London.
McMahon, J., Wiltshire, G. E., McGannon, K. R., & Rayner, C. (2020). Children with autism in a sport and physical activity context: A collaborative autoethnography by two parents outlining their experiences. Sport, Education and Society, 25(9), 1002-1014. https://doi.org/10.1080/13573322.2019.1680535
Merriam, S. B., & Tisdell, E. J. (2015). Qualitative research: A guide to design and implementation. 4th Ed. John Wiley & Sons.
Mitra, B. (2022). It’s not autism. It’s your parenting. An autoethnographic exploration of the relationships between professionals and parents of an autistic child in the UK. OUGHT: The Journal of Autistic Culture, 3(2), 6. https://doi.org/10.9707/2833-1508.1091
Mohamed Shaffril, H. A., Samsuddin, S. F., & Abu Samah, A. (2020). The ABC of systematic literature review: the basic methodological guidance for beginners. Quality & Quantity, 55, 1319-1346. https://doi.org/10.1007/s11135-020-01059-6
Moshe, S., Oppenheim, D., Slonim, M., Hamburger, L., Maccabi, Y., & Yirmiya, N. (2024). Positive and challenging themes in parents’ perceptions of their relationships with their child with autism: Comparison between mothers and fathers. Autism, 28(3), 744-754. https://doi.org/10.1177/13623613231182513
Muka, T., Glisic, Glisic, M., M., Milic, J., Verhoog, S., Bohlius, J., Bramer, W., Chowdhury, R., & Franco, O. H. (2020). A 24-step guide on how to design, conduct, and successfully publish a systematic review and meta-analysis in medical research. European Journal of Epidemiology, 35, 49-60. https://doi.org/10.1007/s10654-019-00576-5
Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670-684. https://doi.org/10.1016/j.rasd.2009.01.004
Naicker, V. V., Bury, S. M., & Hedley, D. (2023). Factors associated with parental resolution of a child's autism diagnosis: A systematic review. Frontiers in Psychiatry, 13, 1079371. https://doi.org/10.3389/fpsyt.2022.1079371
Ng, C. S. M., & Ng, S. S. L. (2022). A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder. Scientific Reports, 12(1), 19550. http s://doi.org/10.1038/s41598-022-23978-0
Paré, G., Trudel, M. C., Jaana, M., & Kitsiou, S. (2015). Synthesizing information systems knowledge: A typology of literature reviews. Information & Management, 52(2), 183-199.
Penney, A. M., Bateman, K. J., Veverka, Y., Luna, A., & Schwartz, I. S. (2023). Compassion: The eighth dimension of Applied Behavior Analysis. Behavior Analysis in Practice, 1-15. https://doi.org/10.1007/s40617-023-00888-9
Rutter, N., Ali, N., Purna Basu, A., Basuc, S., Bond, C., Bryant, E. J., ... & Shaw, J. (2024). An evidence-based plan for addressing the autism assessment and support crisis.
Smith, J., Aulich, A., Bent, C. A., Constantine, C., Franks, K., Goonetilleke, N., Green, C. C., Lee, P., Ma, E., Said, H., Wang, R., Wood, S., & Hudry, K. (2023). “What is early intervention? I had no idea”: Chinese parents’ experiences of early supports for their autistic children in Australia. Research in Autism Spectrum Disorders, 108, 102227. https://doi.org/10.1016/j.rasd.2023.102227
Srivastava, M., Srivastava, P., Dubey, A. K., & Srivastava, P. (2024). A narrative review of Autism Spectrum Disorder in the Indian context. Journal of Indian Association for Child and Adolescent Mental Health, 0(0). https://doi.org/10.1177/09731342231223589
Taylor, A. (2019). A parent's perspective: The experience of accessing autism services: An autoethnographic study. [Master’s thesis, University of Manitoba]. https://mspace.lib.umanitoba.ca/items/fbe8bd7d-22fc-432d-992c-3bc802869cf9
Tran, T. (2020). The mental health experience among parents of children with autism. (Doctoral projects, San Jose State University). https://scholarworks.sjsu.edu/etd_doctoral/131.
Vlcek, S. (2023). Three realities and a new-found focus: parenting and disability in a time of a pandemic. Qualitative Research Journal, 23(3), 298-312. https://doi.org/10.1108/QRJ-12-2022-0162
Waizbard-Bartov, E., Yehonatan-Schori, M., & Golan, O. (2019). Personal growth experiences of parents to children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 1330-1341. https://doi.org/10.1007/s10803-018-3784-6
Wanden-Berghe, C., & Sanz-Valero, J. (2012). Systematic reviews in nutrition: standardized methodology. British Journal of Nutrition, 107(S2), S3-S7. https://doi.org/10.1017/S0007114512001432
Wu, Z., Chen, Y., & Wang, P. (2023). Family economic status, resilience, and subjective well-being of parents whose children have autism spectrum disorder. Social Behavior and Personality: An International Journal, 51(3), 40-48. https://doi.org/10.2224/sbp.12115
Xiao, Y., & Watson, M. (2019). Guidance on conducting a systematic literature review. Journal of Planning Education and Research, 39(1), 93-112. https://doi.org/10.1177/0739456X17723971
Yaacob, W. N. W., Yaacob, L. H., Zulkifli, M. M., & Muhamad, R. (2022). A journey towards resilience: Coping strategies adopted by parents with children having autism spectrum disorder in northeast Malaysia. International Journal of Environmental Research and Public Health, 19(4), 2458. https://doi.org/10.3390/ijerph19042458
Zhao, M., & Fu, W. (2022). The resilience of parents who have children with autism spectrum disorder in China: a social culture perspective. International Journal of Developmental Disabilities, 68(2), 207-218. https://doi.org/10.1080/20473869.2020.1747761
Alcock, J. (2016). An Autoethnography of parenting a daughter whose complex disability was diagnosed in her adulthood. Autism Open Access, 6, 193. http://doi.org/10.4172/2165-7890.1000193
Bakar, R. A. (2019). Understanding support for parents of autistic children through a whatsapp group. Asia Proceedings of Social Sciences, 4(2), 117-120.
Bakar, R. A., & Bakar, J. A. (2019). WhatsApp as a source of support for parents of autistic children. International Journal of Recent Technology and Engineering (IJRTE), 8(2S9), 202-206. https://doi.org/10.35940/ijrte.B1046.0982S919
Bakar, R. A., Bakar, J. A., Azri, M. A., Abdullah, A. H., & Abd Ghani, K. D. (2022). Understanding swimming instructors’ knowledge growth in teaching swimming to children with autism. Journal of Positive School Psychology, 6(3), 194-205.
Barrett, E. (2022). Exhausted, scared, anxious, stressed, frustrated, sad, but hopeful: Transitioning two boys with autism from home to school. In Transition Programs for Children and Youth with Diverse Needs (pp. 3-8). Emerald Publishing Limited.
Bochner, A. P., & Ellis, C. (2022). Why autoethnography?. Social Work and Social Sciences Review, 23(2), 8-18. https://doi.org/10.1921/swssr.v23i2.2027
Bogdan, R., & Biklen, S. K. (1997). Qualitative research for education. Allyn & Bacon.
Britton, V. C. (2013). Appreciating autism: Stories of my son. (Doctoral dissertation, Simon Fraser University). Summit Research Repository. https://summit.sfu.ca/item/12915
Clasquin-Johnson, M. G., & Clasquin-Johnson, M. (2018). ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism. African Journal of Disability, 7(1), 1-8.
Collins, J. A., & Fauser, B. C. (2005). Balancing the strengths of systematic and narrative reviews. Human Reproduction Update, 11(2), 103-104.
Davidson, J., & Henderson, V. L. (2010). ‘Coming out’on the spectrum: autism, identity and disclosure. Social & Cultural Geography, 11(2), 155-170. https://doi.org/10.1080/14649360903525240
Dobai, A., & Hopkins, N. (2022). Ethnic identity concealment and disclosure: Contexts and strategies. British Journal of Social Psychology, 61(3), 790-807. https://doi.org/10.1111/bjso.12507
Dorman, B. (2019). Autism, community building, and volunteering: A personal journey. Research papers of the Anthropological Institute, (7), 154-163.
Ellis, C., Adams, T. E., & Bochner, A. P. (2011). Autoethnography: an overview. Historical Social Research/Historische Sozialforschung, 273-290.
Ferrari, R. (2015). Writing narrative style literature reviews. Medical Writing, 24(4), 230-235.
Giolo, S. R., Fernandes, Y. R., & dos Anjos, A. (2023). Changes experienced by Brazilian parents of children with autism spectrum disorder in their work routine and social life. Open Access Library Journal, 10(6), 1-16. https://doi.org/10.4236/oalib.1110314
Gorlin, J. B., McAlpine, C. P., Garwick, A., & Wieling, E. (2016). Severe childhood autism: The family lived experience. Journal of Pediatric Nursing, 31(6), 580-597. https://doi.org/10.1016/j.pedn.2016.09.002
Gray, D. E. (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.
Green, B. N., Johnson, C. D., & Adams, A. (2006). Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. Journal of Chiropractic Medicine, 5(3), 101-117.
Hall, L. J., Hoxie, N. A., Grundon, G. S., & Cordero, Y. N. (2022). Parent-researcher perspectives on role intersectionality related to autism research. Frontiers in Rehabilitation Sciences, 3, 31. https://doi.org/10.3389/fresc.2022.718398
Hannon, M. D. (2017). Acknowledging intersectionality: An autoethnography of a Black school counselor educator and father of a student with autism. Journal of Negro Education, 86(2), 154-162.
Hazen, E. P., Stornelli, J. L., O’Rourke, J. A., Koesterer, K., & McDougle, C. J. (2014). Sensory symptoms in autism spectrum disorders. Harvard Review of Psychiatry, 22(2), 112-124. https://doi.org/10.1097/01.HRP.0000445143.08773.58
Jani, S. H. M., Misbahrudin, N. T., & Salleh, N. (2022). Waqf as an alternative to government expenditure in financing autism spectrum disorder children’s cost: Experience in from Malaysia. International Journal of Academic Research in Business & Social Sciences, 12(2), 413-424. https://doi.org/10.6007/IJARBSS/v12-i2/12891
Kapp, L., & Brown, O. (2011). Resilience in families adapting to autism spectrum disorder. Journal of Psychology in Africa, 21(3), 459-463. https://doi.org/10.1080/14330237.2011.10820482
Kavsak, H. (2023). A parent's autoethnography: Examining my experiences and identity as parent, educator, and researcher while teaching literacy to my adolescent sons who have autism and use augmentative and alternative communication [Master’s thesis, Brock University St. Catharines, Ontario]. http://hdl.handle.net/10464/17442
Kitchenham, B., & Charters, S. (2007). Guidelines for performing systematic literature reviews in software engineering (EBSE Technical Report EBSE-2007-01), 1-57. Keele University and Durham University.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
Lee, J. D., Terol, A. K., Yoon, C. D., & Meadan, H. (2023). Parent-to-parent support among parents of children with autism: A review of the literature. Autism, 13623613221146444. https://doi.org/10.1177/13623613221146444
Levy, Y., & Ellis, T. J. (2006). A systems approach to conduct an effective literature review in support of information systems research. Informing Science, 9.
Lilley, R. (2013). Crying in the park: Autism stigma, school entry and maternal subjectivity. Studies in the Maternal, 5(2), 1-28. https://doi.org/10.16995/sim.21
Liu, X. Y., & To, S. M. (2023). Narrative analysis of parents’ experiences with participating in the intervention of children on the autism spectrum in mainland China. Disability and Rehabilitation, 45(19), 3070-3078. https://doi.org/10.1080/09638288.2022.2120098
Lowenstein, E., & Jones, D. L. (2021). Mother-teacher-scholar-advocates: narrating work-life on the professorial plateau. Journal of Organizational Ethnography, 10(2), 132-146. https://doi.org/10.1108/JOE-07-2020-0026
Manning, J., & Adams, T. E. (2015). Popular culture studies and autoethnography: An essay on method. The Popular Culture Studies Journal, 3, 187-221.
Marsack-Topolewski, C. N., & Church, H. L. (2019). Impact of caregiver burden on quality of life for parents of adult children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 124(2), 145-156. https://doi.org/10.1352/1944-7558-124.2.145
Marsack‐Topolewski, C. N., Perry, T. E., & Chan, K. T. (2021). “I'm glad she chose me as her parent”: Rewards of caregiving for adults with autism. Family Relations, 70(5), 1465-1476. https://doi.org/10.1111/fare.1251
McLeod, P. L., & Leshed, G. (2011). As long as they don’t know where I live: Information disclosure strategies for managing identity in second life. In Reinventing ourselves: Contemporary concepts of identity in virtual worlds (pp. 191-211). London: Springer London.
McMahon, J., Wiltshire, G. E., McGannon, K. R., & Rayner, C. (2020). Children with autism in a sport and physical activity context: A collaborative autoethnography by two parents outlining their experiences. Sport, Education and Society, 25(9), 1002-1014. https://doi.org/10.1080/13573322.2019.1680535
Merriam, S. B., & Tisdell, E. J. (2015). Qualitative research: A guide to design and implementation. 4th Ed. John Wiley & Sons.
Mitra, B. (2022). It’s not autism. It’s your parenting. An autoethnographic exploration of the relationships between professionals and parents of an autistic child in the UK. OUGHT: The Journal of Autistic Culture, 3(2), 6. https://doi.org/10.9707/2833-1508.1091
Mohamed Shaffril, H. A., Samsuddin, S. F., & Abu Samah, A. (2020). The ABC of systematic literature review: the basic methodological guidance for beginners. Quality & Quantity, 55, 1319-1346. https://doi.org/10.1007/s11135-020-01059-6
Moshe, S., Oppenheim, D., Slonim, M., Hamburger, L., Maccabi, Y., & Yirmiya, N. (2024). Positive and challenging themes in parents’ perceptions of their relationships with their child with autism: Comparison between mothers and fathers. Autism, 28(3), 744-754. https://doi.org/10.1177/13623613231182513
Muka, T., Glisic, Glisic, M., M., Milic, J., Verhoog, S., Bohlius, J., Bramer, W., Chowdhury, R., & Franco, O. H. (2020). A 24-step guide on how to design, conduct, and successfully publish a systematic review and meta-analysis in medical research. European Journal of Epidemiology, 35, 49-60. https://doi.org/10.1007/s10654-019-00576-5
Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670-684. https://doi.org/10.1016/j.rasd.2009.01.004
Naicker, V. V., Bury, S. M., & Hedley, D. (2023). Factors associated with parental resolution of a child's autism diagnosis: A systematic review. Frontiers in Psychiatry, 13, 1079371. https://doi.org/10.3389/fpsyt.2022.1079371
Ng, C. S. M., & Ng, S. S. L. (2022). A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder. Scientific Reports, 12(1), 19550. http s://doi.org/10.1038/s41598-022-23978-0
Paré, G., Trudel, M. C., Jaana, M., & Kitsiou, S. (2015). Synthesizing information systems knowledge: A typology of literature reviews. Information & Management, 52(2), 183-199.
Penney, A. M., Bateman, K. J., Veverka, Y., Luna, A., & Schwartz, I. S. (2023). Compassion: The eighth dimension of Applied Behavior Analysis. Behavior Analysis in Practice, 1-15. https://doi.org/10.1007/s40617-023-00888-9
Rutter, N., Ali, N., Purna Basu, A., Basuc, S., Bond, C., Bryant, E. J., ... & Shaw, J. (2024). An evidence-based plan for addressing the autism assessment and support crisis.
Smith, J., Aulich, A., Bent, C. A., Constantine, C., Franks, K., Goonetilleke, N., Green, C. C., Lee, P., Ma, E., Said, H., Wang, R., Wood, S., & Hudry, K. (2023). “What is early intervention? I had no idea”: Chinese parents’ experiences of early supports for their autistic children in Australia. Research in Autism Spectrum Disorders, 108, 102227. https://doi.org/10.1016/j.rasd.2023.102227
Srivastava, M., Srivastava, P., Dubey, A. K., & Srivastava, P. (2024). A narrative review of Autism Spectrum Disorder in the Indian context. Journal of Indian Association for Child and Adolescent Mental Health, 0(0). https://doi.org/10.1177/09731342231223589
Taylor, A. (2019). A parent's perspective: The experience of accessing autism services: An autoethnographic study. [Master’s thesis, University of Manitoba]. https://mspace.lib.umanitoba.ca/items/fbe8bd7d-22fc-432d-992c-3bc802869cf9
Tran, T. (2020). The mental health experience among parents of children with autism. (Doctoral projects, San Jose State University). https://scholarworks.sjsu.edu/etd_doctoral/131.
Vlcek, S. (2023). Three realities and a new-found focus: parenting and disability in a time of a pandemic. Qualitative Research Journal, 23(3), 298-312. https://doi.org/10.1108/QRJ-12-2022-0162
Waizbard-Bartov, E., Yehonatan-Schori, M., & Golan, O. (2019). Personal growth experiences of parents to children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 1330-1341. https://doi.org/10.1007/s10803-018-3784-6
Wanden-Berghe, C., & Sanz-Valero, J. (2012). Systematic reviews in nutrition: standardized methodology. British Journal of Nutrition, 107(S2), S3-S7. https://doi.org/10.1017/S0007114512001432
Wu, Z., Chen, Y., & Wang, P. (2023). Family economic status, resilience, and subjective well-being of parents whose children have autism spectrum disorder. Social Behavior and Personality: An International Journal, 51(3), 40-48. https://doi.org/10.2224/sbp.12115
Xiao, Y., & Watson, M. (2019). Guidance on conducting a systematic literature review. Journal of Planning Education and Research, 39(1), 93-112. https://doi.org/10.1177/0739456X17723971
Yaacob, W. N. W., Yaacob, L. H., Zulkifli, M. M., & Muhamad, R. (2022). A journey towards resilience: Coping strategies adopted by parents with children having autism spectrum disorder in northeast Malaysia. International Journal of Environmental Research and Public Health, 19(4), 2458. https://doi.org/10.3390/ijerph19042458
Zhao, M., & Fu, W. (2022). The resilience of parents who have children with autism spectrum disorder in China: a social culture perspective. International Journal of Developmental Disabilities, 68(2), 207-218. https://doi.org/10.1080/20473869.2020.1747761
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2024-07-31
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Challenges and coping strategies of autism parenting: A systematic literature review of parents’ autoethnographies. (2024). Journal of Nusantara Studies (JONUS), 9(2), 340-370. https://doi.org/10.24200/jonus.vol9iss2pp340-370
