ISSN: 2226-6348
Open access
Parents of children with autism often manage not only the practical and emotional demands of caregiving, but also negative social responses toward their children and family. This literature review examines how autism-related stigma is associated with the psychological well-being of parents. Studies from Malaysia and other cultural settings were synthesised to explain the different forms of stigma experienced by parents, including public stigma, enacted stigma, courtesy stigma, perceived stigma, affiliate stigma, and self-stigma. The reviewed evidence indicates that repeated judgement, blame, exclusion, and misunderstanding may gradually be internalised by parents, contributing to shame, self-blame, social withdrawal, parenting stress, anxiety, depressive symptoms, and poorer family quality of life. Nevertheless, the relationship between stigma and well-being is not uniform. Its effects may vary according to cultural expectations, the child’s behavioural and developmental characteristics, the availability of services, and parents’ access to supportive relationships. Social support, resilience, parenting self-efficacy, self-compassion, mindfulness, positive meaning in caregiving, and adaptive coping appear to reduce the psychological burden associated with stigma. Existing literature remains dominated by quantitative and cross-sectional studies, while parents’ lived experiences, particularly within the Malaysian context, have received less detailed attention. A qualitative approach is therefore needed to understand how parents interpret stigmatizing encounters, how these experiences influence their emotions and everyday lives, and what forms of support help them maintain psychological well being.
Alhwaiti, M. (2024). Future anxiety, experience of stigma, emotion regulation and quality of life in caregivers of children with autism spectrum disorder: a cross-cultural perspective. International Journal of Developmental Disabilities. https://doi.org/10.1080/20473869.2024.2434545
Chan, K. K. S., & Lam, C. B. (2017). Trait Mindfulness Attenuates the Adverse Psychological Impact of Stigma on Parents of Children with Autism Spectrum Disorder. Mindfulness, 8(4), 984–994. https://doi.org/10.1007/s12671-016-0675-9
Chan, K. K. S., & Leung, D. C. K. (2021). Linking Child Autism to Parental Depression and Anxiety: The Mediating Roles of Enacted and Felt Stigma. Journal of Autism and Developmental Disorders, 51(2), 527–537. https://doi.org/10.1007/s10803-020-04557-6
Chan, K. K. S., Yip, C. C. H., & Leung, D. C. K. (2023). Longitudinal impact of self-stigma content and process on parental warmth and hostility among parents of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 53(7), 2728–2736. https://doi.org/10.1007/s10803-022-05529-8
Chan, K. K. S., Yip, C. C. H., & Wang, Z. (2022). Nonattachment Alleviates the Longitudinal Impact of Experienced and Anticipated Discrimination on Parents of Children with Autism Spectrum Disorder. Mindfulness, 13(7), 1733–1744. https://doi.org/10.1007/s12671-022-01911-w
Chen, H., Ding, Y., Xu, D., & Xiong, Z. (2025). Resilience and Affiliate Stigma Among Parents of Children with Autism Spectrum Disorder: The Mediating Role of Life Satisfaction and the Moderating Role of Ostracism. Psychology Research and Behavior Management, 18, 1519–1529. https://doi.org/10.2147/PRBM.S524580
Chu, S. Y., Park, H., Lee, J., Shaharuddin, K. K. B., & Gan, C. H. (2020). Self-stigma and its associations with stress and quality of life among Malaysian parents of children with autism. Child: Care, Health and Development, 46(4), 485–494. https://doi.org/10.1111/cch.12771
Dai, Y., Chen, M., Deng, T., Huang, B., Ji, Y., Feng, Y., Liu, S., & Zhang, L. (2024). The importance of parenting self-efficacy and social support for family quality of life in children newly diagnosed with autism spectrum disorder: A one-year follow-up study. Autism Research, 17(1), 148–161. https://doi.org/10.1002/aur.3061
Gabra, R. H., Hashem, D. F., & Ahmed, G. K. (2021). The possible relation between stigma, parent psychiatric symptoms, quality of life and the disease burden in families of children with autism spectrum disorder in Egypt: a multicentre study. Egyptian Journal of Neurology, Psychiatry and Neurosurgery, 57(1), 170. https://doi.org/10.1186/s41983-021-00426-w
Ji, B., Jiang, X., & Luo, Y. (2022). Autistic childrens age difference in affiliate stigma and resilience of their parents in China: A cross-sectional study. Archives of Psychiatric Nursing, 39, 7–12. https://doi.org/10.1016/j.apnu.2022.01.006
Lyu, Q.-Y., Yu, X.-X., Wang, J.-L., Wang, X.-Y., Ke, Q.-Q., Liu, D., & Yang, Q.-H. (2022). Self-esteem and family functioning mediates the association of symptom severity and parental affiliate stigma among families with children with ASD. Journal of Pediatric Nursing, 66, e122–e129. https://doi.org/10.1016/j.pedn.2022.04.019
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 and Medicine, 70(12), 2045–2051. https://doi.org/10.1016/j.socscimed.2010.02.023
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. https://doi.org/10.1038/s41598-022-23978-0
Pyszkowska, A., Burek, P., & Nowacki, A. (2026). Knowledge is not power, after all? Knowledge about autism and its associations with self-stigma, cognitive fusion, and distress among parents of children on the autism spectrum. Research in Autism, 131, 202811. https://doi.org/10.1016/j.reia.2026.202811
Salleh, N. S., Tang, L. Y., Jayanath, S., & Abdullah, K. L. (2022). An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD). Journal of Multidisciplinary Healthcare, 15, 2053–2066. https://doi.org/10.2147/JMDH.S376869
Salleh, N. S., Yoong, T. L., Husain, M., Abdullah, K. L., & Cheng, K. Y. (2024). Affiliate Stigma, Resilience and Quality of Life among Parents of Children with Autism Spectrum Disorder in Two Public Hospitals in Kelantan, Malaysia. Malaysian Journal of Medical Sciences, 31(3), 217–228. https://doi.org/10.21315/mjms2024.31.3.17
Sun, M., Xu, X., Song, K., Sun, X., & Fan, C. (2026). The Centrality of Behavioral Stigma: A Network Analysis of Affiliate Stigma and Quality of Life in Chinese Parents of Children with Autism. Applied Research in Quality of Life. https://doi.org/10.1007/s11482-026-10570-1
Tong, J., Chen, X., Wang, B., Wang, T., Wang, X., Ma, S., Shi, D., Wang, X., & Yan, D. (2024). Moderating effects of general self-efficacy on courtesy stigma and anxiety and depressive symptoms of parents of children with autism spectrum disorder. Frontiers in Psychiatry, 15, 1454004. https://doi.org/10.3389/fpsyt.2024.1454004
Wang, W., Yang, Y., Song, C., Liu, Q., Mu, R., & Yu, D. (2024). Suicidal risk among Chinese parents of autistic children and its association with perceived discrimination, affiliate stigma and social alienation. BMC Psychiatry, 24(1), 784. https://doi.org/10.1186/s12888-024-06252-7
Wang, Y.-N., Lin, Q.-H., Meng, D., Wang, J., Xu, H.-P., Wei, W.-H., & Zhang, J.-Y. (2024). Relationship Between Mindfulness and Affiliate Stigma in Parents of Children with Autism Spectrum Disorder in China: The Mediating Role of Coping Styles. Asian Nursing Research, 18(2), 89–96. https://doi.org/10.1016/j.anr.2024.03.001
Werner, S., & Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34(11), 4103–4114. https://doi.org/10.1016/j.ridd.2013.08.029
Wong, C. C. Y., Mak, W. W. S., & Liao, K. Y.-H. (2016). Self-Compassion: a Potential Buffer Against Affiliate Stigma Experienced by Parents of Children with Autism Spectrum Disorders. Mindfulness, 7(6), 1385–1395. https://doi.org/10.1007/s12671-016-0580-2
Ye, Y., Deng, T., Chen, M., Huang, B., Ji, Y., Feng, Y., Liu, S., Zhang, T., & Zhang, L. (2024). Relationship between affiliate stigma and family quality of life among parents of children with autism spectrum disorders: The mediating role of parenting self-efficacy. Archives of Psychiatric Nursing, 49, 23–31. https://doi.org/10.1016/j.apnu.2024.01.011
Yip, C. C. H., & Chan, K. K. S. (2022). Longitudinal impact of public stigma and courtesy stigma on parents of children with autism spectrum disorder: The moderating role of trait mindfulness. Research in Developmental Disabilities, 127, 104243. https://doi.org/10.1016/j.ridd.2022.104243
Öz, B., Yüksel, T., & Nasiro?lu, S. (2020). Depression-anxiety symptoms and stigma perception in mothers of children with autism spectrum disorder; [Otizm spektrum bozuklugu tanisi alan çocuklarin annelerinde görülen depresyon-anksiyete belirtileri ve damgalanma algisi]. Noropsikiyatri Arsivi, 57(1), 50–55. https://doi.org/10.29399/npa.23655
Azman, A. A., & Zainal, M. S. (2026). Autism Related Stigma and Psychological Well Being among Parents of Children with Autism. International Journal of Academic Research in Progressive Education and Development, 15(4), 1003-1013.
Copyright: © 2026 The Author(s)
Published by HRMARS (www.hrmars.com)
This article is published under the Creative Commons Attribution (CC BY 4.0) license. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this license may be seen at: http://creativecommons.org/licences/by/4.0/legalcode