Maternal Caregiving Stress in Autism and the Role of Awareness: Psychosocial Burden, Coping Mechanisms and Implications for Support Systems: A Review
DOI:
https://doi.org/10.31632/ijsblc.2026.v02i03.001Keywords:
Autism Spectrum Disorder (ASD), Coping Strategies, Maternal Caregiving Stress, Psychological Burden, World Autism Awareness Month (WAAM)Abstract
April, observed globally as World Autism Awareness Month (WAAM), provides an important platform to highlight not only the needs of individuals with Autism Spectrum Disorder (ASD) but also the often-overlooked experiences of their caregivers. Among these, mothers of young adults with ASD face persistent and evolving stressors that extend beyond childhood into adulthood. While early childhood caregiving has received significant research attention, the stress experienced by mothers of young adults with ASD remains comparatively underexplored, particularly in low- and middle-income countries. This review synthesizes interdisciplinary literature to examine the multidimensional stress experienced by mothers during the transition of individuals with ASD into adulthood. This review synthesizes existing literature on maternal caregiving stress in autism, focusing on psychological burden, social stigma and systemic gaps during the transition to adulthood. Importantly, the paper examines how awareness initiatives, especially those intensified during April, contribute to reducing stigma, enhancing social support, and promoting access to services. By linking caregiving challenges with awareness-driven interventions, the review underscores the transformative potential of sustained advocacy and public engagement in improving caregiver well-being and fostering inclusive societies.
References
American Psychiatric Association, DSM-5 Task Force. (2013). Diagnostic and statistical manual of mental disorders: DSM-5™ (5th ed.). American Psychiatric Publishing, Inc. https://doi.org/10.1176/appi.books.9780890425596
Biggs, A., Brough, P., & Drummond, S. (2017). Lazarus and Folkman's psychological stress and coping theory. The handbook of stress and health: A guide to research and practice, 349-364. https://doi.org/10.1002/9781118993811.ch21
Bitsika, V., & Sharpley, C. F. (2004). Stress, anxiety and depression among parents of children with autism spectrum disorder. Journal of Psychologists and Counsellors in Schools, 14(2), 151-161. https://doi.org/10.1017/S1037291100002466
Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134(2), e454-e463. https://doi.org/10.1542/peds.2013-3164
Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain and Development, 35(2), 133-138. https://doi.org/10.1016/j.braindev.2012.10.004
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. https://doi.org/10.1111/1467-9566.00316
Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215-222. https://doi.org/10.1080/1366825021000008639
Lazarus, R.S., & Folkman, S. (1984). Stress, Appraisal, and Coping. Springer Publishing.
Lovell, B., Moss, M., & Wetherell, M. A. (2012). With a little help from my friends: Psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Research in Developmental Disabilities, 33(2), 682-687. https://doi.org/10.1016/j.ridd.2011.11.014
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, 745-762. https://doi.org/10.2147/NDT.S100634
Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583-594. https://doi.org/10.1093/geront/30.5.583
Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042-1049. https://doi.org/10.1542/peds.2011-2864
Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2012). Adults with autism: Outcomes, family effects, and the multi-family group psychoeducation model. Current Psychiatry Reports, 14(6), 732-738. https://doi.org/10.1007/s11920-012-0328-1
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566-574. https://doi.org/10.1007/s10803-010-1070-3
Downloads
Published
Issue
Section
License
Copyright (c) 2026 International Journal of Sustainable Biome and Life Care
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
