Keywords
children diagnosed with ASD
the Filipino community
autism spectrum disorder
How to Cite
Abstract
Introduction
Parents of children with Autism Spectrum Disorder (ASD) often face heightened levels of stress and health challenges compared to parents of neurotypical children.
Purpose
This study aimed to explore the experiences of parents of children with ASD in Dagupan City, The Philippines.
Methods
Thestudy used a hermeneutic phenomenology approach to deeply examine the experiences of parents of autistic children, using the themes of the poem, “A Journey Without a Road Map.” A total of 11 parents participated in the study, which was conducted using face-to-face interviews following a specific interview protocol. The researchers also observed the participants' body movements, gestures, and facial expressions to study underlying emotions.
Results
Four major themes from “A Journey Without a Road Map” emerged from this study, representing the systematic progression of the experiences of parents of ASD children from diagnosis to daily living. The themes are blessing and burden, traveling on a rocky road, keeping on course in uncharted territory, and pleasures in the blind journey. The researchers made extrapolations by interpreting the parents' expressions through thorough observation of their body movements, gestures, and facial expressions. Researchers had direct encounters with some parents of ASD over time, and the challenges they face daily are undeniable. They experience situations that require extra strength, devotion, and commitment, and face circumstances that test their ability to adapt and live like every other parent.
Conclusion
There is a need for the government or other concerned institutions to sensitize the general public about autism spectrum disorder, sustain this initiative, and establish a functional network of support groups for parents with autistic children. In addition, the process of gradually integrating ASD children into the society by ensuring they are trained and supported to perform certain jobs has proven to be effective in alleviating the burdens and distress of the parents.
References
Autism Society The Philippines (ASP). (2014). Meeting the needs of the vulnerable. https://www.autismsocietyphilippines.org./meeting-needs-of-vulnerable.html
Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4(2), 217–228. https://doi.org/10.1016/j.rasd.2009.09.008
Brobst, B. J., Clopton, R. J., & Hendrick, S. S. (2009). Parenting children with autism spectrum disorder: The couple’s relationship. Journal of Autism, 24(1), 38-49. https://doi.org/10.1177/1088357608323699
Catalano, D., Holloway, L., & Mpofu, E. (2018). Mental health interventions for parent careers of children with Autistic Spectrum Disorder: Practice guidelines from a Critical Interpretive Synthesis (CIS) Systematic Review. International Journal of Environmental Research and Public Health, 15(2), 341. https://doi.org/10.3390/ijerph15020341
Centers for Disease Control and Prevention. (2016). Prevalence of Autism Spectrum Disorders–Autism and Developmental Disabilities Monitoring Network, United States. Surveillance Summaries. MMWR 58 (No. SS-10).
Charman, T., & Baird, G. (2002). Practitioner review: Diagnosis of autism spectrum disorder in 2- and 3-year-old children. Journal of Child Psychology and Psychiatry, 43(3), 289-305. https://doi.org/10.1111/1469-7610.00022
Cable Network News. (2007). Health conditions. https://cnn.com/2007/health/conditions/
Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278–1291. https://doi.org/10.1007/s10803-007-0512-z
Faras, H., Ateeqi, A. N., & Tidmarsh, L. (2010). Autism Spectrum Disorders. Annals of Saudi Medicine, 30(4), 295–300. https://doi.org/10.4103/0256-4947.65261
Gona, J. K., Newton, C. R., Rimba, K., Mapenzi, R., Kihara, M., Van de Vijver, F. J., & Abubakar, A. (2016). Challenges and coping strategies of parents of children with autism on the Kenyan coast. Journal of Rural Health, 16(2), 3517.
Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976. https://doi.org/10.1111/j.1365-2788.2006.00933.
Hartmann, A. (2012). Autism and its impact on families. https://sophia.stkate.edu/msw_papers/35
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9(4), 377–391. https://doi.org/10.1177/1362361305056078
Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 337–344. https://doi.org/10.1016/j.rasd.2010.04.017
Johnson, N., Frenn, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: Parenting stress, family functioning and health-related quality of life. Families, Systems & Health, 29(3), 232–262.
Karst, S. J., & Van-Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247-277. https://doi.org/10.1007/s10567-012-0119-6
Killian, D. K. (2008). Helping till it hurts? A multi-method study of compassion fatigue, burnout, and self-care in clinicians working with trauma children. Journal of Traumatology, 14(1), 32. https://doi.org/10.1177/1534765608319083
Link, B. G., & Phelan, J. C. (2001). Conceptualizing Stigma. Annual Review of Sociology, 27(1), 363-385. https://doi.org/10.1146
Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77, 7–36.
Munhall, P. L. (2012). A phenomenological method. In Munhall, P. L. (Ed.), Nursing Research: A Qualitative Perspective (5th ed., pp. 113-175). Jones and Bartlett Publications.
Nealy, E. C., O’Hare, L., Powers, D. J., & Swick, C. D. (2012). The impact of autism spectrum disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, 15(3), 187-201. https://doi.org/10.1080/10522158.2012.675624
Neely-Barnes, L. S., Hall, R. H., Roberts, J. R., & Graff, J. C. (2011). Parenting a child with Autism Spectrum Disorders: Public perceptions and parental conceptualizations. Journal of Family Social Work, 14(3), 208-225. https://doi.org/10.1080/10522158.2011.571539
Orlikowski, J. W., & Baroudi, J. J. (1991). Studying information technology in organizations: Research approaches and assumptions. Journal of Information Systems, 2(1), 1-28. https://doi.org/10.12872/Fisre.2.1.1
Padden, C., & James, J. E. (2017). Stress among parents of children with and without Autism Spectrum Disorder: A comparison involving physiological indicators and parent self-reports. Journal of Developmental and Physical Disabilities, 29, 567–586. https://doi.org/10.1007/s10882-017-9547-z
Perry, A. (2004). A model of stress in families of children with developmental disabilities: Clinical and research applications. Journal on Developmental Disabilities, 11, 1–16. http://www.oadd.org/publications/journal/issues/volno/download/perry.pdf
Rajabali, A. (2014). Creative approaches to research. Journal of Artistic and Creative Education, 8(1). https://issuu.com/jaceonline/docs
Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29, 95-103.
Schaaf, C. R., Toh-Cohen, S., Stephanie, L. J., Outten, G., & Benedives, W. T. (2011). The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Journal of Psychology and Counseling, 15(3), 10-22. https://doi.org/10.1177/1362361310386505
Sunday Punch. (2006). 269 disabled children under therapy at STAC 9. https://punch.dagupan.com/articles/news/2006/08/269-disabled-children-under-therapy-at-stac-9/
Ventola, P., Kleinman, J., Pandey, J., Wilson, L., Esser, E., Boorstein, H., & Fein, D. (2007). Differentiating between autism spectrum disorders and other developmental disabilities in children who failed a screening instrument for ASD. Journal of Autism and Developmental Disorders, 37(1), 425–436. https://doi.org/10.1007/s10803-006-0177-z
Werner, B. D. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58, 543-550. https://doi.org/10.5014/ajot.58.5.543
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.