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International Journal of Academic Research in Business and Social Sciences

Open Access Journal

ISSN: 2222-6990

Parents' Experiences during Child’s Autism Spectrum Disorder Diagnosis Process

Noorshahridah Moharam, Hasnah Toran

http://dx.doi.org/10.6007/IJARBSS/v13-i7/17811

Open access

Current research has shown a substantial increase in the prevalence of Autism Spectrum Disorder. This study aims to explore parents' experiences in getting their child's autism diagnosis. The research design is a mixed research through a survey using a questionnaire as an instrument that also contains several open questions. A total of 110 respondents who were parents of children with ASD were involved in this study. Quantitative data were analysed descriptively. The findings of the study show that parents are very satisfied with the information shared by professional officials regarding their child’s condition. Parents also stated that they need information that can help them get the appropriate intervention or education for their child after the diagnosis process. This study also found that parents experienced high emotional stress during the diagnosis process due to financial problems such as high diagnosis costs and pressure from family and community members who do not understand the issues faced by their children. Support for parents after the diagnosis process should continue in order to reduce the burden and stress they bear. The findings of this study could be a guide so that better services can be channelled to parents during and after their child's diagnosis process. Further studies need to be conducted to identify the types of services that can be channelled to these parents after the diagnosis process.

Amin, A. S., Ayu, H. M., Manap, J. (2020). Support Services For Families With Children With Learning Disabilities In Rural Areas. Malaysian Journal of Psychology 34, 28-41.
Bent, C. A., Barbaro, J. (2020). Parents' experiences of the service pathway to an autism diagnosis for their child: What predicts an early diagnosis in Australia? Research in Developmental Disabilities, 1-8.
Crane, L., & Chester, J. W. (2016). Experiences of autism diagnosis:A survey of over 1000 parents in the United Kingdom. Autism, 153-162.
Crane, L., & Batty, R. (2018). Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals. Journal of Autism and Developmental Disorders, 1-12.
Daniels, N. F., Coughlan, B., & Duschinsky, R. (2021). How UK health care professionals conceptualise parental experiences of the diagnostic process for autism spectrum disorder: A qualitative study. SAGE Open Medicine, 1-9.
DesChamps, T. D., Ibanez, L. V., Edmunds, S. R., Dick, C. C., & Stone, W. L. (2019). Parenting Stress in Caregivers of Young Children With ASD Concerns Prior to a Formal Diagnosis. Autism Research, 1-11.
Eggleston, M. J. F., & Thabrew, H. (2019). Obtaining an autism spectrum disorder diagnosis and supports:New Zealand parents’ experiences. Research in Autism Spectrum Disorders, 18-25.
Howlin P. & Moore A. (1997). Diagnosis in Autism: A Survey of Over 1200 Patients in the UK. Autism, 135-162.
Jacobs, D., & Steyaert, J. (2019). Parents’ views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study. European Child & Adolescent Psychiatry, 1-12.
Leadbitter, K., Macdonald, W., & Taylor, C. (2020). Parent perceptions of participation in a parent-mediated communication-focussed intervention with their young child with autism spectrum disorder. Vol. 24(8) 2129–2141.
Majin, M., Hashmi, S. I., & Sombuling, A. (2017). Kesedaran Guru Di Kota Kinabalu, Sabah Dalam Pengetahuan Dan Persepsi Terhadap Autism Spectrum Disorder (Asd). Jurnal Psikologi Malaysia, 31 (3) (2017): 56-63.
Martinez, M., & Thomas, K. C. (2018). Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis. Journal of Autism and Developmental Disorders, 1-11.
Moore, H. P., & Anna. (1997). Diagnosis in Autism: A Survey of Over 1200 Patients in the UK. Autism, 135-162.
Sharif, M. H. M., & Jamil, N. A. (2019). Cabaran Ibu Bapa Bersama Kanak-Kanak Kecelaruan Spektrum Autisme (Asd): Tinjauan Literatur. Malaysian Journal of Social Science, Jilid. 4 (1) 2019: 33-43.
Preece, D., & Trajkovski, V. (2017). Parent Education In Autism Spectrum Disorder – A Review Of The Literature1. Vol 53, br. 1, str. 128-138.
Rabbaa, A. S., & Dissanayake, C. (2019). Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders 66, 1-11.
Tickle, L. H. & Anna. (2019). UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence. Autism, 1-14.
Trimmer, E., McDonald, S., & Rushby, J. A. (2017). Not knowing what I feel: Emotional empathy in autism spectrum disorders. Vol. 21(4) 450–457.
Young, J. S., & Chafe, R. (2020). “Managing the Wait”: Parents’ Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder. Health Services Insights, 1-10.

In-Text Citation: (Moharam & Toran, 2023)
To Cite this Article: Moharam, N., & Toran, H. (2023). Parents’ Experiences during Child’s Autism Spectrum Disorder Diagnosis Process. International Journal of Academic Research in Business and Social Sciences, 13(7), 901 – 918.