Lived Experiences of Malaysian Parents Following Their Child’s Autism Diagnosis
A Qualitative Study in Klang Valley
Bibliographic Data
| ID | 22327657 |
|---|---|
| Authors | Sara Salah Elheneidy (National University of Malaysia, corresponding author), Zhooriyati Sehu Mohamad (0000-0002-9565-4909, UCSI University) |
| Year | 2026 |
| Volume | 12 |
| Issue | 1 |
| Pages | 33 |
| Publication date | 2026-05-31 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | The Malaysian Journal of Qualitative Research (JOURNAL) |
| Journal identifiers | ISSN: 1823-8521 • E-ISSN: 3009-0237 |
| Publisher | Qualitative Research Association of Malaysia (PUBLISHER) |
| DOI | 10.61211/mjqr120103 |
| OpenAlex | W7165672603 |
| Language | EN |
| References cited | 43 |
Autism spectrum disorder (ASD) is a neurodevelopmental condition that affects communication, social interaction, and behaviour, and its rising prevalence has significant implications for families. In Malaysia, the number of children registered with ASD increased from 6,991 in 2013 to 53,323 in 2023, reflecting a substantial rise in diagnosed cases. This study explored the lived experiences of parents in Klang Valley following their child’s ASD diagnosis, with attention to emotional adjustment, spousal relationships, and overall life satisfaction. Using a qualitative phenomenological design, semi-structured interviews were conducted with ten participants, three fathers and seven mothers, who had been primary caregivers for at least one year post-diagnosis. Participants were recruited through purposive and snowball sampling. Thematic analysis identified seven major themes: (emotional experiences, new challenges and growth, support systems, challenges faced by couples, strengthened relationships, redefined life satisfaction, and emotional resilience). Parents initially experienced intense emotional responses, including denial, sadness, anger, and disappointment. Over time, many transitioned toward acceptance and developed resilience. Major challenges included financial strain from therapy costs, limited access to services, societal stigma, and marital tension. Despite these difficulties, many parents reported personal growth, strengthened family bonds, and increased patience and empathy. Support from spouses, extended family, teachers, and the wider community, along with spiritual beliefs, particularly the concepts of Reda (contentment) and Shukur (gratitude), and self-care practices, contributed to emotional resilience. These findings offer a culturally grounded insight into the realities of raising a child with ASD in Malaysia and underscore the need for inclusive, family-oriented support services and greater societal awareness
Autism · Autism spectrum disorder · Grounded theory · Interpretative phenomenological analysis · Lived experience · Qualitative research · Snowball sampling · Thematic analysis · Autism Spectrum Disorder Research · Family and Disability Support Research · Family Caregiving in Mental Illness
Diagnostic and Statistical Manual of Mental Disorders
Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020
Religious Coping in Families of Children with Autism
Parent and Family Impact of Autism Spectrum Disorders
The quality of life of parents of children with autism spectrum disorder
Target Article
Thematic analysis.
Special Education Teachers’ Competency and Challenges in Teaching Children with Intellectual Disabilities
Spiritual Care in Palliative Settings
Behind the Scenes of Parents Nurturing a Child with Autism
The fundamental association between mental health and life satisfaction
Using thematic analysis in psychology
Challenges faced by parents of children diagnosed with autism spectrum disorder
A Step-by-Step Process of Thematic Analysis to Develop a Conceptual Model in Qualitative Research
| Citation velocity | historical |
|---|---|
| Highly cited | No |