Caregiver Narratives of Children with Autism Spectrum Disorder: Exploring Symptom Recognition, Diagnosis, and Interventions.
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| Title: | Caregiver Narratives of Children with Autism Spectrum Disorder: Exploring Symptom Recognition, Diagnosis, and Interventions. |
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| Authors: | Ashrafun, Laila, Uddin, Mohammad Jasim, Debnath, Dipa |
| Source: | Journal of Autism & Developmental Disorders. Sep2025, Vol. 55 Issue 9, p3314-3327. 14p. |
| Subjects: | Autism risk factors, Diagnosis of autism, Treatment of autism, Genetics of autism, Health literacy, Early medical intervention, Qualitative research, Health attitudes, Children with disabilities, Autism, Mothers, Interviewing, Culture, Parent attitudes, Disease prevalence, Psychological adaptation, Uncertainty, Genetic risk score, Attitude (Psychology), Rites & ceremonies, Attitudes toward mental illness, Fathers, Special education schools, Research methodology, Religion, Child development, Psychology of caregivers, Asperger's syndrome, Parents of children with disabilities, Early diagnosis, Risk perception, Delayed diagnosis, Caregiver attitudes, Psychosocial factors, Educational attainment, Symptoms, Children |
| Geographic Terms: | Bangladesh |
| Abstract: | The diagnosis of autism spectrum disorder (ASD) poses myriad challenges for families, yet there is a scarcity of research focusing on their journey from recognizing initial anomalies to implementing interventions. This qualitative study examines how caregivers in Sylhet, Bangladesh, perceive and manage ASD in their children, including early symptom identification, diagnostic processes, and intervention strategies. Data for this study were collected through semi-structured interviews, case studies, and observations involving 22 caregivers of children with ASD. Participants were chosen using purposive-convenience sampling, and data collection continued until interpretive saturation was achieved. The study findings unveil nuanced caregiver perceptions of ASD causation, influenced by sociocultural factors, religious beliefs, and genetic predispositions. These determinants wield significant influence over treatment modalities and the child's developmental trajectory. Importantly, the prevalence of supernatural beliefs and myths often surpasses biomedical explanations, highlighting gaps in awareness, educational outreach, and understanding of ASD. Nevertheless, religious beliefs and rituals concurrently serve as adaptive coping mechanisms, offering solace amidst uncertainty. Furthermore, a striking observation emerges: despite parents frequently identifying anomalies in their children within a 24-month, a substantial delay of 3 to 5 years persists between initial symptom recognition and formal diagnosis. This delay predominantly stems from caregiver hesitancy driven by societal stigmatization, familial dismissal attitudes, and limited diagnostic and specialized services. This study highlights the challenging diagnostic journey and caregiving for children with ASD in Bangladesh, stressing the need for systemic improvements in services, awareness, and research to enhance the well-being of individuals with ASD. [ABSTRACT FROM AUTHOR] |
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| Database: | Psychology and Behavioral Sciences Collection |
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| Abstract: | The diagnosis of autism spectrum disorder (ASD) poses myriad challenges for families, yet there is a scarcity of research focusing on their journey from recognizing initial anomalies to implementing interventions. This qualitative study examines how caregivers in Sylhet, Bangladesh, perceive and manage ASD in their children, including early symptom identification, diagnostic processes, and intervention strategies. Data for this study were collected through semi-structured interviews, case studies, and observations involving 22 caregivers of children with ASD. Participants were chosen using purposive-convenience sampling, and data collection continued until interpretive saturation was achieved. The study findings unveil nuanced caregiver perceptions of ASD causation, influenced by sociocultural factors, religious beliefs, and genetic predispositions. These determinants wield significant influence over treatment modalities and the child's developmental trajectory. Importantly, the prevalence of supernatural beliefs and myths often surpasses biomedical explanations, highlighting gaps in awareness, educational outreach, and understanding of ASD. Nevertheless, religious beliefs and rituals concurrently serve as adaptive coping mechanisms, offering solace amidst uncertainty. Furthermore, a striking observation emerges: despite parents frequently identifying anomalies in their children within a 24-month, a substantial delay of 3 to 5 years persists between initial symptom recognition and formal diagnosis. This delay predominantly stems from caregiver hesitancy driven by societal stigmatization, familial dismissal attitudes, and limited diagnostic and specialized services. This study highlights the challenging diagnostic journey and caregiving for children with ASD in Bangladesh, stressing the need for systemic improvements in services, awareness, and research to enhance the well-being of individuals with ASD. [ABSTRACT FROM AUTHOR] |
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| ISSN: | 01623257 |
| DOI: | 10.1007/s10803-024-06440-0 |
