Ashrafun Laila, Uddin Mohammad Jasim, Debnath Dipa
Department of Sociology, Shahjalal University of Science & Technology, Sylhet, Bangladesh.
J Autism Dev Disord. 2024 Jun 22. doi: 10.1007/s10803-024-06440-0.
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.
自闭症谱系障碍（ASD）的诊断给家庭带来了无数挑战，但针对他们从识别最初异常到实施干预这一过程的研究却很匮乏。这项定性研究考察了孟加拉国锡尔赫特的照顾者如何看待和管理孩子的自闭症，包括早期症状识别、诊断过程和干预策略。本研究的数据通过半结构化访谈、案例研究以及对22名自闭症儿童照顾者的观察收集而来。参与者采用目的便利抽样法选取，数据收集持续到达到解释饱和。研究结果揭示了受社会文化因素、宗教信仰和遗传易感性影响的照顾者对自闭症病因的细微看法。这些因素对治疗方式和孩子的发育轨迹有重大影响。重要的是，超自然信仰和神话的盛行往往超过生物医学解释，凸显了在自闭症认知、教育推广和理解方面的差距。然而，宗教信仰和仪式同时作为适应性应对机制，在不确定性中提供慰藉。此外，一个显著的观察结果出现了：尽管父母经常在24个月内就发现孩子的异常，但从最初症状识别到正式诊断之间仍存在3至5年的显著延迟。这种延迟主要源于社会污名化、家庭忽视态度以及有限的诊断和专业服务导致的照顾者犹豫。这项研究凸显了孟加拉国自闭症儿童诊断过程和照顾的挑战性，强调需要在服务、认知和研究方面进行系统性改进，以提高自闭症患者的福祉。
