Caregiver Narratives of Children with Autism Spectrum Disorder: Exploring Symptom Recognition, Diagnosis, and Interventions.
Bangladeshi parents spot autism by age two but still wait three to five years for diagnosis, echoing the same five-year global lag seen even in wealthy nations.
01Research in Context
What this study did
Ashrafun et al. (2025) sat with Bangladeshi caregivers and listened to their stories.
Parents told how they first saw signs of autism when the child was about two years old.
From that first worry to an official diagnosis took three to five more years.
What they found
Stigma, few local services, and belief in evil spirits slowed every step.
Families traveled to many doctors and still left without clear answers.
The wait was not because parents were late to notice; the system was late to respond.
How this fits with other research
Sáez-Suanes et al. (2023) reviewed 15 studies and found the same barriers for caregivers of color worldwide.
van 't Hof et al. (2021) show the global average diagnosis age is still five years, matching the Bangladesh delay.
Rattaz et al. (2022) found the same ~5-year mark in France, a country with free health care, proving the lag is not just a poverty issue.
Why it matters
You can’t shorten the lag by only teaching red flags; you must fix the pathway after the worry starts.
Build local screening days, train front-line doctors, and use short parent videos to speed referral.
When families speak of spirits or shame, weave cultural respect into the science so they stay in the system.
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02At a glance
03Original 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.
Journal of autism and developmental disorders, 2025 · doi:10.1097/YCO.0000000000000312