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 |
|---|---|
| Language: | English |
| Authors: | Laila Ashrafun, Mohammad Jasim Uddin (ORCID |
| Source: | Journal of Autism and Developmental Disorders. 2025 55(9):3314-3327. |
| Availability: | Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/ |
| Peer Reviewed: | Y |
| Page Count: | 14 |
| Publication Date: | 2025 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Child Caregivers, Caregiver Attitudes, Autism Spectrum Disorders, Symptoms (Individual Disorders), Clinical Diagnosis, Intervention, Foreign Countries, Identification, Children, Causal Models, Social Influences, Religious Factors, Genetics, Misconceptions, Biomedicine, Coping, Well Being |
| Geographic Terms: | Bangladesh |
| DOI: | 10.1007/s10803-024-06440-0 |
| ISSN: | 0162-3257 1573-3432 |
| 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. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1481163 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwHkpA_dh5ZU5Umdn5W4F4JPAAAA4zCB4AYJKoZIhvcNAQcGoIHSMIHPAgEAMIHJBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDDQHf1MddW9oazEu3wIBEICBm-6DFlJbMkDZmgB4ZKJFSVLHPlQVmsS2c2aKGWqMIF2h9-D3UZS7gAsI64i7W2AD8egbg9j7Z1JCePQRk1Cwvrh2uyPmUgoIavmmqFyBOl6gxIWRwG22maobeHitWlrxh16J4EU88UwYRqAdCWX_9uHGiNgs1nKAjj_8Xj6A1gzm65E4tjAASgl9LVqTrI31UgrizdFkLb3qf01g Text: Availability: 1 Value: <anid>AN0187434606;aut01sep.25;2025Aug22.05:47;v2.2.500</anid> <title id="AN0187434606-1">Caregiver Narratives of Children with Autism Spectrum Disorder: Exploring Symptom Recognition, Diagnosis, and Interventions </title> <p>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.</p> <p>Keywords: Autism; Biomedical; Intervention; Supernatural; Qualitative; Bangladesh; Psychology and Cognitive Sciences Psychology Medical and Health Sciences Public Health and Health Services</p> <p>Copyright comment Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.</p> <hd id="AN0187434606-2">Introduction</hd> <p>Autism Spectrum Disorder (ASD) comprises a set of neurodevelopmental conditions that typically emerge early in childhood, persist throughout the individual's life, and significantly influence developmental trajectories and real-world functioning (Lai &amp; Baron-Cohen, [<reflink idref="bib36" id="ref1">36</reflink>]; Varcin &amp; Jeste, [<reflink idref="bib57" id="ref2">57</reflink>]; Howlin &amp; Magiati, 2017). The diagnosis of ASD follows the DSM-5 criteria outlined by the American Psychiatric Association (APA, [<reflink idref="bib3" id="ref3">3</reflink>]), which includes deficits in two core domains: social communication and interaction (Criterion A), and restricted, repetitive patterns of behavior, interests, or activities (Criterion B). While the DSM-5 provides fundamental diagnostic criteria, it does not endorse a standardized diagnostic tool (McCarty &amp; Frye, [<reflink idref="bib41" id="ref4">41</reflink>]), posing challenges in the diagnostic process. Various instruments have been developed, including parent/caregiver reports, interviews, observations, and evaluations of behavior and functional impairments. The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) (Lord et al., 2012) and Autism Diagnostic Interview-Revised (ADI-R) (Le Couteur et al., [<reflink idref="bib37" id="ref5">37</reflink>]) are considered the "gold standard" for ASD diagnosis. The ADOS-2 involves semi-structured observations that allow examiners to observe behaviors relevant to ASD over 45–60 min, with additional time for scoring and interpretation. While the ADOS-2 enhances assessment standardization, its applicability to community clinics serving individuals with diverse diagnoses, including serious mental illness, remains unclear (Maddox et al., [<reflink idref="bib39" id="ref6">39</reflink>]).</p> <p>Early identification of speech delays, repetitive behaviors, and social impairments in children is crucial, as it allows for adapting care, providing timely interventions, supporting developmental needs, and improving outcomes for schooling and socialization (Penner &amp; Lai, [<reflink idref="bib46" id="ref7">46</reflink>]; Johnson &amp; Myers, [<reflink idref="bib31" id="ref8">31</reflink>]). Intensive early behavioral intervention has shown benefits for some children with ASD, enhancing cognitive, language, and real-world skills (Warren et al., [<reflink idref="bib58" id="ref9">58</reflink>]). In addition to early intensive behavioral intervention, Natural Developmental Behavioral Interventions (NDBIs), which focus on developing spontaneous social interactions in natural settings, have also proven beneficial. Group design studies of NDBIs suggest that these types of interventions can facilitate improvements in a number of domains, including social communication, language, adaptive behavior, play, and cognition in children with autism (Crank et al., [<reflink idref="bib14" id="ref10">14</reflink>]).</p> <p>While early diagnosis of ASD allows for prompt intervention, the diagnostic journey tends to be lengthy and complex, often emotionally taxing for families (Crane et al., [<reflink idref="bib13" id="ref11">13</reflink>]; Eggleston et al., [<reflink idref="bib23" id="ref12">23</reflink>]). For example, current wait times in British Columbia, Canada exceed 80 weeks (BC Provincial Health Services Authority, [<reflink idref="bib4" id="ref13">4</reflink>]), while fewer than 9% of children obtain an initial diagnostic appointment within 13 weeks in England (NHS England, 2023). Disparities are also present in the United States, with European American children receiving an ASD diagnosis an average of 1.5 years earlier than their ethnic minority peers, expediting access to supportive services for the former group (Ennis-Cole et al., [<reflink idref="bib24" id="ref14">24</reflink>]). Similarly, despite parental recognition of symptoms around 24 months in India, formal diagnosis extends beyond two years, ranging from 49.75 to 55.6 months (Preeti et al., [<reflink idref="bib47" id="ref15">47</reflink>]). Irrespective of geographical location, these prolonged delays hinder access to early intervention, extending periods of uncertainty for families with children affected by ASD.</p> <p>Cross-cultural studies show that societal and cultural factors greatly influence the perception and management of developmental disorders like ASD (Daley, [<reflink idref="bib16" id="ref16">16</reflink>]; Ravindran &amp; Myers, [<reflink idref="bib49" id="ref17">49</reflink>]). Given the variability across societies, researchers advocate exploring local parental perspectives on their children's experiences to gain deeper insights (Daley, [<reflink idref="bib16" id="ref18">16</reflink>], [<reflink idref="bib17" id="ref19">17</reflink>]; Desai et al., [<reflink idref="bib19" id="ref20">19</reflink>]). This approach emphasizes the importance of embracing indigenous viewpoints to better understand psychopathology and facilitate more culturally appropriate, effective community care, leading to improved outcomes (Chatterjee et al., [<reflink idref="bib7" id="ref21">7</reflink>]). Moreover, across countries, caregiver conceptualizations of ASD often diverge from professional views, incorporating spiritual, moral, or personal beliefs (Altiere &amp; von Kluge, [<reflink idref="bib2" id="ref22">2</reflink>]; Desai et al., [<reflink idref="bib19" id="ref23">19</reflink>]; Samadi, [<reflink idref="bib50" id="ref24">50</reflink>]). For example, Kim ([<reflink idref="bib33" id="ref25">33</reflink>]) found significant cross-cultural differences in social and cultural interpretations of ASD across Canada, Nicaragua, and Korea. In Egypt, ASD has been associated with curses or mental retardation, sometimes leading to confinement (Gharib, [<reflink idref="bib26" id="ref26">26</reflink>]). In China, prevailing views link ASD to affluence and idleness, resulting in interventions like long-distance walking in heavy clothing or weight training (Connor, [<reflink idref="bib12" id="ref27">12</reflink>]).</p> <p>In India and Bangladesh, disability or ASD is often mistakenly attributed to supernatural beliefs, such as 'bad karma,' perpetuating stigma and misinformation (Sharma &amp; Sinha, [<reflink idref="bib52" id="ref28">52</reflink>]; Uddin &amp; Ashrafun, [<reflink idref="bib56" id="ref29">56</reflink>]). This pervasive stigma surrounding ASD profoundly impacts not only the individuals with ASD but also their entire families. While cultural factors significantly influence the understanding of autism, knowledge about specific sociocultural beliefs in Bangladesh remains limited. Existing studies (e.g., Hasnain &amp; Akter, [<reflink idref="bib28" id="ref30">28</reflink>]; Khanam, [<reflink idref="bib32" id="ref31">32</reflink>]) offer minimal insights into cultural beliefs, social acceptance, education, caregiving, and parental help-seeking for children with ASD in Bangladesh. This study delves into the beliefs of caregivers regarding the origins and remedies for ASD, with a particular focus on recognizing initial symptoms, challenges associated with diagnosis, and the diverse strategies parents pursued in treatment approaches.</p> <p>The neurodiversity paradigm, which embraces neurological differences as part of human diversity, may clash with cultural perspectives that view ASD or disabilities as defects or abnormalities to be corrected. In cultures where neurodevelopmental conditions are attributed to supernatural causes or seen as sources of shame, the neurodiversity paradigm advocating for acceptance may face resistance. Cheng et al. ([<reflink idref="bib8" id="ref32">8</reflink>]) argue its limited global applicability due to varying attitudes and stigma. Therefore, researchers emphasize the importance of contextualizing and adapting neurodiversity movements to better align with local cultures. Sociocultural differences, along with political and language barriers, can hinder international autism research collaborations. Overcoming such obstacles requires a commitment to cross-cultural dialogue and studies, as highlighted by Cheng et al. In this context, this research is particularly important as Bangladesh lacks adequate research and organizations dedicated to supporting children with ASD and their caregivers. Publishing data from underrepresented regions will advance global understanding of autism and underscore the need for further research to promote neurodiversity worldwide, reduce stigma, and enhance access to support services.</p> <p>This study adheres to Sameroff's ([<reflink idref="bib51" id="ref33">51</reflink>]) transactional model of development, an integrated framework elucidating the complex interplay between children's development and their socio-ecological environments. It argues that developmental outcomes stem from continuous dynamic interactions between the developing child and multifaceted social contexts. This model proposes that nature and nurture intricately intertwine, mutually shaping one another bidirectionally. Development results from complex reciprocal influences between children's evolving biological factors and psychological capacities over time, while their socio-ecological environment concurrently shapes and responds to developmental changes through settings like family, peers, school systems, and neighborhoods. This aligns with the growing recognition of the need for research and support services focused on ASD to consider the complex interplay of influences that affect the growth and mental health of children with ASD (Mukherjee &amp; Beresford, [<reflink idref="bib42" id="ref34">42</reflink>]).</p> <hd id="AN0187434606-3">Materials and Methods</hd> <p>The study was conducted in the Sylhet City Corporation area, a diverse city in northeastern Bangladesh with a population of 532,426. Data was collected from two special-needs schools: a private school serving 34 children with ASD and a government-run school serving 64 children with ASD, Down syndrome, and cerebral palsy. Both the government and the private school provide services including counseling, speech therapy, physiotherapy, and occupational therapy for children with ASD.</p> <p>Fifty-five parents confirmed that their children had received a clinical ASD diagnosis. From this group, we collected data from 22 caregivers, comprising 4 fathers (F) and 18 mothers (M). Notably, two joint interviews were conducted with both parents together, totaling 4 parents of children with ASD. Informants were selected using a purposive-convenience sampling method, and the number of respondents interviewed was determined by reaching interpretative saturation. This process involves collecting data until further interviews no longer yield new insights or cultural meanings.</p> <p>Data included semi-structured in-depth interviews, observations, and 4 case studies (2 fathers and 2 mothers) conducted between June and July 2019. Following a qualitative phenomenological design, we collected parents' lived experiences with their children from birth to the present. Interview and case study guidelines were crafted after an extensive literature review. Open-ended, semi-structured interviews enabled participants to articulate experiences in their own words (Sampled guiding questions are added after references).</p> <p>Participants were assigned codes to mitigate potential researcher biases. Most interviews were taken at schools with permission; some were home-based per parent preference. Interviews lasted 50–90 min, averaging 60 min. The interviews were conducted in Bengali, the native language of both the researchers and participants, and subsequently translated into English by bilingual team members.</p> <p>The sample comprised 17 Muslims and 5 Hindus. Fathers averaged 46 years old and mothers averaged 37 years. Most of the children with ASD were males, aged around the age of 9–14 years. Most families (72.7%) lived in joint/extended arrangements within the City Corporation (The socio-demographic variables are presented in Table 1).</p> <p>Table 1 Socio-demographic characteristics of Participants</p> <p> <ephtml> &lt;table frame="hsides" rules="groups"&gt;&lt;thead&gt;&lt;tr&gt;&lt;th align="left"&gt;&lt;p&gt;Age of the respondents (years)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;Mother: mean (SD)&lt;/p&gt;&lt;p&gt;Father: mean (SD)&lt;/p&gt;&lt;/th&gt;&lt;th align="left"&gt;&lt;p&gt;37.4 (3.7)&lt;/p&gt;&lt;p&gt;46 (6.4)&lt;/p&gt;&lt;/th&gt;&lt;/tr&gt;&lt;/thead&gt;&lt;tbody&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Respondents' percentage&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Mother: % (n)&lt;/p&gt;&lt;p&gt;Father: % (n)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;82% (18)&lt;/p&gt;&lt;p&gt;18% (4)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Region of the respondents&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Muslim: % (n)&lt;/p&gt;&lt;p&gt;Hindu: % (n)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;77% (17)&lt;/p&gt;&lt;p&gt;23% (5)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Education of the Respondents (Mother)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Secondary School Certificate&lt;/p&gt;&lt;p&gt;Higher Secondary Certificate&lt;/p&gt;&lt;p&gt;Graduate&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt; 33.3% (6)&lt;/p&gt;&lt;p&gt; 27.8% (5)&lt;/p&gt;&lt;p&gt; 38.9% (7)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Education of the Respondents (Father)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Secondary School Certificate&lt;/p&gt;&lt;p&gt;Higher Secondary and above&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25% (1)&lt;/p&gt;&lt;p&gt;75% (3)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Mother's Occupation&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Housewife&lt;/p&gt;&lt;p&gt;Primary school teacher&lt;/p&gt;&lt;p&gt;Govt. employee&lt;/p&gt;&lt;p&gt;College teacher&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;72.2% (13)&lt;/p&gt;&lt;p&gt;16.7% (3)&lt;/p&gt;&lt;p&gt;5.5% (1)&lt;/p&gt;&lt;p&gt;5.5% (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Father's Occupations&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;School teacher&lt;/p&gt;&lt;p&gt;Govt. employee&lt;/p&gt;&lt;p&gt;Professor&lt;/p&gt;&lt;p&gt;Business&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;25% (1)&lt;/p&gt;&lt;p&gt;25% (1)&lt;/p&gt;&lt;p&gt;25% (1)&lt;/p&gt;&lt;p&gt;25% (1)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Family Income (Taka)&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;15,000&amp;#8211;25,000&lt;/p&gt;&lt;p&gt;25,000&amp;#8211;35,000&lt;/p&gt;&lt;p&gt;35,000&amp;#8211;45,000&lt;/p&gt;&lt;p&gt;45,000 or above&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;41% (9)&lt;/p&gt;&lt;p&gt;18% (4)&lt;/p&gt;&lt;p&gt;18% (4)&lt;/p&gt;&lt;p&gt;23% (5)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Number of children&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;1&lt;/p&gt;&lt;p&gt;2&lt;/p&gt;&lt;p&gt;3 or above&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;1&lt;/p&gt;&lt;p&gt;15&lt;/p&gt;&lt;p&gt;6&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Family Type&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Nuclear&lt;/p&gt;&lt;p&gt;Joint&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;27.3% (6)&lt;/p&gt;&lt;p&gt;72.7% (16)&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;&lt;p&gt;Child with Autism&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Boy&lt;/p&gt;&lt;p&gt;Girl&lt;/p&gt;&lt;p&gt;Present age&lt;/p&gt;&lt;p&gt;Early symptom recognition&lt;/p&gt;&lt;p&gt;Diagnosis&lt;/p&gt;&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;14 (63.6%)&lt;/p&gt;&lt;p&gt;8 (36. 4%)&lt;/p&gt;&lt;p&gt;9&amp;#8211;14 years&lt;/p&gt;&lt;p&gt;5&amp;#8211;24 months&lt;/p&gt;&lt;p&gt;3&amp;#8211;5 years&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;/tbody&gt;&lt;/table&gt; </ephtml> </p> <p>The data analysis followed Colaizzi's ([<reflink idref="bib11" id="ref35">11</reflink>]) descriptive phenomenological framework, involving iterative reading for significant statements, theme categorization, crafting a comprehensive description, and integrating participant feedback. The transcripts in this study underwent a comprehensive review and repeated readings to highlight emerging codes. A coding index organized emerging codes into superordinate and subordinate themes. Through iterative analysis, these codes were compared to identify underlying themes, which were validated via cross-checking. Similarities among categories were noted to discern themes via focused coding. After meticulous refinement, theoretical coding established an overarching framework. Thematic analysis, supported by relevant quotes, presented the identified themes coherently.</p> <hd id="AN0187434606-4">The Research Team</hd> <p>The research team consisted of three social scientists, comprising two senior professors with PhDs in sociology and one female university graduate. The first author, who completed her MSS thesis on patient-doctor relations and holds an MPH degree, led the team. None of the researchers had personal experience parenting an autistic child. Our academic training in applied social science informed the development of research objectives and theoretical frameworks. During interviews, the researchers maintained an open and empathetic perspective, following the principle of 'empathetic neutrality' (Ormston et al., [<reflink idref="bib44" id="ref36">44</reflink>]), which allowed them to prioritize the perspectives and experiences shared by the participants.</p> <hd id="AN0187434606-5">Community Involvement</hd> <p>The study was supported by two school teachers from two special needs schools who had served there for many years, assisting with the recruitment of participants. In addition to the teachers, two parents of autistic children actively collaborated on rapport building and data collection. Prior to data collection, we obtained permission from the schools. The findings emerging from the study will be disseminated back to the schools and families. Their participation enriched the research by providing insider perspectives on the needs of children with ASD. The researchers aim to continue engaging the community in developing interventions and conducting further research.</p> <hd id="AN0187434606-6">Ethical Clearance and Informed Consent</hd> <p>The study received approval from the SUST Research Ethics Board (SREB) under ref. no. SSS/SOC/003/012. All participants provided written informed consent before enrolling in the study and were assured of confidentiality.</p> <hd id="AN0187434606-7">Data Policy Statement</hd> <p>The data supporting the findings of this study, including de-identified interview transcripts, are available from the corresponding author upon reasonable request.</p> <hd id="AN0187434606-8">Findings</hd> <p></p> <hd id="AN0187434606-9">Caregivers' Insight into Early Childhood Challenges</hd> <p>In recounting early childhood challenges, caregivers unanimously reported their children initially exhibited typical development after birth. However, they later noticed worrisome symptoms and atypical behaviors, leading them to pursue various diagnostic assessments. Most participants noted that mothers were typically the first to identify developmental abnormalities in their children. In contrast, only a minority mentioned fathers, grandparents, or other family members recognizing abnormalities before the mothers did. As primary caregivers, mothers utilized their intimate understanding of their children's typical behavior and developmental trajectory, enabling them to identify subtle anomalies that others might overlook. Some caregivers noticed symptoms earlier than others, while some recognized them a bit later, typically between 6 and 24 months—a crucial period when delays can signal more significant developmental issues. As a caregiver (M) stated, "My son had a tendency to cry continuously and was highly sensitive from an early age. I observed it when he was 5/6 months. He could not be soothed... It was difficult for me to keep him calm and still in bed." Observing these early signs long before any official diagnosis, which research suggests typically happens around a mean age of 38 to 120 months (Daniels &amp; Mandell, [<reflink idref="bib18" id="ref37">18</reflink>]), led attentive caregivers to experience profound frustration, helplessness, and sadness.</p> <p>In delineating the early concerning symptoms of their children, caregivers mentioned a number of indicators of atypical behavior and anomalies associated with ASD. These include language and speech delays, unresponsiveness to stimuli such as dangling objects or name-calling, limited or no eye contact, excessive crying, infrequent smiling, difficulty following directions, disruptions in sleep patterns, little interest in peers, minimal engagement with toys compared to peers, and stunted age-appropriate growth. Below are specific examples of early symptoms:My son was always restless, never calm for a moment, and disliked sleeping... so hyperactive (<emph>matha gorom</emph>). (M)Her growth was not normal. Even now, at 12 years old, her behaviors and activities resemble those of an infant. She does not communicate her hunger or need to use the toilet. (M)While other infants in our family and neighborhood were generally cheerful, my baby was consistently quiet and aloof from an early age, seemingly devoid of emotion. He wouldn't respond when called by name and smiled very rarely. (M)When my child was around 12 months old, I noticed that he did not show interest in dangling toys or respond when I moved my fingers in front of his eyes. He seemed indifferent and did not reach for them. (M)</p> <p>While many children display noticeable symptoms within the first two years, some exhibit typical development until their third, fourth, or later years. Below are excerpts from a caregiver to provide perspective:My son was healthy and adorable. He appeared to develop normally, interacting and responding like other children his age. When he was about four years old, I observed that my son was stuttering with his speech and facing difficulty when trying to express himself. (F)</p> <p>This diversity underscores the complex nature of ASD's etiology, suggesting that its origins are multifaceted and do not conform to a single developmental narrative.</p> <hd id="AN0187434606-10">Caregivers' Views on Children's Present Challenges</hd> <p>Many caregivers openly expressed profound emotional distress when sharing about their children's present condition, often with quivering voices and tears. These reactions highlighted their deep sense of helplessness, grief, and guilt as they observed their children struggle without apparent progress over time. In some cases, caregivers even lamented that their children's conditions had worsened, with additional challenges, including disintegrative disorders such as anger and violence, emerging as they aged. Importantly, participants in this study didn't just address one issue their children faced but outlined a range of developmental problems, some beyond ASD's core traits. From their narratives, three main themes emerged regarding the current hurdles of their children: verbal communication difficulties, intellectual and behavioral challenges, and deficits in adaptive self-help skills over time.</p> <hd id="AN0187434606-11">Verbal Communication Challenges</hd> <p>Speech and verbal communication difficulties stand out as primary features of atypical behavior noted by caregivers in their children. In the absence of verbal articulation, these children heavily rely on non-verbal cues such as facial expressions, gestures, and repetitive vocalizations to convey their needs. As illustrated by a caregiver:My son cannot speak. It's difficult to understand what he is trying to express. His tongue is a bit short. He relies on facial expressions to communicate with us, and only his mother can understand his expressions. (F)</p> <p>Another caregiver recounted the experience of restricted and repetitive behavior as follows:My daughter often babbles, engaging in repetitive, non-meaningful words to herself, and rarely articulates an understandable word or two. It is unfortunate that people often incorrectly assume she has a mental disorder. Some even directly ask me if my daughter is mad (<emph>manushik rugi/pagol</emph>). (M)</p> <p>The above example highlights the challenges faced by caregivers of children with ASD and their continuous struggle against societal misconceptions. These misunderstandings reveal a significant gap in societal understanding, leading to isolation for these children and their families. However, it is important to understand that nonverbal communication in children with ASD holds significant meaning, as demonstrated by Yergeau ([<reflink idref="bib60" id="ref38">60</reflink>]), who challenges the notion that autistic individuals cannot effectively communicate due to societal and medical assumptions, suggesting that autism itself serves as a form of communication.</p> <p>For caregivers, the restrictions in verbal expression skills detrimentally influence their daily routines and interactions with these children. As shared by one caregiver (M), "Taking care of my child is extremely challenging as she struggles to communicate or engage in daily activities. She can't even convey whether she's feeling unwell or well. If only Allah helps us overcome her speech difficulties, she could express herself effectively." These communication barriers faced by children with ASD pose significant challenges for caregivers. While nonverbal communication can convey inner experiences, interventions such as assistive technology and specialized training, as highlighted by Boucher ([<reflink idref="bib5" id="ref39">5</reflink>]), can significantly alleviate barriers to social interaction and expression for many children with ASD. Our respondents consistently stress the crucial need to address their children's communication difficulties, extending beyond basic nonverbal cues.</p> <hd id="AN0187434606-12">Intelligence and Behavioral Challenges</hd> <p>The majority of caregivers' narratives delineated a spectrum of autistic characteristics manifested in their children's intelligence, attention, and behaviors, providing nuanced insights into the multifaceted nature of the challenges faced by the children with ASD. Their accounts highlighted the following cognitive and learning difficulties through examples: (<reflink idref="bib1" id="ref40">1</reflink>) perpetual restlessness, as articulated by a mother who observed her child never sitting calmly in one place; (<reflink idref="bib2" id="ref41">2</reflink>) a notable resistance to basic commands, accompanied by unconventional behaviors like rolling on the floor and smearing saliva on the face and surroundings, as recounted by another mother; (<reflink idref="bib3" id="ref42">3</reflink>) aversion to novel environments and heightened distress in crowded social settings, reported by a father; (<reflink idref="bib4" id="ref43">4</reflink>) significant disruptions in sleep patterns, with one mother describing her child frequently staying awake until the early hours of the morning; (<reflink idref="bib5" id="ref44">5</reflink>) a proclivity towards solitary play and responding to inquiries with barely audible or incomprehensible few-word answers, as expressed by yet another mother; (<reflink idref="bib6" id="ref45">6</reflink>) a unique social interaction pattern, wherein the child enjoys playing with others but exhibits a preference for repetitive games, a sentiment conveyed by a father; (<reflink idref="bib7" id="ref46">7</reflink>) an aversion to solitude, with a mother noting her child's constant need for proximity; and (<reflink idref="bib8" id="ref47">8</reflink>) a propensity for becoming absorbed in an internal world, a characteristic observed by another mother.</p> <p>Some children not only face cognitive and learning challenges but also contend with childhood disintegrative disorder, marked by violent, self-destructive behaviors, and tantrums. One caregiver (M) vividly recounted her daughter's destructive outbursts: "Her aggression has steadily escalated, to the point of hurling household objects when she becomes violent. I am the sole person capable of managing her rages." Similarly, another caregiver (M) mentioned, "My son is hyperactive and exhibits violent and self-harming tendencies, such as slamming his head against walls. At school, he often hits other students." These behavioral challenges echoed in a study from New York, highlight the diverse presentation of autism depending on the child's developmental and chronological age, encompassing symptoms like hyperactivity, impulsivity, aggression, self-injurious behaviors, and disruptive behaviors like temper tantrums (Duarte et al., [<reflink idref="bib22" id="ref48">22</reflink>]). One caregiver described these disruptive behaviors occurring even in public settings:Whenever we went out, whether to the market or a relative's house, my son insisted on coming. Otherwise, he would become uncontrollable, crying and screaming excessively. Taking him led to him touching everything, causing damage and upsetting people.... our neighbors now avoid us. Recently, my son even broke one of our relative's cell phone. (M)</p> <hd id="AN0187434606-13">Self-Help Skills Problems</hd> <p>All participants highlighted significant deficits in their children's adaptive self-help skills, crucial for daily activities, personal hygiene, and future independence. These skills include tasks like bathing, grooming, dressing, oral hygiene, and preparing for school. While these abilities are typically acquired during the course of normal development, research shows that impairments in these skills are a core challenge in ASD and predict functional independence later in life (Smith et al., [<reflink idref="bib53" id="ref49">53</reflink>]). As one caregiver expressed:I am worried my daughter is not able to do anything independently. She struggles with basic tasks, including using the toilet, completing a bath, or putting on her shoes. We take her to a special needs school every day. Despite our continuous efforts to teach her essential self-help activities such as eating, bathing, making the bed, and using the toilet, we haven't noticed any significant progress for her to take care of herself when she is older. (M)</p> <p>This caregiver's account underscores the substantial deficits in self-help skills and the persistent efforts of parents and special needs schools. The limited progress despite dedicated efforts highlights the complexity of these challenges and emphasizes the necessity for tailored interventions to meet the unique needs of children exhibiting autism spectrum characteristics.</p> <hd id="AN0187434606-14">Caregivers' Perceptions About Factors Contributing to ASD</hd> <p>At first, many caregivers did not view their children's developmental irregularities as serious issues, instead optimistically believing that these phases would resolve on their own with time. This hopeful perspective often led to delays in pursuing diagnoses, medical evaluations, and interventions. Although most of the caregivers acknowledged their uncertainty and limited understanding of the specific factors contributing to their children's problems, they proactively formulated their own theories to make sense of what was contributing to their children's improvement, decline, or status quo maintenance. The analysis uncovers a wide range of beliefs held by caregivers, encompassing supernatural, cultural, biological, and biomedical/genetic influences. These diverse perspectives move beyond overly simplistic attempts to attribute causation to a single factor, recognizing the complex interplay of multiple potential variables impacting the child's developmental trajectory.</p> <hd id="AN0187434606-15">Socio-Cultural and Environmental Factors</hd> <p>Participants' narratives highlighted a nuanced interplay between spiritual factors and societal perceptions of developmental disabilities in Bangladeshi culture. Their beliefs included concepts such as the evil eye, karma, God's will, fate, and divine trust, reflecting the diverse cultural and religious perspectives influencing their understanding of their children's conditions. While some regarded it as a divine test or predetermined misfortune, others interpreted it as a spiritual challenge or an opportunity to deepen their trust in God. Furthermore, self-blame surfaced, with some caregivers pondering whether ancestral mistakes or their own unintentional wrongdoings contributed to their children's challenges through the lens of karma.</p> <p>For example, some participants frequently associated their children's difficulties with malevolent spirits, attributing them to activities during pregnancy. Moreover, beliefs in the evil eye and talismans emerged, with caregivers expressing apprehensions about potential harm inflicted by neighbors and relatives. Specific examples are provided below:Initially, we all believed that my son's challenges were caused by malevolent spirits (ufri laga/jiiner batash) due to my necessity to go outside during my pregnancy.... Now, I am uncertain. (M)I believe my son's disability is due to an evil eye cast by my in-laws, who also placed a talisman (bad amulet/<emph>tabiz</emph>) on him out of dislike for me and to take my husband's property. They have even attempted to arrange a marriage for my husband, believing that I am incapable of having a normal child. (M)</p> <p>Some caregivers encountered interpretations grounded in religious practices, where family members linked their children's disability to perceived lapses in religious adherence. As one caregiver stated:As a school teacher, I had to go outside even during my pregnancy. My affinal family members believed that my child's disability was a punishment for my failure to properly maintain the veil and adhere to religious rules. Now, I feel like I am not a perfect mother because I gave birth to a child with disability. (M)</p> <p>Many participants attributed their children's autism to divine forces or supernatural influences deeply entrenched in cultural and religious beliefs, feeling they had little control over the condition. Here are some of their perspectives:Allah is testing us (<emph>phorikkhat phalaichoin</emph>) by granting us a child with disability. There is no known treatment for this disability. (M)Allah is testing our patience (<emph>dhaiya</emph>), and we must accept it as we have no choice in this matter. (F)My son has become my fate (<emph>bhagya</emph>). It is Allah's decision, and we have nothing to do with it. (M)I believe in Karma and fate, but I don't see my son's challenges as divine punishment because we didn't do anything wrong. If our ancestors did anything wrong, it would be their fault, not ours or our son's. (F)My son is a divine child (<emph>deb shishu</emph>), entrusted to us by God for us to take care of. (M).</p> <p>Another caregiver stated differently,It is a misfortune (<emph>dhurabhāgya</emph>) and a curse from God. We did not understand why God had given us this punishment. (F)</p> <p>Instances of blame were glaringly apparent, manifesting in accusations against mothers for their children's behavioral and psychological impairments, as articulated by one caregiver (M): "My family members, especially my mother-in-law and my husband, often accuse me of being an incompetent mother. They criticize my ability to properly control and teach my child proper behavior, as my son does not listen to anything." This relentless criticism not only undermines mothers' confidence but also exacerbates the already challenging situation in society. Furthermore, many mothers often blame themselves unnecessarily and feel guilty, leading them to endure especially difficult challenges. As a caregiver encapsulated these emotions, expressing:Every mother dreams of giving birth to a perfect child, but I feel like I have failed in that aspect. I consider myself an unfortunate mother, unable to bring a neurotypical child into this family. I often notice people looking at me with pity. Many attribute it to parenting, rather than recognizing the child's behavioral challenges. (M)</p> <p>The narratives above highlight societal misconceptions wrongly associating developmental disabilities with maternal shortcomings, overlooking the complex interplay of biological and environmental factors. This stigma underscores widespread ignorance about neurodiversity, emphasizing the need for education and advocacy.</p> <hd id="AN0187434606-16">Biomedical/Genetic Factors</hd> <p>Within the domain of biomedical factors, respondents identified several potential contributors to ASD. These include genetics, mental retardation, family history, delayed marriage and conception, medical disorders, and child vaccination. There's a particular emphasis on significant concerns regarding mothers' intake of antibiotics or medication during pregnancy. The prominence of genetics and family history in caregivers' causal models is particularly noteworthy, aligning with existing research (DeStefano &amp; Shimabukuro, [<reflink idref="bib20" id="ref50">20</reflink>]) that underscores the robust hereditary components of ASD. However, participants' interpretations of genetic risk factors appeared influenced by cultural perspectives. For instance, ASD is often associated with mothers, and the condition is frequently linked to maternal lineage rather than paternal, reflecting gendered assumptions about disability prevalent in Bangladeshi society. As one caregiver shared:My mother-in-law and other family members often blame me for my 12-year-old daughter's disability. She has neurological and psychological problems, which they believe come from my side. It is a genetic disease, but I do not know if anybody in my maternal or paternal lineage has had autism. Only Allah truly understands my situation. (M)</p> <p>Another caregiver speculated that genetic factors might be the cause: "My husband was very simple and had the habit of babbling, so my child is experiencing these problems." However, her attribution reveals gendered assumptions – emphasizing the husband's contribution over hers despite genetic risks stemming from both parents.</p> <p>Respondents' narratives also highlighted maternal age at marriage and first conception as potential biological risk factors, suggesting a perceived influence on ASD development. As a respondent (M) described: "My in-laws maintain the belief that my child's disability relates to my supposedly late marriage, although I got married at the age of twenty-three and conceived within a year. If age contributes, it is related to my husband, who was over 35 years old when we got married." While advanced parental age and associated health complications have been linked to an increased risk of ASD, research has yet to definitively establish them as direct causes. A meta-analysis did find an increased ASD risk associated with older parental age (Gardener et al., [<reflink idref="bib25" id="ref51">25</reflink>]), with one study estimating that 4–13% of cases were linked to parents over 35 years old (Croen et al., [<reflink idref="bib15" id="ref52">15</reflink>]).</p> <p>Participants' narratives also link their children's ASD to childhood vaccinations, maternal health problems during pregnancy, and the intake of antibiotics and vitamins. Here are a few examples:My son's disability is due to vaccines. Nowadays, children receive many vaccines within 2–4 months, which can cause various problems in the body. Our grandparents enjoyed good health without the use of vaccines. (M)Nowadays, many people in our society have disabilities and mental illnesses. I believe these may be connected to mothers consuming artificial vitamins and medications during pregnancy. (F)My wife has been experiencing high blood pressure since the early stages of her conception, which may be the cause of my son's problems. (F)</p> <p>Beliefs linking vaccines to ASD likely stem from distrust and limited health literacy in developing regions. Rigorous scientific studies, such as those conducted by the CDC ([<reflink idref="bib6" id="ref53">6</reflink>]) and DeStefano and Shimabukuro ([<reflink idref="bib20" id="ref54">20</reflink>]), consistently find no evidence of such a link. The CDC explicitly states, "There is no link between vaccines and autism," citing multiple large epidemiological studies. While maternal health issues during pregnancy have been discussed in caregivers' narratives, a recent review by Kodesh et al. ([<reflink idref="bib34" id="ref55">34</reflink>]) concluded that while certain maternal health conditions may influence ASD risk, the risk increases are modest.</p> <hd id="AN0187434606-17">Caregivers' Experiences in Navigating Healthcare Interventions</hd> <p>This study explores that a significant number of caregivers are initially reluctant to disclose their children's conditions, driven by negative stigmas such as embarrassment, societal taboos, labeling, and attributing the child's condition to caregiver fault. These cultural factors profoundly shape caregivers' perspectives and experiences. As one caregiver (M) recounted, "When my son was around one year old, I noticed he lacked eye contact, but I suppressed my concerns, fearing criticism." After receiving the ASD diagnosis, this caregiver admitted, "We kept it private from neighbors, wary of unfair labels like 'mentally ill' or 'foolish' (<emph>buka</emph>) being attached to my son." Similarly, another caregiver (F) remarked, "I had some awareness of mental disabilities (manasik protibondhita), but when my son was diagnosed with autism, we chose not to disclose it to others because people often saw it as punishment from Allah. We were also apprehensive about him being labeled as autistic (protibondhi)." In Pakistan, disabilities are also perceived as punishment, leading families to conceal individuals with disabilities due to stigma (Rathore et al., [<reflink idref="bib48" id="ref56">48</reflink>]). However, despite initial hesitancy, the findings reveal that all caregivers actively sought guidance from various sources for their children's problems. Their healthcare pathways fell into two main categories: alternative/spiritual techniques and modern medicine.</p> <hd id="AN0187434606-18">Alternative/Spiritual Approaches</hd> <p>When describing alternative and spiritual diagnostic interventions, participants shared valuable insights into their preference for traditional and spiritual healing methods to address their children's developmental and behavioral disorders. They engaged with various practitioners, including religious leaders like mosque imams and pirs, homeopathic physicians, herbalists, and folk healers, and visited shrines or temples. This inclination towards spiritual and folk healing modalities is deeply rooted in the religious beliefs and cultural fabric of Bangladesh, where traditional healing practices and spiritual beliefs often intersect with conventional medical approaches. While these practices may offer comfort and align with cultural beliefs, relying solely on them to diagnose and treat neurodevelopmental disorders in children could potentially delay proper diagnosis and care. As one caregiver shared her experiences, echoing the sentiments of many participants:Initially, we amassed various local medicines based on family and neighbor recommendations. We consulted a mosque Imam (<emph>hujur</emph>) for <emph>tabiz</emph> (Quran verse-based amulets) and pani-pora (water-based enchantments). We went to a shrine and prayed for our son's recovery. We obtained medicine from local homeopathic doctors and traditional healers (<emph>kabiraj</emph>). We were drawn to these remedies because these medicines had no adverse health effects. We exhaustively explored all options, including visiting a shrine, but everything ended up without result. (M)</p> <p>Another caregiver recounted,I initially sought guidance from a religious guru who attributed my son's problems to unfavorable planetary influences. The guru organized rituals (puja) and provided my son with sacred red threads (<emph>dhaga</emph>) to wear on his wrist, along with sanctified green coconut water (<emph>dab pora</emph>) to drink. I even made offerings of a hen and later a duck, yet my son's condition exhibited no improvement. (M)</p> <p>The use of amulets, incantations, visiting shrines, and traditional healers reflects the profound cultural and social influences shaping approaches to illness. These practices aren't merely traditions but embedded rituals offering hope, control, and connection to the divine in times of difficulty and illness. Alongside spiritual healing, caregivers often rely on prayer and divine intervention, drawing strength from their religious beliefs. Many caregivers of children with autism likely use religious beliefs and practices to cope with the stress and challenges they face. Examples illustrate their devotion:We fervently pray to Allah every day for our son's recovery and peace. (M)We pray every day, as we have unwavering faith that only Allah, with His boundless miracles and power, can perfect our child. (F)We firmly believe that it is Allah who has bestowed upon us a child like her, so only Allah can bring about her cure. (M)</p> <p>Similar to the findings of this study, other research has also indicated that religion can serve as a fundamental pillar for coping and resilience among families of children with ASD (Pandya, [<reflink idref="bib45" id="ref57">45</reflink>]). In Nepal, the majority of mothers indicated that they sought to manage their circumstances by relying on spiritual methods, such as placing strong faith in God and hoping for the improvement of their child with ASD (Acharya &amp; Sharma, [<reflink idref="bib1" id="ref58">1</reflink>]).</p> <hd id="AN0187434606-19">Modern Medical Care</hd> <p>With unease unresolved by initial alternative approaches, most participants in this study expressed a need to consult modern medical professionals such as pediatricians, neurologists, ENTs, and psychologists for their children's diagnoses. As a caregiver (M) recounted: "First, I took my son to a government hospital where the doctor dismissed my son's problem without any tests. I then visited a private pediatrician suspecting hearing problems, but no evidence was found. Eventually, I sought an evaluation at a specialized hospital where, after a series of assessments and electroencephalography (EEG), my son was diagnosed with autism at around six years old." Importantly, opting for modern medical advice didn't entail forsaking long-trusted spiritual and cultural healing practices entirely. Some caregivers persisted in employing alternative approaches like homeopathy, Ayurveda, or folk remedies, which they considered relatively safe. Concurrently, many parents embraced a blend of traditional and modern treatments, illustrating the intricate interplay between old and new approaches. A caregiver (F) articulated: "Still, we consult doctor to doctor - <emph>hujur</emph> (religious person), <emph>kabiraj</emph> (herbalist), homeopathic, pediatrician, and neurologist - to ensure the well-being of our child." But another participant (F) said differently, "I have no faith in the evil eye (<emph>Ku Nazar</emph>) or invoked water (<emph>pani pora</emph>). From the very beginning, I took my son to a pediatrician, and then a neurologist who suspected that my son was autistic, but I did not believe it. I consulted a doctor in India, and the doctor diagnosed my son with autism."</p> <p>A key source of frustration for some participants, whose educational and economic status was comparatively higher, was the conflicting clinical opinions they encountered, leading them to consult with multiple physicians. As a caregiver (F) described, "We need to seek advice from various doctors, as they offer differing views on whether our son has autism. These inconsistent views leave us in an ongoing state of confusion."</p> <p>Respondents' accounts also highlight the systemic barriers that exacerbated families' struggles in seeking an ASD diagnosis and care. Brief consultations with clinicians dismissing concerns as transient speech problems added to caregivers' frustrations. As a participant (F) stated, "Some doctors, much like our parents and grandparents, straightforwardly mentioned that some children are different and take time to speak." With developmental disability care options severely limited, accessing expertise to conclusively diagnose ASD proved an arduous process. A caregiver related,We recognized our son's problems very early, but doctors failed to accurately understand his problems, resulting in a diagnostic delay of about 4 to 5 years. There are no autism experts in this city. While essential, treatments are exorbitant, costing 8000–10000 TK monthly, so we rely on herbal medicine. (F)</p> <p>Receiving an ASD diagnosis profoundly impacts families, often causing intense grief, trauma, and devastation as caregivers face an uncertain future and shattered hopes for their children. A caregiver expressed, "I still can't accept it. The pain feels immense when I am alone." All of them perceived ASD as a life-long problem that needs life-long care and support. A participant conveyed a similar sentiment, saying "The doctor diagnosed my son with autism and explained that there is no cure for this condition, but I found it hard to believe."</p> <hd id="AN0187434606-20">Discussion</hd> <p>This study provides rich insights into caregivers' perspectives on autism spectrum disorder in Sylhet City, Bangladesh, highlighting the complex interplay between children's symptoms, caregivers' beliefs, and sociocultural factors. The findings demonstrate how caregivers' narratives shift over time, from initial recognition of symptoms to evolving theories about causes and approaches to help-seeking. It aligns with Sameroff's transactional model, whereby the child and their environment continually influence each other bidirectionally (Sameroff, [<reflink idref="bib51" id="ref59">51</reflink>]).</p> <p>In particular, this study brings to the fore how cultural and religious beliefs profoundly shape parental explanatory models of ASD, leading to wide variation in perceived causes and preferred treatments. The prevalence of local myths overriding biomedical explanations points to gaps in awareness, education, and the stigma surrounding ASD in this region. Yet these beliefs also confer coping benefits, as faith and traditional healers provide hope and control amid uncertainty. Caregivers have found comfort in their religious beliefs, seeing their child as a gift from Allah, a test from Allah, Allah's will, or a divine child (<emph>deb shishu</emph>)—each representing a form of acceptance.</p> <p>While exploring the challenges faced by the children, the findings indicate that early symptoms described by caregivers closely align with the established diagnostic criteria for ASD, including communication deficits, lack of social engagement, and repetitive or restrictive behaviors. Similarly, current challenges reported by caregivers highlight communication difficulties affecting verbal, nonverbal, and emotional expression—core features of ASD that contribute to global diagnosis (Johnson &amp; Myers, [<reflink idref="bib31" id="ref60">31</reflink>]; Mahapatra et al., [<reflink idref="bib40" id="ref61">40</reflink>]). Additionally, parents mentioned cognitive, behavioral, and social challenges, reflecting the diverse profile of ASD traits. These included deficits in social attention, immersion in inner worlds, limited eye contact, difficulty adapting, and disruptive behaviors such as aggression or self-injury—all consistent with global research on ASD phenotypes (Happé &amp; Ronald, [<reflink idref="bib27" id="ref62">27</reflink>]; Uddin &amp; Ashrafun, [<reflink idref="bib56" id="ref63">56</reflink>]; Samadi, [<reflink idref="bib50" id="ref64">50</reflink>]; Desai et al., [<reflink idref="bib19" id="ref65">19</reflink>]; Divan et al., [<reflink idref="bib21" id="ref66">21</reflink>]). Deficits in adaptive functioning, such as self-care skills, further underscored the functional impacts reported by parents. In summary, the concerns expressed by caregivers closely mirror the core and associated features of ASD documented across various contexts.</p> <p>In understanding the potential factors contributing to their child's ASD, this study reveals that caregivers construct multifaceted explanatory models, blending sociocultural, religious, and biomedical perspectives. Put simply, parents' comprehension of ASD is shaped by two distinct knowledge systems and interpretations: sociocultural and biomedical. Their complex understandings highlight Sameroff's ([<reflink idref="bib51" id="ref67">51</reflink>]) transactional model, which suggests child development is shaped by the bidirectional interplay between the child's biology and sociocultural environment. Notably, none of the parents strictly adhered to one particular system; rather, they acknowledged the presence of differing perspectives on ASD causes and interventions. This nuanced understanding reveals the complexity of parental views, acknowledging explanatory pluralism, which has not been extensively captured in previous Bangladeshi research.</p> <p>Localized cultural beliefs and gender norms significantly influence the caregiver's understanding of autism, resulting in diverse perceptions of causes and preferred treatments. For instance, beliefs in evil spirits, fate, and divine punishment are common and rooted in Bangladesh's Islamic and supernatural context. This study expands on prior regional research (Divan et al., [<reflink idref="bib21" id="ref68">21</reflink>]; Sharma &amp; Sinha, [<reflink idref="bib52" id="ref69">52</reflink>]) by providing insights into these models through qualitative interviews.</p> <p>When explaining biomedical factors, respondents identified several contributors to ASD. These included genetics, mental retardation, family history, delayed marriage and conception, medical conditions, childhood vaccinations, and maternal use of antibiotics or medication during pregnancy. These findings corroborate earlier studies indicating that mothers predominantly perceive autism as a developmental disability caused by factors such as developmental delays, medical disorders, genetic conditions, and neurodevelopmental issues occurring before birth or infancy (Chukwueloka, [<reflink idref="bib9" id="ref70">9</reflink>]).</p> <p>The respondents highlighted the intergenerational transmission of language delays, emphasizing their heritability. However, they often normalized these genetic signs in boys, stating, "If the father speaks with a delay, the son will too," initially. This novel finding unveils how cultural gender norms intersect with biological risk, shaping parental interpretations of symptoms (Daley, [<reflink idref="bib17" id="ref71">17</reflink>]; Krishnamurthy, [<reflink idref="bib35" id="ref72">35</reflink>]; Uddin &amp; Ashrafun, [<reflink idref="bib56" id="ref73">56</reflink>]) in Bangladesh. However, the interaction between biomedical and supernatural or religious causal models remains underexplored. Future research could investigate how parents navigate apparent contradictions between these paradigms and whether specific explanatory models are relied upon more heavily at different stages of the diagnostic process.</p> <p>Shifting focus, mothers were frequently blamed for causing ASD, reflecting gender biases in Bangladeshi culture that assign mothers responsibility for children's wellbeing. While genetic factors likely play a significant role in ASD (Taylor et al., [<reflink idref="bib55" id="ref74">55</reflink>]), cultural expectations appear to influence which parental lines are scrutinized. Stigma may also prompt families to shift blame onto mothers, a dimension requiring further investigation.</p> <p>Factor such as the mother's age at the time of conception was seen as a potential contributor. Additionally, apprehensions were expressed about maternal illness during pregnancy, taking antibiotic medicine, and delivery contributing to ASD. Despite research debunking vaccine-related misconceptions (Clift &amp; Rizzolo, [<reflink idref="bib10" id="ref75">10</reflink>]; Taylor et al., [<reflink idref="bib54" id="ref76">54</reflink>]), some parental narratives still perceived a link between childhood vaccinations and ASD. This highlights a gap between scientific evidence and parental perspectives, emphasizing the necessity for culturally sensitive education and awareness. In summary, while biomedical factors were acknowledged, local cultural norms significantly influenced how parents interpreted and attributed potential causes of ASD in their children. This underscores the limitations of Western paradigms in comprehensively capturing the sociocultural dimensions of disability experiences globally.</p> <p>n the intervention process for ASD, our study, aligning with prior research (Daley, [<reflink idref="bib16" id="ref77">16</reflink>]; Ravindran &amp; Myers, [<reflink idref="bib49" id="ref78">49</reflink>]), explores how cultural beliefs profoundly influence the perspectives and approaches adopted by parents, families, and communities towards treatment. In the absence of universally accepted, scientifically sound treatments and amid a multitude of available interventions, local beliefs, and values emerge as influential guiding principles for parents irrespective of variations in education and economic status. These include seeking assistance from homeopathic doctors, Ayurveda experts, folk/herbal medicine practitioners, and religious figures. The integration of local resources, adherence to cultural customs, and the infusion of religious elements from Ayurveda traditions underline the depth to which cultural beliefs impact the treatment choices made by parents. This aligns with global trends, as indicated by the World Health Organization's 2013 report, showing that approximately 80% of the population in developing nations, including Bangladesh, relies on traditional healing as their primary health care. However, when traditional interventions prove ineffective, parents turn to professional medical providers such as physicians, psychologists, and pediatricians for diagnosis and treatment. Strikingly, this study finds that this shift toward medical professionals does not signify a complete abandonment of traditional approaches. Instead, most parents often embark on parallel paths, concurrently pursuing both medical and cultural treatment avenues for their children, creating a unique fusion of practices tailored to their beliefs and circumstances.</p> <p>Addressing diagnostic delays, this research uncovers significant gaps in obtaining an ASD diagnosis, with a formal diagnosis taking an average of 3–5 years despite parents noticing symptoms within 24 months. These delays in Bangladesh mirror similar findings from research conducted in India, Nepal, and Bulgaria (Daley, [<reflink idref="bib17" id="ref79">17</reflink>]; Mahapatra et al., [<reflink idref="bib40" id="ref80">40</reflink>]; Ivanov et al., [<reflink idref="bib30" id="ref81">30</reflink>]), indicating a broader global challenge. This study identifies sociocultural beliefs and practices, including stigma and a lack of spousal support, as hindrances to the timely disclosure of concerns by mothers. Dismissive attitudes from family and professionals, limited specialist access, and medical negligence compound these issues, frustrating parents and perpetuating delays in ASD diagnosis and implementation of early, evidence-based interventions. It is apparent that educated and economically affluent parents are more proactive in seeking modern medical support for their children with autism. However, therapy and specialized schooling are often prohibitively expensive, making treatment unattainable for parents from economically disadvantaged backgrounds. We found that some economically disadvantaged parents rely solely on traditional medicine for their child's treatment due to the exorbitant costs of evidence-based therapies and special education. To address these issues, nationwide public awareness campaigns can educate about ASD symptoms, early intervention, and reduce stigma. Expanding diagnostic and treatment facilities, along with healthcare professional training, can facilitate the timely identification of children in need. Government subsidy programs for ASD treatment at public hospitals could alleviate financial constraints for underprivileged families.</p> <hd id="AN0187434606-21">Limitations</hd> <p>While this study provides valuable insights, the small sample size of 22 caregivers, primarily mothers (82%), is a limitation. As with most qualitative research, generalization of the findings to the broader population may not be possible. Recognizing the value of children's voices and insights from extended family members, school teachers, and professionals could enrich the understanding of ASD beliefs and approaches in Bangladesh. Further analysis should also probe nuances in how biomedical and cultural models are blended and how different causal explanations impact stigma, coping, and help-seeking, which the research team plans to address in future research.</p> <hd id="AN0187434606-22">Study Implications</hd> <p>The findings of this study underscore the critical importance of early ASD detection and timely accurate diagnosis as fundamental pillars for achieving optimal interventions and outcomes. Given the absence of early detection programs related to ASD screening and evaluation procedures in the study area, implementing standardized screening protocols and raising awareness among healthcare providers could facilitate earlier identification and support for children with ASD in Bangladesh. A holistic approach is deemed essential to enhance the well-being and quality of life for Bangladeshi children with ASD. 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| Items | – Name: Title Label: Title Group: Ti Data: Caregiver Narratives of Children with Autism Spectrum Disorder: Exploring Symptom Recognition, Diagnosis, and Interventions – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Laila+Ashrafun%22">Laila Ashrafun</searchLink><br /><searchLink fieldCode="AR" term="%22Mohammad+Jasim+Uddin%22">Mohammad Jasim Uddin</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-6630-4117">0000-0002-6630-4117</externalLink>)<br /><searchLink fieldCode="AR" term="%22Dipa+Debnath%22">Dipa Debnath</searchLink> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Journal+of+Autism+and+Developmental+Disorders%22"><i>Journal of Autism and Developmental Disorders</i></searchLink>. 2025 55(9):3314-3327. – Name: Avail Label: Availability Group: Avail Data: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/ – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 14 – Name: DatePubCY Label: Publication Date Group: Date Data: 2025 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Child+Caregivers%22">Child Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+Attitudes%22">Caregiver Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Symptoms+%28Individual+Disorders%29%22">Symptoms (Individual Disorders)</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Intervention%22">Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Identification%22">Identification</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Causal+Models%22">Causal Models</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Influences%22">Social Influences</searchLink><br /><searchLink fieldCode="DE" term="%22Religious+Factors%22">Religious Factors</searchLink><br /><searchLink fieldCode="DE" term="%22Genetics%22">Genetics</searchLink><br /><searchLink fieldCode="DE" term="%22Misconceptions%22">Misconceptions</searchLink><br /><searchLink fieldCode="DE" term="%22Biomedicine%22">Biomedicine</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink><br /><searchLink fieldCode="DE" term="%22Well+Being%22">Well Being</searchLink> – Name: Subject Label: Geographic Terms Group: Su Data: <searchLink fieldCode="DE" term="%22Bangladesh%22">Bangladesh</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1007/s10803-024-06440-0 – Name: ISSN Label: ISSN Group: ISSN Data: 0162-3257<br />1573-3432 – Name: Abstract Label: Abstract Group: Ab Data: 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. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2025 – Name: AN Label: Accession Number Group: ID Data: EJ1481163 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1007/s10803-024-06440-0 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 14 StartPage: 3314 Subjects: – SubjectFull: Child Caregivers Type: general – SubjectFull: Caregiver Attitudes Type: general – SubjectFull: Autism Spectrum Disorders Type: general – SubjectFull: Symptoms (Individual Disorders) Type: general – SubjectFull: Clinical Diagnosis Type: general – SubjectFull: Intervention Type: general – SubjectFull: Foreign Countries Type: general – SubjectFull: Identification Type: general – SubjectFull: Children Type: general – SubjectFull: Causal Models Type: general – SubjectFull: Social Influences Type: general – SubjectFull: Religious Factors Type: general – SubjectFull: Genetics Type: general – SubjectFull: Misconceptions Type: general – SubjectFull: Biomedicine Type: general – SubjectFull: Coping Type: general – SubjectFull: Well Being Type: general – SubjectFull: Bangladesh Type: general Titles: – TitleFull: Caregiver Narratives of Children with Autism Spectrum Disorder: Exploring Symptom Recognition, Diagnosis, and Interventions Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Laila Ashrafun – PersonEntity: Name: NameFull: Mohammad Jasim Uddin – PersonEntity: Name: NameFull: Dipa Debnath IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 09 Type: published Y: 2025 Identifiers: – Type: issn-print Value: 0162-3257 – Type: issn-electronic Value: 1573-3432 Numbering: – Type: volume Value: 55 – Type: issue Value: 9 Titles: – TitleFull: Journal of Autism and Developmental Disorders Type: main |
| ResultId | 1 |
