A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

Abstract

Autism research is heavily skewed towards western high-income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low-and middle-income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the process of identifying and diagnosing individuals with ASD is missing. This study aims to outline these factors by proposing a conceptual framework. A multidisciplinary review approach was applied to inform the development of the conceptual framework, combining a systematic review of the relevant autism research literature with a wider literature search spanning key texts in global mental health, cultural psychiatry, cross-cultural psychology and intellectual disability research. The resulting conceptual framework considers the identification, helpseeking and diagnostic process at four interrelated levels: i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms, and describes the cultural and contextual factors associated with each of these levels, including cultural norms of typical and atypical behaviour, culture-specific approaches to parenting, mental health literacy, cultural beliefs, attitudes and stigma, as well as the affordability, availability, accessibility and acceptability of services. This framework, mapping out the cultural and contextual factors that can affect the identification, help-seeking and diagnosis of ASD, may function as a springboard for the development of culturally appropriate autism screening and diagnostic instruments, and inform future cross-cultural autism research directions. The framework also has relevance for clinicians and policy makers aiming to improve support for underserved autism populations worldwide. Lay summaryThe vast majority of autism research is conducted in western high-income settings. We therefore know relatively little of how culture and context can affect the identification, helpseeking and diagnosis of autism across the globe. This paper synthesises what is known from the autism research literature and a broader literature and maps out how culture and context may affect i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms.

Epidemiology of Autism Spectrum Disorders: A Review of Worldwide Prevalence Estimates Since 2014

“…Results of multiple regression also highlight differences in prevalence due to the geographical area where the study is performed, with Europe showing significantly lower prevalence than Australia and Asia. As argued above, this result appears to be at least partially due to the source of data used in the study, but it can indeed be due to several determinants such as socio-cultural [61,62] and socio-economic factors [63], including organisational factors [37,64].…”

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

“…Further research on assessment tools and intervention approaches with cultural and contextual adaptations taking into account the cultural and contextual dimensions of autism is needed (de Leeuw et al 2020). The development of culturally appropriate diagnostic and assessment tools is vital for access to effective early intervention or educational support (de Leeuw et al 2020), and the involvement of parents in assessment sessions can facilitate the interpretation of the child's behaviour from their own cultural perspective. Furthermore, disparities in intervention outcomes among CLD groups may be reduced if interventions are perceived to be more relevant and applicable from the perspective of CLD families (Davenport et al 2018).…”

Autism Spectrum and Other Neurodevelopmental Disorders in Children of Immigrants: A Brief Review of Current Evidence and Implications for Clinical Practice

“…Potential barriers to diagnosis, access to and retention in specialized care reported in studies conducted among immigrants are similar across disorders and include both structural/socioeconomic factors (e.g., financial barriers, underinsurance, problems with transportation, fragmented services, and language barriers) and social/cultural factors (e.g., lack of social support, stigma and discrimination, insufficient understanding of the host country's health system, low health literacy, and differences in values and expectations between health service providers and parents) (9,10,116,(118)(119)(120)(121)(122)(123)(124)(125)(126).…”

“…This mismatch in expectations may often stem from the fact that cultures differ substantially in their perceptions of the etiology and symptoms of neurodevelopmental disorders, on their prognosis, as well as on the effectiveness and acceptability of treatments. For example, studies suggest that the likelihood that parents attribute certain behaviors to a medical condition differs across ethnic groups (125). Some behaviors typical of ASD, such as avoiding eye contact, may be perceived as a way of expressing respect toward authority figures rather than a sign of atypical development in some Asian cultures (11,118,125).…”

“…For example, studies suggest that the likelihood that parents attribute certain behaviors to a medical condition differs across ethnic groups (125). Some behaviors typical of ASD, such as avoiding eye contact, may be perceived as a way of expressing respect toward authority figures rather than a sign of atypical development in some Asian cultures (11,118,125). Likewise, the extent to which children engage in imaginative play differs across cultural groups (125).…”