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, help-seeking 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.

Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low‐ and middle‐income countries: a review of reviews

“…Apart from low levels of mental health literacy common in many LAMIC, unique cultural factors play an important role in the understanding of autism, including attributing differences in children with autism to supernatural or religious causes (‘spirit possession’, ‘cursed ancestral’ or ‘God's will’). This, compounded by low community awareness across settings, reduces help seeking (Abubakar et al, 2016; Bakare, Taiwo, Bello‐Mojeed, & Munir, 2019; Franz, Chambers, von Isenburg, & de Vries, 2017; de Leeuw, Happe, & Hoekstra, 2020; Shorey et al, 2020).…”

“…A strong recommendation emerging from these reviews is the need to increase awareness of autism as a neurodevelopmental condition at every level, from communities to institutions, in order to reduce discrimination and create more socially inclusive societies. De Leeuw et al (2020) suggest a need to understand the variations in parenting practices and the impact of autism symptomatology in varied cultures, which could impact the thresholds for defining autism in various settings. Along with increased education, the presence of protective social policies also plays an important role in eradicating stigma.…”

“…Eleven reviews commented on the limited availability of services with trained professionals serving as a huge barrier to care for autism (see Table 1). This barrier affects the realization of UHC in a number of ways: the absence of skilled health providers within accessible range of families and services concentrated in metropolitan centers (Bakare et al, 2019; Shorey et al, 2020); and long waiting lists to access limited services resulting in an unequal impact on families from lower socioeconomic backgrounds (de Leeuw et al, 2020). A key recommendation by Franz et al (2017) is the development and evaluation of standardized curricula for healthcare, education, and social care professionals designed to impact on knowledge, skills, and attitudes.…”

Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review

“…Although belonging to certain cultural and ethnic minority groups appeared to operate as a barrier to accessing formal EI, aspects of culture and ethnicity may act as protective factors for parental well‐being (Akbar & Woods, 2019). Due to the clear influence of cultural and contextual factors on perceptions of developmental disabilities and help‐seeking, factors identified in de Leeuw’s et al (2020) review on ASD, which included non‐ASD literature, could be useful for designing research to understand access in non‐Western, low‐ and middle‐income countries. Key factors include cultural norms, beliefs and attitudes, mental health and child development literacy, goals of seeking clinical help and transference of information towards the clinician (de Leeuw et al, 2020).…”

“…Due to the clear influence of cultural and contextual factors on perceptions of developmental disabilities and help‐seeking, factors identified in de Leeuw’s et al (2020) review on ASD, which included non‐ASD literature, could be useful for designing research to understand access in non‐Western, low‐ and middle‐income countries. Key factors include cultural norms, beliefs and attitudes, mental health and child development literacy, goals of seeking clinical help and transference of information towards the clinician (de Leeuw et al, 2020). It would also be beneficial to raise awareness of developmental disabilities amongst various professionals who work with children and families.…”