Nothing about us without us: the importance of local collaboration and engagement in the global study of autism

Abstract

Our current understanding of autism and other developmental disorders is primarily based on research conducted in high-income countries, predominantly in North America and Europe. Even within high-income countries, White participants are overrepresented in autism research. There is now increased recognition that a more global and diverse research representation is warranted. This paper argues that in order for global and diverse research efforts to be effective, it is essential to collaborate and engage with local experts and stakeholders, including local researchers, clinicians and representatives from governmental and non-governmental organisations. Such collaborations ensure that studies use culturally appropriate methods and materials, and that research findings are interpreted taking local context into account. Ultimately, these collaborations build local capacity and foster the development of culturally and contextually appropriate interventions that address locally perceived needs. The adage ‘nothing about us without us’ is vital to global autism research.

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

“…As far as we are aware, this is the first attempt to provide a structured overview of the cultural and contextual factors of influence in the process of identification, help-seeking and diagnosis of ASD globally, drawing on literature from different disciplines. Based on this framework, we suggest future research directions to build the urgently needed capacity for ASD research and services globally (Table 1) Throughout all strands of future cross-cultural research suggested in Table 1, an important general guideline is to make sure that the cultural group under consideration is represented in the research group conducting the work, ensuring that the research uses culturally and contextually appropriate research methods, and that findings are interpreted with appreciation of the local context (Hoekstra, Girma, Tekola, & Yenus, 2018).…”

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

“…This study aimed to explore the perspectives and experiences of Ethiopian caregivers, professionals and other stakeholders on the WHO CST programme to inform its adaptation and implementation in Ethiopia. Findings from the consultation and review process illustrated the importance of collaborating and engaging with local stakeholders and experts, to ensure buy-in of the local community and to ensure that the programme fits the culture and context (Hoekstra, Girma, Tekola, & Yenus, 2018). Specifically, the consultation and review were instrumental in highlighting caregivers' needs and expectations (such as the need for greater emphasis on psycho-education) and ensuring that the programme content and delivery strategy would be acceptable and sustainable in the Ethiopian setting.…”

“…These include first, the importance of involving relevant local stakeholders (including caregivers and local experts) in the adaptation process. The involvement of local stakeholders is critical in order to understand the local needs and context and to identify socio-cultural barriers that may affect the implementation process of the programme, and how to overcome these barriers (Dababnah, Habayeb, Bear, & Hussein, 2018; Hoekstra et al, 2018). For example, this study highlighted caregivers’ reluctance in using praise as positive reinforcement, and suggested not all caregivers may be aware of the importance of play between them and their child in supporting their child’s development.…”

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

“…Research on the needs of culturally and linguistically diverse children with autism and their families has found that minority ethnic populations are underrepresented in research studies (Centers for Disease Control and Prevention 2014; Mandell et al 2009;Perepa 2014). Current understandings of autism are thus primarily based on research conducted with white participants (Hoekstra et al 2018). As a consequence, there is little understanding of how different cultures and beliefs influence the needs of families from diverse backgrounds (Davenport et al 2018).…”