This piece is part of the Autism and Culture series, in which researchers at the Faculty of Education carrying out studies relating to autism across the globe reflect on new challenges and exciting opportunities. This series was published in recognition of World Autism Awareness Week 2021, and you can view the rest of the series here: https://fersacambridge.com/?s=Autism+and+Culture
Working with young children and their families in the UK has broadened my understanding of autism research cross culturally, highlighting many challenges within the realms of diagnosis and support. This is due to a great deal of our understanding and resources being western-focused. Investigating autism globally is key to gaining a better understanding of how this neurodevelopmental disorder looks across cultures.
Challenges often faced within early years education are around understanding cultural differences with respect to recognising autistic traits and diagnoses. Behaviours that may be seen as ‘atypical’ for one child may be seen as ‘typical’ for another when viewed within the scope of their own cultural context. Using eye contact as an example; in most western families, this is seen as an important part of social communication and children are encouraged to make eye contact with others. However, in some communities and cultures, direct eye contact with adults is viewed as a sign of disrespect and children are taught not to do this. Where recognition and diagnosis of autism relies heavily on observed behaviours, this can cause problems when traits that are considered to be autistic in western culture are typical or expected in other cultures.
Unique cultural influences can impact how autism is understood and recognized in different communities and how families view autism may affect their approach to support interventions. Improved understanding of cultural differences could prevent misconceptions around autism, and create supportive and informative resources for children, families, and educators. When the classifications of autistic features are not globally consistent, there is a risk that diagnostic tools and interventions may also be inconsistent with those they intend to help. It’s important to keep in mind that diagnostic and screening measures as well as interventions and resources should reflect autism in all cultures, not just western society. There have been several studies exploring the adaptation of screening and diagnostic tools for use in different cultures, however most focus on methodological adaptations as opposed to cultural and contextual factors themselves (Leeuw, Happé, Hoekstra, 2020). More research is required to fully understand the impact of these factors for recognition and diagnosis of autism.
Ways in which different cultures interact and communicate are unique; western norms and values may not be broadly transferable to different parts of the world. Working with families and autistic individuals from other cultures will help shape perspectives and give researchers better insight into autism cross-culturally. This will allow for support and resources that are both accessible and relevant for families and educators. It is both exciting and a privilege to have the opportunity to contribute to the future direction of autism research over the next few years.
de Leeuw, A., Happé, F., & Hoekstra, R.A. (2020). A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Research, 13, 1029-1050.
Bethany Jones is a research assistant in the Faculty of Education at Cambridge University and the Institute of Cognitive Neuroscience at University College London.