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
Researching autism and play in the South African context while studying at the University of Cambridge, a Western institution, is a beautifully complex endeavour. It requires constant shifting of perspectives and navigating world views. It is a humbling experience that necessitates continuous researcher reflexivity. Being born and raised in South Africa and living in this multicultural, multilingual country for over 29 years gives me in-depth insight into its culture as well as the enduring consequences of the Apartheid regime. Yet, I also have different identities. For example, I am also a German citizen. My schooling and upbringing were mostly aligned with the German and Western cultures. From early on, I had to navigate different worlds.
This is a challenge for two reasons: Firstly, I have to be constantly aware of my own assumptions. Secondly, the autism research landscape in South Africa is still scarce, making it sometimes feel like looking for missing puzzle pieces. Although there are currently no studies reporting on the autism prevalence in South Africa (Ramseur II et al., 2019), a search of a database tracking school children in the Western Cape (Pillay et al., 2020) found that from a population of over 1.1 million children who are formally enrolled in school in the province, only 940 children with an autism spectrum diagnosis were identified, representing a rate of 0.08%. The global prevalence of autism is estimated at 1%-2% of the population (APA, 2013), suggesting that the number of autistic individuals in South Africa may be under-represented. Though the Western Cape is a better-equipped province in South Africa, it is not resourced enough to meet the variety of linguistic and cultural needs of its people (Pillay et al., 2020).
Although most children on the autism spectrum live in resource-limited environments, almost all our knowledge around autism is shaped by high-income countries (Franz et al., 2017). Many early intervention and support models for children on the autism spectrum are based on play, yet most research around the concept of ‘play’ is also based on a Western, high-income context. Importantly, there can be cross-cultural differences in play partners and play objects, with some cultures showing little playfulness between adults and children that is not seen as atypical (Ember, & Cunnar, 2015). Challenges of researching autism and play in South African low-income settings are further linked to inadequate referral pathways to early childhood intervention services (Schlebusch et al., 2020) which are often based on Western understanding of play and family routines (Ramseur II et al., 2018). Furthermore, poverty limits access to toy materials that are often used in Western early autism interventions (Lehohla, 2017).
The dominance of Western scientific thinking is not only disputed by the autistic community, but also by indigenous people (de Jaegher, 2020). When confronted with these challenges and being embedded in a UK institution, I often think about all the knowledge and skills that I am learning at the University of Cambridge and feel compelled to intervene or adapt a playful autism intervention to fit the South African cultural context. However, I am reminded by the words of Tuhiwai Smith (2012) that research needs not only to be culturally sensitive, as this is still fundamentally a Western worldview, it also needs to be culturally safe (e.g. by actively involving the South African autistic community into your research). We first need to listen. We still know so little and it is through meaningful relationships that knowledge can be created. Or in the words of de Jaegher (2020): The knower has to let the known be in order to know.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.
De Jaegher, H. (2020, October 7). Seeing and inviting participation in autistic interactions. https://doi.org/10.31219/osf.io/bhjfc (PRE-PRINT)
Ember, C. R., & Cunnar, C. M. (2015). Children’s play and work: The relevance of cross-cultural ethnographic research for archaeologists. Childhood in the Past, 8: 87-103.
Franz, L., Chambers, N., von Isenburg, M., & de Vries, P. J. (2017). Autism Spectrum Disorder in Sub-Saharan Africa: A Comprehensive Scoping Review. Autism Res, 10, 723–749. https://doi10.1002/aur.1766
Guler, J., de Vries, P., Seris, N., Shabalala, N., & Franz, L. (2018). The importance of context in early autism intervention: A qualitative South African study. Autism, 22(8), 1005-1017. DOI: 10.1177/1362361317716604
Lehohla, P. (2017). Poverty trends in South Africa: An examination of absolute poverty between 2006 and 2015. Pretoria, South Africa: Statistics South Africa.
Pillay, S., Duncan, M., & de Vries, P. J. (2020). Autism in the Western Cape province of South Africa: Rates, socio-demographics, disability and educational characteristics in one million school children. Autism, 1-14. https://doi.org/10.1177/1362361320978042
Ramseur, K 2nd., de Vries. P. J., Guler, J., Shabalala. N., Series, N., & Franz, L. (2019). Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa. Pediatr Med, 2(6). doi: 10.21037/pm.2019.03.04
Schlebusch, L., Chambers, N. J., Dawson-Squibb, J. J., Harty, M., Franz, L., & de Vries, P. J. (2020). Challenges and opportunities of implementing early interventions for autism spectrum disorders in resource-limited settings: A South African example. In M. Hodes, S. Shur-Fen Gau, & P. J. de Vries (Eds.), Starting at the beginning: Laying the foundation for lifelong mental health (pp. 99–132). London: Elsevier, Academic Press. (PRE-PRINT)
Silberman, S. (2015). Neurotribes : the legacy of autism and the future of neurodiversity New York: Avery, an imprint of Penguin Random House.Tuhiwai Smith, L. (2012). Decolonising Methodologies: Research and Indigenous People (2nd ed.). Zed Books Ltd.
Stephanie Nowack is a psychologist and PhD researcher at the Faculty of Education exploring play and autism in South African low-income settings.