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
Cultural divides in approaches to understanding autism create barriers to research and practice. As well as different faith or national cultures, in autism education research we also need to consider the tensions between the language and conceptualisation of autism in different contexts. In medical contexts, focusing on diagnosis or therapeutic interventions, autism is framed as a disorder or condition to be ‘treated’. The alternative language of neurodiversity, more commonly found in educational and community settings, frames autism as a difference to be respected and celebrated.
These cultural divides are brought most sharply into focus in relation to ABA (applied behavioural analysis) therapy. ABA is a standard therapy for many across the world that focuses on addressing specific behaviours through positive reinforcement. However, in the UK and Europe it is widely considered inappropriate and unacceptable due to an emphasis on changing behaviour to better ‘fit in’ with non-austitic peers. When the language of the conversation around autism has the potential to cause offence and harm, how do we ensure that we are not adding to this harm with our research or, conversely, limiting our research conversations and thereby maintaining these divides?
In the field of educational research, bridging divides often starts with inclusion; both in terms of educational inclusion and inclusive language. Educational inclusion can best be understood by looking at the schools where inclusion lies at the heart of everything the school does as a community, from the curriculum design to everyday conversations between teachers and students. As Chair of Governors for The Cavendish School, a new school for children with autism near Cambridge, I’ve worked closely with the team from one of the most inclusive schools in the UK, Impington Village College (IVC). IVC is a mainstream secondary school that welcomes pupils with a wide range of needs, offering the flexibility and individualised support needed to thrive and succeed. At IVC, young people are encouraged to recognise and celebrate what makes them different and, as they prepare to move on as adults, to self-advocate with confidence.
In my role as Chair, I have advised on all aspects of the design of The Cavendish School, drawing on the experience of colleagues in the Faculty of Education, the DRC and my professional and personal networks. Throughout the process, the inclusive values and practice of IVC have guided our navigation of the complexities and diversity of autism education. If The Cavendish School is to innovate and lead in autism education, we need to reach across cultural divides to explore a diversity of ideas. But at the same time, we need to stay connected to our core inclusion values of respect for difference and support for individuals’ needs.
Extending this respect to the way we talk about and understand autism frames autism as a difference, not a disorder – to be understood and valued, not ‘treated’. Where this poses a particular challenge in our global conversation around autism research is in contexts that directly challenge our core values of inclusion, in studies and educational practices, including ABA, that focus on changing behaviours of autistic children and young people to better ‘fit in’ or define behaviours in terms of how the child is perceived by or affects others. However, avoiding difficult conversations diminishes both practice and research. So, how do we engage with research from contexts where inclusion is defined differently?
One answer is to engage directly in conversation with other researchers and practitioners who are reflecting on similar issues in different contexts. In my role with The Cavendish School, these conversations are captured in the form of short video interviews shared on the school’s website. In a recent interview with Dr Prithvi Perepa, we discussed the responsibility that we all have as researchers and practitioners to consider the implications of the cultural assumptions that underpin our ideas of autism; from assumptions of ‘normality’ against which difference is defined, to expectations around family roles and preferences for accessing support.
These conversations have also heavily influenced the core aims and research questions of my own research into the experience of engagement with learning activities of autistic students: listening without judgement and exploring both common ground and divergence with curiosity and respect. By framing the aims of my study as deepening our understanding of autistic students’ educational experience, I hope to learn from contexts that may define inclusion for autistic students differently.
My research and practice are immeasurably enriched by conversations within the Faculty of Education community itself due to the sheer diversity of our research community – bringing a wealth of experience of diverse cultural and geographical contexts as well as different professional and philosophical perspectives. This diversity offers exciting opportunities to extend the boundaries of my own work, but also challenges us to develop shared meaning and clarity in such a complex field.
Julie Bailey is a former teacher, now PhD student at the Education Faculty, specialist learning mentor for the University of Cambridge’s Disability Resource Centre and Chair of Governors for The Cavendish School.