Autism and Culture: Shaping autism research based on experiences with the autistic communities in Mexico and the UK

Ana Laura Trigo Clapés is a PhD student in the Faculty of Education, University of Cambridge (CLAREC member)

This post was originally published at FERSA University of Cambridge Blog

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

My involvement in autism research in the last four years has taken place in England; however, my research journey in this field started in Mexico. My experience in these two countries has provided me with different and very enriching opportunities to learn from members of the respective autistic communities and shape my research accordingly. In fact, the focus of my doctoral research was originally inspired by the lessons I learned when I worked with young autistic people in Mexico. 

I collaborated in a programme that provides psycho-pedagogical support for autistic children and adolescents in which psychotherapists attempt to help them develop their own coping strategies and exercise certain cognitive skills. Though we were all psychologists and adhered to a definition of autism as a disorder, we purposely avoided only focusing on difficulties or identifying deficits. It was critical to foster a respectful environment that encouraged dialogue, and thus we focused on adjusting our interactions to be clear and friendly. This included being explicit, avoiding rhetorical questions, or learning whether eye contact was uncomfortable for them. It was important for us to get to know each other as individuals, and challenge assumptions related to explicative theories of autism; like assuming that our patients would not be able to use metaphors (which some were able to do).

In this programme, I had contact with the young people’s close family members and carers. I followed their journey learning about autism and what it meant for their children, as well as the young peoples’ process of building an autistic identity, working to highlight the positives. Sadly, this is a kind of professional support not everyone has access to. There is limited availability and access to specialised support in Mexico and, at the same time, there still exists misinformation about autism and even social stigma. In some cases, families prefer avoiding discussing an autism diagnosis and, in other cases, parents/carers are not sure who to contact to look for support. This could relate to the current lack of a clear estimate of prevalence of autism in Mexico and delayed validation of diagnostic tools for the Mexican population.  I realised how important it is for autistic individuals and their families to learn more about, rather than stigmatise, different ways of thinking and communicating, in order to understand why they experience certain difficulties in their daily lives, improve their relationships and adjust their lifestyles. 

Now, as part of my research in the UK, I decided to observe how autistic students participate in class activities with the aim of understanding how they communicate and then suggesting ways of adjusting teaching accordingly. I proposed that it is important for teachers to challenge their expectations of autistic students’ participation and assumptions of why students engage in certain behaviours, because it is easy to guess wrong or even overlook individuals’ communication attempts.

Through my UK-based work, I have learned about inspiring autism research that has been driven by activism. Impactful research groups and charities in the UK are interested in conducting research in collaboration with the autism community with the aim of better reflecting their experiences and developing research that matters for the community. This recent trend in research and my conversations with fellow PhD students at the Faculty of Education have helped me continue to develop my understanding of autism. My vision is now more in line with the neurodiversity approach, which conceptualises autism as a naturally occurring difference in the development of the brain (Silberman, 2015). The approach recognises autism both as a difference and a disability, acknowledging impairments and barriers imposed by society that hinder autistic individuals’ participation (Bottema-Beutel et al., 2020).

I value how these experiences in the UK have led me to take a clearer stance related to my research. I believe that an important goal is to find ways of creating equitable opportunities for autistic individuals to participate and contribute to their communities (e.g., in a school), hopefully promoting a sense of belonging. This requires us to be open to different forms of understanding and communicating, to listen and interact with the autistic community and to question the theories and definitions we have long adhered to. It is also necessary to consider how these equitable opportunities to participate can be developed in different contexts with different surrounding limitations and belief systems. Engaging in dialogue with autistic individuals, practitioners and researchers from diverse contexts can hopefully help identify the aspects that should be taken into consideration in the future creation of a more comprehensive knowledge.

Featured image by Gordon Johnson from Pixabay.

References:
Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2020). Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood, 00(00), 1–12. https://doi.org/10.1089/aut.2020.0014
Silberman, S. (2016). Neurotribes : the legacy of autism and how to think smarter about people who think differently. London: Allen and Unwin.

Note from the author: An example of research that aims to promote social interactions that are adapted to autistic individuals’ characteristics and preferences: 

Ambassadors for autism: Adapting services for autistic service users. A research project that was conducted in the Centre for Applied Autism Research at the University of Bath (UK) aimed to create guidance for professional groups so they can better support autistic people. Service providers took part in a workshop to develop evidence-based adaptations to improve their communication with autistic people. https://www.bath.ac.uk/announcements/ambassadors-for-autism-adapting-services-for-autistic-service-users/