Protected: 4. From Lived Experience to Theoretical Framework: Perspectives on Neurodiversity from the Global South

Panellists: Chunye Chai, Marie Adrienne Robles Manalili, Paras Arora
Chair: Sanika Sardesai

Chunye Chai | Uncovering the lived experiences of autistic women with photo-elicitation IPA: Insights from Chinese autistic voices 

Abstract: In recent years, an increased number of populations have been diagnosed as autistic in adulthood while autism is often identified and diagnosed in childhood. Due to potential gender differences in autistic traits, there is a growing body of literature attempting to understand the experience of autistic females. However, only a small part of studies have been conducted within the Global South, particularly, no known empirical research has addressed the experiences of Chinese autistic persons. This qualitative study set out to explore the lived experiences of Chinese late-diagnosed (i.e., who receive a clinical diagnosis in adulthood) autistic women and how they understand their life differences before and after the diagnosis. Photo-elicitation in-depth interviews were conducted online with five participants, and the data was analysed using interpretative phenomenological analysis (IPA). Five themes were identified, namely 1) Living Tough on the Spectrum Undiagnosed; 2) Post-diagnosis: Rethinking of Selfhood; 3) Tangling in the Complex Socio-cultural World; 4) Picturing the Future: “Diagnosis confirmed - so what?”; 5) What Happened to Me: An Enquiry to Epistemology of Autism. Results demonstrated that Chinese late-diagnosed women could experience long-term inner struggles with self-identities, the world around them, and coping tough with social life while living on the spectrum unknowingly. A confirmed diagnosis was commonly experienced as an illuminating impact on their self-understanding, yet they recognised the dilemma that the unchanging post-diagnosis societal perceptions create as a barrier to achieving full self-acceptance. The findings also emphasise the unique Chinese socio-cultural environment such as Confucianism may pose potential pressure on autistic women. These findings add richness to the understanding of autism by centring the Chinese perspective, which may have implications on designing better support for the Chinese autistic community, and inform future research that could have a more in-depth examination of how traditional cultures such as Confucianism associated with stigma against Chinese autistic women. 

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Marie Adrienne Robles Manalili | Saridiwa: A Decolonial Theory for Exploring Pagkakaiba, Pakikipagkapwa, and Neurodiversity 

Abstract: Saridiwa is a portmanteau of two Tagalog words: sari (i.e., varied, diverse, different, or multitudes) and diwa (i.e., idea, sense, meaning, thought, consciousness, spirit, soul, mind, purpose, or essence of an experience). In my earlier work (Manalili, in press), I coined Saridiwa as a way of expressing my hope to locate indigenous concepts that may relate to what the Anglosphere calls ‘neurodiversity’. Here, I attempt to develop Saridiwa as a decolonial theory that may help me better understand how I experience neurodivergence in Katagalugan, Philippines. Drawing from my experiences as a Tagalog woman, I analyze how being autistic and kinetic is a form of pagkakaiba (i.e., difference/s) in Tagalog culture. In doing so, I invoke a core Tagalog value and conviction (Enriquez, 1986): pakikipagkapwa (i.e., solidarity with the ‘self’ and ‘others’ in the face of adversity and injustice). The following questions will guide me in developing the kaisipan (i.e., tenets) of Saridiwa as a decolonial theory. 

1. What are the ways in which Tagalog people perceive someone as iba/kakaiba (i.e., different)? 

2. Are there perceptions of pagkakaiba that are tainted by racism, sexism, and ableism? 

3. If racist, gender-biased, and ableist perceptions of pagkakaiba exist, what is the role of Katagalugan’s colonizers in the development of such perceptions? 

4. Why do many Tagalog people defer to biomedical conceptualizations of, for example, autism and ADHD when they perceive someone as kakaiba? 

5. When Tagalog people decide that a person is kakaiba, why does it appear that they no longer see the person as kapwa (i.e., fellow human)? 

6. What are the ways in which pakikipagkapwa is violated when Tagalog people judge a person as (kaka)iba? 

7. Is it possible to reclaim pagkakaiba away from its racist, gender-biased, and ableist connotations? How? 

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Paras Arora | Exposure to Neurodivergence: Revisiting the Familial Genres of Connection to Neurodivergence in Urban India 

Abstract: Exposure indexes fears of undue disclosure and contamination in relation to strange others and in the midst of unfamiliar publics. However, exposure is also invoked as a horizon of aspiration, upward social mobility, and self-making beyond fate in India. To yearn for exposure, then, is to bemoan the lack of access to opportunities, connections, and networks that may not exist in one’s reach but nonetheless potentiate novel modes of striving. In this brief paper, I trace these multifarious meanings of exposure across the neurodiverse households of urban India. Far from inciting only the anxiety of being stigmatized into isolation, exposure to neurodivergence is proactively sought, graciously acknowledged, and strategically enacted across familial relations. I argue that by foregrounding the affects, narratives, and aspirations that are tied to exposure in relations lived across cognitive and embodied differences, we might discover genres of narrating and sustaining connections to neurodivergence that aren’t motivated by pathos. I reconstruct these genres based on ethnographic fieldwork across advocacy initiatives, public awareness events, familial homes, and training programs in urban India. Exposure, therefore, holds the possibility of enriching our understanding of how neurodivergence comes to matter in intimate and public settings through modes that exceed unmasking. 

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Speaker Bios:

Chunye Chai: Chunye did her MSc in Psychology of Education at the University of Bristol exploring the lived experience of Chinese late-diagnosed autistic women. Born and grew up in China, she didn’t fully discover her neurodivergent brain until studying in the UK. She is determined to do research with and for the autistic community, particularly for marginalised people like her. Her research interests include autism, mental health, and SEND and she is currently doing a PGCE in Primary teaching specialising in SEND. 

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Marie Adrienne R. Manalili: Marie Adrienne R. Manalili, MSc, RSLP (siya/she/they) is a neurodivergent Tagalog woman, an experienced languaging therapist, and an independent researcher from Katagalugan, Philippines. She earned her Bachelor's degree from the University of the Philippines Manila in 2012, and her Master's degree as a Chevening scholar from University College London and City, University of London in 2022. Drawing on her contexts and material conditions in Katagalugan, she explores indigenous concepts, how they might relate to the neurodiversity paradigm, and how she can honor them towards helping dismantle the colonial systems we still live in. 

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Paras Arora: Paras Arora (they/them/theirs) is an anthropologist, artist, and writer based dually in Delhi, India and Stanford, USA. A Ph.D. Candidate in socio-cultural and medical anthropology at Stanford University, they are ethnographically exploring the forms of rehabilitation, aspiration, and exhaustion that relationally emerge around the ageing of neurodivergent individuals in India. As a neurodivergent and queer researcher, Paras is particularly committed in using multimodal ethnographic methods and outputs to foreground neuro-queer conceptions of family and futurity. In light of these commitments, Paras was one of the first scholars from India to be awarded with the Dissertation Innovation Fellowship Award by the American Council for Learned Societies and Mellon Foundation.