A critical realist analysis of narrative re-alignment and construction of subjective resilience in late-identifying autistic women
Student: Katrine Callander
Supervisors: Chrissie Rogers and Damian Milton, University of Kent, UK
Preface: Autistic identification in adulthood can illuminate subjective narratives. The path of life remains familiar but becomes infused with increased internal understanding and awareness. Yet it highlights the shadows travelled through and the traumas endured to comply with societal expectations. Over time, it may be possible to increase resilience to these challenges on own terms. For many, the core of identification lies in autistic acceptance, connection and relief that life-long alienation is no longer a solitary burden. As a late-diagnosed autistic woman, I also navigate this shared path.
Introduction
Autistic women are significantly more likely to receive an autism diagnosis later in life, partly due to diagnostic process focus on male autistic presentations (Begeer et al., 2013). However, less than 15% of UK autism research focus exclusively on adults (ACER, 2021) and there are significant gaps in qualitative research involving autistic women as narrators of their own subjective experience (Kirkovski et al., 2013; Ciampi 2013). This proposal builds upon the social model of autism and neurodiversity discourse in moving beyond medical notions of impairments and disorders to encourage co-production of autistic research (Milton, 2016). This includes acknowledgement of autism as “neurological variation in cognitive, affectual and sensory functioning differing from the predominant neurotype” (Rosqvist et al., 2020:17).
As a result of late identification, many autistic women have experienced extensive requirements for adjustments to neuro-majority societal expectations (Gould, 2017). This could be considered an example of resilience, in the form of adaptation to adversity (McConachie et al., 2018). However, this process is based on the imposed requirements of others and as such, can be identified as trauma response rather than subjective individual resilience (Lai and Szatmari, 2019). For many individuals who have come to understand their autistic identities later in life, there are few resources available in relation to processing the internal re-alignment of resilient identity over time and on subjective terms, connection with an autistic social identity and increasing awareness of contrast to majority culture.
Aims and Objectives
This proposal will challenge socially constructed narratives of autistic life stories through critical realism to highlight ownership of autistic agency and resilience as it develops over time after identification/diagnosis. This liminal period may increase consciousness of relationships to surety and continuities, in a conflict of temporality. The research will facilitate reflexive exploration of ways to increase individual autistic resilience, based on ownership of narrative autistic agency, social identification within the marginalised autistic community as a contrast to the surrounding majority culture, and acceptance of the changing lived reality of the individual experience.
The proposed qualitative methodology will be based on a holistic approach of inter-disciplinary research, framing autism research within sociological frameworks, while acknowledging the benefits of cultural perspectives of otherness and cross-cultural relativity from social anthropology. The aim of this reflexive, co-produced research is to move beyond pre-conceived models of the autistic adult experience and facilitate increased individual understanding of strengths, challenges and resources to improve autistic resilience, enable better advocacy for accommodations and support the construction of societal roles for neurodivergence through acceptance and equitable inclusion.
Ultimately, the research will seek to answer the following questions:
- How can a critical realist framework benefit understanding of autistic agency construction among late-identifying autistic women?
- What is the role of temporal understanding in the re-alignment of narrative autistic identity as a contrast with neuro-normative cultural expectations?
- How can this analysis benefit development of subjective autistic resilience on own terms to support internal acceptance and external demonstration of agency?
Literature Review
Qualitative autism research through critical realism
Autism has historically been researched through a predominately pathological framework and negated the lived experience (Rosqvist et al., 2020). Cognitive variation has been reviewed in terms of external functioning, resulting in exclusion of agency (Leveto, 2018). This has particularly been the case for the female autistic perspective, which has been significantly under-researched (Carpenter et al., 2019; Ciampi 2013; Gould 2011; Kirkovski et al., 2013). Recent literature notes that it is epistemologically and ethically questionable that neurodivergent personal narratives have not historically been incorporated into social scientific research (Chown et al., 2017; Robertson, 2009).
Though qualitative research in the autism field has been limited, a small body of research has aimed to integrate approaches and perspectives on sociality and cultural context (Orsini, 2012). This has included research on neurodivergent adult narratives (Bargiela et al., 2016; Grinker, 2015), including subjective rationality as well as relativism in terms of recognition of alternative forms of being and creation of meaning (Cage et al., 2018; Milton, 2016). Theories on cognitive and neurological variations have bio-medical, but also important social and cultural dimensions, encompassing inter-disciplinary potential. I argue that research without inclusion of internal subjective positioning is diffuse and not homogenous. This project will engage the complexities of autistic ‘being’ through an ethnographic recognised and acknowledged focus (Braun and Clarke, 2019).
The research is informed by critical realist conceptualisation with its framing of ontological realism and socially constructed paradigms (Fleetwood, 2014). It aims to challenge stereotypes surrounding the identification of an autistic identity in adulthood and the utilisation of critical theory in identifying bias and distortions in constructed narratives on autistic lived experience (Bhaskar et al., 2018). Hence, It aligns with constructivist viewpoints of social influence and constraints on individual subjectivity (Foucault, 1977). Considerations of critical realist perspectives will include the relevance of Latour’s (1996) Actor Network Theory in relation to the ethnographic sensibilities of the framework and moving beyond imposed categories.
Time and temporality dimensions
Late-identifying autistic people goes through the process of accommodating both their previous identity as attempting to be a member of neurotypical majority society and their post-identification autistic persona simultaneously (Runswick-Cole, 2014). This includes considering the impacts of both of these narratives in relation to experiencing the past in the present (Bloch, 1977) – potentially existing in different temporal dimensions (Gell, 1998). These perspectives are relevant to participants’ increased awareness of temporality in terms of shared symbols of commonly shared meaning and awareness of selfhood over time after autistic identification.
Hence, time and temporality are core element when considering internal acceptance and understanding of autistic identity and potential growth of an authentic autistic individual resilience. My research will challenge Durkheim’s (1912) concept of ‘social time’ and Leach’s (1976) focus on time as both cyclical and irreversible, while incorporating Maine focus on the importance of temporality in sociological theory (1987) and Husserl’s (2019) phenomenological analysis of internal and reflexive time-consciousness. Taking ownership of personal narrative agency in the form of saying ‘I’ over time and in relation to self and others, becomes increasingly important during the period of autistic identification (Stenning and Rosqvist, 2020). This includes contradictions in their own revelational narrative in conflict with surrounding culture, reminiscent of the contrast between ideology and cognition (Robertson, 2009). It aligns with an expanding definition and intersubjective feeling of the individual’s position over time as central for their deepening awareness of understanding (Munn, 1986).
Resilience and autistic identity
Resilience in autism research has been conceptualised in pathological autism perspectives of autistic children and their parents in relation to adaptation from adversity (Lai and Szatmari, 2019; Ungar, 2015). It has also been explored in relation to camouflaging of autistic traits resulting in imposed resilience (Lai and Baron-Cohen, 2015) in the format of reducing external consequences at the expense of internal repercussions (Pearson and Rose, 2021). I argue that exploration of resilience has potential for deepening understanding of autistic agency over time as a contrast to neuro-typical societal expectations.
My qualitative research will explore the details involved in addressing resilience as a dynamic concept, framed by the processes of late autistic identification (Rutter, 2012). The aim is to co-produce multi-dimensional strategies of increased resilience to strengthen awareness of human capital, such as cognitive strengths, and social capital, such as relationships, on own terms (Ungar, 2015) in the face of the adversity of autistic engagement with surrounding environments. This aligns with organisations such as the Participatory Autism Research Collective, which promotes autistic involvement in autism research (PARC, 2021). This will contribute to emerging empirical data on meaningful impact defined by autistic individuals (McConachie et al., 2018). This has potential for contributions in relation to theoretical models (Yates et al., 2015) of subjective autistic resilience into positive applied efforts.
Methodology
There has been a historic tendency to negate the subjective neurodivergent narrative in relation to methodology in autism research. As a late-diagnosed autistic woman, I have experienced the extensive change in phenomenological perception after autistic identification. I will integrate auto-ethnography in my data collection to reflexively position and review my own lived experience within that of my participants (Reed-Danahay, 1997; Okely and Callaway, 1992). This will enable considerations of biases and awareness of subjective positioning at the heart of the scientific narrative approach, in alignment with Bourdieu’s (1992) emphasis on reflexive sociology.
My reasoning for utilising qualitative ethnographic research within a field frequently researched through biomedical quantitative data, is to achieve a holistic, comprehensive understanding of the changing social and internal characteristics of the late-identifying autistic experience over time. The analysis will consider this from the perspective of a marginalised group, neglected by dominant narratives (Frankenberg, 1993) and challenge stereotypes surrounding the identification of an autistic identity in adulthood and the utilisation of critical theory in identifying bias and distortions in constructed narratives on autistic lived experience (Bhaskar et al., 2018).
I will utilise qualitative methodology such as in-depth life story interviews, long-term diary entries on subjective experience and extensive fieldnotes to ensure individual participants are key stakeholders in the research agenda (Plummer, 2001). I will conduct 20 life story interviews with women aged 25-55 who have been diagnosed as autistic within the last year, or who are currently going through the diagnostic process. This will enable me to analyse the lived experiences temporally as it changes over time and in line with acceptance of their autistic identification (DePape and Lindsay, 2016). The recruitment process will build upon that employed in my Masters research in establishing a dedicated website with full information on the project, to ensure full prior informed consent. Potential participants will be invited from female-only autistic social media groups, where I am an existing participant. Extensive fieldnotes throughout will enable analysis of comparison between the externally observed and internally felt narratives. These forms of engaged qualitative methodology provide substantiated epistemological and moral agency for participants and adds legitimacy to the research.
As part of the life story method, I will employ photo-elicitation and visual ethnography as verbal or written description of lived and sensorial experience may not be suitable communication formats for all autistic participants (Copes et al., 2018). Participants will be asked to generate images between interviews to assist with illustration of subjective agency, to explore representation, identity re-alignment and self-determined resilience (Rogers, 2020). To engage reflexively and encourage shared articulation of meanings generated from these images, I will complete the process alongside participants as part of the auto-ethnographic perspective. I will include exploration of the ethical and practical issues of incorporating visual ethnography in my research.
Digital ethnography will be incorporated to research engagement with the autistic community (Varis, 2016). Recent years, particularly during the Covid-19 pandemic, has seen an increase in online social groups and communities for autistic adults, providing important social domains for engagement and negotiation of autistic identity, with increased potential for digital ethnography (Podjed, 2021; Goralska, 2020). The methodology involved in this process will include auto-ethnographic engagement and participant observations in online social forums and focus groups, across open and female-only groups.
Ethics
Detailed assessment of ethical considerations and implications will be completed prior to any fieldwork. The project will conform to the ethical standards of the University of Kent and ESRC’s Framework for Research Ethics. It will adhere to the UK Research Integrity Office’s guidelines (2021) and Concordat to Support Research Integrity (Universities UK 2021). All participants will be presented with full prior information on the project, methodology, aims and expectations, written consent forms will be required. The project will include awareness and review of required accommodations including but not limited to, alleviating potential impact from anxiety, sensory impacts and trauma triggering terminology. These will be included in the in-depth risk assessment prior to the project commencement. No minors, elderly or people requiring guardianship will participate, due to the ethical restrictions of full prior informed consent and vulnerability.
The research will be based on participant confidentiality and anonymity, no personal details will be recorded, and participants will be allocated pseudonyms. As I will collect life stories and subjective narrative, there is potential for identifying information. I will ensure potential identifiers are amended or deleted as required. I will ensure contributors are aware that participation is entirely voluntary, and consent can be revoked at any time. Quoted research material will not be personally attributed.
Ongoing Covid-19 risk assessments will continue for as long as required. The project does not require formal permission from local or national authorities. The project will not involve illegal activities. The results will be made available to participants as a written transcript of their personal contribution with the possibility of withdrawing information, and a written summary of results to all. The data collection is expected to involve interviews, questionnaires, participant observation and literature reviews. It will not include observation of participants without their knowledge.
Overlap from Masters research
The research will be an extension of my Masters work on autistic women’s experience of connections and sensory interactions with natural environments as a refuge from navigating expectations of contrasting majority culture. The dissertation contrasted external cultural conflicts with internal identity negotiation processes and highlighted how autistic individuals engaged with natural environments in their own search for strength, acceptance and resilience. My PhD will extend the scope of this work to encompass the development of agency and resilience over time.
Timeline
| Year 1 | Literature review. expansion of connections within autistic online communities to liaise with potential fieldwork collaborators and individual participants. Further sociological methodology training |
| Year 2 | Extended fieldwork within adult autism organisations, such as UoKA, Advocacy for All and Health Unlocked. Further engagement in online groups. Conducting extensive interviews, life story narratives and general data compilation. For contextualisation, completion of participant observations and discussion forums. |
| Year 3 | Final follow-up interviews to allow for temporal analysis, data review and analysis. The final 6 months will be dedicated to writing of the thesis. |
Supervisor relevance
My primary supervisor is Professor Chrissie Rogers, Director of the Tizard Centre and Professor of Sociology at University of Kent. Professor Rogers has held a Leverhulme research fellowship, researching learning disability, mental health, and criminal justice processes from a life story perspective and is currently working on publications from this data. The particular resonance between my proposed research and that of Professor Rogers lie in the focus on qualitative research methodologies, life stories and auto-biographical reflexivity in research of autism and neurodivergence.
My secondary supervisor is Dr. Damian Milton, Lecturer in Intellectual and Developmental Disabilities at University of Kent and expertise consultant for the National Autistic Society His research is based predominantly on increasing the meaningful participation of autistic people and people with learning disabilities in the research process. The particular resonance with my proposed research lies in his work on furthering autistic involvement in autism research and auto-ethnographic perspectives. As a researcher diagnosed with Autism Spectrum Disorder, I believe in the important involvement of autistic people in research on the condition. There is also personal resonance in both being diagnosed with ASD and being parents of neurodivergent children. There is still very limited co-produced academic qualitative research and critical commentary within autism research. The expertise of my supervisory team, Dr. Chrissie Rogers and Dr. Damian Milton, will provide depth to the project and reflexively challenge my work.
Contribution
This project will significantly add to the under-researched area on qualitative voices of female neurodivergent construction of autistic resilience. It will illustrate the ambivalence and contradictions of participants’ revelational narratives in terms of the vision of themselves in conflict with their surrounding culture. This will provide ownership of agency and lived experience for late-identifying autistic women as well as increased understanding of the role of subjective historicity as a contrast to imposed pathological framing. It will build upon, and contribute to, the sociological research areas of neurodivergence, identity, disability, inclusion, agency, engagement and inter-subjectivity.
The project aims to identify structures for increased authentic autistic resilience on their own terms in relation to personal development, engagement with autistic communities and with external majority culture. As such, it provides insights for both academic research into autism and potential for enhanced support and contextualisation of the experience over time of late-identified autistic women. The detailed research into the lack of understanding the lived experience, the diagnostic process, identity re-alignment and minimal support frameworks are applicable to other exposed neurodivergent communities. Co-produced reflexive work by autistic authors, featuring participatory autistic voices, increases the potential for expanded cross-cultural considerations and comparable efficacy within neurodiversity research.
The findings of this qualitative research project will expand on the inter-disciplinary benefits of considering sociological and social anthropological frameworks in relation to historicity, temporality, cross-cultural relativity and inclusivity.
References
ACER. https://www.birmingham.ac.uk/research/perspective/autism-research-experts.aspx. Accessed 18/11/21.
Bargiela, S., Steward, R. and Mandy, W., 2016. The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of autism and developmental disorders, 46(10), pp.3281-3294.
Begeer, S., Mandell, D., Wijnker-Holmes, B., Venderbosch, S., Rem, D., Stekelenburg, F., Koot, H. M. (2013). Sex differences in the timing of identification among children and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 1151–1156.
Bhaskar, R., Danermark, B. and Price, L. (2018). Interdisciplinarity and Wellbeing: A Critical Realist General Theory of Interdisciplinarity. London and New York: Routledge.
Bloch, M., 1977. The past and the present in the present. Man, pp.278-292.
Bourdieu, P. and Wacquant, L.J., 1992. An invitation to reflexive sociology. University of Chicago press.
Braun, V. and Clarke, V., 2019. Novel insights into patients’ life-worlds: the value of qualitative research. The Lancet Psychiatry, 6(9), pp.720-721.
Cage, E., Di Monaco, J. and Newell, V., 2018. Experiences of autism acceptance and mental health in autistic adults. Journal of autism and developmental disorders, 48(2), pp.473-484.
Carpenter, B., Happé, F. and Egerton, J. eds., 2019. Girls and autism: educational, family and personal perspectives. Routledge.
Ciampi M (2013) Navigating the female Aspergian mind. Annals of Psychotherapy & Integrative Health 16(2): 34–39.
Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., Fox, K., Hickman, L. and MacGregor, D., 2017. Improving research about us, with us: a draft framework for inclusive autism research. Disability & society, 32(5), pp.720-734.
Copes, H., Tchoula, W., Brookman, F. and Ragland, J., 2018. Photo-elicitation interviews with vulnerable populations: Practical and ethical considerations. Deviant Behavior, 39(4), pp.475-494.
DePape, A.M. and Lindsay, S., 2016. Lived experiences from the perspective of individuals with autism spectrum disorder: A qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities, 31(1), pp.60-71.
Fleetwood, S. (2014). Bhaskar and critical realism. In P. Adler, P. Du Gay, G. Morgan and M. Reed (Eds.), Oxford Handbook of Sociology, Social Theory and Organisation Studies (pp. 182-219).
Gell, A., 1998. Time and social anthropology. Senri ethnological studies, 45, pp.9-24.
Góralska, M., 2020. Anthropology from home: Advice on digital ethnography for the pandemic times. Anthropology in Action, 27(1), pp.46-52.
Gould, J. (2017). Towards understanding the under-recognition of girls and women on the autism spectrum. Autism, 21, 703–705.
Grinker, R.R., 2015. Reframing the science and anthropology of autism. Culture, Medicine, and Psychiatry, 39(2), pp.345-350.
Husserl, E., 2019. The phenomenology of internal time-consciousness. Indiana University Press.
Kirkovski, M., Enticott, P.G. and Fitzgerald, P.B., 2013. A review of the role of female gender in autism spectrum disorders. Journal of autism and developmental disorders, 43(11), pp.2584-2603.
Lai, M.C. and Baron-Cohen, S., 2015. Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), pp.1013-1027.
Lai, M.C. and Szatmari, P., 2019. Resilience in autism: Research and practice prospects.
Latour, B., 1996. On actor-network theory: A few clarifications. Soziale welt, pp.369-381. Vancouver
Leach, E., 1976. Culture and communication: The logic by which symbols are connected. An introduction to the use of structuralist analysis in social anthropology. Cambridge University Press.
Maines, D.R., 1987. The significance of temporality for the development of sociological theory. The Sociological Quarterly, 28(3), pp.303-311.
McConachie, H., Mason, D., Parr, J.R., Garland, D., Wilson, C. and Rodgers, J., 2018. Enhancing the validity of a quality of life measure for autistic people. Journal of autism and developmental disorders, 48(5), pp.1596-1611.
Milton, D. and Sims, T., 2016. How is a sense of well-being and belonging constructed in the accounts of autistic adults?. Disability & Society, 31(4), pp.520-534.
Munn, N.D., 1986. The Fame of Gawa: a symbolic study of value transformation in a Massim (Papua New Guinea) society, Cambridge: Univ.
Okely, Judith, and Helen Callaway, (eds) 1992. Anthropology and Autobiography. London: Routledge.
Orsini, M. (2012). Autism, neurodiversity and the welfare state: The challenges of accommodating neurological difference. Canadian Journal of Political Science, 45(4), 805- 827.
PARC – 2021. [online] Available at: <https://www.disabled-world.com/disability/awareness/neurodiversity/> [Accessed 23 March 2021].
Plummer, K., 2001. Documents of life 2: An invitation to a critical humanism (Vol. 2). Sage.
Podjed, D., 2021. Renewal of Ethnography in the Time of the COVID-19 Crisis. Sociologija i prostor/Sociology & Space, 59(1).
Reed-Danahay, D. ed., 2021. Auto/ethnography: Rewriting the self and the social. Routledge.
Robertson, S.M., 2009. Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1).
Rogers, C., 2020. Necessary connections:‘Feelings photographs’ in criminal justice research. Methodological Innovations, 13(2), p.2059799120925255.
Rosqvist, H.B., Chown, N. and Stenning, A. eds., 2020. Neurodiversity studies: A new critical paradigm. Routledge.
Rutter, M., 2012. Resilience as a dynamic concept. Development and psychopathology, 24(2), pp.335-344.
Runswick-Cole, K. (2014). ‘Us’ and ‘them’: The limits and possibilities of a ‘politics of neurodiversity’ in neoliberal times. Disability & Society, 29(7), 1117-1129.
Stenning, A. and Rosqvist, H.B., 2021. Neurodiversity studies: mapping out possibilities of a new critical paradigm. Disability & Society, pp.1-6.
Ungar, M., 2015. Practitioner review: diagnosing childhood resilience–a systemic approach to the diagnosis of adaptation in adverse social and physical ecologies. Journal of child psychology and psychiatry, 56(1), pp.4-17.
Yates, T.M., Tyrell, F.A. and Masten, A.S., 2015. Resilience theory and the practice of positive psychology from individuals to societies. Positive psychology in practice: Promoting human flourishing in work, health, education, and everyday life, pp.773-788.
Varis, P., 2016. Digital ethnography. The Routledge handbook of language and digital communication, pp.55-68.
Naturally Connected Neurodiversity 