Conference Agenda

Autism is a frequently articulated category in the current debate on inclusive education, in inclusion research as in school practice. Not only did it rise to become a buzz-word in the discourse around difference, it also hints at fundamental mechanisms of inclusion and exclusion in educational contexts. For example, it reveals a tension between identification, diagnosis and needs-based support on the one hand – and a marketized autism regime on the other, which requires a deficit-based production of difference first to then introduce the marker 'autism' as a legitimacy figure to initiate intervention programs (Broderick & Roscigno, 2022; Runswick-Cole, 2014). However, the extent to which the category ‘autism spectrum’ and its contextualizing practices are involved in processes of inclusion and exclusion is an empirical question. Surprisingly, there is limited discourse on methodological issues in the context of inclusion-oriented autism research so far. In light of the fact that autism is defined differently and consequently captured differently in empirical studies, we see the need to discuss methodological issues related to autism studies.

To do so, we draw on perspectives from the Critical Autism Studies (e.g., Davidson & Orsini, 2013), which move away from essentialist conceptions of autism (Begon & Billington, 2019). Against this backdrop, we ask how methodological approaches should be constituted that can empirically capture the production and processing of autism spectrum on the one hand, and the (marginalized) voices on the other. Hence, the focus is on methodological questions such as how to deal with categories, who the relevant actors are, and how contextual (and cultural) settings can be taken into account in the research.

The symposium intends to initiate an international and at the same time methodological discussion on autism and autism research. For this purpose, the symposium is organized and structured in such a way that first, in an introductory paper, basic and traditional methodological questions of autism studies will be challenged and discussed. Based on this, in the second and third paper alternative forms of analyzing autism and their practice will be presented along exemplary methods. Three different country contexts are dealt with: While the first paper focuses on UK-based Anglo-American discourses, the following papers will present empirical examples from the German-speaking context and from the Ukraine.

The overall aim of the symposium is to challenge existing notions and approaches to autism research and to point out potential academic injustice. In doing so, we will distance ourselves from understandings that conceptualize autism as a purely person-related characteristic - and accordingly research it in this simplicity or assume that a direct comparison is possible. Rather, we see autism as a situationally embedded and complex phenomenon, which requires complex methodological approaches. These will be presented in this symposium as examples to create first approaches to necessary international comparisons and to stimulate discussions. Furthermore, the methodological reflections on empirical research on autism suggest that inclusion and exclusion in educational settings cannot be considered without an analytical view of the powerful (national, cultural, organizational) context and their impact on the students' subjectivity process (Pluquailec, 2018).

In recent years, there has been growing criticism of the way in which much autism research has been conducted and, of its epistemological integrity. Knowledge about autism is usually generat-ed from an external position; “expertise and knowledge production are situated in the hands of the, usually, neurotypical professional, clinician and researcher, with autistic subjectivity being marginalised or dismissed.” (Moore, 2020: 42). Contemporary orthodoxy of theorising autism is predicated on notions of deficit and lack. In both the Diagnostic and Statistical Manual (DSM-5) and International Classifications of Diseases (ICD-11) autism is characterised as a condition typified by persistent deficits in reciprocal interac-tion and communicative behaviours. This construction of autism as a deficit of language and in-teraction leads to the delegitimization of autistic knowledge. Once positioned as incapable with regards to social communication and interaction, all autistic utterances become “suspect on the basis of… [their] very being” (Yergeau, 2016: 89) and autistic knowledge production based on subjective experience is dismissed as uncredible. Positioned as unknowing, autistic people are denied epistemic agency. Meanwhile, the dominant autism narrative of lack and deficit continues to perpetuate its epistemic violence, “whereby our [autistic people’s] status as knowers, interpret-ers, and providers of information, is unduly diminished or stifled in a way that undermines the agent's agency and dignity” (Chapman & Carel, 2021: 1) Epistemic injustice is compounded when the category of autism intersects with the category of childhood. Developmentalism positions children as ontologically different from adults and, in edu-cation, they are observed, assessed, and evaluated against pre-determined ‘Ages and Stages’ standards of development (Burman, 1994, 2017; Walkerdine, 1988). In much the same way that neurotypicals claim the authority to construct knowledge about autistic people, so too do adults claim the authority to speak about and for children. This paper will consider the claims much autism research in the area of education perpetuates epistemic violence against autistic children and it will suggest ways in which we can make an epistemological shift towards acknowledging autistic children as epistemologically agentic, with the “capacity for an individual to produce, transmit and use knowledge” (Catala, Faucher & Poirer, 2021: 9015) It will argue that, in order for autism research to have epistemological integrity it must include autistic voices and lived experiences and move to a collaborative way of doing research with, rather than on autistics.

Burman E (1994) Development phallacies: Psychology, gender and childhood. Agenda 22: 11–17. Burman E (2017) Deconstructing Developmental Psychology. 3rd ed. London: Routledge Catala, A., Faucher, L & Poirer, P. (2021) Autism, epistemic injustice, and epistemic disablement: a relational account of epistemic agency Synthese (2021) 199:9013–9039 https://doi.org/10.1007/s11229-021-03192-7 Walkerdine V (1988) The Mastery of Reason: Cognitive Development and the Production of Ra-tionality. London: Routledge Yergeau, M. (2016) Occupying Autism: Rhetoric, Involuntarity, and the Meaning of Autistic Lives, In: Block P., Kasnitz D., Nishida A., Pollard N. (eds) Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-9984-3_6 83-95

Focusing developments on a macro-level Maynard and Turowetz (2019: 90) emphasize “social, political, and cultural forces that have shaped and transformed autism, especially in the last thirty years, when its prevalence has risen dramatically”. Similarly, outlining an “Autism Industrial Complex” Broderick and Roscigno (2022: 85) expose “interlocking strands of social policy, busi-ness, education, and medicine”. However, these ‘interlocking strands’ resp. the structural cou-plings seem to be the missing link as even in (educational) science and pedagogy there is a strong concentration on the (inner life of) autistic persons – while its surroundings are rarely re-garded. Considering the observations on complexity and linkage cited above, isolated considerations of autism are challenged – and for empirical research designs the question of how this complexity can be engaged arises. The paper presents and discusses the Situational Analysis (SA) following Clarke (2018) as a possibility to pursue this target. Bringing a postmodern turn into the Grounded Theory Methodology, Clarke argues that post-modernity itself is no consistent system of convic-tions and assumptions, but rather a continuous linking of possibilities. Consequently, she re-nounces to methodological developments which focus on the ‘voice of the individual’ – employing for example autoethnography or biographical studies. Clarke (2018) instead devotes to the ‘situat-ing of interpretations’ and orients her methodical approach to Strauss (1978) conceptualization of Social Worlds: These find themselves in constant negotiations which take place in so-called Are-nas. The Situational Analysis therefore aims to draw an ideally complete picture of these Arenas by using mapping techniques. Mapping an ‘Autism Arena’ in its details – and in a second step undertake cross-cultural compari-sons – seems to be of special importance, since in the field of educational practice there e.g., is a loud call for medical and psychological knowledge and biographical views play a huge role in pedagogical advice literature (Köpfer, Papke & Zobel, 2021). These dominant interpretations im-pede a view on the complexity of the situation – its negotiations and structural couplings. The paper therefore shows the first results of a situational analysis conducted in the southwest of Germany within which interviews are carried not only with diagnosed pupils and parents of these but also with representatives of the education authority, of the medical resp. psychiatric services as well as the social services providing school assistance.

Broderick, A. A. & Roscigno, R. (2021). Autism, Inc.: The Autism Industrial Complex. Journal of Disability Studies in Education, 2(1), 77-101. Clarke, A. E. (2018). Situational analysis: grounded theory after the postmodern turn (2. ed.). London: Sage. Köpfer, A., Papke, K. & Zobel, Y. (2021). Situationsanalyse Autismus – empirische Perspektivierungen zwischen Ratgeberliteratur und pädagogischem Handeln [Situation Analysis Autism - empirical perspectives between advice literature and pedagogical practice]. Inklusion online, 15(1), https://www.inklusion-online.net/index.php/inklusion-online/article/view/592 Maynard, D. W. & Turowetz, J. (2019). Doing Abstraction: Autism, Diagnosis, and Social Theory. Sociological theory, 37(1), 89-116. Strauss, A. L. (1978). A Social World Perspective. Studies in Symbolic Interaction, 1, 119-128.

This paper will present reflections upon the use of photo-elicitation as a method for capturing the day-to-day lives of families of disabled children in Ukraine at a time of conflict. In recent years, the Ukrainian government has committed to transforming the national care system for children as outlined in The National Strategy of Reforming the System of Institutional Care and Upbringing of Children (2017-2026). However, due to uncertainty in times of war, responses to this strategy have changed and the absence of consistent and accessible support for families of disabled chil-dren has led to a growing network of self-help and advocacy groups, established and run by par-ents. Many of these groups are supported by Disability Rights International (Ukraine), a human rights advocacy organization dedicated to the protection and full community inclusion of children and adults with disabilities. Working within the UKRI/unicef framework on Ethical Research in Fragile and Conflict-Affected Contexts (2021), a photo-elicitation project was designed between researchers at Edge Hill Uni-versity and the Director of the Ukraine Rapid Response team of Disability Rights International with a view to capturing the lived experiences of the families of children with disabilities. Whilst questionnaire-based research has been undertaken with the parents of children with disabilities in Ukraine (Telna, et al., 2021), this methodology was selected to be more accessible for those par-ticipating in the research, and those engaging with the research outputs. In this way, seeking out the way in which meaning is co-constructed using visual representations, discoveries can be made about how images ‘embody and enfold people into particular ideologies’ (Stockall, 2013: 31). An additional value of using a photograph is that it can prick the conscience of the viewer, asking them to reflect on what they think and do. When analysing images, Barthes (1980, 1984) draws our attention to conceptualisations of studium (the element that creates interest in a photographic image) and punctum (the element that jumps out at the viewer from within a photograph). These concepts will be discussed in this presentation.

Barthes, R. (1980) Camera Lucida: Reflections on Photography. Translated by Richard Howard. New York: Hill and Wang. Barthes, R. (1984) Camera Lucida. London: Harper Collins. Stockall, N. (2013) Photo-elicitation and Visual Semiotics: A Unique Methodology for Studying Inclusion for Children with Disabilities. International Journal of Inclusive Education, 17 (3):310–328. UKRI/unicef (2021) Ethical research in fragile and conflict-affected contexts. Available at: UKRI-161121-Ethical-Research-in-Fragile-and-Conflict-Affected-Contexts-Guidelines-for-Applicants.pdf Telna, O., Klopota, Y., Klopota, O. and Okolovych, O. (2021) Inclusive Education in Ukraine: par-ents of Children with Disabilities Perspective. The New Educational Review Vol. 64 pp. 225-235