Swedish/UK research dialogue on critical approaches to autism

Dr Lindsay O’Dell
Open University
SMALL GROUP PROJECT: SEPTEMBER 2016 – AUGUST 2017

The Research Idea

The approach taken in this project develops a view that ‘autism’ is something that is located within specific cultural and historical contexts rather than a medical ‘fact’ that is unchanged across contexts. This, critical approach to autism, is a newly emerging field of academic enquiry as well as having applications into everyday life. Individual’s narratives/stories of themselves, cultural expressions such as art and literature, legal texts, scientific texts, health manuals, autobiographies, newspapers, magazines, political activism and interviews, etc. as well as within cultural understandings of identity, cognitive capacity, etc. all place autism in particular ways in different cultural contexts. The project would enable academics from the UK and Sweden to engage in a series of meetings and dialogues to explore how autism is experienced, acted upon and understood within and across their cultural contexts.
Dr Lindsay O’Dell (the Open University, UK) and Associate Professor Hanna Bertilsdotter Rosqvist (Umea University, Sweden) would visit each other to refine conceptual tools for a nuanced understanding of comparison across Swedish and British contexts. The conceptual frame to be developed is intercontextual ie it does not seek to offer, or assume, a ‘cross cultural’ perspective on autism; neither does it offer, or suggest, that autism is a universal diagnostic or experiential truth understood similarly across cultural contexts. Rather, the vantage points of the academics in the UK and Sweden provide different cultural contexts within which to examine the construction of ‘autism’ as discursively produced with material consequences.

Background

Public discourse surrounding autism has had increased visibility over the past decade. This has been articulated differently across cultural contexts; for example in Sweden the focus has been on independent living and lifestyle for adults with autism, whereas in the UK the focus has been on supporting children through educational and clinical practice. The emerging field of critical autism studies challenges dominant understandings of autism as a neurological deficit, instead focusing on autism as neurological difference; an identity that is discursively produced within specific sociocultural contexts. The two applicants have been leading an international network that is developing this approach (funded 2014-16 by the Leverhulme Trust, UK).
Within academia the term “critical autism studies” was coined in 2010 by Orsini and Davidson following a workshop in Canada that culminated in their co-edited collection, Worlds of Autism: Across the spectrum of neurological difference (2013). At the time, the exact contours of this emerging field were far from established, but they did identify elements of an approach, on which this project builds, namely a “commitment to develop new analytical frameworks using inclusive and non-reductive methodological and theoretical approaches to study the nature and culture of autism. The interdisciplinary (particularly social sciences and humanities) research required demands sensitivity to the kaleidoscopic complexity of this highly individualised, relational (dis)order.” (Orsini & Davidson, 2013, p 12). The group were predominantly from the American continent with little representation from European scholars (with the exception of O’Dell who published a chapter in the collection).

The Focus

The increased visibility of autism as a diagnostic category, and of people with autism, over the past ten years has led to a change, in some arenas, from viewing autism as a deficit and a move to acknowledging skills and strengths of people with autism. In the UK and in Sweden this has taken various forms such as autobiographies, blogs, TV shows and political campaigning by charities and advocacy groups.
The project would enable the two applicants to work in dialogue to develop the conceptual frame of intercontextuality for comparing across two specific European contexts in ways which do not assume either difference or similarity across each setting. In developing the concept of intercontextuality the project would include a reciprocal visit between the UK and Sweden in which there are opportunities for in-depth observation of the cultural context as manifested through public discourse, the media, charity campaigns etc. and discussion with a range of stakeholders, including adults with autism. By doing so we will explore non-traditional ways of working with people with autism in research in line with the critical autism studies framework. This would enable a nuanced and detailed theoretical treatment of comparative observations between the two contexts.

Theoretical Novelty

The field of critical autism studies is becoming more established in research communities internationally, as well as in some public discourse. However, there has been very little consideration of how this approach translates across different cultural settings. Hence this project aims to work on the conceptual frame for comparing across two specific contexts to further refine theoretical concepts that underpin the approach. The applicants’ joint work to date has begun to develop a critical approach to understanding autism, conceptualising it as an identity and as a discursive product, rather than as a medical diagnostic category. This approach, whilst becoming more recognised, is still in its earliest stages of development as an international research field.
The applicants have worked together over a number of years developing a perspective on critical approaches to autism and more broadly on the concept of ‘different childhoods/adulthoods’. This approach draws on theoretical insights from critical developmental psychology (eg Burman, 2007) and critical disability studies (Goodley, 2010).
The concept of intercontextuality offers a way of comparing across Swedish and UK contexts in ways that do not assume difference or sameness in ways in which autism is understood, experienced and acted upon in the two countries. The approach will be refined within the dialogues undertaken for the project, and formulate new theoretical questions to research on autism within social sciences, namely how how knowledge about autism is produced and shaped within specific cultural contexts and may travel between them.

Methodology

The emerging field of critical autism studies requires an interdisciplinary approach. In developing the field through this project, O’Dell (who has a background in psychology) and Bertilsdotter Rosqvist (who has a background in sociology) bring together their disciplinary expertise to establish dialogue across these disciplinary boundaries. The applicants have a successful track record of working together over the past 5 years but have only met a few times in person.
The project will involve dialogue in which the applicants will share information about the ways in which autism is considered in the media, advocacy organisations and practice within their contexts. The team will also produce a small dataset from a focus group in the UK and in Sweden. In each visit the project partners will undertake a focus group to discuss ideas for working with people with autism as collaborators in the research process. Both focus groups will be audio-recorded and transcribed, additionally the Swedish focus group will be translated into English. The transcripts will be analysed thematically (Braun and Clarke, 2006) and key themes across and between the two settings will be examined. Data from the focus group alongside information shared by the team will enable an exploration of intercontextual knowledge about autism. The aim is not to produce a large scale empirical project but to refine conceptual tools for comparison across contexts and to scope areas for possible future empirical study.

Work Plan

The project would consist of 2 visits of 5 working days, one for Hanna Bertilsdotter Rosqvist to visit the UK and one for Lindsay O’Dell to visit Sweden and at least one virtual meeting.

Project start, January 2016

UK visit, February 2016 activities:
• Dialogue between Bertilsdotter Rosqvist and O’Dell to discuss understandings, policy context and advocacy for autism across the UK and Swedish contexts.
• A one day meeting with two London based charities who specialise in supporting adults with learning disabilities including autism. The meeting would including a focus group discussion to explore understandings of autism and how best to include people with autism in their community.

Swedish visit, March 2016, activities:
• Dialogue between O’Dell and Bertilsdotter Rosqvist to continue developing a conceptual frame of intercontexuality.
• A one day meeting with a Swedish self-advocacy group working with a project where autistic adults who have experience of working in the regular employment market teach young adults with autism tools to help them engage in work. O´Dell and Bertilsdotter Rosqvist would meet up with the group during one day in order to run a focus group interview centred around contextualized autistic knowledges.

May 2016 Virtual meeting
To discuss the transcripts of focus group discussions, begin analysis, bring together key findings from the visits and finalise plans for publication and next steps for funded research.

May- December 2016
Complete data analysis and draft paper for publication.

Outcome

The project will enable a deeper understanding of the two European contexts in which people with autism live, are supported and researched. Specifically the dialogue would enable the two academics to work together on a publication that explores intercontextual knowledge about autism and ways in which ideas about autism travel between the UK and Sweden. For example, it is already evident (even before we begin the comparisons across contexts) that people with autism have very different experiences in the UK and Sweden, for example in Sweden ‘autism’ is considered as part of a broader group of conditions termed ‘neuropsychiatric disabilities’ which is absent in the UK context. We are also aware that the terms neurodiversity and NT- neurotypicality as a descriptor of people who do not have a diagnosis of autism, or self-define themselves as autistic, both which originated in the UK, has been taken up widely in both the UK and Sweden.
In the short term, the publication produced would provide an in-depth comparison of the two contexts, including a thematic analysis of the focus group discussions which would enable empirical substantiation of the intercontextual focus of the project, illustrating areas of similarity and difference. However in the longer term the project would enable the applicants to work together to identify future areas for joint work, with a particular focus on larger scale empirical studies.