‘Our Stories…’: Co-Constructing Digital Storytelling Methodologies for Supporting the Transitions of Autistic Children: Study Protocol Documents and Example Digital Stories, 2021–2022

Parsons, Sarah and Kovshoff, Hanna and Yuill, Nicola (2023). ‘Our Stories…’: Co-Constructing Digital Storytelling Methodologies for Supporting the Transitions of Autistic Children: Study Protocol Documents and Example Digital Stories, 2021–2022. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-856097

The long-term social, educational, and employment outcomes for autistic people remain poor. There is a longstanding gap between research and practice such that these poor outcomes are not being adequately addressed despite over 40 years of research. This has led to calls for research to develop more participatory methods that are inclusive of autistic people such that their needs and strengths can be identified, explored, and understood in more effective ways that make a difference to everyday life. However, many approaches to participation remain tokenistic and partial, with many voices and experiences excluded and under-explored. Such voices include those with complex needs who may not communicate via speech. Also excluded are the voices of families, and practitioners across education, health, and social care. Lived experiences and professional knowledge are sources of evidence that are regularly overlooked and undervalued in research in favour of scientific evidence and formalised knowledge. We argue that research, and the methods used therein, can only make an impact on practice if there is a genuine commitment to gathering and understanding these different sources of evidence in ways that connect research and practice from the start. Practical knowledge and experiences need to inform research, and research needs to address practical issues that matter to children, families and practitioners. This project will therefore apply and extend a participatory Digital Storytelling methodology to explore the methodological challenge of gathering a range of views from autistic children, families, and practice in authentic ways. Digital Storytelling is an accessible and inclusive methodology that supports the sharing of views and experiences in visual, video form. We have very successfully used this approach to explore the perspectives of 4-year-old autistic children to inform transition planning to their first schools (https://autismtransitions.org/), and teaching and learning practices with new technologies in schools that support autistic children with a wide range of needs (https://tinyurl.com/yb35vygt).This project will focus on applying and extending this methodology to the transitions of autistic children and families in a range of contexts. Transitions include everyday changes such as between home and school, classroom and break time, attending assessments and appointments, plus the major life transitions between stages of schooling. While such transitions can create uncertainty for all children, they can be especially difficult for autistic children and their families. Current strategies for supporting transitions (such as paper-based checklists and preparatory visits) have been found wanting under the lockdown for COVID-19. Thus, there is a real opportunity for devising practical research methodologies that will also make a difference and facilitate the assessment of individual needs and planning over the longer term. We will explore this research challenge through piloting a range of digital video technologies (e.g. 360 degree virtual tours, Virtual Reality, Wearcams) across four projects, focusing on (1) the transition between primary and secondary school (2) the transition into further education, training, or employment (3) transitions into healthcare and assessment and (4) the micro-transitions that take place in the classroom every day. Our project will develop practical and scalable digital methods, with practice settings, that will inform inclusive research practices and can also be used in the long-term by children, families, schools and organisations. While our project focuses on autism, the knowledge we gain is applicable to research and practice much more widely and to any voices or groups who are marginalised from the traditional ways of doing research and to any contexts of practice.

Data description (abstract)

The Our Stories project was a methods pilot project co-constructed with different practice-based settings to support different transitions of autistic children, young people and families. Therefore, most of the documents deposited are methodological protocols for informed consent, video content creation, evaluation, and analysis. There were 4 pilot projects in total, each with different protocol documents to suit the context and stakeholders as well as institutional requirements for ethics review at the universities of Southampton and Sussex. We also share example video outputs from the project that we have permission to make publicly available (the URLs to these outputs are also included in the summary Readme document) and include: 10 'I am' Digital Stories; 2 'How I feel' Digital Stories; and 3 'We are' Family Digital Stories.

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