'Our Stories...': co-constructing Digital Storytelling methodologies for supporting the transitions of autistic children

Lead Research Organisation: University of Southampton
Department Name: Southampton Education School

Abstract

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.

Publications

10 25 50
 
Description We built substantially upon our previous methodological research to apply and extend a strengths-based participatory Digital Storytelling methodology to enable a wider range of autistic voices to be heard in research. We achieved this through 4 pilot projects in education and healthcare and included 29 children in Year 6 (aged 10-11), with a range of complex communication needs and moderate or severe learning disabilities, who co-created 'I am' Digital Stories to support their transition to their new school in Year 7. Two young people aged 18-19 years co-created 'I am' Digital Stories to support their transition from special school into adult provision. Three families with autistic children co-created 'We are' Digital Stories to share information about themselves with medical students and two of the medical students created 'I am' Digital Stories to introduce themselves to the families. Three autistic girls at mainstream secondary school created 'How I feel' Digital Stories to show how they use emotional regulation strategies in their everyday transitions at school. Additionally, we co-created four 'We Are' Virtual Tours that showcased the places and spaces of settings to which children were transitioning, including a new school, a new school building, and a community café and activity centre. The Virtual Tours included: 360° panoramic videos of inside and outdoor spaces that could be explored in a viewer's own time; inset videos of key staff members and / or illustrative activities; and floor plans to visualise navigation routes through the spaces.

In all cases, feedback from participants and stakeholders, including school staff, families, children and young people, and students, has been overwhelmingly positive and has confirmed the value and power of the Digital Stories and Virtual Tours for (1) enabling the agency and voices of children and young people; (2) providing more holistic insights about the person and crucial information about the things that matter to them that are not available otherwise; (3) facilitating the familiarisation of a new place in ways that can be controlled by the person making the transition; and (4) helping to smooth transitions, either through feelings of empowerment from children and families being actively involved in the process or improved knowledge of the person or new context which provided reassurance and practical strategies.

Together, the examples of these digital tools and our experiences in co-creating them with families, professionals, and community stakeholders provide a compelling basis for seeking to embed our Digital Stories methodology in research and practice. We know that viewing the Digital Stories has changed thinking, attitudes, and practice amongst families, professionals, and practitioners. Our research team also gained new skills and capacity in the application of the methodology which has been taken forward in several ways: through the creation of accessible animations and downloadable guides for creating 'I am' Digital Stories and 'We are' Virtual Tours in practice; a series of short Resources for the National Centre for Research Methods; and new research collaborations taking up the idea, for example in supporting care-experienced children and older adults in social care settings.
Exploitation Route As a co-constructed method with practice, researchers in more traditionally defined academic contexts and those who work in practice-based contexts would benefit from exposure to the methodology. We recognise there are distinct and overlapping needs and membership between these groups (e.g., practice-facing academic disciplines who undertake research such as nursing, educational psychology, teaching; as well as researchers based in academic institutions who work closely with those contexts and involve users). We are also committed to promoting inclusion and diversity, and awareness of marginalised groups and voices, early in the careers of future researchers and practitioners through exploring opportunities for embedding the Digital Stories in our teaching at the Universities of Southampton and Sussex. Consequently, we envisage a range of activities which could include:
(1) Working alongside, and learning from, practitioners embedding the Digital Stories methodology across their research practices and co-creating evaluation tools with them;
(2) Creating sustainable opportunities for research training on the Digital Stories method via collaboration with the National Centre for Research Methods and our Autism Community Research Networks at Southampton and Sussex;
(3) Democratising the method through embedding the Digital Stories methodology in teaching for practitioners and researchers of the future i.e., students at our Universities.
Sectors Communities and Social Services/Policy,Education

URL https://acorns-soton.org.uk/2023/01/our-stories-real-examples/
 
Description The methodologies developed and extended in the 'Our Stories' project are being embedded in practice outside of academia in several ways. Specifically, within: - An Educational Psychology team in South Wales working with early years and primary settings to support the transitions of children with Special Educational Needs and Disabilities through the application of 'I am' Digital Stories; - An independent Educational Psychology practice supporting disabled young people in their transitions to secondary school; - A team of professionals supporting care-experienced children using 'I am' Digital Stories within a specific local authority in the South West; - A third sector organisation supporting disabled people on the South Coast to create their own 'I am' Digital Stories; - A Speech and Language specialist team within a local authority in the South applying the 'I am' Digital Stories with young people transitioning between or beyond school settings; - A new collaborative project between a digital media community interest company and a special school to support people to access live music through the use of 'We are' Virtual Tours.
First Year Of Impact 2022
Sector Communities and Social Services/Policy,Education
Impact Types Societal

 
Description Early Career Researcher Training for Autistica
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Friends of St James Park using their video tour on their website
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
URL https://fosjp.org.uk/virtual-tour/
 
Description Great Oaks School using their virtual tour on their website as part of their transition support
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
URL https://www.greatoaks.school/transition/new_menu.html
 
Description Hill House School using the Digital Stories methodology in practice
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
URL https://www.cambiangroup.com/specialist-education/our-schools/autism-schools/hill-house-school/resea...
 
Description Hill House School using their video tour on their website
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
URL https://www.cambiangroup.com/specialist-education/our-schools/autism-schools/hill-house-school/
 
Description Neath Port Talbot Inclusion Service Educational Psychology team embedding the Digital Stories in practice
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or improved professional practice
 
Description Springwell School embedding Digital Stories in transition planning for all Year 5 and Year 6 pupils
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
 
Description Uptake of 'I am...' Digital Story methodology into Speech and Language Therapy practice
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
 
Description Virtual Tour for Fairmead
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Contribution to new or Improved professional practice
Impact Fairmead School have benefitted from the up-skilling of their staff who are now able to further develop and manage the virtual tour. Current and prospective students have also benefitted from having access to the virtual tour, which has now been accessed over 800 times. Early findings suggest that having access to Digital Stories about the school can help to reduce worry and anxiety about starting at a new school or returning to school after the summer holidays.
URL https://www.fairmeadschool.com/virtual-tour/
 
Description Animated 'How to' video guides for creating Digital Stories in practice - ESRC Impact Acceleration Account funding
Amount £12,713 (GBP)
Organisation University of Southampton 
Sector Academic/University
Country United Kingdom
Start 05/2022 
End 02/2023
 
Description Co-creating an 'I am' Digital Stories app - Social Enterprise Development Fund
Amount £20,919 (GBP)
Organisation University of Southampton 
Sector Academic/University
Country United Kingdom
Start 03/2023 
End 07/2023
 
Description Falling through the gaps? Investigating the experiences of autistic young people within Care and Education Treatment Reviews
Amount £60,000 (GBP)
Funding ID 2606294 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2021 
End 09/2025
 
Description Festival of Social Science Event Budget
Amount £400 (GBP)
Funding ID ES/T502029/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 11/2021 
End 11/2021
 
Description NCRM Online Resource - Digital Stories
Amount £1,808 (GBP)
Organisation University of Southampton 
Department ESRC National Centre for Research Methods
Sector Charity/Non Profit
Country United Kingdom
Start 02/2023 
End 03/2023
 
Description Our Stories: digital methods for supporting transitions of autistic children and young people - ESRC Festival of Social Science
Amount £141 (GBP)
Organisation University of Southampton 
Sector Academic/University
Country United Kingdom
Start 11/2022 
End 11/2022
 
Description Research England Healthy Ageing
Amount £2,732 (GBP)
Organisation United Kingdom Research and Innovation 
Department Research England
Sector Public
Country United Kingdom
Start 03/2022 
End 06/2022
 
Title Our Stories Study Protocol Documents and Example Digital Stories 
Description 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. 
Type Of Material Database/Collection of data 
Year Produced 2023 
Provided To Others? Yes  
Impact Too soon to be able to report this. 
URL https://reshare.ukdataservice.ac.uk/856097/
 
Description Festival of Social Science event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact On Friday 5th November, ACoRNS held our fourth event for the annual Festival of Social Science. This year, the event was lead by iPhD student, Verity Ward. Her work explores the opportunities that research can provide for autistic, and otherwise neurodivergent, students to participate in school. She presented ongoing work from two studies where students from Fairmead School in Somerset collaboratively designed computer games, and made videos.

The event consisted of two parts: a public webinar, and an in person showcase of the work in school. The webinar featured a short introduction to ACoRNS by Sarah Parsons, followed by a presentation about Verity's research and the ongoing partnership with Fairmead School. Ben Crump, Assistant Headteacher at Fairmead School, spoke about the benefits and opportunities that engaging with the research had provided for the school.

After the webinar, the key stage four students at Fairmead School were given the opportunity to engage with three rooms showcasing work competed during the two studies. The first room featured the computer game created by the students, the second showed videos made about the process of designing and developing the game. Finally, the third room displayed the virtual tour created from the videos students made in the second project. Students from each of the projects volunteered to staff the rooms, answering questions about the work on display and supporting others with the interactive elements.

At the end of the school day, the three rooms were opened to external guests, including school governors, EPs and parents of students who had taken part in the research. Overall the day was a great success, and we would like to thank Fairmead School for hosting and ESRC for supporting the event.
Year(s) Of Engagement Activity 2021
URL https://youtu.be/Gr4A40JRi_c
 
Description Festival of Social Science webinar 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 41 people attended a webinar to promote the Our Stories research as part of the annual Festival of Social Science. This enabled discussion afterwards and raised awareness of our methodologies amongst a wider, practice-based audience.
Year(s) Of Engagement Activity 2022
 
Description Introduction to 'I am' Digital Stories workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact 21 people attended an in-person training workshop that promoted the 'I am' Digital Stories methodology and supporting materials. Participant feedback was very positive with many people indicating they were likely to apply the method in their practice.
Year(s) Of Engagement Activity 2023