‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

Figures & data

Table 1. Summary of the seven seminars in the series ‘Innovative Technologies for Autism: Critical Reflections on Digital Bubbles’.

Seminar	Date and location	Main focus or question(s) addressed	Related publication
Seminar 1: The Social Bubble	University of Southampton, November 2014	Whether technologies create a social bubble and, if so, do they increase social isolation, or provide helpful ways of engaging with other people in a remote way?	Parsons et al. (2015)
Seminar 2: The Developmental Bubble	University of Sussex, March 2015	How can developmental psychology inform approaches to understanding of autism (and approaches to intervention)?	Yuill et al. (2015)
Seminar 3: The Methodological Bubble	University of Bath, July 2015	What are the useful strategies as well as challenges that have been found in developing, researching, and evaluating technologies for autism?	Brosnan et al. (2016)
Seminar 4: The Technology Bubble	University of Southampton, November 2015	How do different kinds of technology support interaction and communication? What are the benefits and costs of the development and use of different types of innovative technologies (e.g. virtual reality; tangible devices; augmented reality)?	Good et al. (2016)
Seminar 5: The Disciplinary Bubble	University of Sussex, March 2016	What is it that we are trying to achieve with technology and how can we collaborate constructively across these disciplines to realise our goals?	Parsons et al. (2017b)
Seminar 6: The Diversity Bubble	University of Bath, July 2016	What can we learn from research being conducted with other groups of users and how might awareness of such diversity inform a wider agenda of social inclusion?	Brosnan et al. (2017)
Seminar 7: The Cauldron of Many Bubbles	Cumberland Lodge, November 2016	What are the key messages arising from across the previous seminars? What have we learned? What research should we be doing in the field of autism and technology, and how should we be doing it?	Parsons et al. (2017a)

Table 2. Summary of main findings and key questions and implications for research.

Activity theory category of analysis	Main findings	Illustrative quotes from stakeholders	Key questions for research	Implications for research practices	Implications for social and research policy
Subject: whose perspective(s) do we need to consider, and what might those perspectives reveal or mean?	Much research and thinking about autism comes from a ‘neurotypical’ perspective, but we need to strive for a better understanding of the benefits and limitations of technologies from the perspectives of the people who use them There is a need to challenge traditional, normative assumptions, and start from a different place in our thinking The assumption that autistic people may be especially vulnerable or socially disadvantaged by engaging with technologies is important to challenge. There are many benefits reported and, as for all users, there should be appropriate and balanced recognition of pros and cons	‘Getting the first person perspective (from people with ASD) about what is appropriate to focus on is really important’ “’Neurotypical syndrome’ – assuming their way is the right way and that way is superior’ ‘Whose problem is it? If the person with ASD is happy to mainly communicate online is this a problem for them?’ ‘How far is society moving towards digital communication and are we all within our own social bubble?’	What does it mean for everyone to be social in a technology-enabled world? Where or what is the ‘social deficit’ when using technology? Where, and for whom, is the social isolation? How can technologies be used to help non-autistic people understand the views, perspectives, and experiences of autistic people? Or, what role could technologies play in addressing the ‘double empathy problem’ (Milton 2012)?	Starting point for framing research questions should come from the needs and contexts of autistic people, their families, and other stakeholders, rather than only from research Consequently, much stronger collaborative working between academics and the wider autism community is fundamental for moving the field forward (e.g. Parsons and Kovshoff 2019)	The United Kingdom’s industrial strategy (Department for Business, Energy and Industrial Strategy 2017) is clear about the grand challenges that it seeks to address in the United Kingdom, including the application of innovative technologies to support healthy ageing, and using artificial intelligence to transform the global economy. Including autistic perspectives and expertise in meeting the challenges would be a major strength (e.g. through the new UK Parliament Knowledge Exchange Unit)
Community: who is involved?	The involvement of people across the diversity of the autism spectrum can bring many strengths and creativity to the technology design and development process Challenges remain in how such diversity can be appropriately integrated and managed within technology-oriented participatory design processes Schools and teachers as gatekeepers and stakeholders require particularly careful consideration. Schools should not simply be construed as testing sites for technology developers	‘Users need to understand what academics do, teachers + parents should understand about the design implementation’ ‘How can innovative technologies be used in different cultures? Can all these methods be transferred in a different language environment?’ ‘What does [the] school get? It’s not a zoo!’	What are the wider cultural implications for research questions and findings with respect to geographical, linguistic, social, and personal diversity (including, age, ethnicity and gender)? What methods and practices can enable the participation and engagement of the most marginalised and excluded voices? In what ways are questions, methods, and evaluations shaped through the involvement of educators from the start of technology development processes?	Avoid assumptions of mono-culturalism, and over-generalisation of claims Collaboration should not only recognise and include the diversity of the autism spectrum, but also seek comparative, multi-cultural, and international perspectives Educational contexts, especially schools and teachers, should be involved as partners in research rather than positioned as passive testers and recipients of it	Existing limitations of narrow cultural assumptions in the autism evidence base need to be fully acknowledged Actions must be taken to broaden representation of diverse voices and experiences in research and consultations that are commissioned. For example, the 2019 consultation on the Autism Strategy in England only allowed for written responses to online or print survey questions Autistica.org.uk provides an example of how different views are being sought and the under-representation of some groups in autism research is being tackled
Division of Labour: how is or should the work be distributed?	The diversity of the spectrum should be recognised through acknowledging the differing perspectives that individuals will bring. Advocating for, and enabling, different perspectives (e.g. by parents, older, more verbally expressive people) is important, but is not the same as including first-person perspectives of autistic people Not everyone wants to take an active role in research. There are other ways of supporting and encouraging engagement and support that do not pre-suppose or require co-creation	‘Participatory design needs to be creative to include less able children with autism in the process’ ‘Should/can HFA [high functioning autism] people advocate for LFA [low functioning autism] people?’ ‘How can we match those who see solvable problems with those who can engineer solutions?’	In what ways can multi-disciplinary groups, including stakeholders, work or interact together to develop and use technologies for shared purposes? How can we more effectively enable support, mediation, and participation through the use of technologies as tools for engagement and communication within participatory design?	Open, accurate, and reflective identification of roles, assumptions, and expertise is needed Methods need to respect a range of preferences, as not everyone may wish to comment or be involved in everything, or be involved in the same ways Clear communication and clarification of project objectives from the outset, and throughout, are essential	Research and project funders in all sectors can actively promote and encourage participatory approaches to project design, development, and completion Policies for funding should recognise the value of a range of inputs and methodologies for supporting wider participation
Rules: what are the factors that support or constrain participatory design?	Everyone involved will have different views about the issues that need to be addressed All views matter and add value, but there should be appropriate recognition of the need to prioritise the needs and views of autistic people and families in deciding research agendas Those who may be gatekeepers within participatory design processes need to ensure inclusive, rather than exclusive, approaches The overall cost, as well as the personalisation, of new technologies might be prohibitive and exclusionary	‘Programmers as gatekeepers’ ‘Personalised technology might be excluding’ ‘The technology clearly has a role to play – but is it prohibitive due to cost? How can we make it more available?’	What are the needs and priorities of autistic individuals and families in relation to technology use and development? How might these needs and priorities be met through the investigation and development of existing and/or readily available technologies? In what ways can longer-term research horizons (blue-sky thinking, new technologies) enable these needs and priorities to be met?	Value for money, and impact, relevance, and availability for individuals are vital considerations These considerations need to be balanced against the push towards innovation and blue-sky thinking Research innovation is important as well as meeting everyday needs, and so research teams should plan for ways in which more experimental (blue-sky) prototypical approaches can be made more available and accessible for everyday use	The priorities for project development and research set by funders should explicitly recognise the importance of agendas led by the autism community
Object of the activity: what technology is being made, might be made, and what are the assumptions about what is made (and how)?	Participatory design of technologies in the autism field is essential There are many ways in which technologies can be enabling, motivating, engaging and fun. Technologies can support choice, agency, identity, individual preferences, and communication in a range of ways The participation in the process of technology design and development may be as rewarding, if not more so, for individuals than the more specific outcomes research teams may hope to achieve There is a fundamental interconnectedness between uses and functions of technologies and the ‘real world’. Maintaining artificial distinctions between ‘digital’ and ‘real’ is outdated and likely to be limiting for the field	‘Technology can open doors to communication’ ‘Depending on the aim the process may be more important than the outcome’ ‘Real life is not necessarily distinct from digital life if it has similarly meaningful experiences!’ ‘Are traditional scientific methods such as randomised controlled trials of use here or not?’	How can researchers and practitioners take a wider view of what is happening within and around the technology to support e-inclusion (Abbott 2007)? How can technologies be used to enable connections and interactions with others in a range of ways? How can we enable fun, play, creativity, lightness, and subtlety through the development, application, and exploration of technologies (new and existing)? In what ways could broadening our ideas of positive engagement and indicators of success enable a more holistic understanding of the person or child?	Participatory design (as a range of approaches) should be an essential starting point for research projects in this field. These approaches should document and value the engagement and development of the process of the design (and the benefits/challenges experienced therein) as much as what is produced and what the outcomes may be Research needs to more fully recognise and explore the rich variety of ways in which people are using technologies in their lives, and broaden out from the narrow focus on social communication and interaction, and skills/behaviours Research designs that assume a distinction between ‘digital’ and ‘real’ require critical evaluation	The importance and use of technologies in everyday life for many people move beyond narrow economic interpretations of intervention or assistance (see Burch 2018). Fun, play, leisure, and friendship are all vital aspects of technology use that need to be fully recognised A more inclusive and expansive understanding of this could be recognised through special educational needs and disability legislation (for example, Department for Education/Department of Health 2015) that guides approaches to support and learning
Outcome: what does the autism and technology field as a whole hope to achieve?	It is important to reflect on whether and how we know that what we do really makes a difference to people’s lives and experiences. Those experiences must be of value to those taking part This could be from the perspectives of individuals with autism, parents and families, and practitioners, as well as from the perspectives of professionals who may wish to use technologies to support individuals and families in a range of ways Focusing on strengths, creativity, talents, and positive flourishing is very important for the field There is a need to think very carefully and ethically about what it is that we are really trying to achieve with our work, and why	‘How can we better link the pool of talent that autistic people are with the essential technical and engineering roles that they can so aptly fulfil?’ ‘“An inclusive common social framework” as opposed to an “interventionist medical model”’ ‘Ethics and responsible innovation’	What does responsible innovation mean in the autism and technology field? How can we more appropriately define, identify, and characterise ‘outcome’ measures that matter to individuals, families, and other stakeholders? How can we ensure that the processes and purpose of participation are valued as much as possible eventual ‘outcomes’? Through a focus on strengths, creativity, and talents, what and how could we design differently?	Work with stakeholders to generate new frameworks for participation and evaluation Adopt and develop more inclusive approaches to research that move away from a dominance of decontextualised, one-off experiments towards a more consultative and context-aware range of methodologies	Commercialisation and innovation strategies for the development of new technologies need to be mindful of the need for responsible innovation and ensure that intended outcomes for technology use are in line with user needs and preferences. Commitments to these principles can be included in objectives for delivery plans (e.g. via Innovate UK [n.d.] strategy) to ensure commitment to action
Tools: what technologies are being or should be used, developed, and tested?	Online spaces, including social media, can be powerful for enabling communication, friendships, agency, and choices Online communication and interactions have value in their own right, and can also be stimuli for face-to-face initiation and interactions Digital and face-to-face communication and interactions are important There is a need to consider the features and uses of existing technologies in order to understand the value and relevance for individuals	‘What [technologies] are people with ASC [autism spectrum conditions] really using?’ ‘Social media – less information, asynchronous. Face-2-Face unpredictability, less control’ ‘Is modifying existing tech better than inventing new tools?’ ‘One of a box of tools that can be useful depending on individual need’ ‘Technology can never replace human contact and learning. This must be used carefully with ASD’	In what ways are existing technologies being used by autistic people, and for what purposes? What technologies would autistic people like to see developed, and for which purposes? In what ways can technology-based interactions and activities support face-to-face communication, and vice versa?	Co-design of projects using participatory methods is vital for informing research agendas. These agendas should consider what and how technologies are currently being used, as well as what is needed or desirable for development Evaluation must be amenable to the range of interactions and uses that occur within, through, and around the technologies in order to really understand needs, preferences, benefits, and challenges	Policies for shaping the direction of research and innovation need to be sufficiently context and user aware to prioritise where new developments are needed and avoid unintended consequences of technology withdrawal or lack of support (where useful technologies are already valued by users)

Figure 1. Example of post-it notes used to collect comments and feedback during the seminars.

Figure 2. The core structure of a human activity system (Engeström 1987, 87).

Parsons, S., K. Guldberg, K. Porayska-Pomsta, and R. Lee. 2015. “Digital Stories as a Method for Evidence-Based Practice and Knowledge Co-Creation in Technology-Enhanced Learning for Children with Autism.” International Journal of Research & Method in Education 38 (3): 247–271. doi:10.1080/1743727X.2015.1019852.

 Web of Science ®Google Scholar

Yuill, N., S. Parsons, J. Good, and M. Brosnan. 2015. “Knowing Me, Knowing You: Perspectives on Awareness in Autism.” Journal of Assistive Technologies 9 (4): 233–238. doi:10.1108/JAT-09-2015-0025.

 Google Scholar

Brosnan, M., S. Parsons, J. Good, and N. Yuill. 2016. “How Can Participatory Design Inform the Design and Development of Innovative Technologies for Autistic Communities?” Journal of Assistive Technologies 10 (2): 115–120. doi:10.1108/JAT-12-2015-0033.

 Google Scholar

Good, J., S. Parsons, N. Yuill, and M. Brosnan. 2016. “Virtual Reality and Robots for Autism: moving beyond the Screen.” Journal of Assistive Technologies 10 (4): 211–216. doi:10.1108/JAT-09-2016-0018.

 Google Scholar

Parsons, S., N. Yuill, M. Brosnan, and J. Good. 2017b. “Interdisciplinary Perspectives on Designing, Understanding and Evaluating Digital Technologies for Autism.” Journal of Enabling Technologies 11 (1): 13–18. doi:10.1108/JET-01-2017-0001.

 Web of Science ®Google Scholar

Brosnan, M., S. Holt, N. Yuill, J. Good, and S. Parsons. 2017. “Beyond Autism and Technology: Lessons from Neurodiverse Populations.” Journal of Enabling Technologies 11 (2): 43–48. doi:10.1108/JET-02-2017-0007.

 Web of Science ®Google Scholar

Parsons, S., N. Yuill, M. Brosnan, and J. Good. 2017a. “A Child with Autism Only Has One Childhood’: Main Themes and Questions for Research from the ‘Digital Bubbles’ Seminar Series.” Journal of Enabling Technologies 11 (3): 113–119. doi:10.1108/JET-07-2017-0023.

 Web of Science ®Google Scholar

Milton, D. E. 2012. “On the Ontological Status of Autism: The ‘Double Empathy Problem.” Disability & Society 27 (6): 883–887. doi:10.1080/09687599.2012.710008.

 Web of Science ®Google Scholar

Parsons, S., and H. Kovshoff. 2019. “Building the Evidence Base through School-Research Partnerships in Autism Education: The Autism Community Research Network @ Southampton [ACoRNS].” Good Autism Practice 20 (1): 5–12.

 Google Scholar

Department for Business, Energy and Industrial Strategy (DBEIS). 2017. “Industrial Strategy: Building a Britain Fit for the Future.” Available from: www.gov.uk/beis

 Google Scholar

Abbott, C. 2007. e-Inclusion: Learning Difficulties and Digital Technologies. Bristol: Futurelab. Accessed August 14 2018. https://www.nfer.ac.uk/media/1829/futl66.pdf.

 Google Scholar

Burch, L. F. 2018. “Governmentality of Adulthood: A Critical Discourse Analysis of the 2014 Special Educational Needs and Disability Code of Practice.” Disability & Society 33 (1): 94–114. doi:10.1080/09687599.2017.1383231.

 Web of Science ®Google Scholar

Department for Education/Department of Health. 2015. “Special Educational Needs and Disability Code of Practice: 0 to 25 Years.” Available from: https://www.gov.uk/government/publications/send-code-of-practice-0-to-25

 Google Scholar

Engeström, Y. 1987. Learning by Expanding: An Activity-Theoretical Approach to Developmental Research. Helsinki: Orienta-Konsultit.

 Google Scholar