Innovative technologies for autism: critical reflections on digital bubbles

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

Abstract

Autism is a lifelong condition that affects how people interact and communicate with others, and how people sense and think about the world. It is a spectrum, including people with severe learning difficulties and those with very high levels of intelligence. Diagnosis of ASC has increased, with UK estimates of at least 1 in 100 people. ASC can have negative effects on social development, relationships, access to social support, life skills, employment and independent living. However, technology is often seen as having a special attraction for people with ASC, and many technological supports (e.g. virtual reality games, apps, social robots, objects with embedded technology) have been developed to support people with ASC.

Technology use in typically-developing people has been subject to dire warnings in the press about the ways it is cutting people off from social contact, into 'digital bubbles'. The same anxieties have been expressed about the use of technology in autism: will it increase social isolation, or does it provide a way of engaging with other people in a remote way? Unfortunately, research evidence is not integrated within or between disciplines and rarely presented to stakeholders for discussion. Scientific research on this topic comes from a wide range of disciplines, including education, psychology, computer science, human-computer interaction and engineering, but these disciplines also tend to exist in their own separate bubbles.

This seminar series aims to bring together different disciplines to review and critically evaluate ways that technology might support or impair the wellbeing of people with ASC, and to bring aspects of the debate to stakeholders beyond the academy, including people with ASC, families and carers, professionals and practitioners. For example, what does the current evidence tell us, how does it help us to ask more subtle questions, e.g. about the differences of remote vs. live interaction with other people, are researchers making unjustified assumptions about technology use in autism, what can the different disciplines learn from each other and how can the debate be better informed by the views of stakeholders directly involved?

This series of 7 seminars will bring together academics from different disciplines and end users to address 6 core areas within the 'autism and technology' agenda:

(1) Social: setting out the possible benefits and concerns in technology use in autism
(2) Developmental: looking across all stages of life from infancy to old age to learn from different approaches and assumptions
(3) Methods: looking at how the question is studied (e.g. controlled experiments, analysing videos of interaction, methods of evaluating what works)
(4) Technologies: looking at how questions might be very different depending on the sort of technology used, and how it is used, e.g. virtual vs real-world, individual or shared, to replace or add to other approaches
(5) Disciplines: how different academic approaches can contribute and challenge each other
(6) Diversity: what might be learnt by looking at the use of technology to support a whole range of groups, e.g. the elderly, dementia sufferers, those with limited communication, and more broadly looking across cultures and the general population, to challenge assumptions about technology use; well designed and informed development of technology may extend benefits to all.
Finally (7) we bring together all the ideas and highlight areas for future collaboration and research.

Planned Impact

Who will benefit: Immediate beneficiaries of the series are the participants, primarily from academia. However, stakeholders are also involved at the outset and throughout via a series of blogs. We identify stakeholders as people with autism over the entire spectrum and of all ages who could benefit from using technology to support their everyday lives and relationships, and also people who support them in this, for example parents, carers, friends and work colleagues, schools and education professionals. There is already a tradition of user-centred design in HCI research into autism (see Seminar 3), and that tradition underlies the seminar series. Examples of stakeholders include:
- User, advocacy and support groups such as Autism Sussex, Hampshire, Wessex and Surrey, ASPire;
- Professional service groups and networks, e.g. The National Autistic Society's Network Autism and the Autism Hub based at Cardiff, the Portsmouth Autism Research Network;
- Service providers, e.g. schools and colleges.

How: Academic engagement is as per the relevant beneficiaries section. For stakeholders more widely, we use four methods. First, we will support 5 stakeholders for each seminar with travel bursaries, chosen for their particular interest in and knowledge of the topic. Second, all stakeholders have access to the papers from the seminars via the series website. Third, each seminar will be summarised in a blog produced by an early career researcher, with a series of questions raised for stakeholders. The blog will be left open until the next seminar, when the responses will be summarised and presented to the keynote speaker from the previous seminar, and participants in the forthcoming seminar, for feedback and comment. This produces a 2-way conversation between researchers and stakeholders. Fourth, selected seminar participants will provide short videos of technology they have used or developed, for a video showcase on the website illustrating cutting-edge uses of technology for stakeholders to interact with.

The online sharing of seminar material and use of blogs for discussion enables anyone in this group to take part, and we anticipate that involvement in the series will increase levels of awareness and active engagement in research into autism and technology in several ways. First, knowledge and understanding will be fostered through direct participation in the seminars and online access to the blogs. Second, those stakeholders involved will themselves disseminate this knowledge and understanding through the organisations and relationships they are involved in. Third, stakeholders can participate in synchronous and asynchronous online debates, having direct contact with researchers in the area across different disciplines. Fourth, the series demonstrates the value of stakeholders' contributions.

In combination, the knowledge dissemination together with the opportunity for interaction should empower stakeholders to engage in debate about research, to contribute to the research agenda and to engage with the findings of such research. The inclusion of stakeholders in turn feeds in to the quality, relevance and ecological validity of research.
It is widely accepted that service users should have every opportunity to be involved in the nature and delivery of services, such as education and social care. This is particularly important in autism given the central place of communication difficulties on the spectrum. Anecdotally, we find that researchers in autism are often involved because of personal experiences, and we think that this further enhances the potential for impact. By direct contribution in the blogs, stakeholders will converse with technology designers, commissioners and providers of services and policymakers. We anticipate that participation of stakeholders helps to shape the research agenda and generates research that is rigorous and inclusive.

Publications

10 25 50
 
Description We have developed a strong, multi-disciplinary, community of academic researchers and stakeholders (people with autism, families and carers, professionals and practitioners) to review and critically evaluate ways that technology might support or impair the wellbeing of people on the autism spectrum. This community also includes international academics, national and local autism organisations, representatives from the technology industry, and autism research funders. We held seven seminars to address core areas and debates within the 'autism and technology' agenda: 240 delegates attended in total and we supported 50 travel bursaries to enable PGRs/ECRs and community stakeholders to participate. A particular success of the series was the sustained involvement of stakeholders and ECRs/ PGRs throughout, enabling them to contribute to and participate in these important discussions. We also developed an international perspective with colleagues attending from Spain and Turkey. Academics and practitioners from an ERASMUS+ project entitled SMART-ASD (see SMART-ASD.EU) attended one of the seminars as part of their development days.
We have also developed an interdisciplinary co-constructed body of knowledge and an innovative method of e-participation for the autism and technology field, both of which inform a roadmap for future research. The participation of stakeholders was supported directly at the seminars through many opportunities for discussion and feedback, continued through the website after each seminar, and this seemed to work very well. A simple, but effective, strategy was to encourage delegates to note down questions and observations on post-it notes during the day and place these on the wall for other delegates to see. Delegates were asked at the end of the seminar to spend 5 minutes writing down final reflections including any key messages they took from the day and / or any burning questions they were left with. These post-it notes were collated and shared through the website. They became an important source of information since they provided evidence of scrutiny and reflection on the invited talks and ensured that everyone who attended a Digital Bubbles seminar had the opportunity to voice their views or queries.
We have published seven short papers from the seminar series. All of these papers include the comments and feedback from speakers and delegates. We have developed and promoted a free innovative app, ASCmeI.T., inspired by the first seminar and jointly funded by each of the research team's respective institutions (total funding £21,500). ASCmeI.T. was co-developed with members of the autistic community who had attended the first seminar. The app is free to download (ascme-it.org.uk) and enables anyone to submit ideas about 'which technology for autism needs to be invented?' The autistic community can therefore input into the very first stages of the technology design process for the first time, and has therefore led to additional conference publications.
The seminar series website is now a rich repository of key messages and short videos from national and international speakers about their research in the autism and technology field. This website is now used as a teaching resource for students studying autism-related topics at all three academic institutions (Southampton, Sussex, Bath). In addition the website is a key resource within the SMART-ASD MOOC that has been developed for parents and practitioners (Europe-wide in multiple languages) of children with autism. Regarding papers and special issues (objective 5) we have now published a special issue in Research in Autism Spectrum Disorders on interaction and embodiment https://www.sciencedirect.com/journal/research-in-autism-spectrum-disorders/vol/58, including our Editorial that draws upon the main themes and outputs of the seminar series.
Exploitation Route One of our major objectives for the series was to build capacity in the UK autism and technology field by linking us as the organisers with (a) each other; (b) national and international scholars (c) local organisations and practitioners; and (d) early-career researchers and postgraduate research students. We have achieved this in many ways through multiple collaborative activities that took place during the seminar series as a direct result of people meeting at seminars, for example:
• Sam Holt's (ECR) current research collaboration with Professor Yvonne Rogers at UCL;
• Ian Hosking's (invited speaker) link with Sussex Community Trust paediatric dentistry for new funding bid to improve environments and address poorer health outcomes for children with autism;
• Nicola Yuill's (co-I) collaboration with members of Disability Trust (delegates) who support adults with autism;
• Research bids: Mark Brosnan (co-I) and Sarah Parsons (PI) to the Oak Foundation; Sam Holt (ECR) and Nicola Yuill (Co-I) to FIRAH [International Foundation of Applied Disability Research] with Ouriel Grynszpan;
• Sarah Parsons (PI) and Nigel Newbutt (ECR) involved in a short paper on Virtual Reality in Pediatric Psychology (for the journal Pediatrics) led by Thomas Parsons (invited international speaker) from the University of North Texas;
• Benoit Bossavit (PGR) presenting at workshop at CHI led by Judith Good (co-I) and Chris Frauenberger (invited international speaker);
• Members of the Autism Sussex adult support group (invited speaker) involved in the research of Harriet Hummerstone (PGR) supervised by Sarah Parsons (PI);
• Nicola Yuill's (Co-I) joint launch of new parent support services with East Sussex Local Authority;
• A member of Autism Hampshire (invited speaker) now regularly involved in teaching about autism for final year undergraduates at the University of Southampton with Sarah Parsons (PI);
• PGR delegates Chryssy Mangafa, Alaa Mashat, Alyssa Alcorn, Sam Holt connected to external examiners of their doctorates who were all speakers and / or organisers of the seminar series. They will be ambassadors for the field following the successful completion of their doctorates.
In addition to the new collaborative activities listed above, we note:
• The high numbers and high engagement of stakeholders at the seminars. Our seminar structure and methods (see above) show how to successfully engage end-users directly with academic research and at earlier stages;
• The ASCmeI.T. app could act as an e-participation model for other design challenges;
• The conversion of seminar materials into educational content;
• The potential of technology for health challenges in autism, e.g. dentistry and other surgical procedures.
Sectors Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Education,Healthcare

URL http://digitalbubbles.org.uk/
 
Description The 'Digital Bubbles' seminar series was designed from the start to be co-developed with stakeholders rather than disseminated to them, and so we very much planned for knowledge co-production rather than knowledge transfer. We have, therefore, established a strong pathway to impact that is beginning to influence thinking and practices beyond academia. Our knowledge co-production approach is evident from the way in which we have communicated with our key stakeholders throughout the project: firstly, via our website, which includes comments and feedback from delegates and has had over 18000 views by the end of the project, with visitors from over 100 countries worldwide, and secondly, via our seven short papers published in the Journal of Enabling Technologies (formerly the Journal of Assistive Technologies), which include the key themes that emerged from the presentations and audience discussion. These papers are intended for a wide audience [the journal is used by organisations in health, education and social care as well as within Higher Education], and one is published as gold open access. The other six were also made available for free as part of a promotion by the publisher because the papers have proved very popular with readers, regularly featuring in the journal's most downloaded papers. This follows a request from a study skills tutor who works with students with a wide range of additional educational support needs including students on the Autism spectrum who said: "I found out about these articles as I am starting a course through the FutureLearn organisation and they suggested the following articles as starter reading and I think they might really inform my current work practice so I'm basically dead keen to get a look". Furthermore, the topics covered in Digital Bubbles formed an integral part of a Massive Open Online Course (MOOC) at the University of Bath, focussed upon how technology can best support autistic individuals. Lay-person overviews of the seminars were provided and interested readers were further directed to the Digital Bubbles resources via the Digital Bubbles web page. The Digital Bubbles seminar series was fully referenced within the MOOC. The MOOC was launched in April 2017 to coincide with World Autism Awareness Day with 3,500 parents, practitioners and autistic people signing up (11% dropped out, which is a low rate for MOOCs). Therefore, well over 3,000 people, based mostly in the UK, accessed the summaries of the Digital Bubbles seminar series. The MOOC has now been translated into Spanish and Turkish and was launched (along with the English version relaunch) by the Countess of Wessex on November 1st 2017, resulting in an overall total of 7923 learners taking the MOOC (in all languages) from 114 countries - 6193 took the English version. In 2019 a new MOOC has been developed which will reflect the research embedded within the Special Issue and will be launched during World Autism Awareness Week in April. The seminars also led to a new collaboration between invited speakers from the Universities of Sussex and Cambridge and the Sussex Partnership NHS Trust to co-design with parents technology to reduce dental anxiety in people with autism. Following focus groups with parents and a summary report on parent concerns about dental health in autism, funding from the EPSRC-funded PRIDE network (focusing on patient public involvement) led to an evaluation of the technology in dental surgeries in Sussex. The practical results are highly positive, supported by 100% of parents involved, and now further funding is being sought for further evaluation, development and implementation within the NHS. One of the speakers involved in the seminar series and this dental anxiety work commented: "I found Digital Bubbles to be an inspiring group of people with diverse but complementary expertise. This was allied to a real passion to make a difference through high quality research linked to practice. As a result of this we have been able to set-up a small pilot to test an approach to reducing anxiety in special needs dentistry. It is a great example of how basic and applied research can be combined to make a tangible difference". There has been personal impact for individuals too as this speaker attests: "My early participation in Digital Bubbles as an autistic speaker made me feel welcomed and valued. I was surprised and delighted when my theme "Autism - What Can Be Invented?" was picked up by other speakers on the day and even became a key theme throughout the series. I was very interested in other presentations particularly those that involved engineering and/or invention. Digital Bubbles strengthened my links with Southampton University which in turn led to an invitation to support a 3rd year Education course on Autism. I am very hopeful that more opportunities will arise perhaps exploiting my experience in industry as an engineer with autistic talent". Indeed, the key theme of 'what can be invented?' led directly to the development of the ASCmeI.T. app (http://ascme-it.org.uk/) through which stakeholders can upload their ideas for technology-based inventions for autistic people. The app has attracted over 100 uploads thus far, and we hope to be able to work on some of these suggestions to develop prototypes or provide the basis for further funding applications to make the ideas a reality. The use of this app for generating technology ideas by one school inspired their further use of technology in the classroom i.e. to learn coding. Two MSc students at the University of Sussex worked with the school in the summer of 2017 to support their coding and using tangible technologies. This study also involved participatory design with students with autism where they made PowerPoints and interviewed each other about their use of technology. Thus, the project is influencing classroom based activities, albeit on a small-scale thus far. In line with our commitment to stakeholder involvement and knowledge co-production, we asked participants at the final Digital Bubbles seminar (19 in total) to complete an open-ended survey which would help us develop a "road map" to shape future research in the field of autism and technology. Using the key themes identified through this initial survey, a further questionnaire was developed and sent to everyone who had participated in one (or more) of the Digital Bubbles seminars. This questionnaire aimed to provide a better sense of the extent to which the views expressed in the first survey around autism and technology were shared by a wider audience. The questionnaire focused on determining future priorities for research in the area of technology and autism, reflecting on the ways in which research in this field should ideally be carried out, and what the research focus should be. Respondents were also asked for their views on future funding priorities. We received responses from parents/carers, as well as a wide range of professionals and academics with an interest in the field of autism and technology and related fields. The results of both the initial survey and subsequent questionnaire were shared on our website and via email with all of our participants, encouraging them to continue to share their views with us.
First Year Of Impact 2016
Sector Digital/Communication/Information Technologies (including Software),Education,Healthcare
Impact Types Societal

 
Description ASCmeI.T. 
Organisation University of Bath
Department Department of Psychology
Country United Kingdom 
Sector Academic/University 
PI Contribution This collaborative project is a spin-off from the seminar series and encourages members of the autism community to download a free app to answer the question: If there was one new technology to help people with autism, what would it be? The project aims to tap into the personal experiences and creativity of people with autism, and their families and teachers, to generate ideas about technological solutions that might help them and benefit others. The aim is to work with some of the ideas submitted to develop them further and bring them closer to reality. The project was conducted in partnership with colleagues at the Universities of Bath and Sussex, who received money from the EPSRC and ESRC IAA budgets respectively to fund different aspects of the project. Thus, we combined resources to support a larger project between us than would have otherwise been possible with individual budgets. £3k was secured from the University of Southampton Enterprise budget to: support initial design of the apps; initial trialling and use of the apps; purchase of Raspberry Pi starter packs as Prize Draw entries to encourage school submissions; and initial collation and analysis of ideas submitted.
Collaborator Contribution £16K from the University of Bath EPSRC IAA Fund was used to develop Android and iOS versions of the ASC me I.T. app; £2.6k from the University of Sussex ESRC IAA Fund is being used to support the collection and review of further ideas from school and community-based participants; make connections with potential developers; and initiate ideas for MSc Informatics project students at Sussex.
Impact Good, J., Brosnan, M., Yuill, N., Austin, L. and Parsons, S. (2016) Putting technology into the hands of the users with the ASCmeI.T. app. Workshop presentation at the CHI conference in California, 2016. Multi-disciplinary: Education, Psychology, Informatics, Research and Development, Industry (app developers)
Start Year 2015
 
Description ASCmeI.T. 
Organisation University of Sussex
Country United Kingdom 
Sector Academic/University 
PI Contribution This collaborative project is a spin-off from the seminar series and encourages members of the autism community to download a free app to answer the question: If there was one new technology to help people with autism, what would it be? The project aims to tap into the personal experiences and creativity of people with autism, and their families and teachers, to generate ideas about technological solutions that might help them and benefit others. The aim is to work with some of the ideas submitted to develop them further and bring them closer to reality. The project was conducted in partnership with colleagues at the Universities of Bath and Sussex, who received money from the EPSRC and ESRC IAA budgets respectively to fund different aspects of the project. Thus, we combined resources to support a larger project between us than would have otherwise been possible with individual budgets. £3k was secured from the University of Southampton Enterprise budget to: support initial design of the apps; initial trialling and use of the apps; purchase of Raspberry Pi starter packs as Prize Draw entries to encourage school submissions; and initial collation and analysis of ideas submitted.
Collaborator Contribution £16K from the University of Bath EPSRC IAA Fund was used to develop Android and iOS versions of the ASC me I.T. app; £2.6k from the University of Sussex ESRC IAA Fund is being used to support the collection and review of further ideas from school and community-based participants; make connections with potential developers; and initiate ideas for MSc Informatics project students at Sussex.
Impact Good, J., Brosnan, M., Yuill, N., Austin, L. and Parsons, S. (2016) Putting technology into the hands of the users with the ASCmeI.T. app. Workshop presentation at the CHI conference in California, 2016. Multi-disciplinary: Education, Psychology, Informatics, Research and Development, Industry (app developers)
Start Year 2015
 
Description Autism Conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact demo and publicity for free app to suppor technology development for Autism, developed from th eDigital Bubbles seminar series
Year(s) Of Engagement Activity 2016
URL http://ascme-it.org.uk
 
Description Brighton Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact About 300 people visited our demo exhibits on collaborative technology to support children in classrooms, including childrne with extra communication needs
Year(s) Of Engagement Activity 2017
 
Description Brighton Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Over 500 people visited our 'digital classroom' to find out how technology can support learning, and about our seminars and apps
Year(s) Of Engagement Activity 2018
URL http://www.brightonscience.com/events/bright-sparks-saturday-2018/
 
Description Digital Bubbles seminar series 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We held seven seminars to address core areas and debates within the 'autism and technology' agenda: 240 delegates attended in total and we supported 50 travel bursaries to enable PGRs/ECRs and community stakeholders to participate. A particular success of the series was the sustained involvement of stakeholders and ECRs/ PGRs throughout, enabling them to contribute to and participate in these important discussions. We also developed an international perspective with colleagues attending from Spain and Turkey. Academics and practitioners from an ERASMUS+ project entitled SMART-ASD (see SMART-ASD.EU) attended one of the seminars as part of their development days.

Discussion was a core feature of the seminars and we have published six short papers from the first six seminars with a further paper in progress based on the seventh seminar. All of these papers include the comments and feedback from speakers and delegates. Three of these papers already rank in the top 20 papers with the highest 'immediacy' i.e. downloaded the most within the first 6 months of being published. This illustrates the strong interest in the key messages arising from the seminar series.

One of our major objectives for the series was to build capacity in the UK autism and technology field by linking us as the organisers with (a) each other; (b) national and international scholars (c) local organisations and practitioners; and (d) early-career researchers and postgraduate research students. We have achieved this in many ways through multiple collaborative activities that took place during the seminar series as a direct result of people meeting at seminars, for example:
• Sam Holt's (ECR) current research collaboration with Professor Yvonne Rogers at UCL;
• Ian Hosking's (invited speaker) link with Sussex Community Trust paediatric dentistry for new funding bid to improve environments and address poorer health outcomes for children with autism;
• Nicola Yuill's (co-I) collaboration with members of Disability Trust (delegates) who support adults with autism;
• Research bids: Mark Brosnan (co-I) and Sarah Parsons (PI) to the Oak Foundation; Sam Holt (ECR) and Nicola Yuill (Co-I) to FIRAH [International Foundation of Applied Disability Research] with Ouriel Grynszpan;
• Sarah Parsons (PI) and Nigel Newbutt (ECR) involved in a short paper on Virtual Reality in Pediatric Psychology (for the journal Pediatrics) led by Thomas Parsons (invited international speaker) from the University of North Texas;
• Benoit Bossavit (PGR) presenting at workshop at CHI led by Judith Good (co-I) and Chris Frauenberger (invited international speaker);
• Members of the Autism Sussex adult support group (invited speaker) involved in the research of Harriet Hummerstone (PGR) supervised by Sarah Parsons (PI);
• Nicola Yuill's (Co-I) joint launch of new parent support services with East Sussex Local Authority;
• A member of Autism Hampshire (invited speaker) now regularly involved in teaching about autism for final year undergraduates at the University of Southampton with Sarah Parsons (PI);
• PGR delegates Chryssy Mangafa, Alaa Mashat, Alyssa Alcorn, Sam Holt connected to external examiners of their doctorates who were all speakers and / or organisers of the seminar series. They will be ambassadors for the field following the successful completion of their doctorates.
In addition to the new collaborative activities listed above, we note:
• The high numbers and high engagement of stakeholders at the seminars. Our seminar structure and methods (see above) show how to successfully engage end-users directly with academic research and at earlier stages;
• The ASCmeI.T. app could act as an e-participation model for other design challenges;
• The conversion of seminar materials into educational content;
• The potential of technology for health challenges in autism, e.g. dentistry and other surgical procedures.
Year(s) Of Engagement Activity 2015,2016
URL http://digitalbubbles.org.uk/
 
Description Science Festival event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Brighton Science Festival Bright Sparks event: about 100 people ([primary age children and parents) visited for activities including a stall displaying the ASCmeI.T. app developed through the Digital Bubbles series.
Year(s) Of Engagement Activity 2016
URL http://ascme-it.org.