Innovative technologies for autism: critical reflections on digital bubbles

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.

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.