Seminar 7: Delegates’ Feedback & Summary

 

We wanted to support maximum engagement from delegates at the final seminar and so this was an invitation-only symposium with a small number of previous participants from each of the previous six seminars. Different groups of stakeholders who have been involved in the series were represented and 19 people attended on the day, including 4 organisers, 4 speakers, 5 postgraduate research students (PGRs) and early career researchers (ECRs), and 5 stakeholders.

The first talk was from the Digital Bubbles team [Sarah Parsons, Nicola Yuill, Mark Brosnan, and Judith Good] who gave an overview of the key messages and questions that had emerged from across the previous six seminars. The series has been a huge success, with over 250 participants attending, and 50 travel bursaries awarded to enable PGRs/ECRs and community stakeholders to participate.

The digital bubbles team has so far produced 5 short papers for the Journal of Enabling Technologies (one on each of the first five seminars) with two more planned to report on seminars 6 and 7! There is also a call for papers in Research in Autism Spectrum Disorders on digital embodiment which will further disseminate ideas discussed and presented at the seminars. Many new contacts have been forged through the series with different delegates writing, bidding, working, talking, examining, and planning together. Already there is an organic community of practice that has emerged from the series and this is an incredibly important and welcome outcome.

In terms of key messages or questions that emerged from the six seminars, it was a challenge to synthesise these across such complex topics. However, there was an absolutely central question that seemed to underpin many discussions:

‘Whenever you’re trying to develop technologies think about whether it will really improve someone’s life – or do you just think it will?’ (Participant, DB1)

The importance of ensuring that technologies adequately address this question was also summed up very powerfully by the following statement:

‘A child with autism only has one childhood’ (Participant, DB6)

This is a crucial reminder that children with autism are children first and not experimental subjects – we have to be clearer about what we are trying to aim for in order to ensure that needs and expectations are appropriately met and that valuable time is not wasted on things that may not be useful.
Four key questions were asked by the Digital Bubbles team to shape discussions for the day:

  • What does responsible innovation mean in this field?
  • What does it mean to be social?
  • What could be the focus for learning and pedagogy?
  • How can we think more holistically about engagement?

Seminar 7 Delegates

The other speakers on the day developed aspects of these questions in different ways through their talks. Chris Frauenberger discussed his participatory design research which includes working closely with children with autism. The children’s ideas for technical solutions were highly creative, individualised and revealed interesting preferences that really mattered to them. The process of sustained collaboration over time was very positive and rewarding, highlighting the importance of valuing the process as much as the outcome of design participation.

Ian Hosking and Jennifer Parry discussed the very real situation of dental anxiety for autistic children and young people and how technology could potentially be helpful as a way of preparing children for their visits to the dentist. This was a good reminder about the need to think more broadly about the needs being addressed in autism technology research, which tends to be dominated by a focus on social communication and interaction. By taking an engineering perspective, Ian provided a very interesting account of the ‘patient journey’ which involved trying to describe all of the specific steps that precede going to the dentist. This includes getting ready in the morning, travelling to the dentist, making the transition from car to building, from corridor to waiting room, from waiting room to clinic etc. It was a powerful illustration of how rarely such preceding experiences are reported or considered in the context of (for example) psychosocial or educational interventions for children and young people with autism.

Hanne de Jaegher pursued the idea of taking a more holistic approach by presenting a rationale and method for exploring a more ‘humane science of intersubjectivity’. In other words, it is important to move way from deficit-focused models of autism and towards ways of thinking, doing, and being, that respect and reflect differences in social attunement (with each other). Hanne presented, and we tried out!, the PRISMA method which is a way of enabling ‘participatory sense-making’ – a way of trying to ‘stand in the shoes’ of another person. This was a really powerful example of how creative thinking is needed to try to enable a deeper, more shared, and more attuned understanding of each other (autistic or not).

Seminar 7 PostIt notes

As ever, our delegates posted their thoughts and questions on post-it notes throughout the day reflecting some really valuable perspectives and issues, for example:

  • ‘Using ASC children’s interests to develop technology is key, but what if these are very limited or not easy to make social?
  • ‘What affordances make the technology autism specific? Is it possible to be autism specific?
  • ‘Never underestimate the power of play. Play is a very creative mode. It’s OK to start with basic building blocks and see what you can make.’
  • ‘Encourage people with autism not just to ‘look up’ but for people with autism to encourage others to ‘look up’ with them’.
  • ‘Assumption is that what the child with autism would design is different from what a person close to the child would design for them.’

We closed the day with a discussion about how the field should move forward and agreed to continue to keep in contact and to try to work on specific activities together in order to put our ethos, principles, and philosophies into action!