Autism and Technology: Placing autistic people at the centre of research (or how we can move closer to this)

The field of autism and technology, or put another way technology used to help support autistic groups and individuals, is a field that has existed for over 40 years.  Over this period of time the field of research has grown and diversified in many ways.  Researchers first started looking at multimedia applications in the 1970’s and since then we have seen a range of technology used to help support (and enable) autistic groups.  In particular, researchers have looked at educational opportunities, testing social skills, supporting language skills and more recently routes to employment; all with the aid of technology. Each of these efforts have been within the context of supporting specific needs in relation to diagnosis (i.e. difficulties with social communication and interaction, repetitive motor movements and restricted, repetitive patterns of behaviour, interests, or activities; see this link for more information: https://www.autism.org.uk/about/diagnosis/criteria-changes.aspx ).  The range of technologies that have been employed within this field consist of: multimedia, virtual environments, virtual worlds (i.e. Second Life, Minecraft), virtual reality head-mounted displays and touch-screen devices.    

However, and despite the increasing and growing research in this field of 40 years, the evidence for outcomes using technology tools for autistic groups remains somewhat limited; as does the design and deployment of these technologies.  In addition, research examining the views and opinions of autistic groups is even more limited within this arena.  What this means is that the voices, suggestions and opinions of the key users of technology (designed for them) are not being effectively captured or used in framing research.  This has been changing (although slowly), and efforts are afoot to consider placing user groups (in this case autistic people and stakeholder groups) at the centre of technology designed and deployed with the aim to support them in areas of education.    

In a recent example that I’ve been involved with, we have been examining the potential of virtual reality (VR) head-mounted displays (HMDs).  Here we’ve (researchers and schools) been working to discover what the educational opportunities might be within this ‘space’.  As this field is at a very early stage of development (as our recent review published in the Journal of Enabling Technologies highlights the limited evidence-base: https://www.emeraldinsight.com/doi/full/10.1108/JET-01-2018-0004) we undertook a project that sought the views and experiences of autistic children in school settings.  In order to best understand the opportunities and limitations of VR HMDs use by young autistic people, what better way to go and ask them; examine it through their lived experiences.  Would they mind wearing the VR head-set?  Would they report enjoying the software/content displayed to them?  Would they like to continue using the VR HMDs?  Which device would they most prefer?  Without wishing to be too radical, we thought these questions would be best addressed in a place they were learning (i.e. school) and to ask them these important questions.  Results from this work are still being written up, but some overview information can be found here: http://static.ow.ly/docs/Study-newsletter-V2_7IVQ.pdf   

In doing this, and even before formulating these questions, I worked with a mentor.  Nothing too unusual in the research arena per se, but on this occasion, my mentor was also autistic and had a range of experience of working with technology.  By working with him in this context I was able to see things and learn more closely about ways the research might be undertaken, what ethical, health and safety obstacles I might have neglected to see, and other insights that were not even on my radar.  In short, by working with an autistic mentor, I was able to devise safe and ethical working practices in addition to ‘seeing’ and understanding constraints and problems with some of my research questions.  After this my research framework became more solid and autistic-focused.

This was only a starting point to involving autistic voices and a range of important stakeholders.  Autistic school children we also asked to contribute their views on what should be important in research like this.  Teachers were asked also.  Both groups were asked before, during and after the study.  In addition, pupils’ parents were invited to use, test and feed into the process form the outset at a ‘show ‘n’ tell’ event at the school.  Finally, the work was disseminated back to the autistic community and practitioners at a National Autistic Society event held in September 2018 (https://learn.autism.org.uk/ehome/technology-2018/agenda/).  Search #autismtech to see what people said/thought about the various presentations and work on display.    

While we are still in the process of writing up the results of our autism and VR-HMD study, I wanted to share aspects of our work that has sought to involve autistic participants (participation) and autistic voices in our research; especially as I feel this field can learn so much by doing so.  It also makes no sense to me to build a field of knowledge around autistic users of technology (and exploring the possible benefits therein), without first asking them to be involved in defining the research and participating in the generation of data.  We have firmly moved away from researching about autistic people and shifted research to researching with autistic people, as researchers, we stand to learn so much more (thus adding to the evidence in this field) and have far better reach and impact with our work in doing so.  I look forward to working with the autistic community (and their stakeholders) in future work. 
 

Link/Ref to JET article: 

• https://www.emeraldinsight.com/doi/full/10.1108/JET-01-2018-0004
• Bradley, R., & Newbutt, N. (2018). Autism and virtual reality head-mounted displays: a state of the art systematic review. Journal of Enabling Technologies.

Dr Nigel Newbutt is a senior lecturer / researcher in Digital Education at the University of the West of England (UWE), Bristol.  His research has involved working with a range of technology and autistic users with the aim to best understand how, where and why technology can play a role in educational opportunities.  He was also the Chair of Autus (https://www.autus.org.uk/) and now a trustee of the charity, who’s vision is to: create exciting opportunities for growth, learning and work for young autistic people; using innovative and engaging virtual environment to help build confidence and develop social communication, digital and employability skills.   

Contact Nigel: [email protected]

Nigel Newbutt

Senior Lecturer/ Researcher in Digital Education
University of the West of England (UWE), Bristol