This ESRC-funded PhD research sought to understand the lived experience of young people with autism as they left special school to join mainstream colleges of further education at the age of 16 or 17. I was concerned to privilege the point of view of the young people with autism and for this reason, a creative approach to developing a more ‘interrupted interview’ was designed1. By using a combination of visual methods, tablet applications and walking interviews2, different ways of engaging young people in the interview process were employed and allowed for a richer conversation.
Disability rights, the social model of disability and autism self-advocacy all lead us to consider carefully the representation of autistic views when we conduct research; this is coupled with an ethical imperative to examine our own methods. All the activities used to generate data had another purpose of helping to readjust the power relationship between the researcher and participant by sharing the process more with the participants themselves. Handing over the tablet to order the card sorts, to arrange the collage and to take photos all contributed to this changing relationship to the point where, in the walking interview, the participant was literally leading the researcher around unfamiliar territory.
Using collages to capture capabilities
By harnessing the likely inherent interest and skills of many young people with technological devices and using visually mediated methods to strengthen the communication of young people with autism3, a collage application was used on a tablet. This held some preloaded images of typical subjects studied at school and participants were invited to enlarge or shrink the images according to their interest in them. They were also encouraged to add their own choices through words or images either within or outside school. This resulted in a positive representation of the participant from the outset moving away from the deficit or medical model of autism.
Using card sorts to organise thoughts
Continuing the use of tablet devices and apps, the next activity led into a discussion about the impending transition to college and how the participants were feeling about it. Rather than try to discuss these feelings in a completely open-ended way, which could be problematic for anyone trying to imagine a future but for people with autism can be more so, pre-loaded cards were presented on the tablet. The first list covered suggestions about what they might be looking forward to at college and allowed us to discuss these things while the participant put the cards in a rank order. Similarly we repeated the exercise with concerns they might have about making the transition to college. Participants could also add to this list or delete items from it.
Conducting walking interviews to experience inclusion
Follow up interviews took place once the students had been at college for a term and I handed over the tablet to each participant to take photos of places they were taught or socialised in at college and if there were particular places they liked or avoided. This facilitated another useful discussion, minimising the need for eye contact or body language interpretation, and also handed over not only the symbolic power of the tablet and taking photographs but also the physical direction of the interview. By exploring their varied exposure to different parts of college a further dimension to the interview was added as well as easing the interview process itself. For example, one student was only taught in one corridor of a large further education college and was not allowed to go anywhere unsupervised by his learning assistant, whereas another was able to attend lessons and social spaces across the campus. By sharing their embodied experience of being (a)part of college and of their inclusion/ exclusion within it, the research was able to draw on a further dimension of student experience.
There are clearly limitations to these methods, perhaps the most obvious one of restricting or forcing choices through the collages and card sorts; only the most articulate participants added their own ideas. However, by scaffolding responses, the research was able to gather a broader range of voices, not just the more articulate autistic voices, and to hear those that may have been missed without that support. Challenging ourselves to think creatively about traditional qualitative methods helps us to listen to a wider range of autistic voices and deepens our understanding as we walk alongside them on their varied and unique journeys.
1 Shepherd, J. (2015) ‘Interrupted Interviews’: listening to young people with autism in transition to college, Exchanges : the Warwick Research Journal 2(2), 249-262.
2 Clark, A. and Emmel, N. (2010) Realities Toolkit # 13 Using walking interviews, NCRM.
3 Preece, D. (2002) Consultation with children with autism spectrum disorders about their experience of short-term residential care, British Journal of Learning Disabilities, 30(3) 97-104.
Submitted by Jacqui Shepherd, University of Sussex on Monday, 5th June 2017