Creative methods developed to facilitate the voices of children and young people with complex needs about their education: A systematic review and conceptual analysis of voice

Using ‘I am’ Digital Stories to facilitate autistic young people to have a voice in their transition to adulthood

“…These findings challenge the view that the voices of autistic children with complex needs, including those who do not use speech for communication, may be ‘too hard to reach’ within research and practice (Franklin & Sloper, 2009, p. 4; cf. Lewis‐Dagnell et al, 2023).…”

“…Although some young people may have had a less active role in developing their Stories, each Story was co-constructed with adults who knew the young people very well (e.g., familiar care staff and parents) and had built a relationship over time. Their knowledge and awareness of what the young person liked to do and choose was important for creating informed and authentic positive representations of the young person (Lewis-Dagnell et al, 2023).…”

“…While neurodiversity as a term is itself contested (Ne'eman & Pellicano, 2022), it broadly describes the reconceptualization of neurodevelopmental conditions as neurological differences that form part of natural human variation rather than as deficient or disordered ways of being, and as a political movement concerned with promoting and protecting the rights of neurodivergent people (e.g., Jaarsma & Welin, 2012). Accordingly, there is considerable interest in the methods and approaches used in research to ensure that a diversity of voices are appropriately included and represented (Lewis‐Dagnell et al, 2023).…”

“…Therefore, as emphasised by Morris (2003), ‘unless there is a specific focus on including children and young people with significant communication and/or cognitive impairments [sic], they will inevitably be excluded’ (p. 344). It follows that all forms of communication need to be valued and recognised for barriers to participation in research and practice to be removed (Lewis‐Dagnell et al, 2023). Accordingly, respecting voices that are harder to reach relies on a broader definition of voice, which includes the … ‘ability to express oneself and be heard by others, that can encompass typed text, non‐verbal communication, gestural communication or silence, which leaves the door open for a more expansive conceptualization of participation and engagement’ (Ashby, 2011, p. 10).…”

“…Although the schools used a variety of creative and visual methods to access autistic pupils' views, including Talking Mats, symbols, Picture Exchange Communication System (PECS) and switches, the degree to which the views elicited were given ‘due weight’ was questioned by the authors, specifically whether the pupils' views shaped the planning in their transition to adulthood. It is, therefore, crucial that research explores not only the development of inclusive methods, which enable autistic young people's voices to be accessed and heard, but also for their views to have a direct impact on the decision‐making process, that is to be listened to and acted upon (Lewis‐Dagnell et al, 2023). To empower the voices and perspectives of autistic young people, methods need to be created that are individualised to each young person, facilitate agency, and provide a holistic, strengths‐based account without reliance on spoken words (Hart, 2021; Morris, 2003).…”