Jacqueline Perrin

This research is focused upon ‘a sense of purpose’, specifically to explore how this has been encountered by autistic young people (AYP). UK advice to schools on the teaching of spiritual, moral, social and cultural education (SMSC) no longer refers to encouraging students to find ‘meaning and purpose’ in their lives. Yet literature indicates that there are important benefits to be gained from investigating and developing these concepts. Research has been found most widely in the US on ‘purpose,’ situated within positive youth development and this study aims to add to the nascent area of exploring purpose with autistic adolescents in Britain. The second part of the study is an inquiry into AYP’s perspectives on curriculum development in this area.

Purpose has been associated with a range of life benefits, such as a longer life span and greater satisfaction in life. It is recognised to be an important predictive variable of physical and mental health (McKnight and Kashdan, 2009). It is widely acknowledged now, that children and adolescents with autistic spectrum disorders (ASD) are at increased risk of additional mental health disorders. A driving question behind this research has been whether this population suffer even more than those without autism, in the struggle to contend with life. Viktor Frankl (1946) famously stated: ‘Life is never made unbearable by circumstances, but only by lack of meaning and purpose.’ Now widely known, young people with autistic spectrum disorders (ASD), and often, particularly those previously diagnosed as (now outmoded) ‘high-functioning’, are at increased risk of anxiety disorders and other psychiatric co-morbidities.

This qualitative study, involving individuals aged 16 and above – in specialist school settings, in Southern England, will comprise semi-structured interviews and focus group sessions or follow-up interviews, so that young peoples’ understandings and thoughts can be determined. Methods will be properly decided, after an initial consultation phase with participants. Where individuals have encountered and engaged with purpose, this is to be analysed, along with finding out if further learning and exploration of the concept is perceived as apt. Views of young people may reveal whether there could be an advantage to accommodating work on purpose into the curriculum for this diverse group. If this were the outcome, other ideas to promote purpose may be explored with participants.

Encouraged by the work of Dr Liz Pellicano, University of London, and the UK based charity, Autistica, the study is designed to avoid a traditionally positivist and cognitive approach, commonly used in the field of research into autism in the past. Formally, research agendas have been predominantly led by non-autistic individuals and participants are inactive subjects. It is hoped that a participatory approach may yield relevant, non-hierarchical, and ethical research.