Autistic and Not Lonely: A Creative and Participatory Exploration of How Autistic Adolescents Experience Loneliness

An overview of assessment tools which measure loneliness and belonging, with critique of their design and suitability for autistic clients found that the experience of loneliness for autistic adolescents has predominantly been studied and measured with the use of traditional standardised loneliness scales. These measuring instruments have neither been designed for, nor validated by autistic people. This study will use a participatory and inclusive framework to design a new loneliness scale based on a reframed conceptualisation of loneliness from an autistic point of view. Identifying feelings of isolation and loneliness with a suitable scale can be useful to support early interventions and the promotion of strategies that foster wellbeing and connection, having a positive impact on the daily lives of autistic people. The design of the new loneliness scale will be guided by literature for best practices in scale development and will follow two stages: generation of first draft and theoretical analysis. The development of a suitable loneliness scale for autistic adolescents not only allows for a more accurate picture of the subjective experience of loneliness, but also addresses concerns of the autistic community regarding the use of ambiguous language and unhelpful style of responses that make standardised measures confusing and frustrating for autistic people, ultimately generating unreliable results. Its further development and application might also be useful to enhance the understandings of loneliness for autistic individuals and to inspire research that have autistic views and perceptions at their centre.