Surviving or Thriving: A Constructivist Grounded Theory Study Exploring the Wellbeing of Older Autistic Adults

The British Medical Association (BMA) estimates around 1% of the UK population to be autistic (BMA, 2021). Despite autism being a lifelong condition (UK Gov, 2021) much of current autism research is focused on children. There is a paucity of research with older autistic adults (Mason et al. 2022. Mukaetova-Ladinska et al. 2012). There is a growing awareness of the richer perspective qualitative studies can provide into the lived experience of autistic individuals particularly in reference to unknown and underexplored areas (Schalkwyk & Dewinter, 2020). However, there is a lack of qualitative research exploring the views and experiences of autistic participants (Bolte, 2014, Pellicano et al. 2014).
Unfortunately, life expectancy and quality of life are significantly lower for autistic people than their neurotypical counterparts (Hirovikoski et al. 2016), and suicide is a much bigger risk within the autistic community (Cassidy et al. 2014, Cassidy et al. 2022, Mason et al. 2018). The purpose of this research is to explore the most important factors that assist autistic older adults in maintaining their own personal physical and mental wellbeing. This research answers international calls for research on issues affecting older autistic adults (Mason et al. 2022. Mukaetova-Ladinska et al. 2012. Piven & Rabins, 2011).
This thesis presents a constructivist grounded theory (Charmaz, 2006) project exploring factors that enable and inhibit the wellbeing of older autistic adults (aged 50+). In-depth semi-structured interviews which incorporated a person-centred design were conducted (17) with 14 older autistic adults (without an intellectual disability). Wellbeing experiences were analysed and highlighted a distinction: participants either ‘thrived’ or ‘survived’ post-diagnosis. The grounded theory presented in this thesis, ‘the thriving cycle’ proposes that for autistic older people to live well following a diagnosis, they need to thrive. The theory indicates what facilitating factors enable autistic older adults to thrive. This would lead to increased confidence and self-efficacy with increased feelings of empowerment which contribute to enhanced wellbeing.