Using a Social Story™ with an adult diagnosed with a Learning Disability and Autism Spectrum Disorder: A qualitative analysis of a mother and daughter’s experience

Literature Review: A meta-ethnography synthesised nine papers to explore the question ‘How do family members of an individual with an autism spectrum disorder (ASD) make sense of their experience?’ Papers included the experiences of parents, grandparents and siblings of an individual with ASD. Reciprocal translations synthesised eight themes; autism is not our relative, family life revolves around autism, the stress and strain of being a family with autism, tolerating that autism can bring aggression, families’ accepting and seeking to understand autism, families’ celebrate their relative’s achievements and cherish happy moments, feeling judged and isolated by others, and fighting an inaccessible system. These themes provide insight into families’ experiences and were considered in relation to a model of parental stress (Deater-Deckard, 1998). Recommendations for more qualitative research in the UK were made. Research Report: Background: Social Stories™ are an intervention which provides contextual information to individuals with ASD (Gray & Garand, 1993). The evidence base for use with adults is limited and little is known about the experience of using this intervention. Aim: This paper asked “What are the experiences of an adult diagnosed with a Learning Disability and ASD, and their carer who have used a Social Story™?” Design: A participant and carer used a Social Story™ and participated in a semi-structured interview. Thematic Analysis (Braun & Clarke, 2006) was initially undertaken and Interpretative Phenomenological Analysis (IPA, Smith et al., 2009) was subsequently undertaken to allow a more interpretative analysis of the data. Results: Thematic Analysis highlighted the explicit cognitive behavioural, information processing explanations of the story’s benefit. In contrast, the IPA illuminated a relational aspect of using the story, reflected in the over-arching theme; ‘need to contain separation anxiety’. Conclusion: These two psychological processes may be occurring in parallel when using a Social Story™ and this area requires further research. Critical Appraisal: This paper offers reflections on the process of undertaking the thesis.