Psychological needs of neurotypical family members of individuals on the autism spectrum

Chapter 1 reviews the psychological needs of family members of individuals with Autism Spectrum Disorder (ASD). A systematic search strategy was followed and 12 studies were reviewed which were published since a review by Tint & Weiss in 2015. The synthesis discusses relationships between the difficult experiences and stress, coping mechanisms, and their link to resilience and reduction of stress in parents.
Recommendations from Tint & Weiss’ (2015) review which concerned mostly family members of adults with ASD, are reiterated by the presented review which contained research where the family member with ASD was a young person. Further qualitative research needs to be conducted in order to broaden the knowledge base and aim to understand the real life experiences of family members in order to develop the appropriate support to prevent escalation of family members’ difficulties.
Chapter 2 addresses the gap in the literature of qualitatively involving siblings in research as previous studies largely gathered quantitative data from parents about siblings as opposed to directly. Photovoice (2016) was used as a photo elicitation method which emphasises participant involvement in both gathering data and analysis. 5 siblings of children with ASD took photographs answering the question ‘what is it like having a brother with autism?’ before completing an individual interview and group session where participants themselves brought their photographs into overall themes. A thematic analysis revealed main themes of focussing on their brother, difficult times, coping mechanisms, and ‘it’s not all bad’.
Clinical implications and suggestions for resilience-based interventions are discussed, with reference to supporting previous findings from chapter 1.
Chapter 3 presents two executive summaries, one written to be appropriate for young people, and one appropriate to a parent, carer, or professional reader. These are written with the main aim of disseminating within local CAMHS services. NB: Papers within this thesis have been written with the intention of submission for publication to Autism: The International Journal of Research and Practice. Extensive author guidelines for manuscript submission can be found in Appendix A, and have been followed as far as is compatible with the purpose of university submission.