A systems approach to understanding families of children with intellectual disability and/or autism

While it is widely acknowledged that all family members have a role to play in raising a child with Intellectual Disability (ID), research in the field has focused on the wellbeing of mothers and mother-child relationships. Working within a Family Systems theoretical framework, this thesis has posed systemic questions and examined subsystems and members of the family unit, neglected in existing research, in order to develop a more holistic understanding of families of children with ID. It has also contributed large-scale survey data on families, something which is limited in the UK. In Chapter 1 a review of Family Systems Theory (FST) and existing systems-informed studies was undertaken, highlighting many unexplored avenues for research and outlining important methodological considerations. Four empirical studies then followed (Chapters 2,3,4,5). In the first study (Chapter 2) the relationship satisfaction of parents of children with Autism Spectrum Disorder (ASD) was explored. Chapter 3 then presented an investigation of the psychological wellbeing of fathers of children with and without ID. Chapters 4 and 5 presented findings based on the primary data collected for the Cerebra 1000 Families study, a large-scale survey of UK families of children with ID aged 4-15 years. Chapter 4 investigated whether mothers’ perceptions of the functioning of three different family subsystems related to their overall rating of family functioning. The final study (chapter 5) then explored the psychological wellbeing of single mothers. In Chapter 6 the findings from the four empirical studies were discussed along with their implications for theory, practice and future research. Overall this thesis has contributed new knowledge in relation to the family systems of families of children with ID, and has rejected the prevailing narrative that raising a child with ID is always a negative experience.