Family relationships and Autism Spectrum Disorder : Lived experiences of young people with autism and their families

There is a developing scholarship in health psychology in investigating family members’ perspectives on how autism impacts relationships between family members (e.g., partner/couple/spousal dyad relationships, sibling dyad relationships, parent-child dyad relationships), and the family as a unit. Research into the lived experiences of people with autism and family members remains scant and deserves attention. More notably, there is a dearth of literature of the voices of young people with autism and their lived experiences of family relationships. Without the insights generated from engaging with young people with autism and family members within a qualitative framework, it can be difficult to develop strategies for working effectively with this group.

This thesis reports on a qualitative study which responds to this gap in the literature. The study investigates how autism impacts the relationships between family members, and the family as a unit. It gives a voice to young people with autism and family members, adding greater depth to the quantitative research findings presented in the literature. The study considers the perspectives of twelve mothers, twelve fathers, nine siblings, and eleven young people in families who have an autism diagnosis. A phenomenological approach supports the research in departing from the natural sciences and focuses on the phenomena or lived experience (everyday world) of an individual. The study uses encouragers and open-ended questions to engage the participants in the research and to generate rich data for storytelling from their shared and diverse experiences. Data were collected, analysed, and interpreted using several grounded theory and phenomenological data collection and analysis methods.

The voices of young people with autism and their family members offer insights into how they perceive and experience autism as a way of being in the world, which is often different from others around them, influencing how they think, feel, act, and communicate. Thematic presentation of the findings highlights how family relationships were impacted by physical, emotional, and social behaviours of the young person with autism. Despite the impacts that autism had on the relationships between family members, and the family as a unit, most families in the study navigated these impacts effectively. Families achieved this when all members in the family worked together as a unit. Family members concentrated their efforts to create positive time together. This strengthened the relationships between family members, and the family as a unit.

The findings from this study provide useful insights for family practitioners to structure interventions with families with a member who is a young person with autism. A conceptual framework was generated from the key study findings to indicate how autism impacts on relationships between family members, and the family as a unit. The conceptual framework offers new insights and ways of understanding the factors that have an impact. Suggestions for how the conceptual framework can be translated into practice principles and applied as a practice model for intervention with families are provided. The model can assist practitioners to reflect on the steps they could take to facilitate change in families. The model fills a gap in knowledge by providing an approach to practice for enhancing and strengthening family relationships in families with a member who is a young person with autism, a task thus far not addressed in the literature. The conceptual framework and practice model have direct relevance to practitioners working with young people with autism and their family members in a therapeutic setting. The model and accompanying strategies for practice can be used to inform assessment, case management, group work, and therapeutic work with families as well as with individual family members. It could also be used to develop group work programs, such as groups with fathers, groups with siblings, and groups with adolescents with autism.