The transition to adulthood for autistic youth: a parental perspective

Introduction. This thesis aimed to explore parental perspectives on the transition to adulthood for autistic youth. This is important given the centrality of parents in youth’s lives, and the family transition occurring during this time of their youth’s development. The transition to adulthood in the context of this research was viewed as both a developmental shift in life stage, and as a multitude of service shifts.

Methods. This thesis is a culmination of two research studies. Study 1 is a systematic review and thematic synthesis centred on parental experiences of their autistic son/daughter’s transition to adulthood. It specifically aimed to identify parents’ experiences of their support and caregiving roles during this transition, and how this transition impacts them. Study two aimed to elucidate the experiences and perspectives of parents of autistic adults with an intellectual disability on the transition to adulthood and adult services. This study is a grounded theory study deemed necessary due to the limited research base exploring this phenomenon with this specific population subset, and within an Irish context.

Results. The findings of study one indicated numerous parental roles undertaken during the transition to adulthood. It highlighted the significance of parents within this transition in fighting for access to appropriate services, in spearheading the planning and preparation for the transition to adulthood generally, and in continuing to plan for their youth’s future care as their ultimate demise becomes more apparent during this time. The impacts of this transition on parents’ psychological wellbeing, life circumstances and relationships are vast. Study two highlighted the complexities of transitioning in an Irish context, and how parents and families adjust to changes in this complex process. A model for familial adjustment in the transition to adulthood was developed.

Conclusions. This research highlighted several areas requiring attention when considering parents and family’s needs as they navigate transition. Above all else, two points are clear: 1) parents and families require a greater level of targeted support during this time; and 2) the transition process requires more clarity and transparency so that families are informed with regards to the future of their child.