Parental experiences of raising an autistic child in Ireland: A qualitative thematic analysis

Abstract

The quality of life of autistic children and their parents is impacted by the stress they experience, their coping strategies and the availability of professional health, social and educational support services. Recent changes in the structural organisation of child disability professional supports in Ireland mean that in-depth knowledge about current experiences of parenting autistic children is necessary. This qualitative study explored parents’ perceptions and experiences regarding their challenges, stress levels, coping strategies and professional support services. Semi-structured in-depth interviews were conducted with six parents of autistic children aged 4 to 16 years. Thematic analysis identified three core themes: ‘The Autism Journey: Challenges and Rewards’, ‘Navigating a Flawed Support System’ and ‘The Importance of Social and Professional Supports’. Findings emphasised that parents face endless challenges in caring for autistic children. Dealing with autism-based support services, however, is the greatest stressor experienced by parents. It revealed that the system to access services is experienced as difficult and parents consider it is operating inadequately. This reveals a pressing need to improve systems that provide professional support services to autistic children and their families. Lay abstract Parenting an autistic child can be a challenging experience. Parents of autistic children often require social and professional support to cope with the various stresses they encounter and to ensure their children achieve their optimal potential. Recently, the way professional supports are organised in Ireland has changed. Very little previous recent research has investigated parents’ experiences of raising an autistic child in Ireland. This study interviewed six parents asking them about their challenges, stress levels, coping strategies and their perceptions regarding professional support services. The data from these interviews were organised into themes. A major finding was that parents felt the healthcare system was failing to provide help for their children, and that support services in Ireland can cause more parental distress than dealing with their child’s difficulties. Other causes of parental stress included the child’s behaviours that they found challenging, stigma, a lack of awareness about autism and isolation. This study shows that both autistic children and their parents are at increased risk of developing mental health problems due to a flawed healthcare system that requires improvement urgently.