Exploring the routine vaccination experience of Australian autistic children and their families: A qualitative study

Abstract

Autistic children, adolescents and their younger siblings are less likely to be fully vaccinated compared to their peers in the general population. A focus on the influence of the unfounded link between the measles, mumps and rubella (MMR) vaccine and autism has distracted from consideration of unique family experiences and autistic-child related factors, such as emotional and behavioural differences, that may influence caregivers’ vaccination decisions. Without an understanding of the unique challenges and experiences of families with autistic children along the vaccination journey, the scope for appropriate, targeted interventions to support them is limited. To address this gap, in this qualitative research study we explored factors that impact the vaccination journey for autistic children and their families in an Australian context. Participants included 16 caregivers (15 mothers; 1 father) of 25 children who had a diagnosis of autism. Seven families had multiple autistic children. Participants shared their perceptions, experiences, and anticipation related to childhood vaccinations and vaccinating their autistic child and their siblings. Conducting thematic analysis, we identified four themes, comprising eight subthemes. The primary themes were 1) caregiver upskilling and self-assurance, 2) acknowledging unique differences amongst autistic children, 3) trouble behind and trouble ahead, and 4) managing sensory overload. Through these themes, we describe the unique needs of autistic children and their families with regard to emotional and sensory aspects of the vaccination visit across settings. We conclude by making recommendations for adaptation of vaccination services to incorporate the autistic perspective and lived experiences of families of autistic children.