A phenomenological study of parents of autistic children’s experiences with safety
Autism is a complex problem with a significant global burden with increasing prevalence. Autism is a complex disorder with varying presentations. Autistic children are most often cared for by parents who, at the time their child is diagnosed, are overwhelmed and have limited knowledge of autism and the potential safety issues that exist. Safety may not be an immediate consideration while they learn to cope with the diagnosis and what it means for them and their family. It is unknown if healthcare providers are communicating enough about safety issues specific to autism to give these parents appropriate anticipatory guidance during check-ups. A review of the literature reveals limited recommendations for the education of parents of autistic children about how to manage safety concerns specific to autism or what safety issues to anticipate once their child has been diagnosed with autism. During this phenomenological study, parents of autistic children were interviewed. The study explored the safety issues they have experienced with their child and where they obtained information about safety specific to autism. Ricoeur's hermeneutic phenomenology method was used to interpret the data. Two underlying structures which demonstrated the trajectory of the experience were: lost/ finding our way and battle-ready/battle weary. The phenomenological themes within battle weary included: living with fear, living with uncertainty, and living with disappointment. The participants provided recommendations for other parents and healthcare providers to help keep autistic children safe. This study illustrates the unique perspective of parents of autistic children concerning safety.