Medical care experiences of children with autism and their parents: A scoping review

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent-reported problems in parent-provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers.