Parent Perceptions About Communicating With Providers Regarding Early Autism Concerns

Abstract

BACKGROUND: Long delays between parents’ initial concerns about their children’s development and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although discussions between parents and providers about early ASD concerns can be difficult, they are critical for initiating early, specialized services. The principles of shared decision-making can facilitate these discussions. This qualitative study was designed to gain insights from parents of young children with ASD about their experiences communicating with primary care providers with the goal of identifying strategies for improving conversations and decision-making regarding the early detection of ASD. METHODS: Three 2-hour focus groups were conducted with 23 parents of children with ASD <8 years old. Qualitative analysis employed an iterative and systematic approach to identify key themes related to parents’ experiences. RESULTS: Eight themes related to communication about early ASD concerns emerged: characteristics of the child that caused parental concerns, the response of others when the parent brought up concerns, how concerns were brought up to the parent by others, parental responses when others mentioned concerns, information seeking, barriers to and facilitators of acting on concerns, and recommendations to providers. Parent responses suggest the need for increased use of shared decision-making strategies and areas for process improvements. CONCLUSIONS: Primary care providers can play a key role in helping parents with ASD concerns make decisions about how to move forward and pursue appropriate referrals. Strategies include responding promptly to parental concerns, helping them weigh options, and monitoring the family’s progress as they navigate the service delivery system.