“I’m His Voice”: Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of Personal and Cultural Factors

To assess caregiver-reported barriers and facilitators to receiving a diagnosis of Autism Spectrum Disorder (ASD) and accessing services as well as the influence of personal and cultural factors.Participants included 29 parents whose children had been diagnosed with ASD between January 2019 and November 2021 while receiving primary care at one of two urban, hospital-affiliated clinics. Semi-structured interviews and surveys were conducted between May 2022 and June 2023 in both English and Spanish. Transcripts were coded and themes developed using thematic content analysis. In the survey portion of the study, 80% of parents said the experience of getting the diagnosis was “very easy/somewhat easy,” while 28% of parents said the process of accessing autism services was “very difficult.” Four general categories emerged from the qualitative analysis: (1) experience getting the diagnosis, (2) service navigation after diagnosis, (3) need for parent advocacy, and (4) perception of condition by others. Parents generally reported positive experiences with their pediatricians, but some felt their concerns were discounted due to personal factors. The most common frustration expressed was difficulty accessing Applied Behavior Analysis therapy after a diagnosis due to long waiting lists, staff turnover and poor quality. Many parents felt that it would be helpful to have a family navigator to assist with paperwork, insurance complexities, and service access. Parents reported many challenges obtaining an autism diagnosis as well as accessing services. Widespread system change will be required to meet the needs of families equitably and effectively.