"I'm His Voice": Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of Personal and Cultural Factors.

Researchers interviewed 29 parents about getting an autism diagnosis and accessing services for their children. Most parents (80%) said getting the diagnosis was fairly easy, but many (28%) found it very hard to access services afterward. The biggest problem was long waiting lists for therapy, especially ABA therapy. Parents suggested having a 'family navigator' to help with paperwork and finding services would be very helpful.

This qualitative study examined parent perspectives on autism diagnosis and service access through interviews with 29 parents of children diagnosed with ASD between 2019-2021. While 80% found the diagnostic process relatively easy, 28% reported significant difficulty accessing autism services. Four key themes emerged: diagnostic experience, service navigation challenges, need for parent advocacy, and social perceptions. Parents praised pediatricians but some felt concerns were dismissed due to personal factors.

Major frustrations included long waiting lists for Applied Behavior Analysis therapy, staff turnover, and poor service quality. Parents identified a need for family navigators to assist with paperwork, insurance complexities, and service coordination.

Findings suggest need for systematic improvements in post-diagnosis service coordination and ABA therapy availability. Implementation of family navigator programs and addressing service quality issues could improve family experiences. Healthcare systems should examine both diagnostic pathways and service access barriers comprehensively.

Small sample size (n=29) from two urban hospital-affiliated clinics limits generalizability. Qualitative design provides in-depth perspectives but findings may not represent broader population experiences. Study type not clearly specified, and sample characteristics not fully described in abstract.

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.