Diagnostic Process and Barriers Among Chinese-American and Korean-American Parents of Children with Autism

We sought to understand the experiences of Chinese-American and Korean-American parents of children with autism, including their initial concerns regarding their child's development, reported health professionals' responses to these concerns, diagnostic barriers, and factors associated with early autism diagnosis.

We designed a survey with support from an expert advisory group and Asian-American parents of children with autism. We measured 3 time points of diagnostic history, areas of parents' concerns, professionals' responses to their concerns, 15 types of diagnostic barriers, and professionals' helpfulness. We used descriptive and independent t tests to analyze data from 28 parents of children with autism.

Most of the parents (86%) had early concerns about their children's developmental delays and expressed their concerns to health professionals. However, approximately 60% of the parents reported that the professionals did not conduct developmental screenings or make referrals to specialists. The most common diagnostic barrier was the stress of the diagnostic process, followed by navigating health care systems. Parents who required interpreters noted poor quality and unavailability. Early child developmental concerns were associated with early autism diagnoses.

Although many Chinese-American and Korean-American parents had early concerns regarding their child's development and shared their concerns with health care professionals, parents encountered many barriers, including the stress of the diagnostic process. Chinese-American and Korean-American parents with limited English proficiency required additional support. Health care professionals' active listening and responses to parents' concerns can promote early diagnosis.