Factors Influencing the Autism Spectrum Disorder Diagnostic Process: Examining the Impact of Racial Identification and Patient-Provider Relationships on Diagnostic Barriers in a National Sample

Background and Purpose: Obtaining a diagnosis of Autism Spectrum Disorder (ASD) can be a significant challenge for parents. Parents often report experiencing a number of barriers throughout the process, such as long delays, many appointments, and negative experiences with providers, often leading to dissatisfaction and higher stress. The complexity and variability of the ASD diagnostic process introduces the potential for systematic disparities; however, little is known about the specific mechanisms underlying difficulty in this process. The purpose of this study was to examine whether racial identification and early patient-provider relationships (i.e. at the time of parents’ first developmental concerns) are associated with increased difficulty experienced throughout the ASD diagnostic process.

Methods: Parents were recruited using SPARK (Simons Foundation Powering Autism Research for Knowledge), a national registry of individuals with ASD and their families. A total of 444 parents were recruited with children under the age of 9 who had obtained their formal ASD diagnosis within the past 3 years. All participants were administered a survey covering demographic information, detailed characteristics of the diagnostic process, and measures of trust and communication with their child’s pediatrician at the time of their first developmental concerns. Multiple regression analyses were used to examine the influence of racial identification, patient-provider trust, and patient-provider communication on diagnostic outcomes (e.g. age at formal diagnosis, number of professional visits, etc.) and parental perceptions of the process (i.e. stress and satisfaction).

Results: Results revealed small but significant differences in difficulty by race, such that Black families reported significantly lower stress than white families (β = -.15, p = .022). Better quality of communication with the child’s pediatrician at the time of first concern was significantly associated with greater overall satisfaction with the diagnostic process (β = -.25, p < .001). Better communication was also associated with the likelihood that formal screening procedures were completed during the first professional visit when developmental concerns were raised. Families with patient-provider communication ratings at one standard deviation above the mean were 13 times more likely to have completed formal screening procedures during their first visit (B = .053, p < .001, OR = 13.69). Higher quality communication and higher degree of trust were associated with fewer instances where parents had to insist on referrals (β = -.30, p < .001; β = -.28, p < .001).

Conclusions and Implications: Findings indicate clear disparities in diagnostic difficulty by race. In addition, trust and communication between pediatricians and parents may have some bearing on difficulty experienced by parents throughout the ASD diagnostic process. One particularly notable finding is the relationship identified between higher quality communication and the completion of formal screening procedures at the time developmental concerns were first raised. Formal developmental screening is a critical first step of the ASD diagnostic process, which indicates a potential for systemic barriers during initial consultations. Social workers can use these findings to improve patient-provider communication channels and strengthen systematic screening procedures in pediatric settings to reduce barriers to the initiation of the ASD diagnostic process.