Access to Care for African-American Families Affected By Autism: Pilot of an Event History Calendar Interview

Background: Diagnostic delays and compromised access to quality health care affect many African American children affected by Autism Spectrum Disorders (ASD). Recent studies have shown higher rates of co-occurring intellectual disability and epilepsy in African-American children diagnosed with an ASD as compared to Caucasian children. Objectives: The aim of this research is to develop and validate an instrument capable of ascertaining barriers to care relevant to early identification and treatment of ASD. This study provides initial descriptive data obtained from a newly-developed Event History Calendar Interview aimed at characterizing the process and experience of obtaining a diagnosis and accessing services for a child with ASD. Methods: Subjects were participants in AUTISM GENETICS, PHASE II: Increasing Representation of Human Diversity, an NICHD Autism Center of Excellent Network focused on gene discovery by accruing a biomaterials collection oversampled for African-American families, who are otherwise grossly under-represented in existing autism gene banks. This report describes validation data from the first 40 interviews of African-American parents with at least one child diagnosed with an ASD. The sample consisted of 34 male and 6 female children, mean age 10.9±4.3, mean IQ=83±15.2. 90% of the children were verbal; 78% of the children were language delayed (mean age single words=28.2±13.8 months; mean age of phrases=44.0±18.0 months). SRS-2 t-scores were calculated by parent-report (mean=75±9.2) and teacher-report (mean=70±10.6). All diagnoses of ASD were confirmed using the ADI-R and/or ADOS and expert clinician diagnosis. Results: Mean age of parent’s first concerns was 22.1±13.6 months; however average age of an official ASD diagnosis was not until 66.0±32.7 months. 50% of children in this sample were diagnosed with some other disorder before receiving an ASD diagnosis; 50% of those children were initially labeled ADHD. 38% of the sample reported visiting professionals 6 or more times for an evaluation before receiving a diagnosis for their child. Significant difficulties that contributed to a delay in diagnosis were: wait time to get an appointment (33%); insurance difficulties (23%); time commitment and scheduling difficulties (23%). Median reported income at time of first concerns was $27,500. Parental level of education at time of first concerns and age of first official ASD diagnosis was not significantly correlated (r=.08, p=.63). Mean age special services began was 50.0±23.5 months; all children had received some type of intervention at the time of the interview. In this sample, 15% of children were denied services at some point by the state-based early intervention program or the special school district. With the exception of one family, all had a primary care resource, all children had medical insurance (40% private or employer-based; 60% public, including Medicaid or state-based programs). Conclusions: The Event History Calendar Interview Method proved capable of identifying an average delay of 44 months between age of first concern and age of official ASD diagnosis in this minority family sample. This method holds significant potential for feasible identification of specific barriers to care that can be targeted to resolve delays and disparities in diagnosis and treatment for specific populations of children with ASD.