The importance of physician knowledge of autism spectrum disorder: results of a parent survey

Rachel A Rhoades, Angela Scarpa, Brenda Salley

Early diagnosis and referral to treatment prior to age 3-5 years improves the prognosis of children with Autism Spectrum Disorder (ASD). However, ASD is often not diagnosed until age 3-4 years, and medical providers may lack training to offer caregivers evidence-based treatment recommendations. This study tested hypotheses that 1) children with ASD would be diagnosed between ages 3-4 years (replicating prior work), 2) caregivers would receive little information beyond the diagnosis from their medical providers, and 3) caregivers would turn to other sources, outside of their local health care professionals, to learn more about ASD. 146 ASD caregivers responded to an online survey that consisted of questions about demographics, the diagnostic process, sources of information/support, and the need and availability of local services for ASDs. Hypotheses were tested using descriptives, regression analyses, analyses of variance, and chi-squared. The average age of diagnosis was 4 years, 10 months and the mode was 3 years. While approximately 40% of professionals gave additional information about ASD after diagnosis and 15-34% gave advice on medical/educational programs, only 6% referred to an autism specialist and 18% gave no further information. The diagnosis of Autism was made at earlier ages than Asperger's Disorder or PDD-NOS. Developmental pediatricians (relative to psychiatrists/primary care physicians, neurologists, and psychologists) were associated with the lowest age of diagnosis and were most likely to distribute additional information. Caregivers most often reported turning to the media (i.e., internet, books, videos), conferences, and other parents to learn more about ASD. The average age of ASD diagnosis (4 years, 10 months) was later than optimal if children are to receive the most benefit from early intervention. Most professionals gave caregivers further information about ASDs, especially developmental pediatricians, but a sizeable minority did not. This may reflect a lack of training in the wide range of behaviors that occur across the autism spectrum. Parents turned to outside sources to learn more about ASD. We recommend that all physicians receive specialized training about ASDs to improve upon early screening and diagnosis, and then advise caregivers about empirically-supported services.