Parental concerns of children with ASD by age: A qualitative analysis

Background: Eliciting parents’ concerns about their children is an important initial step in the ASD diagnostic process. This information is often collected through forced-choice questionnaires utilizing professional terminology and may limit the potential concerns that can be reported. Parent concern studies to date have largely used deductive qualitative methods with only one age group of children. Inductive qualitative studies are needed to examine parental concerns of children with ASD across age groups with one coding scheme. Method: We used an inductive qualitative analysis process to analyze concerns reported by parents of children ages 1–11 years on intake forms (n = 455) at an urban outpatient ASD specialty clinic. Analyses were based on three age groups (toddler, preschooler, middle childhood). Results: Using conventional content analysis, 12 categories of concerns emerged from parents’ responses: communication, social, behavioral/emotional, cognition, life skills, atypical behaviors, sensory, academic, health, seeking diagnostic clarity or resources, developmental, and motor skills. We found that parents reported the same concerns about their children across age groups in six of the 12 categories. The biggest difference in reported concerns across age groups was that parents of children in the preschooler and middle childhood groups reported a greater number of concerns related to mental health than parents of toddlers. Conclusion: Our analysis yields specific information about similarities and differences in parents’ concerns depending on their child's age. Ensuring that ASD evaluations are tailored to children's unique needs has implications for timely diagnosis and access to care.