Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents

Abstract

Objectives: The objective is to examine the experiences of parents regarding receiving a diagnosis of autism spectrum disorder (ASD) for their child and the factors influencing parental satisfaction with the process of diagnosis. Methodology: Eighty-five children (2–12 years) with ASD (DSM 5 criteria) were consecutively recruited from the department of pediatrics of a tertiary care hospital in north India over 2 years. A semi-structured questionnaire was used to elicit information regarding early developmental concerns, age at the first visit to a professional, kinds of professionals consulted, diagnoses considered, and time taken to receive a definitive diagnosis of autism. Parents were asked to self-report their level of satisfaction with the diagnostic process on a three-point scale. Results: Overall, the mean age at first parental concern was 2.16 years (standard deviation [SD] = 1.04). Parents on average waited for 7 months before consulting a specialist. The mean age of diagnosis was 4.67 years (SD = 2.42). Analysis of diagnoses received before the diagnosis of ASD revealed that despite early parental concerns, one-fourth did not receive any specific diagnosis, one-fourth of the parents were told that their child was developing normally, and the majority were misdiagnosed (42.4%). A definitive diagnosis of autism took nearly 2½ years from the time when parents first started to have concerns about their child's development. The majority (51.8%) of the parents reported being dissatisfied with their diagnostic experiences, and the level of satisfaction was primarily explained by the number of professionals consulted for a diagnosis of autism (F = 6.54, P = 0.012). Conclusions: The findings underscore the need to educate primary care clinicians regarding the early signs of autism and to be respectful of parental concerns to make a timely diagnosis of autism and initiate evidence-based early interventions.