Satisfaction with the Diagnostic Process of Autism Spectrum Disorder: Experiences of Parents in India

Background:

There is a paucity of research regarding the experiences of parents receiving diagnostic evaluations for autism spectrum disorders (ASD) from developing countries, and even fewer studies examining parental satisfaction with the diagnostic process. Parental satisfaction with the diagnostic process may determine how families accept the diagnosis, proceed with the treatment for their child, and develop relationships with service providers.

Objectives:

To examine the barriers to early identification of autism and the factors influencing parental satisfaction with the diagnostic process.

Methods:

85 children with a diagnosis of ASD, as per the DSM 5 criteria, aged 2 to 12 years were recruited from the Department of Pediatrics of a tertiary care hospital in North India. The exclusion criterion was presence of a comorbid medical diagnosis. An open ended parent questionnaire was used to elicit information regarding parental concerns about child's behavior and development, details of professionals consulted, investigations requested, diagnosis given, treatments suggested, and the time taken to get a formal diagnosis. Parents were asked to report their level of satisfaction, on a 3-point scale, with the diagnostic evaluation process. Previous medical records were used to corroborate parental reports. The study was approved by the ethics committee of the Institute.

Results: Parents usually waited 7 months from the time when they first had concerns about their child’s development and seeking professional help. On average, parents consulted a professional when their child was 2.72 years (SD=1.47). Parents consulted 3.60 professionals before getting an ASD diagnosis and the most frequent professional consulted was a pediatrician (69%) followed by a speech and language therapist (11%). The delay between initial parental concern and the child receiving a formal diagnosis of ASD was 2.68 years (SD=2.02). A significant time lapse of 1.96 years (SD=1.34) between age at first consultation and final diagnosis was also found. Surprisingly, no decrease in the time taken to get a diagnosis of ASD from a previously published study in India was found (Daley, 2004). The most common misdiagnosis was attention deficit hyperactivity disorder (ADHD) followed by developmental delay. Majority (55%) of the parents reported dissatisfaction with the process of getting a diagnosis of ASD and were much less likely to be satisfied if they had been prescribed medications (χ²= 5.28, p=.022), consulted multiple professionals (χ²= 25.7, p=.0001), and had been advised several investigations (χ²= 4.10, p=043). Multiple regression analysis revealed that consulting multiple professionals emerged as the only significant predictor (F= 35.80, P=.0001) and it explained 30% of the variance in overall satisfaction level of parents.

Conclusions:

Obtaining a diagnosis of ASD in India continues to be fraught with delays, multiple visits to health professionals, medical investigations, prescriptions, and therapies. The prolonged diagnostic process not only delays initiation of appropriate interventions but is also associated with feelings of frustration and dissatisfaction among the caregivers.