Symptom Recognition to Diagnosis: Pathway to Care for Autism in a Tertiary Care Medical Centre

Abstract

Objective There is no systematic report on pathway to care in autism from tertiary care medical centers of India. The present study was aimed to evaluate the pathways to care among parents of children with autism-seeking treatment at a tertiary care medical center. Methods Cross-sectional, observational study involving parents of 38 children with autism spectrum disorder diagnosed with INCLEN diagnostic tool. Pathway to care was assessed using World Health Organization Encounter Form. Statistical Analysis IBM Statistical Package for Social Sciences (SPSS) 20.0 was used for analysis; categorical variables were assessed using Chi-square test keeping statistical significance at 0.05%. Results A total of 74% parents reported going to a general practitioner and 13% reported going to a child psychiatrist as point of first contact. Among them, 71% parents reported seeking care with a child psychiatrist in a tertiary medical center at the fourth point of contact. Also, 84% parents believed in biomedical explanation of autism. Majority of parents sought for speech therapy and medicines for their child with autism which is in tune with their biomedical explanation. Parents were the first to identify developmental concerns, average age of symptom recognition being 2.2 years. Average age of intervention initiation was 40 months, 8 months prior to diagnosis of autism. Conclusions Early symptom recognition and initiation of interventions is encouraging. Despite having a biomedical explanation of autism and ability to recognize developmental concerns, there is a lag of 4 years in diagnosis and reaching a specialized child psychiatry setup. This lag is a cause of concern owing to the impact on access to evidence-based interventions.