Systems of Service Delivery for Care of Indian Children with Autism Spectrum Disorders

Background: India has the second largest population in the world. Till date there is no national data which reports the prevalence of ASD in India. However, there are a number of service providers like special educators, speech therapists, occupational therapists, psychologists and psychiatrists catering to the needs of the families. In this complex system of service delivery, parents often see multiple professionals, have to move across the country for consultation and sometimes when living in resource limited areas, have difficulty to access regular help, resulting in the need to deliver home based training programs for their children with ASD.

Objectives: This study aims to describe the current available pathways to care in India.

Methods: Review of literature published in India from centres managing children with ASD was reviewed. Retrospective and prospective data from our centre was reviewed. Various steps in the pathway to care were examined which included the diagnosis, assessment and management components.

Results: While most studies seem to find that symptoms are first detected by 12 to 18 months of age, the first contact is much later as parents would “wait and watch” for children to gain milestones. Very few parents have access to trained child mental health professionals across the country and if they do, they come for a single visit consultation due to financial burden. When they initiate consultation, the first contact person for 60% of families was a Pediatrician. Neurologist (11%) and speech therapist (11%) were the next preferred specialists whom family consulted initially; followed by ENT surgeons, psychiatrists, child and adolescent psychiatrist, psychologists and others. Parents consulted an average of 3.2 doctors (Range: 1-10) before receiving a diagnosis of ASD. Many families would not come to consult in academic institutes due to long waiting hours for consultation and would prefer smaller centers run by trusts, non-governmental organizations and private practitioners. Assessments would be done by professionals systematically; however, families were not adequately satisfied about the intervention methods advised. The need for multidisciplinary inputs and resource limitation brings in enormous pressure on the families who then practice home based intervention methods. Education system is supportive to children with special needs with the government following inclusive education. There are currently very few government funded ASD research programs across the country.

Conclusions: Though awareness about ASD is good, lack of resources makes it a challenge to practice good service delivery. There is need to improvise public programs, promote awareness, advocate the importance of early intervention for children with ASD and provide well integrated and organized pathways to care.