Professional Awareness Campaign and Research Project:
A Decade of Data

AFA has long recognized that increasing awareness of autism among professionals (pediatricians, psychiatrists, psychologists, educators, and others) is a key to ensuring that all children with autism receive an early and accurate diagnosis. In India, as in many countries, pediatricians are often the first point of contact for families with a child with autism. From 1998 to 2001 Action For Autism received a grant from the Rajiv Gandhi Foundation to conduct an awareness project among paediatricians across the country with the following three objectives:

1) To systematically raise the awareness and basic understanding of autism among pediatricians, and increase the number of early and accurate diagnoses of the condition autism. By design, raising awareness of autism will also raise awareness of the conditions most often mistaken for autism: mental retardation, hyperkinesis, attention deficit disorder, and should also increase the accurate diagnoses of these conditions.

2) To systematically reach parents in all localities of India who have children newly diagnosed as autistic, provide relevant information about the condition, and provide information on how to receive further assistance. Also, to provide this same information to parents of children already diagnosed as autistic who are seen for follow up.

3) To estimate how many children in India during the upcoming year are newly diagnosed as autistic in order to estimate the extent of the condition in India.

A baseline level of awareness was ascertained through a survey asking pediatricians to indicate, from a list, criteria they viewed as relevant in making a diagnosis and other questions related to the diagnostic process. Over 600 pediatricians responded to the survey. Participants were then provided information on autism, diagnostic procedures and tools (the DSM-IV criteria and the Checklist of Autism for Toddlers), and information that they could share with newly diagnosed parents. A second round of surveys was sent to determine whether any changes in beliefs could be documented. Participants were subsequently sent an additional resource that they could share with parents and other professionals, focused on understanding autism and interventions for autism. The results of these two surveys were compiled and submitted in a report to the Rajiv Gandhi Foundation.

Based on the positive response that AFA received to this project, we undertook a second awareness project among pediatricians starting in 2007 with support from Action Aid and Irish Aid. Every pediatrician registered with the Indian Academy of Pediatrics was invited to participate through an introductory letter and a copy of the awareness survey. Every pediatrician who responded to this letter was then sent information on autism. Specifically, doctors received a poster in Hindi and English that could be placed in their office, depicting different signs of autism. In addition, paediatricians received a copy of Autistic Spectrum Disorder: A Guide for Paediatricians in India. This straightforward booklet is a compilation of questions that are frequently asked during the period leading up to and just after a diagnosis of autism. We are currently in the process of comparing awareness of autism, including diagnostic beliefs, diagnostic practices, and experience in diagnosis between 1998 and 2008. These data were presented at the International Meeting for Autism Research in May 2010.

Our next phase includes an adaptation of these materials and distribute them to professionals in other fields as well as continued contact with paediatricians in India.

Download a copy of Autistic Spectrum Disorder: A Guide for Paediatricians in India
Download the poster 'Watch for the Signs of Autism. Detect Early' (English version)
Download the poster 'Watch for the Signs of Autism. Detect Early' (Hindi version)
Download the powerpoint presentation from IMFAR, 'A Decade of Data'