AFA has long recognised that increasing awareness about autism amongst professionals (paediatricians, psychiatrists, psychologists, educators, and others) is key to ensuring that all children with autism receive an early and accurate diagnosis. In India, as in many other countries, paediatricians are often the first point of contact for families with a child with autism.
First Awareness Project among Paediatricians
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:
- To systematically raise the awareness and basic understanding of autism among paediatricians, and thereby facilitate an increase in the number of early and accurate diagnoses of the condition. It was also appreciated that raising awareness about autism would in turn raise awareness of the conditions most often mistaken for autism: mental retardation, hyperkinesis, attention deficit disorder, and would also increase the accurate diagnoses of these conditions.
- To systematically reach parents in all localities of India who had children newly diagnosed as autistic, provide relevant information about the condition, and provide information on how to receive further assistance. The same information would also be provided to parents of children who had already received a diagnosis of autism earlier and were now consulting as ‘follow ups’.
- To gauge the number of children newly diagnosed with autism in India during the upcoming year/s, in order to estimate the incidence of the condition in India
A baseline level of awareness was ascertained through a survey asking paediatricians to indicate from a list, the criteria they viewed as relevant in making a diagnosis and other questions related to the diagnostic process. Over 600 paediatricians 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 parents of newly diagnosed children.
A second round of surveys was conducted 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 which focused on understanding and interventions for autism.
Second Awareness Project among Paediatricians
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 paediatricians starting in 2007 with support from Action Aid and Irish Aid. All paediatricians registered with the Indian Academy of Paediatrics were invited to participate through an introductory letter and a copy of the awareness survey. Every paediatrician 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 some ‘early signs’ of autism. In addition, paediatricians received a copy of Autistic Spectrum Disorder: A Guide for Paediatricians in India. This booklet is a compilation of questions that are frequently asked during the period leading up to and just after a diagnosis of autism.
The information gathered through the project is currently under analysis. We are studying the awareness of autism, including diagnostic beliefs, diagnostic practices, and comparing the experience of diagnosis in 1998 and 2008 among other things. The data collected from this project was presented at the International Meeting for Autism Research in May 2010. The next phase of the project includes an adaptation of these materials and distribution of the same 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'.