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'