Research on Autism in India
In
general, relatively little has been written about on autism in developing
countries as compared with what has been published on autism in North
America and Europe. However, of all the developing countries, India
has by far the greatest wealth of research articles, with over 56
articles, chapters and books which relate to the topic. Interestingly,
much of this literature appears to go unnoticed by Indians, and there
have been consistent references to many of these publications with
comments such as "probably one of the initial attempts in Indian
literature to describe and discuss" the disorder. In addition
to these published articles, there have been smaller, unpublished
research studies, several of which Action for Autism has been involved.
AFA
has a longstanding committment to research in the field of autism.
We strongly believe that research in all areas of development, language,
socialization, family functioning, and diagnosis, as well as more
basic research in areas such as genetics, functional magnetic resonance
imaging (fMRI), and other more specialized technologies can help us
better understand both the phenomenology and treatment of people with
autism. With its vast network of families throughout South Asia and
connections to families throughout the world, AFA has been pleased
to participate in many collaborative research projects, as well as
provide support to visiting scholars from abroad. We learn greatly
from these research collaborations, and look forward to future opportunities.
Research
conducted by AFA or in collaboration with AFA:
Characterizing
and Improving Face-processing Skills in Children with Autism
Mother-Child
Interaction Programme Research Project
The
Professional Awareness Campaign/Research Project
Language
and Autism: A Case Study
From
symptom recognition to diagnosis: Children with autism in India. (2004)
Social Science and Medicine 58 (7), 1323-1335.
(requires
Adobe Acrobat)
The
need for cross-cultural research on pervasive developmental disorders.
(2002) Transcultural Psychiatry 39 (4), 532-551. 
(requires Adobe Acrobat)
Diagnostic
Conceptualization of Autism Among Indian Psychiatrists, Psychologists
and Pediatricians. (2002) Journal of Autism and Developmental Disorders,
32 (1), 13-23.
(requires Adobe Acrobat)
Other
Research of Note:
Unstrange
Minds: A Father, a Daughter, and a Search for New Answers
First Indian study of genetics of autism
CALCUTTA, India: In the first study of the genetics of autism in India,
scientists in Calcutta have found that some fathers may transfer a version
of a gene that makes their children susceptible to autism...Read
the full story at Autism Connect
Neurodevelopmental Disabilities
among children in India
Given current epidemiologic estimates, there are approximately
1.7 million individuals with autism in India. The primary objective
of this research project is to assess the screening and diagnostic prevalence
of neurodevelopmental disorders, including autism, in children between
the ages of 2-9 in India and gain information on risk factors in these
children. The investigators will develop a novel neurodevelopmental
disability screening tool and consensus clinical criteria, and validate
these instruments so that they can be used in as a diagnostic instrument
for further evaluation of the prevalence of autism in this country.
In addition to studying the prevalence of autism in Indian, the investigators
will also identify the full clinical spectrum of autism using their
test instruments. In addition to case ascertainment, potential risk
factors for autism, including infections, nutritional deficiencies and
genetic factors will be identified through open ended interviews with
health personnel... Read
the full description at the Autism Speaks website
The
First Reference to Autism in the Indian Literature?
Tamara C. Daley, Ph.D.
Note:
We appreciate appropriate reference this article as originating from
the Action for Autism website.
While of
little practical interest, it is nevertheless intriguing to look back
at the history of Autism, and particularly the history of Autism in
India. Since the late 1950's, articles have appeared in Indian medical
and social journals and books in which the authors describe cases of
pervasive developmental disorder, using the terminology of the day.
However, it is also interesting to ponder the possibility that reports
of what we now call "autism" may have appeared under different
names prior to the 1943 article in which Leo Kanner named it so.
In possibly
the first reference to autism and the pervasive developmental disorders
in the Indian literature, a report comes from a Viennese pediatrician
A. Ronald, working in Darjeeling at the time. Ronald presented an overview
of the detection, causes, types and treatment of what he termed 'abnormal
children' in the very same year as Kanner's hallmark publication: 1944.
This article holds significance not only for its potential early reference
to autism, but because it is one of the earliest scholarly discussions
of child mental health in the leading medical and social journals of
the time, and the first in the Indian Journal of Pediatrics.
Ronald
devotes the article to discussing various types of "difficult"
children, including the "deviant" behavior of anger, disobedience,
lack of cleanliness, vanity, lack of politeness, jealousy, lying, and
fanatically truthful children, as well as 'frightful children'. At the
end of his discussion, Ronald adds one final type of "difficult"
child, what he termed the "precociousness of a child." What
follows is his description.
"The
precociousness of a child is not always limited to specific spheres,
not to conception alone, on the other hand, it extends to the whole
of mental personality
such children are quite different from others
in respoect of behaviour, speech, movements, and work. The child-like
conduct has partly or fully disappeared, the mental attitude of such
a child becomes somewhat strange and repulsive
such children are
no longer child-like, they do not play and are not cheerful. Partial
precociousness shows itself in the development of a particular sense,
for example, musical sense, calculations, mechanical handling, and so
on. In this group is included the so called prodigy
" (p.
24)
This description,
while tantalizingly short, highlights a number of the same areas as
Leo Kanner in his 1944 article. Ronald notes that this type of problem
does not just effect one area, but 'extends to the whole of mental personality.'
Today we might call that the "pervasive" aspect of the disorder.
Ronald's observation that the 'child like conduct' of such children
is compromised, and that play is absent; one of the most salient features
of a young autistic child. Just as Kanner noted, Ronald also remarks
that these children may show a special ability in an isolated area,
yet concludes with the foreboding caveat that despite these abilities,
these children, "who do well in school and go ahead of others,
do not always succeed in after life." As any parent of a child
who has remarkable mathematical or other abilities, or whose child passes
his exams knows, these talents do not necessarily guarantee that the
child's adult life is secure.
Certainly
it is conceivable that Ronald is referring not to autism, but rather
to children with a less pervasive problem. Yet the possibility remains
that Dr. Ronald may just have provided history with another early description
of Autism-- and all the way from India!
Note:
We appreciate appropriate reference this article as originating from
the Action for Autism website.