Research on Autism in India

AFA Research Activities

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 160 articles, chapters and books which relate to the topic. (See this presentation for more detail). 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 In addition to these published articles, there have been many, unpublished research studies, of which AFA has also been involved.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 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. AFA also views research collaboration as a way to increase the infrastructure and skills of researchers within India.

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.

Conducting Research with AFA

If you are interested in collaborating with AFA, we welcome a letter of inquiry to receive additional information about this process (please see Download A below). All projects conducted with AFA beginning in 2009 must be reviewed by the AFA Institutional Review Board to ensure that the project meets important ethical standards and is based on a sound theoretical background. While we support the growth of research on autism in India, we believe the conduct of such studies in India should meet a similar standard as in other countries. If this does not occur, the validity of all research conducted in India will be questioned.

Download A: Overview for prospective researchers

Download B: AFA IRB Initial Submission Form

AFA Research Studies

Research on Autism and Families in India (RAFIN)
A three-year collaborative partnership between AFA and UCLA, funded through the Foundation for Psychocultural Research (FPR). PI Tom Weisner, Ph.D. and Co-PI, Tamara Daley, Ph.D.
Overview of RAFIN and on the CBDMH site
Link to more information on the FPR-UCLA Culture, Brain, Development, and Mental Health (CBDMH)

Ethical Considerations in Conducting ASD Research in Low and Middle Income Countries
Presentation at International Meeting for Autism Research, May 2012
Full-text publication from the Journal of Autism and Developmental Disorders

Autism Spectrum Disorders in India: A Comprehensive Review of the Literature Presentation at International Meeting for Autism Research, May 2012

The Professional Awareness Campaign and Research Project
Presentation of 'A Decade of Data' at the International Meeting for Autism Research, May 2010

Aap Ki Antara: The Impact of a Popular Indian Serial on Awareness of Autism
Data obtained from a helpline conducted in conjunction with the show presented at the International Meeting for Autism Research (IMFAR) 2010, Philadelphia, PA USA

Development of an Assessment Kit for Autism

Translation and Validation of the RAADS
(More information coming soon)

A large scale, two phase study to estimate prevalence, and raise awareness, about Autism Spectrum Disorders in India (with Creating Connections)

Positive Perceptions in Parents of Children with Disabilities

Psychosocial Support for Families of Children with Autism

Parents of Children with Autism: Stresses and Strategies

Language and Learning Skills and Symptoms in Children with Autistic Spectrum Disorders

Collaboration with others: Smaller research studies

Numerous students of social work, psychology, and special education from leading universities in India and other parts of the world have conducted small research projects in conjunction with AFA. As so often happens, many of these studies are never published and may not be distributed widely. However, some do provide rich descriptive information about autism and we keep a copy of these papers, when possible, in our resource center. AFA is happy to provide, as time permits, feedback on the design of such studies as well as to collaborate where appropriate. Check back soon for a list of the past projects conducted at or with AFA.

Collaboration with others: Larger research studies

Exploring Constructs of Intellectual Disability and Personhood in Haryana and Delhi (2008). Indian Journal of Gender Studies, Vol. 15, No. 2, 317-340. (N. Mehrotra and S. Vaidya)

A Sociological study of families of children with Autism in Delhi: Issues and challenges. (S. Vaidya, 2009, August. Paper presented at the Asian Pacific Autism Conference, Sydney, Australia)

From symptom recognition to diagnosis: Children with autism in India. (2004) Social Science and Medicine 58 (7), 1323-1335. (T. Daley)

The need for cross-cultural research on pervasive developmental disorders. (2002) Transcultural Psychiatry 39 (4), 532-551. (T. Daley)

Diagnostic Conceptualization of Autism Among Indian Psychiatrists, Psychologists and Pediatricians. (2002) Journal of Autism and Developmental Disorders, 32 (1), 13-23. (T. Daley and M. Sigman)

Unstrange Minds: A Father, a Daughter, and a Search for New Answers
by Roy Richard Grinker
“Unstrange Minds begins with Roy Richard Grinker's personal story: his family's battles with the school system, the rare orchid his daughter Isabel plucked at the Smithsonian, and a day in Monet's garden that changed Isabel forever. But because Grinker is an anthropologist as well as a father, Unstrange Minds takes us across the globe-to South Korea, South Africa, Peru, and India…” We thoroughly enjoyed our time with Dr. Grinker and are pleased to have played a role in his quest for a deeper understanding of autism and the question of whether it is more prevalent now than in the past. We recommend this book to families and professionals wishing both to understand more about autism as well as those interested in cultural aspects of the disorder—such as its impact on families in India. AFA has a copy in our library, which can be borrowed by those in Delhi. See the August 2007 Autism Network for a review of the book.

Characterizing and Improving Face-Processing Skills in Children with Autism

Other Research of Note

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. As of 2011, there are 15 published studies of genetics in autism from India.

The First Reference to Autism in the Indian Literature?
Tamara C. Daley, Ph.D.
Note: Please use the 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.