Earliest Description Of Autism In India
It may come as a surprise to many people, but autism is not at all ‘new’ to India. Most likely introduced through the colonial British medical system, autism was described in the Indian scientific literature perhaps as early as 1944, by a Viennese paediatrician named A. Ronald working in Darjeeling, albeit without using the term 'autism'. 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.
Autism in Indian Literature: 1959, 1960s, 1970s
The first time the term ‘autism’ appeared in Indian literature was in 1959, and a half-dozen research publications appeared through the 1960’s. Erna Hoch’s 1967 Psychiatrist on an Indian Playground provides a careful and comprehensive portrait of sixteen children diagnosed by Hoch with autism and treated through parental counseling and child psychotherapy. Through the 1970s, much of the published literature appeared to go unnoticed by Indians, with consistent references within these publications as theirs being "probably one of the initial attempts in Indian literature to describe and discuss" the disorder.
Beyond the research literature, information about autism in India in the late 1970s comes from parents and professionals who were involved with the broader field of disability. At this time, there were a few centres in India that were diagnosing children with autism. A study conducted in the mid 1990’s found that many of the older adolescents and young adults who received a diagnosis of autism could be traced to just a handful of professionals, and those with diagnoses before 1980 had received the diagnosis from abroad (Daley, 2004). Much of the diagnosis was dependent on individual professionals, and knowledge amongst the wider medical community remained limited. There remained a general lack of knowledge of the existence of autism, so that most had not even heard of the disorder, nor did it receive mention in most medical textbooks at that time.
By the early 1980’s there began a slow growth of ‘awareness’ of autism among some professionals, such that they were aware of the existence of this condition. However, their knowledge was often marked by the belief that it was a form of mental illness or that it was a variant of mental retardation. This confusion about the distinction between mental retardation and autism and psychiatric illnesses and autism prevented individuals with autism from accessing treatment that was appropriate to their needs.
Late 1980 onwards
From the late 1980’s through today, autism in India has experienced an intense period of activity relative to the previous decades.
* The release and subsequent Academy Award for the film ‘Rainman’ in 1988 brought autism to the consciousness of certain sections of the population in India, just as it did in many other countries. Around the same time, several parents in India took the initiative of writing in the media about autism, speaking to students, and creating awareness in the community.
* The current movement for autism and India traces its roots to 1991, when Action For Autism (AFA) was founded to advocate for children and adults with autism and their families. In this way, much of the recent history of autism in India is intertwined with the initiatives that AFA has undertaken.
* AFA began publication of its journal Autism Network in 1994.
* In addition to the work by AFA, the Karnataka Parents Association for Mentally Retarded Children (KPAMRC) initiated a one-year training focused on autism in 1996.
* By the late nineties a few autism specific organisations had begun in different parts of the country, as well as a few schools, chief among them Asha in Bangalore, Ashiana Institute for Autism in Mumbai, Communication DEALL in Bangalore, Development Centre for Children with Autism (DCCA)in Hyderabad, Priyanj in Mumbai, and We Can in Chennai. ‘Forum for Autism,’ a parent support group started in Mumbai.
* In 1998, Action For Autism held a training session by a visiting international expert, the first of a succession of still continuing events. Between 1998 and 1999 a series of articles on autism were released to the media to create awareness. The Awareness project for Paediatricians was begun in the same year. Referrals from these professionals skyrocketed following this campaign.
* In 2000, a boy with autism from Bangalore, Tito Mukhopadhyay, published his first book, Beyond the Silence: My Life, the World and Autism. The book includes writings from when he was between eight and eleven years old, and brought international attention to Tito and his mother’s methods for teaching him.
* After campaigning with the RCI for years, AFA’s teacher training programme, Diploma in Special Education (Autism Spectrum Disorders), was given formal recognition in 2003. The programme had been running since 1994.
* By the early 2000s, several additional parent organisations for autism had formed, among them Autism Society West Bengal, CATCH in Bhubaneswar and Pathways in Pune. At the time of writing there are around 79 schools and organisations all over India that specialise in teaching children with Autism.
* For decades, the prevalence of autism in India (as in many developing countries) has been unknown; all stated estimates are based on rates established in Western countries. In 2008 several studies were funded by Autism Speaks, USA, to address this issue.
* In June 2009, Zee TV, an Indian television network, with a global viewership of 500 million, launched a serial called Aap Ki Antara (“Yours,Antara”). The plot centred on a five-year old girl with autism. The serial greatly contributed to raising awareness in that many became aware of the fact that there was a condition by that name.
As these milestones illustrate, awareness of autism in India has experienced tremendous growth in less than a decade. Growth has occurred in numerous domains: diagnosis, treatment and educational options, parental involvement, vocational options, human resource development, and legislation.