Action for Autism (AFA) was started in 1991 to provide support and services to persons with autism and their families, and to create an environment in India in which people with ASD are able to grow to their full potential. The AFA National Centre was established in 2004 to expand these services. As with many disability organisations, AFA finds its roots in parent initiative. Here is how:
In the 1980's autism was virtually unheard of in India, a diagnosis of autism in India was rare, and there was little information available. The majority of children with autism routinely received a diagnosis of mental retardation. Others were diagnosed as having ‘Minimal Brain Dysfunction’, were called slow learners or deemed to have behaviour problems. If attending school at all, children with autism mostly were found in facilities for the mentally retarded, where the same intervention techniques were provided to all children. Without even basic facts or knowledge of what autism was, and that children with autism respond best to specific intervention techniques, teachers were not able to provide appropriate intervention. Unlike in many western countries, there was no law mandating that children with special needs receive services. In many cases, children with autism were simply not allowed in special schools at all because of challenging behaviours that teachers felt ill equipped to handle. If a parent had in fact received a diagnosis of autism, she may have tried to find information from the British or American libraries, if they had access to them. Even there, the amount of information was limited to a few paragraphs in textbooks, and parents without such access or who did not speak English, did not have this option.
In 1988-1989 a group of concerned parents got together in Delhi. Their children all attended the same special school, but none were making any progress. These three boys were often left to their own devices or were included in ‘singing time’ and other non-specific activities. Students who were autistic received the least attention, and the three boys began to show an increasing amount of challenging behaviours. Worse, parents were not able to observe their child during class, and the teachers did not offer any guidance for management at home. Two of the children began to report that they were being punished by being hit and pinched by their teachers, and no longer wanted to attend school.
To build socialisation skills in their sons and provide support to each other, these parents organised outings for the boys and formed a very small support group. At the same time, one of the mothers began publishing articles in the popular media about autism, and was met with a stream of letters from parents in other parts of India asking for information about the disorder. Regardless of their location, parents wrote with similar stories of frustration, and asked for help in handling their child's difficult behaviour. After hearing from so many parents with such similar questions, it became clear that the time had come to form a network of these families to share ideas, disseminate information, and provide support. The autism movement in India had begun!
1991: AFA starts as a parent support group, with a focus on raising awareness about autism in India.
1994: In March, a special school for autistic children, Open Door is started on an experimental basis with just one teacher and two students. Counselling services for other parents also begins. In August of the same year, The Autism Network, a widely circulated and hugely appreciated periodical, which is a reference point for professionals and parents, is published. The journal has been distributed to over 45,000 parents and professionals (as of 2015). Free downloads of the archives are available from the website. With overwhelming response to both the school and journal, the decision was made to formally register Action for Autism to give structure to and expand the scope of activities in its charter.
1994: Recognising the lack of trained professionals to teach children with autism and to cater to the increasing demand for its services, AFA also initiates a Teacher Training Programme and petitions the Rehabilitation Council of India (RCI) regarding the need for such a recognized course in the same year.
1996: With the burgeoning technology sector in India in the mid 1990’s, the AFA website (www.autism-india.org) is launched. As the first website for autism in India, it allows information to be disseminated more extensively, at no cost to families. One of the most widely viewed pages of the AFA website has always been the list of organisations for autism internationally, a section included from its conception. The site remains an important reference point and receives about 90,000 visitors annually.
1996: AFA leads a delegation of parents of autistic children from across India to meet the Secretary of Welfare and to lobby for inclusion of autism in the Persons with Disabilities (Equal Opportunities Full Participation and Protection of Rights) Bill. AFA follows this up with meetings with other policy makers including the Joint Secretary of Welfare, the Minister of State for Health and Family Welfare, and the Lieutenant Governor of Delhi. Our efforts are instrumental in including Autism in the working draft of the Persons with Disabilities Bill, 2011. See our Legislation, Policy and Programmes page for updates in this area.
1996: Parent empowerment and professional awareness are activities that go hand in hand. In October 1996, the first parent and professional training workshopsfocused on autism is held; these have occurred annually since then and remain one of the most popular events organized by the National Centre.
1998: AFA produces the first awareness film on autism in India.
1998: AFA continued lobbying with the Rehabilitation Council of India (RCI) highlighting the need for a training programme for ASD. Continued efforts culminate in the Diploma in Special Education (Autism Spectrum Disorders) in 2003.
1998: AFA is a founding member of the World Autism Organisation, and continues to represent India in the world community.
1998: AFA receives a grant from the Rajiv Gandhi Foundation to initiate its research activities through a ground-breaking study on professional awareness among paediatricians. Collecting data from over 600 paediatricians in India, this study examined criteria considered necessary, helpful and not helpful, in making a diagnosis, as well as agreement with different statements about autism and experience with the disorder. You could visit our research page for details of this study and its follow up in 2008.
1999: AFA succeeds in the inclusion of Autism in the National Trust Bill which is now the National Trust for Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act 1999
1999: The first manuals and training materials on Autism in India is published by AFA.
1999: The model vocational training programme – the first for adults with autism, is launched.
2000 - 2010
2001: AFA initiates the Parent-Child Intervention Programme, a model programme for parent empowerment and intensive parent training of young children with autism. As of 2013, this programme has trained more than 450 parents from across India, as well as Kenya, Saudi Arabia, China, Singapore, the Maldives, Nepal, and Pakistan. We have also facilitated in the replication of this pioneering programme and other autism services in Ahmedabad, Baroda, Hyderabad, Nepal and ShriGanganagar. Another exciting event in the year was ‘Views from Planet Autism’, the Group Show of works of art by persons on the autism spectrum that was organized by AFA. The choice of the title was a deliberate one, selected specifically to acknowledge and honour the way people with autism view ‘our’ world; one which they cannot quite understand, one in which they may get to ‘know’ the basics of culture and appropriate behaviour, but may never quite get the hang of completely!
2003: The AFA training course is converted to a one year Diploma in Special Education DSE-ASD under the Rehabilitation Council of India. Between 2003 and 2013, the AFA DSE-ASD course has trained over 100 professionals. Over 55 students have graduated from AFA after undergoing a government recognized training programme. They are recognized as special educators specifically in autism, and are now placed in mainstream schools and special needs schools as autism experts.
2003: The observation of Autism Week each December across India is initiated by AFA.
2003: AFA initiates the forming of the Federation of Autism Organisations – Autism India Network.
2005: The AFA National Centre for Autism is dedicated. Between 1994 and 2005 AFA operated first from VasantKunj and then from Chirag Delhi in South Delhi. The space available in these locations was inadequate: AFA’s success in identifying more children with ASD and creating wider awareness amongst families and professionals quickly led to an increased need and demand for services and support, placing a strain on AFA’s capacities. As a result of years of prudent saving, the generous help of hundreds of families and well-wishers, and with land allotted by the Delhi Development Authority (DDA), AFA was able to raise the funds to house all the activities under one roof at the National Centre.
The Hon. Smt. Sheila Dixit, Chief Minister of NCR Delhi, laid the foundation stone of the AFA National Centre on July 9 2004. The dedication of the National Centre took place on 8 September 2006, with Ms Sonia Gandhi presiding. The National Centre was sorely needed to allow AFA to expand the scope and extent of its services and provide dedicated services in rehabilitation, research and training.
Read the dedication brochure
2006-2008: In an effort to sensitise paediatricians and facilitate early screening and diagnosis, AFA carries out an awareness campaign targeting 15,000 paediatricians across the country. It was during this period that the research site at AFA was formally launched and an ethics committee was concurrently established to review research activities.
2009: In a landmark effort, AFA facilitates Persons with Autism, in India, to speak as self-advocates. For the first time individuals with autism advocate for their self-identify, hopes and aspirations during World Autism Awareness Day. There have been several people with autism in the west who are self-advocates and who provide us with an insight into their very unique world. The scenario had been a bit different in India till now, wherein one had rarely, if at all, come across a self-advocate with autism in India.
2010: Marking an important landmark in disability legislation in India, the drafting process of a new Act replacing the existing The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 is initiated. The Ministry of Social Justice and Empowerment, Government of India, nominate Merry Barua, founder director AFA, to the Committee constituted to prepare the draft legislation. This facilitates in bringing to the forefront the specific needs of people with autism and lobbying with autism organizations across the nation to ensure that these needs are included in the new legislation. AFA also hosts a meeting of the subcommittee on Education for the drafting of the new legislation at the National Centre for Autism.
2010: In a unique partnership with the University of California, Los Angles (UCLA), AFA starts a project: Research on Autism and Families in India (RAFIN), to establish a research site that would encourage sustained research on autism that is truly interdisciplinary and ecologically valid. The project was funded by the Foundation for Psycho-cultural Research-UCLA Culture, Brain, Development, and Mental Health Program.
2011: Taking another important step forward in inclusive education AFA, is instrumental in securing accommodations in the school examinations conducted by the Central Board of Secondary Education (CBSE) for students with ASD. AFA has been successful in facilitating admission for over 100 children with ASD in mainstream schools.
2012: ‘Views from Plant Autism’, the Group Show of works of art by persons on the autism spectrum is now ‘Planet Autism 2012’, as part of the WAAD celebrations in the month of April.
2012: The activities of AFA’s research wing, Anvay, marches ahead, as work starts on one of the first projects under the Research on Autism in Families in India (RAFIN), that of the evaluation of AFAs Parent Child Training Program.
2013: Adulthood is a complex phase of life, one that brings with it a plethora of new experiences, opportunities, dilemmas and expectations. But what does it mean to be an adult with Autism in India? To help answer this question, AFA initiates a study “Adults with Autism and their Families in India” as a part of RAFIN. As one of the first endeavours to understand adults with autism in India and their families, we interviewed 52 families with an adult with autism, living in the regions of Delhi and NCR. We wanted to bring to light various topics, such as past diagnostic experiences, educational and work experiences and daily living situations. We also hoped to gain insight into the parents’ views about the future, and the perspectives they might have gained through their journeys.
2011 - Present
AFA launches “ANANDA”, a residence cum rehabilitation complex for persons with Autism, the first of its kind providing the best practices from across the globe and modified to suit local conditions. This model residence complex will serve as a prototype for future group homes across India.
The project also involves setting up work and employment options for adults at ANANDA. The latter includes work options at a small inclusive school where children of all abilities will learn and grow together. ANANDA hopes to knit together youngsters with special needs with the local community, through shared work and recreational spaces.
With the support of the Haryana Government, Action For Autism received land in Haryana’s Gairatpur Bas village for this project. Mrs Sonia Gandhi laid the foundation stone for ANANDA: Supported Living for Persons with Autism on 8 March 2013.The Chief Minister Haryana, ShriBhupinder Singh Hooda, and the Union Minister of Commerce and Industry, ShriAnand Sharma, were also present at the foundation stone laying ceremony. ShriSharma who has a son with autism, has always been a strong advocate and supporter for the Autism movement.
2014: After many years, the old AFA website is retired and a new website developed, with expanded features and information that is easier to access.