Social Change Partner: Action for Autism

In a few short sentences, what does your non-profit do?

Autism is a complex developmental disability that affects a large and often unidentified population, leading to lifelong challenges. Action for Autism (AFA; www.autism-india.org) is a national voluntary organisation of parents and professionals that has pioneered the cause of autism in South Asia. AFA serves as a catalyst for innovation in early intervention, education, research, and training, while strengthening autism advocacy internationally.

Through our work in education, training and research in all areas of development, viz language, socialization, family functioning, and diagnosis, as well as basic research, and other more specialized techniques, we try to better understand and disseminate information on both the phenomenology and treatment of children with autism. Over the last two decades of our existence, we have been privileged to touch several hundred thousand lives and train many thousands.

What need do you fulfil and why is your organization unique?

Action for Autism (AFA) is a national organization of parents and professionals that started work 20 years back to fill a vacuum in the understanding and services of autism. It continues to raise awareness, disseminate information, research, train, advocate, and provide a range of services across the lifespan to improve the lives of children with autism and their families.

Our following achievements testify the unique but challenging journey of past two decades. Most of the activities are set up as model of replication.

Achievements
In 1994 started the first school in India specializing in providing education to children with autism
In 1994 started publication of Autism Network a widely circulated and hugely appreciated periodical which is a reference point for professionals and parents across India and outside
In 1994 started a one-year-long first-of-its kind programme to train teachers equipped to teach children with autism in the subcontinent
In 1997 prepared a comprehensive legal document, with exhaustive annotations, references to legislation and annexures from across the world in the campaign to have autism recognized as a specific disorder by the Ministry of Social Justice and Empowerment. This combined with intensive lobbying with the authorities contributed to the appointment of the Amendments Committee to suggest amendments to the Persons with Disabilities Act in 1998.
Was involved in the drafting of, and instrumental in the inclusion of autism in the National Trust for Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act
In 1997 launched the first website www.autism-india.org on autism in Asia which is an important reference point for the autism community. An updated disability friendly version of the website was launched by the Hon’ble Minister of Social Justice and Empowerment on 14 September 2014.
In 1997 produced the first of films on teaching methods that are widely used at training workshops
Played a pioneering role in developing teaching methodologies in the early 1990s
From 1998 lobbied the Rehabilitation Council of India highlighting the need for a Teacher Training Programme specific to Autism Spectrum Disorders. Continued efforts which have culminated in the Diploma in Special Education (Autism Spectrum Disorders) in 2003
In 1998 represented India in the launch of the World Autism Organisation (WAO) and was a founding member. Was involved in the discussions leading up to the launch of WAO
Starting 1998 implemented a two-year project with pediatricians across the country to create awareness of autism and share information on diagnosis. The project led to a rise in diagnosis of autism as well as a lowering of the age of diagnosis.
In 1999 produced the first of manuals and training materials on Autism in India
Succeeded 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
AFA is keenly aware that regardless of the number of children with autism in mainstream or special needs schools, there will not be enough services in the coming years. Hence, in 2000 pioneered a unique Mother-Child programme as a module of parent empowerment. This Has since been replicated at other locations
In 2001 initiated the observation of Autism Week each December across the India
Undertakes research on rehabilitation methods and outcome; is currently in the first stage of a prevalence study
Action For Autism successfully lobbied the Government and the Rehabilitation Council of India for a one year Diploma in Special Education in Autism Spectrum Disorders and started the training course in 2003
Action for Autism was privileged to be the first recipient of the Nina Sibal Memorial Award in 2003 for innovative methods of education from the All India Women’s Education Fund Association.
In 2004 the Director of Action For Autism received the prestigious Autism Award from Autism Denmark
In 2005 Rotary International recognized the work of Action For Autism for ‘Services to Humanity-Caring for the Mentally Challenged’ by giving AFA the ‘Rotary Special Recommendation Award’
In 2005 Action For Autism established the National Centre for Autism for which the foundation stone was laid by the Chief Minister Mrs Sheila Dixit in 2004, and which was inaugurated by the Mrs Sonia Gandhi in 2007
Prestigious Heart Spring Award by Heart Spring University Kansas US was received by Action For Autism in the year 2007
From 2006 – 2008 carried out an awareness campaign targeting 15,000 pediatricians across the country in raining awareness about diagnostic criteria for autism
Successfully facilitated the mainstreaming of students with autism
Facilitated the startup of schools across India.
Individuals trained at AFA have gone on to set up schools in diverse places such as Kolkata, Jalandhar, Hyderabad, Karachi, Kathmandu and Jaipur
In 2008 facilitated the setting up of the first school of autism in Pakistan
Facilitated Persons with Autism to speak as self-advocates, a difficult proposition for any mental disability in India. For the first time individuals with autism advocated for their self-identify and their hopes and aspirations during World Autism Awareness Day 2009
Conducted over 200 training workshops across the country as well as neighboring countries like Bangladesh, Pakistan, Nepal, the Maldives, the UK, Singapore, China, and Kenya and Nepal and trained over 15000 individuals
In 2009 facilitated the setting up of the first school for autism in Nepal
AFA had received 10 acres of land in Gurgaon from Government of Haryana in 2010. Construction of ANANDA, first model residence for persons with autism is already underway.
In 2011 Action For Autism has received the National Award in Best Service Institution category for its outstanding performance in the field of empowerment of persons with disabilities by Ministry of Social Justice and Empowerment Government of India
In 2011 Action For Autism has received Naturally Autistic People Award for Community Leadership (demonstrating leadership in delivery of support services and inclusion of autistic people in the local community and society at large) from Naturally Autistic ANCA Vancouver Canada.
Asia Pacific Autism Award 2011 was given to Merry Barua for Recognizing Service to the field of Autism in Asia Pacific Autism Conference Perth Australia in 2011.
In 2012, first individual with autism spoke as Self Advocate after being facilitated in self-advocacy at AFA.
In 2013, launched the first research study on adults with autism and their families.

What do you think was the happiest moment for your organization?

Primarily reaching out to thousands of parents and professional through our services on an everyday basis are the daily doses of happy moments. Setting up activities which serve as the model of replication and being recognised as the National Centre of Autism.

What was/is the largest obstacle your organization faced/faces?

To channelize funds for cause of disability and autism specifically has always been and continues to be the biggest obstacle faced by us.

What are the future plans for your organization?

Most persons with Autism and developmental disability require lifelong care and support. With extended family systems in India increasingly disappearing and lack of any safety net or alternative support mechanism from society or Government, the need for a long term specialist residences in India catering to specific needs becomes imperative. AFA’s future plan “ANANDA” aims to fill this vacuum and answer the question “What after us………?”

ANANDA will serve as a model of replication which will provide opportunities for work and leisure in an ambience of dignity and respect where every resident has rights as well as responsibilities. It will also serve as a model of inclusion through schools, therapeutic and other activities to empower the marginalised and sensitize the society at large.

Also being able to mainstream autism will always be there as our primary agenda always.

How can our readers help you further your mission?

By understanding autism, increasing awareness about autism, volunteer support for autism, raise funds for autism

Is there anything else you'd like to share with our readers?

The year 2014 marks the 20th year of the official registration of AFA, a journey that has been arduous and joyous, challenging, stimulating and fulfilling, all at the same time.

To mark this eventful journey of two decades, we have been hosting a series of awareness building and training events through the year. Some of these activities include training workshops for parents and professionals, Views from Planet Autism 2014, an exhibition of artworks by people on the autism spectrum, launch of an early intervention programme for inclusion of children with autism in mainstream school, launch of our disability friendly website by the Hon’ble Minister MSJE, and a gala dinner. The activities have been carefully selected to address different sections of our society who can be instrumental in mobilizing this cause further.

We continue to celebrate this journey in the upcoming months with a series of events which will include -

Release of celebratory issue of Autism Network by Hon’ble Minister of Health in December 2014. Started in 1994, the year also marks 20 years since the journal Autism Network first started publication and has continued to make a consistent and steady appearance since then. The journal provides a platform for parents and professionals of different regions and backgrounds to share their own experiences and knowledge. The journal finds pride of place in many libraries, and many readers archive every issue of Autism Network that they have received.

South Asia International Autism Conference 2015 has been scheduled in February 2015 and will showcase a series of Indian and international self-advocates, family members and researchers and boost the widening autism movement in the country by addressing myths and misinformation surrounding autism and start a discussion on some of the debates surrounding autism.

A Workshop on Research Methods in Autism and Developmental Disabilities for young researchers already involved in research activity and those contemplating a career in research to gain an understanding of research methods that will strengthen their work related to autism and developmental disabilities.

A certified training workshop on PEERS social skills training for teenagers with autism the only evidence-based training programme for autism for special educators and other clinical professionals.

Any recent articles, videos, or information that would help us learn more about you?

Our website (AFA; www.autism-india.org)

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