History of Action for Autism

Action for Autism 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 Autism are able to grow to their full potential. As with many disability organisations, Action for Autism finds its roots in parent initiative. Here is how.

In the 1980's a diagnosis of autism in India was rare. The majority of children with autism routinely received a diagnosis of mental retardation. A handful were diagnosed as having Minimal Brain Dysfunction and others received diagnoses of 'slow learner' and 'behaviour problem.' If at all, children with autism mostly attended schools for the mentally retarded, where the same intervention techniques were given to all. Without knowledge about the specific ways autism effects a child, schools and parents alike were unable to address children's needs. Even the very basic facts about children with autism were absent. Knowledge of these facts all have direct implications for teaching techniques, but in the absence of understand, appropriate intervention did not occur. A parent who wanted information about autism might try the British and American libraries, if they had access to them. There, also, the amount of information was limited to a few paragraphs in different general books, and parents without access or who did not speak English did not have this option.

In 1988-1989 a group of three concerned parents got together in Delhi. Two of these children had received a diagnosis from the same psychiatrist, who was trained in North America, and the mother of the third had found the diagnosis herself. These three children all attended the same high-profile special school, but none were making any progress. The children were often left to do whatever they pleased, or were included in singing time and other non-specific activities. With thirteen kids and one teacher, the students who were autistic received the least attention, and these children began to show an increasing amount of challenging behaviours. Parents were not able to observe their child during class, and the teachers did not offer any guidance for management at home. Furthermore, two of the children began to report that they were being punished by being hit and pinched by their teachers. The children didn't want to go to school.

To build socialisation skills in their children and provide help to each other, these parents organised outings for their sons and formed a miniature 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 asking 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.

In March of 1994, a special school for autistic children, Open Door was started on an experimental basis with just one teacher and two students. In August of that same year, The Autism Network, a journal, also began. With overwhelming response to both the school and journal, the decision was made to register Action for Autism to give structure to and expand the scope of activities in its charter. The network had begun!

Action For Autism (AFA) is now the primary organization in South Asia specializing in Autism Spectrum Disorders (ASD) and related pervasive developmental disabilities. AFA is a non-profit organization whose mission is to:

facilitate a barrier free environment - informational, attitudinal and physical – to create opportunities for education, employment and socialization for persons with Autism Spectrum Disorders (ASD)

empower families of individuals with ASD

act as a catalyst for change and build community responsibility for mainstreaming of all persons with ASD

AFA is engaged in a range of activities aimed at families affected by ASD, medical and educational professionals as well as the general community. Here is just a sample of some of the people we reached out to last year:

63 children came to AFA for diagnosis and assessment.

62 children attended The “Open Door” School Programmes

7 young adults trained at Aadhaar, the Vocational Training Centre

More than 300 families turned to AFA for counseling, either face-to-face, by phone or correspondence.

AFA conducted or was invited to speak at 14 training workshops throughout the country reaching over 1000 individuals

4 therapists completed AFA’s year- long training course in Autism

AFA employed 18 members of staff as well as numerous, regular volunteers

The National Centre for Autism

We have responded to a critical need to establish a function-specific centre that enables AFA to expand the scope and extent of its services and provide dedicated services in rehabilitation, research and training. The Delhi Development Authority (DDA) allotted AFA a plot of land at Jasola, next to Indraprastha Apollo Hospital for the National Centre. We relocated into this centre in June 2005 and now operate from that location.

About our Logo

Many autism organizations have adopted the logo of the puzzle piece to symbolize how it appears that one piece of the autism puzzle is missing, and how autism itself is a confusing and puzzling disability.

We, too, have found this an appropriate analogy. However, as an organization we do not view having a child with autism to be a tragic or unfortunate situation for either the parents or the child. It IS a difficult situation to live with, like many difficult situations in life, and for families in India, this difficulty is magnified by the poverty of services available. Despite this, we prefer to send a more encouraging message to people about autism, and therefore, the little boy in our puzzle piece is not someone who is looking downwards or weeping, but is someone who is smiling and connecting with those around him. Also, we show him partially emerging from the puzzle to represent that all people with autism can improve and grow to some extent.