These organisations in India are spreading awareness and understanding about autism
World Autism Day is observed on April 2 to raise awareness about Autism Spectrum Disorder (ASD). A developmental disorder, autism is characterised by poor social interaction and unusual or repetitive behaviour. Currently, one in 500 people are diagnosed with autism in India, which translates to 0.2 percent of the population, or 21.6 lakh individuals according to the Rehabilitation Council of India.
The term “autism” appeared in Indian literature for the first time in 1959. This was followed by a series of other publications on the disorder through the 1960s. Back then, there was very limited knowledge about autism among people at large. During the early 1980s, the level of awareness about autism grew gradually in the medical fraternity. From then on, the disorder has experienced an intense period of activity compared to the previous decades. Gradually, the support system in areas such as diagnosis, access to education, parental involvement, vocational options, and legislation gained traction.
Making lives better, one step at a time
The first exclusive school for autism-affected youth, called Open Door, was established in 1994. In the late 1990s, 15 such schools sprung up across the country, with an enrollment ranging from 15-70 students in each, according to a report published by the Rehabilitation Council of India.
In the year 1991, some of the parents of children affected with autism started the Action for Autism (AFA) initiative to support people affected with the disorder. By the turn of the century, quite a few organisations as well as a schools began opening up across the country, like Asha, Ashiana, Communication DEALL, Development Centre for Exceptional Children, Priyanj, and We Can. Today, this number has increased even further.
At present, there are more than 40 organisations, special schools, parent support groups, and speech as well as behavioral therapy centres to help people affected with autism.
We take a look at what some of these organisations offer.
Founder Meenakshi Agarwal’s son Tanay was detected with autism in 1999, which led her to consultations with medical professionals and therapists to understand his needs. Armed with this knowledge, she went on to set up Tanay Foundation in 2012 at Ahmedabad.
The Foundation offers a slew of support services for autistic children, including counselling sessions, early communication intervention, vocational training, and activity-based learning modules for children. They have focus on certain vital aspects like ergonomics, body mechanics, and stress management as part of their time table. Tanay Foundation also holds sensory therapy sessions for children who are excessively sensitive to light, sounds and smells so that they can be comfortable in any atmosphere. Additionally, these sessions include modules on handwriting as well as motor skills.
“I didn’t want any other child to suffer like Tanay did. Autistic children deserve to lead a happy and normal life. I started this organisation to cater to their needs by offering a whole range of support systems. The goal is to reduce the behavioural problems children face due to autism, and help them become more independent,” says Meenakshi to SocialStory.
She touches upon the importance of training to deal with autistic children. “Autistic children are sometimes difficult to deal with. They are likely to experience frequent mood swings resulting in irrational or violent behavior. They might be very sensitive to light and sound or might not be receptive to them at all. Since parents tend to spend a considerable amount of time with their kids, they need to be well-trained to deal with them,” Meenakshi adds.
Autism Centre for Excellence (ACE) was launched in Gurugram in 2014 by Archana Nayar and Sameer Nayar, after they perceived a gap in early intervention for people with autism.
ACE aims to impart communication, academic, self-help and social skills through Applied Behavioural Analysis, a scientifically validated approach based on some of the principles of behaviour. ACE conducts self-help sessions, occupational therapy programs, as well as fun activities like cycling, football, and relay for 35 autistic children and adults on a daily basis.
“We train people affected with autism to hone their academic and social skills. We have our very own campus consisting of classrooms, therapy spaces, and play areas. Parents tend to undergo a lot of stress in terms of dealing with their children affected with autism, Hence, we have given the parents access to a huge repository of content detailing the symptoms and treatment of the disorder,” explains Archana, Director of ACE.
Ruby Singh started ALFAA in Bengaluru in 2009 to create good living conditions and vocational opportunities for adults with autism. The organisation offers daycare and residential facilities at its 2.25-acre campus.
“When autistic children grow up, their parents become too old to take care of them. In such circumstances, they tend to feel ignored and dejected. I did not want anybody to face such a situation, which is why I started ALFAA. While there are many schools supporting autistic children in India, there are very few initiatives that cater to adults with autism,” says Ruby.
Action for Autism (AFA)
Action for Autism is one of the oldest organisations working towards providing support for people with autism. Merry Barua started this initiative with an aim to provide as many facilities as needed for the autistic, and their families.
The organisation apart from offering facilities like vocational training, educational programmes, sensory intervention, and counselling also organises co-curricular activities like pottery, painting, screening, diagnostic assessments, and self-advocacy programmes.
Action for Autism also works with government initiatives such as Sarva Siksha Abhiyan. They provide inputs on aspects like faculty training, research, formulation of curriculum, and development of teaching aids.
“Our objective is to empower the autistic and their families to reach their maximum potential. People with autism hold unique strengths, and possess a certain set of skills that need to be explored and used. We provide anything it takes for them to unleash these. As of today, we are training and providing advocacy for around 150 to 200 people,” says Indirani Basu, Head of Parent Training, Action for Autism.
Existing gaps in the support system
Several organisations and special schools are contributing immensely to help people with autism across India. From speech therapy to sensory training they are using distinct methods to bring about a positive behavioural change among children and adults who are affected with the disorder. However, more effort needs to be directed towards promoting inclusivity by driving away the social stigma related to autism, expanding the reach of health infrastructure across rural areas and villages and providing better care for not just children but also adults with autism.