It was 6.30 am on a Sunday in Bengaluru. There was a chill in the air. A convoy of bikes and jeeps gathered near Vidhana Soudha waiting to be flagged off. But this wasn’t a regular rally. Organised by Bhubaneshwar-based Zain Foundation Trust, it was conducted to raise awareness about autism. Nearly 100 vehicles took part — men and women riding superbikes and driving rugged four-wheelers, families and friends accompanying them as they made their way to Nandi Hills. Gargi Bhattacharya, the founder of Zain Foundation, was a passenger in one of the off-road jeeps.
“It was a lovely ride, traffic-free and the weather was perfect,” says Gargi. But this rally that took place on August 1 was more than just about the scenic drive. At Nandi Hills, the final stop, a talk had been organised on autism at Discovery Resort. Dr Sanjay Swami of Sparsh Hospital spoke about the difficulties of living with autism and the biological and physical issues associated with it. Mithun Kumar IPS, SP of Chikkaballapur, was the chief guest. The event also saw Gargi speaking about autism, something very close to her heart.
Gargi started Zain Foundation, a charitable trust, in 2015, named in honour of Gargi’s older son who had passed away from brain cancer in 2014 at the age of 15. Rean, her younger son is on the autism spectrum, and that’s what pushed her to start the Trust. “The way to process pain is to let it empower you,” says Gargi. “I had a responsibility to my second son and all other children like him.”
Autism is a developmental disorder, the severity of which varies from individual to individual. “People on the autism spectrum have difficulty with social interactions and communicating,” says Gargi, speaking to TNM. “No two people will have the same symptoms, and there is no wheelchair or walking stick to identify a person who lives with autism as you can with other disabilities.” This is why, she says, it is so important to raise awareness about the disorder and sensitise people about it. “There are no laws and guidelines in place to help those with autism,” she explains.
Gargi says the sensory highway of a person on the spectrum is more fired up than a person who is not. Therefore, a breeze can sound like a storm to them. Their auditory sense can be overloaded by even the crinkling sound of a bag of chips, which can set off a meltdown. “When this happens, people stare, not understanding what is happening,” she says. “This embarrasses and causes anxiety to the caregivers and that anxiety can get transferred to the child.”
Gargi says the ideal thing to do at this point is for someone to hand the child a squeezy ball or some balm to smell to divert attention from the sound which is bothering them. And more importantly, people need to know not to stare. “But for this to happen, people have to be educated on autism and be aware of how to handle it,” she says.
Another factor is making public spaces more autism-friendly and inclusive, says Gargi. She also talks about the need for laws, such as separate lines for people with autism (many of whom have trouble waiting) and picture-driven instructions or menus so a person with autism can easily communicate what they want and need. This is why she runs advocacy programmes, campaigns to raise awareness; and provides life skill training and vocational training for people with autism through the Zain Foundation.
There is also a need to remove the stigma associated with autism. “There is denial from parents, they worry about social shame and many of them don’t take their child who is on the spectrum out, fearing that they will act out, and so the children also don’t learn anything about the real world,” she points out. Most schools are not equipped to handle children with autism and she says there is a dearth of special educators.
“We need to figure out what the person is good at, and help them train and hone their skills,” says Gargi, adding that this can only happen with acceptance and understanding. She stresses the importance of including people with autism within the social fabric.
Now, with the pandemic, many families with children on the autism spectrum are staying indoors as many of these children have comorbidities. During this time, Gargi decided to spread awareness and communicate about developmental disability. This is how the rallies started. It began in April 2021, Autism Awareness Month. The first rally was held on April 2 in Bhubaneshwar and then two more were held in Chennai and Pune. The participants wore specially created T-shirts and badges made by the Zain Foundation, featuring information on autism, and there were flags and posters as well. But then the second wave of the pandemic hit and the Bengaluru rally had to be postponed.
However, on August 1, it finally took place with the superbike group, Special Initiative Riders (SIR), led by Ganesh Prasad, and Mudsters (off-road jeep group) headed by Kaleem, joining in. “The Special Initiative Riders responded so compassionately, it was immensely gratifying to initiate the awareness ride here,” says Gargi. “Most of the participants did not know about autism and they were so attentive and made the exercise extremely meaningful.”
In fact, the very first awareness programme Gargi had in Bhubaneswar in 2015, soon after she started Zain Foundation, featured superbikes. “Zain used to love bikes,” says Gargi.
She has a couple more rallies planned this year, one in Indore and another in Leh. But in the next couple of years, Gargi wants to start a residential centre in Bhubaneswar for adolescents and young adults with autism. As children with autism age and parents get older, some may find it difficult to care for them on their own. “At this centre, we will provide holistic care for them. There will be a medical centre, special therapies in place, vocational training and trained caregivers,” says Gargi.