At 53 and nearing retirement, Sundar Rajan spends sleepless nights worrying about his sons future. His 23-year-old was diagnosed with autism and needs constant care. Even as hes fasting at Freedom Park he is among a group of parents and caregivers of people living with autism who began a 48-hour satyagraha on Gandhi Jayanti to create awareness about the disorder and demand State support his wife is at home to take care of their son.
Mr. Rajan explains that parents like him often have nowhere to turn for help. Day care and support centres are expensive. He pays Rs. 15,000 for day care, an amount most parents cannot afford, he points out.
While there are many centres and NGOs focussing on disabilities, some funded by the government, few focus on autism. This can only happen with the government recognising the gravity of the issue. To start with, we have no idea about the magnitude of the problem, no statistics to understand its prevalence. The government must set up a national centre for autism to study the disorder, and form guidelines on treatment and therapy, he says.
Antara Roy, another parent whose five-year-old son is autistic, says that the problem starts at the level of diagnosis. My son presented several classic symptoms of autism but doctors did not diagnose it. Finally, I had to go online and read up and take my son to a specialist. With autism, early diagnosis is crucial, she explains. I lost eight precious months, says the former Air Force personnel, who quit after her son was diagnosed.
She is now training in applied behaviour analysis, an intervention for autism, so she can help other children.
But the government should be in this space. Abroad, governments give free treatment and benefits to those diagnosed with this condition. Here, we are not even recognising it as a separate disorder, she says, adding that the Persons with Disabilities Bill, now pending with Parliament, can set the ball rolling in this regard.
Lambodar Raj, a parent of a 12-year-old child who has autism, says that given the government has not taken cognisance of this complex disability, there is no infrastructure to train or help parents understand how to deal with this. The entire sector is unorganised, with a few NGOs trying different approaches. This can only change if the government takes this up seriously, and also moves towards setting up vocational training centres or creating employment opportunities.
Mr. Raj emphasises the need for a special government-led parent support programme.
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Caregivers of persons with autism have it tough