The month of April is dedicated to autism awareness. According to WHO, we are facing a rapid rise in autism cases, and the current ratio is 1:100; one in every hundred children has Autism. A fellow parent who is a doctor also summarized it pretty well: “Autism is a multisystem sensorimotor disorder, of which intellectual and social difficulties form a large part.”
As a parent of one such child myself, I have seen Autism up and close and know that it impacts the person affected by it and the entire family and that the challenges are lifelong. Knowledge about Autism is still very recent, and hence information about it has not percolated from top to down (Government to people); in fact, it has been the other way around.
Parent advocates have primarily done most work in spreading awareness and finding pragmatic solutions to day-to-day problems. Until 2016 autism was not even included in the Disability Act. Because of that, the previous generations of autistic children were denied the fundamental right to education, to say the least, which has led to a lack of vocational skills. Today that entire generation is dependent solely on the parents as their immediate caregivers with no relief in quick site from the policymakers or the society at large …they have been left to fend for themselves!
There has been some progress in awareness building, and due to relentless advocacy by the affected community, we finally have our foot in the door. However, many links still need to be added to government policies. Inclusion in schools has percolated only at the superficial level, which means the schools will accept “high functioning” children- those who are either verbal or toilet trained or those who can come with shadow teachers, an added burden on the parents, especially the mothers as very often they end up being the shadow teachers of their child. With the high cost of living, there are simply no schemes to support these children regarding social security, insurance, medical coverage and more. The biggest question that looms over parents of these children is, “What after us ?”
Even if schemes are available, it’s only for the BPL category and not for APL families. Getting a disability certificate itself is a task. And above all, the information on existing schemes or laws has yet to be provided in different government departments, resulting in the denial of the rights for something as essential as opening a bank account.
So how can I help?
If you are a woke person looking to give back to society, begin by gathering information about Autism; find out a family living in your vicinity with one such child, reach out to them, help them in whatever way you can, and volunteer with organizations working in this field if you see a person with Autism working in your office then create a conducive environment for him to work in, create job opportunities, support, donate, fund, do your bit in any which way to ease out the burden from the over-stressed families and all the direct caregivers working for persons with Autism.
India is a vast country known for its diversity and, along with it, has many diverse challenges as well. Autism is one such challenge which needs immediate and foremost attention. If it is ignored or not given the desired attention, then every child’s future in a hundred will be bleak! As Dr Colin Zimbleman says, “Autism…offers us a chance to glimpse an awe-filled vision of the world that otherwise pass us by.”
