I am going to write about a few truths that parents with autism in India need to recognize and if possible, internalize. I know that it won’t sound rosy or soft or delusional. Truths are rarely soft. But truth is important. Yes, even in this world with fake news and idiotic prejudices, truth is important. And you need to hear it.
I help run a centre for youngsters with Autism in Bangalore. I am also a parent of a young adult with autism. It is not an easy balance. As parents already know, the stress of worrying about and dealing with your child who cannot communicate properly, who may or may not have heart-breaking meltdowns, who may go into seizures when you are least prepared — is tough. We do it but it is tough. My heart goes out to my fellow parents.
The thing that I do not agree with when it comes to raising children (any children but particularly those on the spectrum) is that we choose to do what is convenient for us, what is more socially acceptable and what is less embarrassing even when it is also less beneficial and indeed in many cases, actively harmful to the child’s development.
Most parents with kids on the spectrum who are diagnosed initially with PDD-NOS ( the end of the spectrum with supposedly, a lesser degree of complications), put their children in a regular school. A regular school will have anywhere between 25 to 35 kids in one class. It is noisy. It is chaotic. It is scary. Especially for our kids. They cannot function in an environment that does not cater to their sensory needs. Let me ask you something — would you be able to function if I shone bright lights into your eyes or screamed at you continually or poked you with a hot rod? You wouldn’t. You would curl into a ball and break down. Why then do you expect your children to survive in an environment that is so unbearable for them? And you not only expect them to survive but also to learn and keep up with the neurotypical kids who have no seizures or sensory issues. It is not fair, is it?
And yet when I see the children in my school, almost all of them have gone through this torture till they were thrown out at the age of 12 or 15 (depending on the greed of the school that would charge extra for them but keep them there doing absolutely nothing). I see 13 year olds whom we have to teach from a first grade level. I see teenagers who cannot skip count or understand how to use a greater than or less than sign. Yet they would have come from age-appropriate grades. How? And why would you waste your child’s life trying to force them to study in a way that gains them no learning whatsoever?
I know how hard it is to look at family, friends, neighbours etc. and tell them your son is not studying in a normal school or that he is in a lower grade. I have done it plenty of times. I still do it. While my son’s peers go off to college in different parts of the world, he sits here doing functional concepts. But he learns. His comprehension is growing and he will, in time, be independent. I know it. I can wait for it. I cannot just try and make him something he is not. But I will support his differences and help him in any way I can so that he can learn that which is meaningful to his survival — both academically and vocationally.
In Bangalore and probably the rest of India, Autism is still seen as a stigma — something to never talk of or acknowledge. But there comes a day when you cannot run away from facing the fact that your child learns differently and you must accommodate that. Give him or her all the support you can. Teach them or find a teacher for them who will teach the way he or she can learn. Don’t let anyone tell you what your child is bad at. Remember that his/her brain is different and different isn’t bad — its just different. Autism can learn. But now you parents must be willing to learn a new way of teaching. Else, truly there is no hope for the growing number of kids being diagnosed with Autism in this country.