Autism is not easy to live with — either for the one who is autistic or the one who is responsible for the one who is autistic. They say it takes a village to raise a child. It takes several to raise an autistic child. The reality, however, is that many parents that I come across do not have access to much help when it comes to raising a child with autism. There is usually a primary caregiver (the mother) who has to stop everything else to just be there and work with her child. Very rarely, I see fathers who take the bigger role — they work and make time for their children. But I doubt if there are more than two or three that I have met in all my years of living and working in this space.
Usually, the mothers have to do it all from cooking to teaching to apologising for the child not fitting in. She is the one who loses sleep. She is the one who racks her brains for solutions. She is the one who can never get the child out of her mind for a single second. Again not all mothers are so. I am and I know many who are.
The problem with such a scenario is that a child with autism, like any other child needs to be raised by both parents. It is not enough to foist the ‘difficult’ one on the mother and then criticise her for not doing enough or calling her a superwoman because she kills herself trying to do too much. Instead of labels what would really help is support. How does it help a child if his father is always away working until years pass by before there is time for the child? His development never quite gets to where it should. No one should raise a child alone and yet so many have no choice but to do it. Extended family should pitch in when they can — honestly does anyone have an idea of how tough it is? And then, especially in India, the child is expected to act normal and talk to various strangers in noisy settings such as weddings and festivals. How does this help a child going through hell?
Autism is embarrassing — we want to hide our faces when the child lets on that he isn’t like everyone else. I used to do that but in the past so many years I have learnt one thing — let him be. He is who he is. I am a mess myself — why should I think that his inability to be ‘normal’ is any worse than my inability to tolerate hypocrisy and stupidity? I have a handful of friends. I cannot simper, flirt or otherwise portray myself as someone I am not. Why should my child be fake then?
The world is full of the less than perfect. No one gets to dictate which anomaly is to be reviled and which celebrated. Let everyone live their lives. Support if you can. Do not harm if you cannot. And stop thinking you understand what mothers like me go through every single day. You don’t. Just like you can watch someone die but not know what it feels like. Just like you can read about the pain of childbirth but not have a clue of how it feels to have a life pulse out of you. Just like you can sympathise with a cancer patient but not know the degree of pain that he is going through.
It takes a village to raise a child. I never had one. I hope you do. And if you don’t, if you are alone with a child who is not like everyone else, dig deep inside and try your very hardest — that is more than enough.