Say it like it is

I am resuming my blog on Autism after quite a break. Sometimes I think no one reads any of this stuff, so why bother. And then I think what if just one person who needs to know this, happens to come across this writing in some forgotten corner of the virtual world? It might answer questions. It might prevent time wasted barking up the wrong trees. Or it might at least force them to think from a different angle. So I plod on.

Today I want to write about the way many people try to whitewash Autism. The attempts are most certainly well-meant. The effect however is usually detrimental rather than beneficial. Let me give you an example. A parent who has a child with severe behavioural issues and who has not been able to resolve it but has rather learnt to live around it discovers that our school has been able to help this child. We don’t sugar-coat over the behaviour problems. They are there to stay because of low cognition brought about by any number of factors. We celebrate the child of course, but also highlight that working with him comes with risks — physical risks. And yet the parent or parents (for there are quite a few I know who fit the bill) go out on a public platform or to the media time and again and state that Autism is a blessing and that their child has taught them how to be better human beings. I agree that our children teach us a lot. But in no universe would I consider autism as a blessing for either caregivers or the individuals themselves. I am a parent too so I think that being honest is more important than sounding good.

Autism is incredibly difficult to live with. I don’t know the level of pain my child suffers or has suffered over the years. I know his peer group stays away from him. I know no one calls him or invites him to hang with them. I also know that though he is social he cannot hold a conversation and many of my acquaintances either treat him like a small child instead of an 18-year-old or ignore him completely and talk around him only to me. I resent it. I resent it more than I can say. I know his life without me will be a lonely one. I know I want to pull my hair out when he cannot make sentences logically. I am unable to program language learning into him and it frightens me. So I will never say autism is a blessing. I would wish my son were like a regular kid so that his life would be easier. I have never and will never go on stage and make light of the struggle that is autism. I say that my son has a heart of gold and it is true but that still doesn’t mean he can exist seamlessly in this mad world. He is talented and he is lovable but his life will never be anything but complicated.

So why then do we, who know most about autism, seek to downplay its bad side? We should say that despite all that our children do mind-blowing work. We should say that we don’t give in to bad behaviours though we understand how they stem out of frustration. We should say that more and more targeted training has to be done on time so that comprehension is set on a rising arc at an early age and incidences of bad behaviours become lesser and lesser. Autism isn’t noble. Its different brain wiring. If we are to tackle it with any success at all, we should lay it out with all the good and bad when we, as parents, as teachers, as advocates, speak up for it. We don’t have to ask for sympathy or paint a terrible picture of doom because that too is a skewed representation. But we do have to say it like it is. Until we do, why should anyone else trust us?

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