In the beginning of my practice in India, when SK was just born and I was running assessments and meeting many teens and adults with Autism & Aspergers Syndrome, I worried if I must say this aloud or if I must say this at all? Today, I am certain that ‘IT MUST BE SAID!’
So, in 2019, this is my resolve — to speak the truth and bring out the reasons about why Autism is struggling in India in this unique manner.
“Autism is stigmatized in India because it is misunderstood, undervalued, under-utilised, and in many cases completely ruined and left powerless, miserable and eventually isolated.”
In India, Autism is WRONG because it is a mind that has limitations and problems. Here, this mind is being destroyed by those who should actually be nurturing it. Here, this mind never achieves its true potential because of the ‘better than thou’ attitude of the neuro-typical mind. Here, this mind does not get the resources it needs to excel because the ‘return on investment’ cannot be justified. Here, this mind is dismantled by the so called ‘professionals’ who think that they can manage it with checklists and monotonous routines. Here, this mind is left idle by most care-givers because it takes effort, discipline and sacrifice to get this mind to remain productive.
The autism mind is further violated because it does not follow the norms set by a society who chooses to manipulate those rules to fit their own conveniences. Autism is challenging and I will reinforce that in India, it is possibly even more harder for Autism to thrive.
The reason for this begins with the stigma and our need to follow superstitions without understanding the significance of questioning and evaluating age old ideas.
My mother use to tell me ‘Be careful what you say, Vayu Bhagwan will say Thatasthu, so choose your words carefully.’ I understood that but it never stopped me from calling a blind man as blind or myself as dyslexic or even my mom as a diabetic. Because, there is a difference! If I thought that having dyslexia or diabetes was a bad thing like an abomination, then I would probably be concerned by these labels.
I knew that these were conditions that I strongly believed could be compensated and conquered with discipline, perseverance and the right kind of nurturing. I never associated anything more than that to blindness, dyslexia, diabetes, cancer or even autism. I never thought that a human became any less of a human because he or she had a disorder or a handicap or a medical condition.
What I believe is that, Autism is a mind which requires of us to let go of our ego and desires and engage with it in singular dedication and complete passion which can almost be compared to the spiritual idea of ‘submitting and then losing oneself in the Parmathman to achieve Nirvana’. I know it may sound ridiculous to many but if you think of it more carefully all that is needed to achieve a true state of oneness with the cosmos is probably the key to achieving the desired with Autism too.
I happen to listen to an interesting discourse about Ramana Maharishi having cancer and how his devotees insisted that he do a sankalpa and cure his own cancer. Maharishi said — “to do so, I have to first acknowledge that I have a body and then inside that body I have cancer and then I have to acknowledge my hand that will have to cure this cancer. Then he said, “but I am not about, of, for or with my body. I am beyond that.”
Of course, one of the other things that is pointed to in this discourse is the experience of everyone watching him remain completely disconnected and maintaining a calm and serene demeanor while the pain consumed him from within which obviously perplexed many around him.
I only use this example as a way of illuminating the fact that a person does not become smaller or any lesser if he has a condition, and of course Maharishi takes it to another level which to be honest is not something I can completely comprehend or even attempt to decipher.
But what I do take away from this is that we are no one to say that a label will decide the destiny of a child. We are no one to subscribe to that label even when we are nurturing that child. And most importantly, we are not allowed to ruin that child using that very same label.
The label was given to build awareness, to ensure caution, to address the needs of that individual more effectively and today what we do is — Not accept autism, we don’t want to say it aloud, if we say it aloud we are so consumed by it that we start to build barriers for that child, we spend time associating all kinds of negative ideas to that label and eventually impress that on the child too.
Another story that comes to my mind is of the Solomon Islands where if a tree is too large to be felled with an axe, the natives cut it down by yelling at it. Woodsmen with special powers creep up on a tree just at dawn and suddenly scream at it at the top of their lungs. They continue this for thirty days. The tree dies and falls over. The theory is that the hollering kills the spirit of the tree. According to the villagers, it always works.
I hate to admit this but we have created a hollering to kill the spirit of Autism in India too. Else, we would not have wasted so many minds in India. We must be aware, we must question ourselves and we must become accountable as a community — that is the need of the hour! We cannot simply take away their basic rights and then blame it on Autism. Neither can we blame their inabilities on their bad karma in their past lives.
It’s time WE CHANGE, we owe it to AUTISM, we owe it to the many those are lost and suffering. And SK is an effort whose objective is to achieve exactly that!