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The Autism fraternity is polarized in many ways. There are many sects and sub-sects, bio-med vs conventional therapies; Verbal vs Non-Verbal; Aspies vs HFAs vs Rest; homeschooling vs special schools vs integrated schools to name a few.
One of the interesting polarizations is a sect of parents who try for a “recovery/cure or at least improvement ” for autism with every trick in the book (and a few outside it). Another fairly recent sect feels that autism is not a disability at all and there should be no attempt towards a cure/recovery or even attempt towards improvement for the same and advocate “let them be as they are” (though surprisingly this sect also pursues conventional therapies and/or miracle cures with as much or even more vigor. It is a real oxymoron)
However perhaps in no other ailment, there is such a plethora of magic cures. Recently some Hindi daily proclaimed “camels milk” as a cure, and many WhatsApp groups went on overdrive. In 13 years, I have seen from “Secretin” to “Stem Cell”, and all of them, in this movement seem to be shots in the dark.
I am part of a WhatsApp mainstream group. Every once in a while there is a post for stem cell or HBOT, or any such magic cure, the group resembles a beehive on steroids. And it goes on for a while, till there is a dampener by a few parents coming out with the confessional that it was as useful as a comb to a bald man after a few lacs down the drain. The euphoria dies down (only to resurface a bit later on another reference to any of these mirage magic cures). I think Autism is the fastest-growing start-up in India, right from therapies to miracle cures.
Science has not understood the human brain and the wiring (else there might have been a cure for all intellectual disabilities). Thus given the fact that science has not even discovered what causes autism, we are still some time away from a cure. The chances of a famed “eureka” moment in the billion-dollar research done by many seem remote.
What adds fuel to the fire is a number of stories of kids claimed to be cured of autism that appear in the media every now and then. From what I found on the net, US Based Data puts it at 13% (Kids cured of or recovered from autism).
While this 13% figure itself is questionable, most of us (including most advocates of- celebrate autism as a gift) try to make them “recover” in our own ways, with a truckload of therapies, special education, and at times medication and bio-med. We are trying to fix them, at times with a quick fix of the mirage of miracle cures. And I feel many think that there is an Einstein or a Newton or a Mozart waiting to be unboxed after all the therapies and wonderful treatments. (the tinge of sarcasm is given the fact that a number of awareness campaigns have these great persons are shown as poster boys of autism, leading not only to self-delusion but also to glamourizing autism, at times with vested interests. I am sure in the near future Bill Gates and Steve Jobs can be prospective poster boys of autism, given the delusional levels and the superiority complex that some parents of kids with autism seem to have).
My own theories of this 13% recovered from autism for this are three possible eventualities:
1. Misdiagnosis in the first place– This to me is highly possible and probable. Considering there are no blood or diagnostic tests, and it is just based on behaviors (and that too of 2-3-year-old kids), there would always be a possibility more so in the borderline cases
2. Autocorrect. This is my term for a theory by Stephan Shore that I heard in one of the workshops in which I heard him speak. He said that his turning point was when he realized that something was wrong with him, during his teens. And then he started on his auto-correct. And he seems to have done very well (much better than the mobile companies) if his books and talks are anything to go by.
3. Percentile: ASD is widely recognized as a spectrum. So mathematically there would be a percentile in the population of people with autism. I think the disability would be barely noticeable in the say 99 percentile and beyond, who will be like the IIM grads of the fraternity.
Point No 3 is my own theory, but one look at persons on the upper end of the spectrum will tell its own story. And the sad part is that the autism movement has been hijacked by the top ten percentile folks, as it makes a good glamourous story.
There is one more thing I have noticed about autism. The challenges a person faces seem to be dictated more by the severity of autism, rather than IQ levels. So and the social impediments are the key differentiator, and that is why the employment rate is abysmal among the aspies as well.
To me, in the midst of all this confusion, one thing that stands out clearly is that as of today, there is no miracle cure despite many canards.
In my view, we try to harness the potential of the kid to the optimal, while keeping our targets realistic which to me is making my kid an all-rounder and as independent as possible after our demise.
With a lot of love, acceptance, compassion, hard work, help from therapists/teachers/extended family, a bit of luck, and of course the capabilities of the kid, there can be substantial improvements in the kid, (and in some cases pretty close to complete recovery).
In my opinion, let us not chase the mirage of magic cures, let us try to find the oasis of acceptance.
And to me, acceptance is accepting our kids with all their limitations (and strengths) and trying to love them as unconditionally as they love us, rather than wallow in self-pity and angst.
