Sometimes, we are not completely aware of how we conduct ourselves and the ever-so-slight comments, actions and gestures we make that can speak so so much if only, others paid some attention. Please do not misunderstand my note for an attempt to take one side and provoke a whole professional against parent debate. No, it is beyond all of that pettiness. I am not interested in being an influencer and I am someone who very actively opposes 'Sharenting' on social media which is an ethical nightmare for a number of reasons. Hence, I write blogs with that hope that this will prove as an introspective lens that will help one and all look beyond our biases and ideals but instead focus on acceptance - the true acceptance of this word we all know called 'autism'.
My story begins with the visit of a parent who post multiple calls decided to visit Sense Kaleidoscopes one morning. She visits, looks around and after 45 mins of watching and listening to me she says - I think my child will learn so much more in a regular school. Here, between kids on the spectrum he will simply become more like them. And you know, he is nothing like them. I listened, then smiled and speaking kindly, showed her the way out indicating that I had to exit due to another meeting.
Truth: I had no meeting to get to!
Revelation: I am a neuro-divergent myself and I will not give one second of mine to people who think that being different is less or an inconvenience.
In the past 8 years that I have run SK, a space set up primarily to help save the high functioning minds of autism in India, there have been innumerable instances when parents of children with autism have looked at my students with autism and spoke deplorably about them. Not to mention these are the very parents who are extremely driven about inclusion and speak passionately about it in audiences along with demanding it, seeking it and owning it to believe that their children will thrive in inclusion.
Eg: Can these boys talk, coz you know my son talks quite well even on the phone. I don’t see why my daughter has to bend over backwards to make accommodations for these boys. My son will be scarred for life if he sees others throw tantrums. How can anyone learn social skills in this environment, most of them can't even speak properly. My son is not as bad as them.
Truth: Your child has a medical diagnosis which states that he has autism.
Revelation: Your child could use your support considering it’s the least you can do for him. Accept him for who he is and not try to work an entire life to erase the real him so you can give form to a perceived idea of what he must be like so it matches with what is etched in your mind.
I have a co-founder whose son is 21 today and he struggles with seizures, a serious lack of perspective because he could not get the support that he needed when he was much younger to help bridge the gaps so that he could developmentally catch up to the cognition of a 21 year old. When I started with him he was almost 12 and whether I like it or not, the truth is that no amount of work can fix those kind of gaps which span to ten years or more. And, not necessarily everyone will have a child who will be uncooperative or aggressive - some will have kids like Pranav who are kind and gentle but absolutely open to being manipulated, who can be intimidated every easily, who can eventually lose their own self if the structures around them start to shatter. Anima, blames herself for it each day and I know that it was not that she wanted her son to go into the mainstream, become an engineer - she never had any such expectations. She only wanted him to truly thrive, survive! And the battle is still on. She talks to many such parents and tries to show them the light but mostly fails because the horse can be taken to the water, but can't be forced to drink it. Many turn around and tell her that she is wrong or that she has no clue because her son is not so difficult. She and me now listen quietly and then move on.
Truth: How can inclusion be possible when a parent looks at their own child as a problem that needs to be fixed or a square peg that can be hammered inside a round peg. Well, of course in the process if the peg chips, is severed, is lost - it does not matter because look - now we have a round peg finally - thanks to inclusion!
Revelation: There is nothing like inclusion in India because inclusion is about redesigning environments to fit the needs of a child and not to chip away at the child till he fits the needs of the environment.
Instead of supporting spaces like ours which is a rare one - infact the first of its kind in India - that actually cares to include, all you can see is a thousand reasons people want it to fail. I get it - we are a mythical creature - and you can’t imagine we even exist. You can’t believe our passion and might because it’s just too good to be true. Why should you allow us to show how one needs to design environments to nurture and nourish these beautiful autistic minds? Why should you work hard and collaborate with us - it’s too much work, it’s too much stress. It’s easier to send the kids to a regular school isn’t it? Why should you allow policies to be changed? And why should we create separate nurturing environments for our children with autism? Why do they need it? It's preposterous to even dream of it.
Well, we dream, we want a world that will give our children a space where they can truly thrive, where they can hope to learn skills that can place them in the same level field as their neuro-typical peers. We believe in autism and we know that the problem is not autism but the desire to drive inclusion without understanding the needs of an individual with autism. We know that the problem is the egos of parents who are willing to sacrifice these minds because they cannot accept the reality of their child.
Truth: I can only ignore minds like these because it is filled with an ignorant ego. If you are a parent, truly someone who cares to include your child, would you not have already overhauled all systems to build that perfect space to help your child thrive? You would not chip away till that child is so broken that you had to institutionalise him - isn’t that what your inclusion gave you in return? You would not chip away till the child loomed in a world of hallucinations and fears all alone with no real friends or partners - isn’t that another gift many of you got from this inclusive world too? When will you understand that you "the parent" is not going to be enough?
Revelation: And the seekers are the parents who think that other children with autism are not good enough peers or companions or partners etc. I wonder are you even a parent if you can perceive the world like this? You want equality but you discriminate much more than anyone else? You even speak about it thinking you are protecting your child. What exactly are you protecting your child from? From being an empathetic human? Are you even thinking?
Who are you? Oops sorry - you are an ever inclusive parent! Right!
Apologies, if I may sound harsh but I have spent many years being quiet and apt. Now, I am running out of time and watching too many kids fall off the edge. Our fight with this cognitive delay never ends. The delays created in the comprehension of these young minds is quite unique to India - thanks to inclusion, I can confidently state that it is a well-meaning professional's worse nightmare!
If you do not understand what we are doing, at least make the effort to understand. You I am sure do not have a comprehension problem. Instead of breaking us, help us build. Many professionals like me who come from abroad are disillusioned and there is a reason for it. If both these communities can't work together then it can't always be that one side is wrong. Be fair and be kind like my boys. Help us stop this. Help us correct this. Make the change, build a revolution. Make it real and build a world that is truly inclusive and not a hallucination of what you think is inclusive for your children.