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Submitted by PatientsEngage on 8 July 2017

Madhusudan Srinivas, parent of a 24 year old autistic boy, Abhimanyu, shares the surprises a day throws up for families of people with autism. His life's vision is to ensure enjoyable evenings for all people with special needs, especially the community of young adults with autism. 

Blips on a screen, jumble of words for you, but way beyond reality bites for me, and for us in the autism community. 

Hi all, this is Madhusudan Srinivas, father of Abhimanyu  24 and autistic, and HAPPY, in New Delhi. 

Pic: Abhimanyu with a friend

Toh kya bataaein hum aapko, pichchley 24 ghanton mein, kuch saalon mein kya kya huaa hamaare aur hamaare saathi parents ke saath ..

i.e. Oh my dear world, my fellow citizens, of that 'normal' world out there, here are a few stories about happenings in the little Gaulish village called Autism, in the lives of our children, in the last twenty four and more hours. As the Beatles put it, Day after Day.... in the Fool on the Hill.

Its a tough life, but we get by, we never give up, we can't, for the sake of our children, many of whom remain 'children' in body, mind and spirit despite their technical physical age. 

To start with, Abhimanyu who was born in March 1993, still needs nudges with his toileting activity when he gets up in the morning. Does that make him a lesser human being? I think not

He needs help with brushing his teeth, with changing, with realising that he's perhaps a little wet near his groin, and with the judgement call that perhaps he needs a fresh set of clothes. He needs help with realising that its time to bathe. So we select the clothes, open the tap get him into the bathroom and close the door. 

Its not that he doesn't at all realise; he finds it difficult to articulate, and to act upon that articulation. He sometimes jazzes off and has a whale of a bath, and comes out choosing to wear multiple briefs one on top of the other, and T-shirts too the same way. (hahaha that is always fun :-) for all of us at home who are his caregivers. 

CUT ACROSS... to nearby Gurgaon, high tech city, where young Rahul D'Mello, just out of school and in his first year at engg college, the brightest spark in our community , lives with his parents Deepali and Gerard D'Mello. 

Rahul has fought through rejection at school, not your neighbourhood sarkari govt school but many high profile, 'inclusive' (lies, damn lies) schools in Gurgaon. He's also finally found godparents in the school that he finally went to. Through it all, Rahul has come out with flying colours. 

BUT, on this day, Deepali calls me and says massive seizure, inexplicable epilepsy like a Knock-Out attack. KO'd for five minutes. In the middle of the hot summer that is turning into a rainy day, I rush off to be with Deepali and Gerard, and discover that while the family is worried, Rahul is back to being his lovely, cool, insouciant self. 

CUT ACROSS, again, to young Manvendra and Roli, parents to an 8 year old autistic boy. Manvendra is my younger brother's colleague. He's just moved to Delhi from the back of the beyond in Madhya Pradesh, Shahdol, where they somehow, miraculously got a diagnosis of autism for their boy. He's moved to Delhi after many consults with me/us/the people I recommended he speak to - educators, specialists, all. 

Manvendra has made a life altering choice. To what end?

Its been four months since the move, and they are juggling home economy, school opportunities, speech and other therapy choices. He works for one of India's largest corporate houses, But at his level, the income is limited, and the money that the Autism Villain guzzles is worse than any fancy car in town. 

Autism is practically unaffordable for Manvendra. Yet he's not complaining or keeling over, Roli and he are just carrying on looking, carrying on as best as they can.  

Autism is unaffordable for gazillions of parents across income groups, from the fancy high-rises of gurgaon, to any old village in this vast country of ours. 

What's more, ironically, sometimes , even if you have all the money, you realise very quickly, its not just about money. It is about acceptance, and finding the right place/people to go to, for our children. 

Autism is unaffordable because of utter lack of governmental and societal support. Empathy can come only when there's understanding. There is NO understanding of either the sheer numbers of diagnosis, or the specific nature of needs and support. 

So when there's NO support, from the time that we got our diagnosis for Abhi, in the nineties, to now, what do you do?

SUPPORT YOURSELF. 

And I'm proud to report to you all, that's what groups of parents in Delhi, in Mumbai, in Kolkata, in Chennai, and elsewhere in India, have done for themselves.. 

Not by the ability to generate funds and create schools. But just by being there for each other, in that hour of need. Just sheer plain emotional sustenance. 

So as I see my friends Deepali and Gerard head for their doctor appointment for young Rahul and his seizure, I head off to their closest neighbour, Charu and Sandeep Sharan, and their son Sachin, who is autistic too, a little younger than our Abhi. 

There's no crisis here, thank god, touch wood, so I get breakfast, juice, and we hum along some old filmy numbers with Sachin and his sister Diya. 

Pic: Madhu with Charu, Sachin, Diya and Sandeep Sharan

Then, suddenly, we stumble along into that dreaded question, WHAT AFTER US?
And the next two hours just go. 
with the conclusion -- NO CLEAR ANSWERS, WELL NOT YET. 
But we are convinced they will come. 

And that's where I'll end this one, this one bunch of stories, this outpouring of my/our hearts... do write in to say if all this touches your heart and impels you to action, whatever little thing it may be, wherever you are. 

Madhusudan Srinivas is in his fifties, and the parent of a 24 year old autistic boy, Abhimanyu. He and his wife Shubhra Gupta are both journalists, and they have lived and worked in Delhi for three decades. Madhu says he is primarily an autism activist/advocate and then a journalist. His life's vision is to ensure enjoyable evenings for all people with special needs, especially the community of young adults with autism.

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