July 25, 2018
I vividly remember it was my first visit to an orphanage to celebrate my birthday in the year 2000….when Autism entered my life. It entered both as a whisper and as loud cries respectively of a pair of fraternal twins who had been abandoned by their parents and later adopted by this orphanage. Before this I had never encountered Autism in person. Two hours of my interaction with these two six-year olds, Autism entered my brain as a possibility. Why? Because these two had amazing skills to paint and sketch! They had wings, the society had clipped those and the two were desperate to fly.
2018: Thanks to the efforts of my few close friends who joined in to get them the right kind of training, this duo is selling its art across the globe! But do not want their names to be mentioned. Why? Because the moment their name pops up in media, their estranged parents try to chase them in an attempt to get them back…for name, fame and money. And the duo just wants peace.
There are many such stories which are an inspiration in daily life. Stories of Autistic children who are craving for your love and attention, because they are special in their own ways. But you may not hear them, you may not understand them. Why? Because you don’t know what world looks like or behaves like to those with Autism.
And after an extensive research and interviews, I bring ten real-life examples where ten Autistic people will tell you how the world looks like to them or behaves with them. Post that I leave you heart to decide, what next….
1. WE MAY NOT TALK, BUT I HAVE LOTS TO SAY
Silky Mishra from India is an Autistic 16 year-old piano player. She communicates to me through her instructor, ” Only 20-30% autistic people are estimated to be nonverbal. But is talking the only way to communicate? No. We use sign language, we use our pen, we are taught what is called AAC – Augmentative and Alternative Communication. Our problem is not that we can’t speak, our issue is that you the world don’t bother to listen to us!” Her instructor tells me how agitated Silky was while replying this, but later calmed down when she was told that this journalist wants to take your message out their to the world, to make the world hear you. Later, Silky sent me a one minute tune she had created on piano to thank me! I could not stop my tears. Yes, she has lots to say, all she needs is ears and empathy.
2. WE DON’T NEED SYMPATHY, WE DESERVE EMPATHY
Silky’s instructor Geeta Pai is also mentoring another hidden gem. Sumon Banerjee, a 21 year-old Autistic artist who creates music through utensils. Geeta spotted him five years back, at one of the special schools she used to visit. She noticed what the cook called noise, during the lunch break, actually had a certain rhythm to it. She took a tabla player to the spot and uncovered Sumon’s talent to the world. Today Sumon has six national concert participation to his credit. Sumon says in broken words, ” People use to sympathise with me. Geeta Mam was the only one who came to me with empathy. We don’t need your pity, your sympathy. We need wings to fly!” Smile traverses my heart.
3. DON’T FEEL AWKWARD, DON’T MAKE US FEEL AWKWARD EITHER
“People don’t need to feel awkward for who I am or when they are round me. I might need to be treated differently, pulled along on a wheelchair or spill food when I eat. But that doesn’t make me weird. Stop staring at me,” 12-year-old John Cardison from Jamaica writes to me through his mother. And she in-turn adds that she is proud of her son who is a budding photographer.
4. YES, WE DO MAKE SOUNDS AT TIMES
“When you jump with joy after graduation, when you applaud for yourself after winning an award, don;t you get excited? Don’t you make noise which you term joy, excitement, applause, etc? Similarly my child too gets excited, makes certain kinds of related noises. The only difference is that his frequency of excitement is more than yours, because every little success he gets, is by overcoming his Autism and that’s a way bigger achievement than yours. So stop staring at him,” says Colin John Cameron from London whose 7-year-old grandson Darn Cameron is an avid playing-blocks builder and specialises in robotics!
5. STOP JUDGING US
Colin J Cameron’s neighbour too has an Autistic child, 4-year-old Robert Danny brown, who excels in playing violin. His father Don Brown informs me, “From onlookers who think I am not addressing my child’s odd behaviors, i will simply say: STOP JUDGING MY CHILD, HE IS MY RESPONSIBILITY, NOT YOURS. Try to understand, your actions create an environment that affects him. if you can’t act sane, stay off my kid.” Brown is very stern and in actions, I am told. A very protective father.
6. WE ARE EXHAUSTED TRYING TO BE A PART OF YOUR WORLD
Autistic blogger Jamie Clara Jane from Australia writes to me, “From social interactions to managing sensory issues and everything in between – it is a Herculean task to be a part of your world. Being a part of allistic world as an autistic artist requires constant effort on our parts, we don’t have leisure time you all do. So my message to the allistic world who doesn’t accept us the way we are is : We are already exhausted trying to keep pace with you never-caring people. So for God sake, don’t burden us with your stare, your thoughts, your unnecessary suggestions and of course your pity.” A chill runs down my spine. She is showing us all the mirror!
7. WE HAVE SENSORY SENSITIVITY
“Yes, we have it. you might be fed up with out loud sounds we create, the way we speak. But we have our own issues. We have to undergo a lot of sensory sensitivity and sensory overload training to tone down our speech, our volume. But still, is it just by-default in us, like a computer program. But when you subject us to the same sounds, volume, our brain can’t accept it. So be patient and not loud with us,” requests Antonio Superano. The 22-year-old has recently migrated from Italy to Johannesburg with her writer parents. And is finding it tough to how people react to her in this fast-paced city where they are presently lodged.
8. BEING AUTISTIC MEANS BEING VERY LONELY
I need not elaborate on this issue. By all of you readers have felt how it feels to be an Autistic individual. The twins whom I spoke about at the beginning of this article, had already spent 15 years at the orphanage, alone, since there was not other Autistic child except them. Imagine the life they had? Despite the fact that, none of the children ever mistreated them. Till they found their instructor in Radha and Shyam Sudha, their life was quite a lost one, in solitude.
9. ACCEPT OUR CHILDREN THE WAY WE ACCEPT YOURS
This is the only simple yet strong request of 78-year-old Ramona Cilantro of Poland, who has seen three generations of Autistic children in her family. A strong woman, she has kept her joint family intact, ensuring that none of the autistic members of the family ever feels lonely or being looked down upon. “I ensured that it must start with my family first and then go down to my neighbours. If I accept their family as who they are, they have to accept mine as they are. No compromise, no adjustment,” recalls Ramona. And this “even if” meant teaching her neighbours about Autism, despite their reluctance in the beginning. Now Ramona, her family and their neighbourhood is soon setting up a school for Autistic children in Karnataka, India.
10. WE DON’T NEED TREATMENT ADVICE
Janani Iyer an NRI based in Chicago writes to me how people in India and later in Chicago too use to dole advice to her, to get her ten-year-old daughter ‘treated.’ She lost her patience when her own grandmother walked up to her at a family function (when her daughter was making certain kinds of sounds and the gathering staring at her). “My granny told me to consult an astrologer as well as a Tantric! Imagine! That’s when my husband and I walked out from the house. We decided to not let people mess with our child and our emotions in any further way. Later in Chicago, we learnt how to toe the line to our neighbours,” Janani tells me on phone. Her daughter Vashvi is 14 now and writes to me, “Aunty, I am not unwell. I am just born different. And doctors know I can’t be treated. I pity these mentally uneducated literates who can’t understand this simple thing. Why can’t they?”
I had no answer to Vashvi; no answer to her even in this digital age, when people can simply Google up ‘Autism’ and read about it. I had no answer to her simple, yet so difficult-to-understand point, by the so-called educated and fast developing world.
Perhaps how you treat an Autistic person in future, after reading these ten real-life stories, can help me answer Vashvi? Or may be help you answer your own conscience? If somewhere this article touched a chord of your heart, don’t forget to share this article.