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Submitted by PatientsEngage on 28 March 2018
Image: Roshnee, an autistic girl in a blue dress with a painting in the background

Roshnee, 17, has autism and with the support of her family, she is learning to explore her potential in singing, painting and baking to lead a positive and productive life. Her grandfather Shishir Kant Misra shares her background and assists her in this interview. #AutismAwarenessWeek

 

Roshnee’s Background

Roshnee is 17 years old. She is my granddaughter from my daughter's side. Her parents are both doctors. I am an Engineer from IIT Kharagpur. After a successful career in the corporate world, I started my own business.

In 2002/3 her Autism was diagnosed and, in 2005, her disability was declared to be 90%. The triad of Autism, Communication, Social skill and Imagination all had affected her deeply. She had almost all features of Autism. Restlessness, almost no eye contact, anxiety, obsession to what she was doing, pinching, biting others and self, hitting, crying and laughing for no apparent reason (unexplained giggling and crying), hand flapping, screaming, tantrums, meltdown, picky eater, wearing only few dresses, sleep disorder (sleeping around 1/2AM and getting up by 4/5 fresh as a lark were common features and everyday affairs. We didn't know what Autism was. It was not taught in medical classes too, so her parents too didn't know much about it.

However, the news that Roshnee has Autism didn't knock us out. We studied about it and decided to face it head-on. We learnt that Autism needed intervention, close intervention. So we (her parents and grandparents) decided to live together, since this would give us time and opportunity to take care of Roshnee while her parents could concentrate on furthering their career and provide for Roshnee and her elder sister (who is neurotypical and final year student of engineering).

We learnt that Applied Behavior Analysis (ABA) was very effective in managing behaviors of children with Autism. We came across Dr. Smita Awasthi, first BCBA (Board Certified Behavior Analysts) from India and she became Roshnee's consultant. Intervention started in earnest.

We gathered that formal schooling was out of question. We worked on her strengths and supported her where she was weak. We observed her interest in music. We supported her and created opportunities for her to sing on stage.

We set our targets to improve and address her behaviours and improve her quality of life. We NEVER thought of CURING her Autism. Much later she showed interest in drawing and paintings and we got a teacher for her.

Presently, she is a good singer and a good painter. A calendar was made in USA using some of her paintings along with other persons on the spectrum, and taking a cue from there we made a calendar ourselves using only her paintings. It has been well received. Roshnee recently presented at an International Conference for Autism in Bangalore where she was Guest of Honour.

Roshnee doesn't have developed language. She cannot converse like you and me; she cannot read and comprehend books like we do. She has strong rote and visual memory and these are her strengths. So answers below are written by me (her grandfather) but they reflect true picture about her.

Interview with Roshnee (assisted by her Nanu)

You sing songs in different languages, different types of songs. Which one you like the best?

I know many songs... Dil hai chhota sa, Her Ghadi badal rahi hai roop zindagi, Ik pyar ka nagama hai, Chura liya hai tumne jo dil ko, Chhoo kar mere man ko kiya tune kya ishara I like. If you miss the train I am on, Que sara sara etc.

What is your favourite piece of music or song? Do you have a favourite musician?

(Roshnee gives a blank look. Doesn’t understand a word what I am talking about)

How do you learn and remember the various songs? Do you read the lyrics? How many do you remember?

I remember the songs by listening and then practicing with my music teacher. I have a strong rote memory. I remembered very many songs may be 20/30. When the number increased my Nanu started typing out lyrics in English and taught me sight reading. Now all my songs are typed and kept in front of me as a help, though I still remember all songs.

Check the YouTube links below to hear Roshnee sing

What do you like to do in your free time?

I listen to music on computer and laptop and iPad. I play snakes and ladder, carrom board, Ludo. I like to do house work.

Tell us about your friends.

My friends are Maugham, Manas, Prachi, Kalpesh, Safu. (These are names of some children from her special school.)

You recently went on a few trips. Did you enjoy the plane rides?

I have been on many plane rides. My first ride was from Kolkata to Glasgow when I was just 4 years and my autism had been diagnosed. My Nanu-Nani had taken me there where my Mama lived then. I had no problem in aeroplane or climbing on escalators. I like the window seat and I can exactly feel when plane leaves the ground. I feel very excited. (wide grin)

What do you wish for or look forward to?

(Future or look forward to, etc are often abstract concepts for persons on the autism spectrum. It is a different matter that parents try and make them proficient in some skills and then with their efforts put them in some job. So we have identified for Roshnee -

  1. Singing assignments
  2. Data entry work as she is good with keyboard and computer
  3. Making chocolates, cakes, cookies (these skills are in our target to train her in)
  4. Computer graphics-- a course of 18 months duration is to begin for her.)

 

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