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in a lighter vein

Indian Pediatr 2019;56:689

In the Shoes of a Child with Autism


Archana Kadam

Developmental Pediatrician, KEM Hospital, Pune, Maharashtra, India.
Email: [email protected]

 


Dealing with children with disability has been an exciting journey for me. Some children with Autism spectrum disorder (ASD) have normal or above-normal intellect, but have difficulties with social communication and social behavior. They may be intensely preoccupied with unusual things, love adhering to routines, have difficulty expressing their feelings, and find processing normal sensory stimuli challenging. It is a marvel to see how each child sees the world differently, and each encounter teaches me something new.

Over the years I have realized that in addition, parents want answers to specific issues: for example, "why does he start shouting in the doctor’s waiting room if he has to wait?" Children with ASD have difficulties putting themselves in the shoes of non-autistic individuals. That is why they need to be taught what is socially appropriate and what is not. A ‘social story’ is a short description of a particular situation, event or activity in a format of a story that includes specific information about what to expect, other’s perspective and a suggested appropriate response in that situation, i.e. ‘How to behave in a doctor’s clinic’. Using a social story related to the situation and providing coping and calming sensory strategies can help the child handle stressful situations.

We expect children with autism to conform to our expectations and behave the way we want them to, not the way they want. It would be easier for everyone if we could understand the reason why they behave the way they do and try to be a bridge between them and the outside world. I penned the following poem in an attempt to put myself in the shoes of a ten-year-old boy whose preoccupation is mathematics, who has sensory issues related to smell and who has his own anxieties that remain unnoticed to others beyond immediate family. This poem is dedicated to children on the spectrum who with proper guidance and intervention may achieve their optimal potential and be able to integrate themselves in society in a much better way.

A Mathematical Social Story

I’m just like any other child walking into the doctor’s waiting room.

I wear my favourite orange T- shirt with my age mentioned on it in square root. 

I carry my little bag with me that has my name and mobile number;

it has my kaleidoscope, my Rubik’s cube, my scent and my math’s notebook.

My appointment time is 9: 30 am - I’ve reached 12 minutes early!

Mother confirms that I have to wait till the minute hand turns 72 ° clockwise.

I start looking around the very familiar trapezoid waiting room, the same fish in the fish tank; one orange, three silver and five black .

Is my first odd numbered orange fish missing today?

Oh! There he is, waving his fin at me from behind the java fern.

He has a spot of silvery blue below his fin that is collinear with his tail tip and his left nostril.

The room is smelling different, no smell of the disinfectant today,  

It smells of milk, white and frothy; and I know why.

The little girl before me spilt it as she ran around in circles.

Whirlpools etching invisible patterns on the floor, circular creamy smells.

My head’s spinning now and I need immediate action.

I dive into my memory to retrieve my social story for "when smells bother me!"

When there’s change, the probability of me getting upset is quadrupled by smell.

I must divide it by 2 by using my Rubik’s cube for 3 minutes.

Divide again by my favorite scent the lavender oil that is in my bag.

That brings my mathematical equation back to normal.

That’s a hard one for you neurotypicals to understand, isn’t it?

One day I shall devise a simple equation to explain the underlying logic to you.

I wish your faces and eyes had a numerical formula too, to let me know what goes on inside, so I could then decode you right.

I have Autism – I learn the rules of your world on a mathematical graph.

Please help me learn exponentially and optimally!


 

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