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Stars on the Spectrum

Asperger’s. Autism. Pervasive Developmental Disorder. (PDD). Pervasive Developmental Disorder otherwise not specified. (PDD-NOS). Autism Spectrum Disorder (ASD).
An American problem? A health care concern? A global phenomenon?

The CDC estimates that one out of eighty- eight children in America would be diagnosed with an Autism Spectrum Disorder by age eight. Boys are five times more likely to be diagnosed on the spectrum than girls. That means roughly 1 in 54 boys as against 1 in 252 girls. 1 in 6 children in America was diagnosed with a developmental disability in 2006- 2008. The numbers could be much higher today. So is it the prevalence of diagnosis in America that is labeling the children in the West to be on the spectrum or is it really a physical, mental, genetic, psychological, neurological and health care issue that needs attention? Or wait, are we all on the spectrum?

Read through the long check list and we are all bound to fall somewhere on the category. Diagnosis is still more or less subjective even after millions of dollars of research. Psychologists have gone back and forth in adding, deleting and finally establishing that the standard word that will be used is Autism Spectrum. No more Aspergers. No more high functioning child or low functioning child. Just plain spectrum. That makes things easier for America right? Wrong. Just plain confusing!

Being a parent is hard. Being a parent of a specially-abled child even harder. Autism support communities, networking facilities, outreach programs all hope to create that community of support much needed for the children but much more for the parents trying to grapple with a toddler whose language and behavior they find hard to comprehend. Walk through the aisles of library and there are books written by parents, doctors, psychologists, and once autistic children hoping to lend a voice to better understand autism. One click of a button and the internet is replete with articles, opinions, facts, data sheets that overloads the reader with information. Two words to describe it all: More Confusing.

What makes Autism challenging is the wide spectrum by itself. No one child is alike although they may share characteristics of the same problem. No one stop solution can be the universal answer either. What works for one child may not work for another. No one size fits all medicine can be administered to fix this issue, because there is so much that is unknown. ABA, Play based, class room and one to one therapies have all been strongly argued for and against. Parents are pushed to a corner of the unknown trying to choose a therapy that works best for the child, or then again, it may not!

Autism speaks reported that President Obama committed to spending $1 billion dollars on Autism by 2012. In fact, he identified Autism as one of his administrations’ top three public health care concerns. Yet, so little has changed over the last few years. Classrooms are still not equipped with teachers and resources to deal with the challenge of integrating children on the spectrum with children who aren’t. There is still a basic lack of understanding among teachers, parents, and community at large as to what Autism is. The East says that it is an American problem. The West argues that it is just plain ignorance in the East. With an estimated cost of $60,000 US dollars per year for intensive therapy for young children in America, there is still very little hope in developing countries.

Walk into a public place like the library, church or community halls and there is still very little resource or support of facilities extended for children on the spectrum. Hop onto the railway, board a bus, train or airplane and the staff are still ignorant and poorly equipped to deal with children on the spectrum. Let alone expecting them to extend support to the child, parent or co passengers struggling to deal with the excitement of a child mesmerized by motions of movements, sights, sounds and routines that come with an unfamiliar place. Being on the spectrum is still more or less a parental problem. While there is so much spending being budgeted on research for Autism, it is painful that there is very little spending outside of it. All the money, talk, hype that has been created around children on the spectrum has done nothing concrete to better their everyday life.

Aamir Khan, Bollywood actor and social rights activist opened up a world of a billion minds on Dyslexia through his intense and vivid movie, “Taare Zameen Par”. (Stars on Earth) Singers Shankar Mahadevan, Dominique, Viviene along with Music composer Shankar Ehsaan Loy beautifully captured it in their composition “Taare Zameen Par”,

“Look at them, they are like drops of dew that hopped on to the leaves from the sky.
They take change in their own ways.
These gentle pearls who laugh when they slip
I wish these stars didn’t get lost on this Earth.
…Sometimes they talk like our grandmothers
Sometimes they become the bush full of inncoent questions
..I wish these stars didn’t get lost on this Earth” (translation taken from Ramya Shankar)

Only someone who has experienced Autism would truly understand how true the above words are. While it may be a billion dollar problem for the government, it is an everyday problem that affects lives in countless ways for those affected not just in America, but across the world.
I wish these stars had more to hope for…

susanvargheseBio: Susan Varghese is an avid reader, writer and lover of life. She is a Talent Acquisition Specialist by profession and enjoys being with children when she’s not working. You can find out more about her at about.me/susanvarghese

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