The Serrendip aims to create affordable, accessible ways to enable inclusion of people with autism
December 21, 2018
A common neuro-developmental disorder, autism also ranks among the most severe developmental disorders in children. Studies show there are nearly two million children with autism in India. Yet, it has slipped the attention of policymakers in India.
It's a neglect also evident on a global scale, says Kavita Sharma, Founder-Director, Prayas Lab and Vice President, North India at Autism Society Of India, who points out that autism has also slipped the attention of mainstream goals like the United Nations' Sustainable Development Goals (SDGs).
"The 17 SDGs to transform our world do not focus on disability in general and autism in specific. Where do we really fit it?", she asks. "If we focus on SDG #4, which is Quality Education for All, my question is - Is inclusion as a culture, policy or practice is happening? Do we have quality human resources, have the issues related to accessibility for autism addressed, has autism been seen as a neuro-diverse condition and that it can be an advantage in a work place?"
No study so far has highlighted the fact that if given early diagnosis and early intervention, the socio-economic rehabilitation costs incurred by a family of a person affected with autism are reduced and that it can lead to a rise in the GDP of a country.
With the aim of taking autism out of the "blind sport to a bright spot", Sharma along with others, has started The Serrendip, an organization that aims to change society's outlook towards autism. It aims to bring together on the same platform, policymakers, educationists, healthcare professionals and corporates to discuss effective ways to make this happen.
The Serrendip aims to look at the problems which have simpler and affordable solutions, more so in the tier II cities and rural areas of the country. - Kavita Sharma, Founder-Director, Prayas Lab
Unlike most such organizations that are located in metro cities, The Serrendip will be based out of Jabalpur, Madhya Pradesh, a choice made after much careful thought. Services in states like these are of poor quality and there are few training programmes to develop human resources.
There is also poor awareness among parents, who have no idea how to help their children realize their potential. Those who do are forced to travel outside to access these facilities.
"Awareness is rather low so the aim is to help people connect and understand", says Shailja Sharma, a lawyer with vast experience in disability laws, who is a part of the technical advisory board of The Serrendip.
"Even in a city like Delhi, people do not know what the schemes are for people with disabilities, the avenues for help and how to avail the laws", adds Sharma. "There is also a need to connect the community with the society at large. How will policymakers know what is needed unless they connect with the affected families?"
Dr Sharma describes The Serrendip as a "foundation of findings and applications for persons with autism and related disorders". The website - https://www.serrendipforautism.com/ has a section called Connect to the Correct which uses technology to connect people, including parents and professionals from all over the world. The role of the technical advisory board is to chart a future course of action for those in the group in their specific areas.
The board has an interesting mix of policy experts, therapists, education experts and lawyers to bring about a holistic, long term approach. Among them is Prathibha Doraiswamy, an educational technology consultant who developed Cuedin, an early intervention tool for special needs children.
"I am associated with bridging the technology gaps", says Doraiswamy. "There are a lot of gaps because most of the apps available are iPad specific, which led us to work on developing an app for early intervention. But we also recognized that there are major gaps when it comes to skilling which is eventually needed to enable them to become confident and independent. It needs to be end to end and that's how we got linked to The Serrendip".
Doraiswamy has also done a workshop for The Serrendip looking at how coding can be a good career for people with autism and is hoping to build a curriculum to skill them for jobs.
The road ahead is huge. Much needs to be done in terms of building awareness, as fellow board member Dr Vanitha Rao reminds us.
"So much needs to be done in terms of awareness of early diagnosis, early school interventions, etc.", says Dr Rao, who is a psychologist and special educator based in Bengaluru "Even in a metro like Bengaluru there are doctors who say wait and watch when a child shows signs instead of saying let's start right away. After all, autism has only been recently included in the RPWD Act".
Clearly there is an urgent need to find solutions - affordable, accessible and adaptable. And the launch of an initiative like The Serrendip, which is exclusively dedicated to people with autism, is a step in that direction.
To know more about The Serrendip, check out: https://www.serrendipforautism.com/
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