Do you know what Albert Einstein, Amadeus Mozart, Isaac Newton and Michelangelo have in common, besides been considered as genius? They are all said to have had autism and displayed classic symptoms of the autistic spectrum disorder. Autism affects the way an individual communicates and interacts socially and is believed by the United Nations to reach 70 million people throughout the world. This makes autism the third most common developmental disorder, affecting upwards of 10 million of people in India – 6,00,000 autistic kids await proper response from the government and the majority of them have not received a diagnosis or any kind of intervention.
Driven by a strong desire to change this scenario and create a centre which could cater to all the issues concerning a child with difficulties, Surabhi Verma founded Sparsh for Children in 2005. The organization specializes in Autism and Dyslexia and also works with attention, speech & language difficulties, aiming to show a way and touch the heart of millions of intellectually challenged children, integrating them and their families into the society. Surabhi was still attending her masters at the Maharaja Sayajirao University of Baroda when she realized the amount of limited information on autism available at college. It aroused her curiosity to learn more about this disability and to work with children with autism.
Sparsh for Children is committed to act as a catalyst that helps special kids to successfully cross over the real world. With a mission to provide the highest value-added hands on and therapeutic services to various children, families and schools, they developed and introduced innovative structured training courses to nurture the abilities of special needs children, carrying out interventions ranging from Special Education, Occupational Therapy, Play & Study Groups, Early Intervention Center, Speech & Language Therapy and Psychological and Family Counseling, designed individually for each child keeping in mind their needs, strengths and baselines. “It is important to remember the fact that autism is a spectrum disorder: no two or ten children with autism will be completely alike. Every child will be at a different point on the spectrum”, says Surabhi.
This is what makes autism often hard to understand. One child with autism may not speak at all, while another might speak using complete sentences and may even have a flair for languages. One child may not play with toys, another might play with blocks and puzzles, and yet another may appear somewhat typical in play activities; all three children can have autism. Just as the definition of autism has ‘evolved’ over the past thirty years, researchers are continually examining different subtypes and groups of children in the hope of earlier diagnosis.
Breaking down myths and prejudice
Though India is one of the first signatories to the United Nation’s Convention on Rehabilitation of Persons with Disabilities, the ignorance level about autism is very high, and also treated as a social stigma. It is often difficult for parents to take their child to public places as they have to face stares and insensitive comments. There are laws in the country which try to provide benefits to people and children with disabilities but unfortunately there is still lack of infrastructure even at public places for them.
According to Surabhi, the most challenging task for a child with disabilities is to get social acceptance within the society. “Children with autism are treated with despair that they will not be able to lead a normal life and are a liability to the parents for their whole life. Also, our social structure has a demerit in which children are always compared with their peers, which puts an additional burden on the parents”.
“It is imperative to create social awareness about autism to increase acceptance in the society, as people often mistake this development disability as a mental disorder: autistic children are wrongly branded as ‘abnormal’ or mentally retarded or unsound and end up becoming the laughing stock of the society and are often discriminated. People having autism may be different learners but, as Albert Einstein has proven, they do have brilliant minds”, opines Surabhi.
Although autism is not curable, its symptoms can be addressed with appropriate interventions and many children can be educated and integrated into community life. Without accurate early diagnosis, children with autistic spectrum disorders can be condemned to a life of inadequate provision, their special needs not tackled and their future lives devalued. That is the foremost challenge faced by Surabhi and her team at Sparsh. “Not many parents are willing to accept that there is any difficulty with their child. We sometimes waste crucial time which would have been fruitful if the interventions could have been started at an early age, for which we start therapies from the age of 1.5 years; that can take the child a long way ahead. When they come to us and start receiving therapies early, many are able to pursue their life’s routine without our help, just like other ‘regular’ children”.
At Sparsh for Children there are various ranges of professionals involved, ranging from special educator, psychologist, speech/ language therapist, occupational therapist and a child psychiatrist. “Helping children is a team work, thus finding likeminded people to maintain the quality of interventions is imperative”, complains Surabhi. Another major challenge is to find regular schools willing to include children with different abilities with regular students, and work with them.
A shine of hope into an obscure condition
A true testimony of the hard work being put into by the Sparsh team may demonstrate the triumph of an autistic child’s development and evolution. R* first came to Sparsh when he was 3 years old, diagnosed with Mild Autism Spectrum disorder. Now, studying in a reputed south Delhi school, he stands in top 10 of his class, which has 40 children. R is participating in Math Olympiads and football tournaments. “It was an achievement when the school principal asked the parents ‘Are you sure he has Autism?’”, celebrates Saurabhi.
A second case study is about A*, who is now 17 years old and studying in 11th standard. He scored highest in English and Business studies through open school in his 10 board exam and continues to be at the top of his class. “A could not go to school until he was 6, but with continuous help and therapies he has managed to come this far”.
The only way to measure the impact is by observing the child showing improvements in his level of functioning. The more children they are able to successfully integrate into mainstream schools and continue further studies, the more they feel that they are on the right track. Future plans for Sparsh include expansion by tying with different organizations to enhance the learning process and also looking at avenues to create employment opportunities for these children. Surabhi shares, “In the lines of inclusive schools available outside India, we also plan to build an integrated setup in which the differently abled children are also provided equal opportunities.”