My search for data on the number of children suffering from autism and the disorder's prevalence in India led to a huge disappointment. The website for National Centre of Autism in India, which should have provided all the details, simply shares the data released by the Centers for Disease Control and Prevention (CDC) in April 2014 on the prevalence of autism in the USA. This speaks volumes about the lack of attention and importance autism has received in India and the scope of research and action that needs to be taken in India.
Children with special needs, learning disabilities and autism continue to be treated as pariah in the India society. In 2005, Surabhi Verma started Sparsh for Children, a multidisciplinary therapy centre located in South Delhi to help children with autism, dyslexia and other learning disorders and transform their lives.
According to the 36-year-old, across the globe one out of 56 kids has autism and five to six students in a class of 40 students are likely to have one or the other form of learning disability. “With better diagnosis and awareness, more cases are being identified, which were earlier passed on as weak students or someone who is not interested in studies,” she explains.
Surabhi started almost a decade ago with a team of three employees and five kids. Today, Sparsh caters to about 100 children with a dedicated team of 15 employees.
During her graduation, Surabhi opted to study early childhood development. She was so fascinated by the topic that she decided to work with children with special needs and began training for the same. In 2000 she completed her graduation in Autism from University of Birmingham in UK and Masters in Child Development from MS University, Vadodara. Her stint with Max Hospital and a few schools and therapy centres made her realise the urgent need for a multidisciplinary approach and services under one roof to help children.
“It was a very disheartening situation; parents were running from one place to another looking for best therapies and there was no one to guide them correctly. A lot of their time was being spent in travelling, which was tiring for the parent as well as the child. The need for a therapy centre where all the services—early intervention setup, special education, occupational therapy, speech and language therapy, play and study group therapy and psychological services—could be provided under one roof led to setting up Sparsh For Children.”
At Sparsh, Surabhi functions as an Early Intervention Centre (EIS), as well as offers therapies and intervention techniques that range from special education, occupational therapy, play and study groups, speech and language therapy and psychological assessments and family counselling for differently-abled children with Autism Spectrum Disorder (ASD), learning difficulty/dyslexia, attention difficulties, speech and language difficulties, intellectual disability and social and emotional difficulties.
In other words, they provide an integrated and holistic service where different aspects of the therapy
are planned in concurrence to enhance the child's capabilities, which otherwise may have remained untapped. Sparsh caters to children in the age group of 18 months to 20 years. The full-time and part-time employees include qualified special educators, occupational therapist, speech and language pathologist, and child psychologist. There are many volunteers who work with the organisation and provide help wherever required.
“The mantra is to start the interventions early to bridge the gap. We start therapies for children from the age of 1.5 years. Along with the children, their parents are considered as an integral part of the team and are equally involved for goal setting, planning and training the parents for achieving optimum results for their child. The goals and results are checked and updated on a regular basis to keep a check on the improvement graph of the child and also help in planning the next step.”
Unlike the challenges other entrepreneurs face, Surabhi’s can get to be quiet frustrating. Finding quality professionals is a challenge but what’s more irksome is the lack of seriousness from parents and the perception of the society. “Erratic therapy schedule because of parents has an adverse effect on the child. Since each child and his/her needs are unique, innovative strategies have to be planned for each one of them. This also means that all children would not improve and progress with same speed and thus striking a balance between our expectations and the parents' expectations and helping the child move forward is the true challenge.”
Finding institutions that can provide vocational training to these children after they reach a certain age and skill level poses a problem too.
As a private setup, their revenue comes from the fees for therapy. The profit margins in this sector depend a lot on the fixed costs. “Since we are working with children with special needs, a lot of space is required to create the infrastructure for various therapies,” Surabhi points out. The overall profitability ranges between 12 and 25 percent, depending upon the fixed cost incurred and the pricing of the therapies.
“For parents and children belonging to economically-weaker sections, we also provide the services at a discounted rate as we believe that no child should be deprived from the therapies that can help them overcome the difficulty,” she says.
One of the ways Surabhi measures impact is via the number of children her team has helped successfully integrate into mainstream schools and professional colleges. One such child is Amit (name changed), who joined Sparsh when he was 10 years old. He had trouble with thinking and remembering, attention span and learning ability. Over the years with therapy his understanding and other abilities improved. He went on to get a distinction in Class XII CBSE board and cleared hotel management exams and joined Bachelor's of Hotel Management with ITC Welcome Group at their institute in Manipal. He is now working with a five star hotel in Bengaluru.
These are the stories that keep Surabhi going. “I have never let what I do impact me negatively. So every time I look at a child and see what I can do to make things better and positive, and that helps me stay motivated and positive.”
Operating in a niche area, sustainability is not a challenge for Surabhi. Driven as she is by larger goals of creating impact she has started reaching out to schools in Tier II and III cities to set up centres in the school for autism.
However, while Surabhi and Sparsh are there to help these children, a visible impact in this field will only be visible with a change in the perception of the society we inhabit. “The society should work towards providing equal opportunities to the children with special needs and should not discriminate against them. It is important to understand that these difficulties are not a form of disease and there is no cure. These are special and permanent emotional and psychological needs of such children.” And that is food for thought.