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It was during one of my late evening walks that I bumped into Kartik... I was playing with a neighbour’s extremely hyper puppy when I felt someone by my side, trying to hold on to my arm. That was lil’ Kartik as I heard his Mother hollering his name from across the park. I saw a mixture of fear and excitement on Kartik’s face while he watched me with the puppy and so I brought the puppy close enough for him to touch her but in all this he never let go of my arm. Of course Kartik’s mother apologised profusely for the intrusion though I felt that there had been none. It was in my next meeting, when I saw Kartik making his way to me in a rather awkward manner that she shyly told me that Kartik was autistic and that is why she always had him in her sights.
We spoke often after that... Kartik, friendly at times and some days very distant but I noticed his mother Kiran’s face was always strained and anxious. Even though our meetings were not very regular, Kartik took to me as a friend and I became Kiran’s confidante. Her life had been an uphill task dealing with Kartik’s reclusiveness and sporadic behaviour. With a husband who worked more than 12 – 14 hours in a software firm, and hardly any family support, she was at her wit’s end. Attending school for Kartik was a challenge and making friends with his peers even tougher. There were good days and bad days and my small interactions with them came to an end when they moved to Hyderabad.
However for Kiran, day to day management of Kartik is not easy...not comfortable being on the social media or even accessing emails or taking time out to do any form of online research of her own, her resources to deal with such circumstances are far from simple. There is also a huge inhibition in even talking about her son’s condition. Frequent school changes and finding the right counsellor has left her at her wit’s end.
This is when I came across Harshita Mahajan who is the mother of 17 year old Sahil. She is an MBA who worked in the Finance sector for 10 years. When Sahil was diagnosed with Autism in 2000, she resigned from her assignment at HDFC Bank and devoted herself full time to researching and implementing treatments to help Sahil. Harshita was on a steep career path but she gave it all up without a blink and without any second thoughts. She firmly believes as I do too... That everything in life happens for a reason. She is first and foremost an advocate for her wonderful son and his treatment, wellbeing and inclusion in society is what guides her life. She is a firm believer in the power of committed individual parents and also parent groups in bringing about the change in society and infrastructure that is needed by these children. She was a founding member of SAATH a parent support group in the NCR region. Through this, parents share with each other information, and resources, social interaction and emotional support. She also was an active fundraiser for the vocational program of Muskaan and the special needs poverty outreach division of Ashish Foundation, raising several lakhs for them.
Harshita started a blog that documents some of the experiences of the many treatments undertaken with Sahil and the ongoing research of programs/protocols that help special needs children. Even though her day starts and ends with Sahil and his activities, Harshita took to photography as a tool to help in her endeavours. For her, it is a form of expression of all that she feels a platform to provide resources and an insight into their lives. In Cleveland, where they now live, she teaches adults with special needs photography and also does voluntary photographic assignments for the Board of Disability. She continues to network with parents like herself and administers another e-group of parents of South-Asian origin of children with autism.
Harshita says that her family life has never had a long and continuous rhythm as they changed locations, schools, therapies and interventions every couple of years. Challenges have been a plenty, the biggest being their move to Cleveland. But this also gave her son one of the biggest opportunities to progress well. Slow baby steps, a whole lot of patience, compassion and perseverance have gone a long way in helping Sahil adapt. Harshita looked at internal cues and making changes in Sahil’s diet to reduce his anxiety and increase his resistance to infection and there is a noticeable positive change in his demeanour, growth and motivation to participate in activities.
While Kiran and Harshita’s lives have taken different paths with both handling the situation in different ways, the answer in handling autism is never easy and the road ahead bumpy. A condition that shows signs of being present in probably the first three years of a child is the result of a neurological disorder that has an effect on normal brain function, affecting communication and social interaction skills. The exact cause of autism is not known though recent research indicates that it could be a combination of genetic and environmental factors.
It is said that India is home to more than 10 million people with autism and the disability has shown an increase over the last few years. Sadly these symptoms are usually ignored by parents and are undiagnosed or misdiagnosed by many medical professionals, including not recognising growth difficulties which is the reason for the higher numbers in the country. Of primary importance for an autistic child is a proper diagnosis, which sadly our Government hospitals lack in basic equipment for the early detection of the disability and autistic children usually face discrimination and disparity by school authorities and even students. Autism is a spectrum and the diversity seen in children with autism is mindboggling.
A decade or so back, probably one of the most mismanaged disorders in India and also one that parents and family shied away from discussing openly was autism but now over the years, there have been remarkable positive developments in dealing with this condition. India has done well to start work in autism and there is a marked increase in support groups; schools that are able to handle autistic children, behavioural and learning centres and web based portals to handle the challenges. Unfortunately all these come at a great cost and the flip side being that there is a huge divide in who can use these resources and who cannot. The lower middle class and the poor suffer the most as the facilities being offered come at premium prices. Autistic children in poor homes are often neglected and even ditched and left to fend for themselves.
Also, it is the parents with resources who mostly start the initiatives having faced similar situations at home or within the family. There is now a lot of knowledge available on the net...support groups get formed locally and worldwide where parental initiatives are discussed and shared. These go a long way in easing some of the challenges being faced. Foundations and Societies such as the Autism Society of India, Action for Autism, Apoorva Centre for Autism, Sankalp, Pratheeksha, Soch, Umeed, Ashish Foundation, Shaurya Center etc. work hard at improving the quality of life of individuals with autism through direct services, advocacy, and research. Their mission is to enable the empowerment of people with autism, and to facilitate a change in society’s mind-set that will allow people with autism to live as fully participating members of society. They also promote awareness and sensitization in the community as well as in medical, legal, educational and other related fields through awareness and training programs.
The facilities required for autistic children are however insufficient and since they find it difficult to learn in groups, often it is seen that teachers are not trained sufficiently to teach them in class with other children. These children need trained therapists and educators who make them feel comfortable and teach them more of social skills along with academic work. They however are very expensive to hire. This is where parents have proven to be the biggest educators and role models for these children. Health specialists point out that parents must help the children realise their real potential and encourage them to fulfil their dreams. While early intervention is being taken care of now, it is during mid-school that an autistic child finds it the hardest to keep up with his peers and slowly the gap increases and the resources for teaching them reduce. Vocational centres for these children after school years are few and far between examples of these are Shaurya Centre and Ashish Foundation, both started by parents. There is a requirement for many more to handle the load.
Unfortunately lack of awareness hinders mainstreaming of autistic people by the society. Acceptance by the society is all what these people need today as people often mistake this development disability as a mental disorder. Some suffering from autism may be slow learners but some as Albert Einstein has proven, do have brilliant minds. Harshita’s son Sahil has a tested IQ of over 132.
The way ahead is to deal with autism in a progressive and constructive manner. It is an onus on the society to help achieve these goals and bring in an autism-friendly world. Reaching out and helping in every little way possible will surely benefit in bridging the wide gaps.
