Bursting The Myths Start At Home
In public discourse, autism itself lays shrouded with misconceptions. Most view it as mental retardation which has no scope of improvement. Autism really is an umbrella term for a wide spectrum of different symptoms, each with its own set of implications. What’s common across the spectrum, however, is a difficulty to communicate and acquire social skills.
“Many parents initially think it’s a speech problem, which autism is not. They take their child to countless speech therapy sessions. A person with autism could learn all the words in the dictionary but they’ll find it very difficult to engage in a meaningful conversation,” Saswati tells me, while still managing to keep an eye on everyone in her class.
A noise from the bedroom door interrupts her. She rushes there with alacrity. “Prakhar is in a really bad phase right now. For almost three days every week, he can’t move around much because of his stomach issues,” she shares.
Prakhar lives with severe gastrointestinal issues along with autism. Persons with autism do tend to have more gastrointestinal issues than neurotypical people.
Years Of Struggle: The Traumas That Shook Her
Saswati’s personal life has had a sequence of events so terrifying that they would make most of us crawl up into a shell and never come out. At a tender age of seventeen, she lost her father to certain undue circumstances at their house in Calcutta. Saswati’s mother was never the same after that day, and her siblings had severe breakdowns as well. Mustering a superhuman courage, she became the pillar for her entire family and chose to move forward even in the face of the tragedy.
She went on to complete her higher education, specialising in microbiology. After stints at various schools in Calcutta as a biology teacher, she married a man from Haryana and conceived her first child. All seemed to be going well. With her uncle being one of the top gynaecologists in Kolkata, she was confident that all would be fine.
However, complications arose just a day before her delivery. At birth, the infant was separated from her and suffered from asphyxiation. In the first twenty-four hours of his life, Prakhar had suffered severe episodes of epilepsy for fifteen days.
He recovered from this and spent the next few years as a neurotypical child. He attended a regular school and developed speech, though he had hyperactivity. At the age of four, he contracted a high fever and was rushed to the hospital, suffering two massive attacks of epilepsy within a month. These episodes caused permanent damage to his brain, and he came back even having forgotten his name. Saswati was devastated. For the first few days, she cried inconsolably, blaming everything on herself. For any person, this would be where they gave up.
Quitting Job And Never Giving Up
But Saswati decided to accept the reality. She resigned from her job as a senior biology teacher in a prestigious Delhi school and vowed to give her son everything he would need to lead the happiest life. She went around different schools with Prakhar, but 42 of them rejected him outright due to his hyperactive nature and severe behavioural issues.
When Saswati became a mother to her daughter Prerna, Prakhar was thrown out of his the then school. The untoward incident only strengthened her resolve to take up the responsibility of Prakhar and many others like him. She started her own special school in her third floor flat in West Delhi by the name of Prerna Special School on 1st July 1995.
For three years, Saswati struggled to maintain the school in the confines of her apartment with the school having a huge waiting list. Then she approached Kiran Bedi, the then Special Secretary to Lieutenant Governor of Delhi. Bedi allotted a space for the organisation at the Community Centre in Tilaknagar.
The Navprerna Foundation – More Than Just Another Special School
The school works with a wide range of intellectual disabilities in low income and low awareness environments (free of charge for those who can’t afford), often engaging college students for sensitisation. Saswati focuses on empowering the mothers to take responsibility and action.
“The mother is the primary caregiver for the child. We can only do so much with special schooling, real change can only occur when the mothers take charge. Consistency is only ensured when what is done in school is reaffirmed in the house,” she emphasises.
At the time of initial admission, mothers were asked to come twice a week to train and help with the school’s functioning. Those who attended regularly were offered a job at the centre, which became an incentive for others. Within a few years, the centre became self-operated by these mothers. Saswati continued working in this area, but soon questions about the future started bothering her. She realised that there is more to autism than just special schooling. Thoughts about how Prakhar would survive on his own concerned her.
Saswati Singh’s Trip To USA That Opened Her Eyes
Around this time, she was selected by Maneka Gandhi (former Minister for Women & Child Development) to visit various welfare organisations in Japan. There, she saw 90-year-old mothers managing these organisations. Soon after, she went to Washington DC to represent 13 countries of Asia-Pacific for Special Olympics – being one of the few mothers who was a trained coach for the Global Family Support Network. Now with a one year visa, she decided to attend the Son-Rise Startup program at Option Institute, Massachusetts.
On the very first day of the program, she was surprised to learn that taking care of food through a Gluten Free Casein Free (GFCF) diet is very important in Autism.
People with Autism tend to process the peptides present in high sized proteins such as gluten and casein in a different and incomplete way, resulting in aggravation of seizures, gastrointestinal issues, and behavioural problems. “Since he/she can’t communicate as we do, they express discomfort in their bodies through these manifestations,” explains Saswati.
Independent Living For Autistic Youngsters
Charged with newfound hope and enthusiasm, she decided to start a new project when Prakhar turned 17. She focussed on creating a unique group for him since she’d seen him respond better in groups with role models. This would be the first group home for autism in India, and it started in 2005 in Dehradun as Inspiration Centre – Dehradun. The focus of this group home was to provide a holistic approach towards autism – utilising both behavioural therapy and the GFCF diet – with an end goal of independent livelihood for these youngsters.
Atkarsh, a three-year-old boy, came to Saswati with acute behavioural issues. He was constantly hitting his mother and found it difficult to control his aggression. Within a week of starting the GFCF diet, he calmed down enough to say his first full sentence.
For every new person at Navprerna Foundation, Saswati insists on an exclusive blood profile and allergy tests, along with stool and urine test to rule out parasites and pathogens in their body. “The stomach is the brain of the midbody. Any disturbance down there can result in disturbance up here,” she says, gesturing towards the brain.
“Parents Should Guide Them To Survive The Society In Their Absence”
But the diet is only half of what she does here. The other important aspect of autism therapy is behaviour modification for social skills.
“People with autism fail to understand social and contextual cues. This leads to behaviour which is not age-appropriate,” she reveals, adding, “The worst thing to do when one sees such behaviour is to let them be. Tomorrow when their parents are no more, they need to know how to behave in society and take care of themselves.”
Vocational training is another focus here. Saswati breaks every task into sub-tasks, taught in phases. Once she was dealing with a boy who refused to wear clothes. “What do you do when he rips the clothes you make him wear?” Saswati asked the mother. “I get him new ones,” she replied, “What else can I do?”
Saswati advised the mother to make him sew his clothes whenever he ripped them. Once the child realises that difficult behaviour won’t work, they stop. The boy was then able to step out wearing clothes, and even visited Saswati in Dehradun.
“You need to be firm and consistent. Never say anything to the child which you won’t do. They should know that you mean whatever you say.”
Every instruction Saswati gives ends in a low inflection, which is key. It means that what is being said has to be done. Saswati and her team at Navprerna Foundation follow these protocols diligently.
The Lives That Changed
At present, no known cure for autism exists. The best we can do is to manage the symptoms, ensure that the person is comfortable, and try to integrate them into mainstream society.
If intervention is done at an early stage, children with autism can even enter mainstream institutions. For instance, Atkarsh now studies at one of the most prestigious schools in Dehradun. The school hasn’t been told he has autism. For those who have grown up without effective intervention early on, both the GFCF diet and behavioural therapy can still play a huge role.
As part of the group home training, people are taught money concepts, taken for trips out to markets, and have good knowledge of chores and etiquette. They wash their own utensils, cut their own vegetables, wash and iron their own clothes, make their beds. Yaman even cooks the afternoon dal for everyone.
He used to throw a lot of tantrums, so much so that he was never invited to any events. Now, for the first time in years, he attended a party with his mother. He loves taking care of children and is one of the few people who understands sarcasm. His dance moves are to die for.
Abhishek, a twenty-four-year-old from Lucknow, is a master of all trades. He can do chores faster than anyone and is proficient in data entry and money skills. Bhavesh has been with Saswati for only a month and he’s already gone from scared and serious to laughing and enjoying activities like painting. Ayan, who used to throw away all his meals and obsessed over ripping strands of his hair, now loves solving his puzzles and eats all his meals properly.
A Testament To One Woman’s Fierce Determination
In addition to a self-sustaining community home, Navprerna Foundation now plans a business venture called ‘Café-Canopy’ to create an inclusive workspace for these people and promote GFCF recipes. This venture is managed by Saswati’s daughter Prerna, who has now joined the foundation. The mother-daughter duo is the foundation’s HR team, marketing team, social media managing team, business heads, and chefs – all in one. With a Master’s degree in social work, Prerna helps create a far-reaching network of volunteers and generates interest for the cause.
Surrounded by supportive neighbours and lush green trees opposite Lovely Market, the group home is proof that meaningful change can be made in the lives of even the most challenging cases of autism. Countless lives have changed and continue to change in Dehradun and in Delhi, all credits to Saswati Singh. The centre stands today as a testament to one woman’s fierce determination in the face of every adversity life threw her way.