'It is my superpower': On World Autism Awareness Day, those in spectrum urge us to take the sympathy lens off

An alarming statistic by the National Library of Medicine reveals that the rate of death by suicide has been estimated to be 7.5 times higher in people with Autism Spectrum Disorder than those without an autism diagnosis.

This is a story about Autism mothers’ love, this is a story about Autism resilience, this is a story about Autism little wins, and this would have been a story just about autism, but if the two mothers, and a young man with Autism Spectrum Disorder I spoke to over the week did not let it define them, I could not let ASD dominate my article just for the sake of its pathos.

Mrs Milan Singh’s son Samar is a social media influencer with over 99K followers on Instagram, while Mrs Anupama’s son Pranav Bakhshi is an associate digital producer with Thomson Reuters. Samar loves to play basketball, and Pranav uses golf on Sundays as a stress buster. Pranav is a fitness freak, and Samar never misses a chance to shake a leg on the dance floor. And if these two bright youngsters in their early 20s did not have autism, they would have never been written about together, given how poles apart they are. In fact, even though they are both under the spectrum, nothing about these two is similar. 

While a lot of us have a fair idea about autism given things we have binge watched like I am Sam, The Good Doctor, Atypical, there is no definitive way in which a person in the spectrum lives their life.

 “Autism is a spectrum and if you have seen one person/child with autism, you have only seen one person/child with autism…there is no one size fits all in this,” Dr K Gayathri, a practicing child psychiatrist in Bengaluru, told DH. 

While Mrs Milan was teary eyed when she heard her son call her ‘mamma’ for the first time at the age of 10, Mrs Anupama is trying to keep the thought at bay that her son wishes to move to Mumbai alone in the near future. Pranav if you are reading this, apologies, I meant shift to Mumbai, not move (he corrected me plenty of times so I have to do better). 

Mumbai was the city where Pranav discovered modelling and today he is the only model with Autism in India. But for Pranav and his mother, modelling is not a way for them to raise awareness around Autism, they have enough means to do that. He does not get introduced as a model with Autism. He blends in. Modelling is his passion, not his activism. And in his attempt at blending in, people like me, and hopefully you will realise how he truly stands out.

At the ripe age of 24, he has a full time job, has modelled for brands in India and overseas, given Ted talks, designed the logo for Tata Power’s PAYAUTENTION initiative, and at this very moment, he must be brushing up on his speech that he has to deliver in Mumbai on April 3. 

“...As a mom I hear a lot of talks that we are disrespecting the disability by giving it positive connotations, and Pranav and I have long discussions on this, but for Pranav his autism is his superpower and he doesn't feel very good when he reads things like we suffer from autism… we feel that it's not a disease it's a condition,” Mrs Anupama said.

Meanwhile, Samar’s mother, whose idea it was to start his page - thebiggishboy on Instagram gets thousands of messages from parents asking her how she “tackled” autism, with even parents of neurotypical children appreciating her and saying that her page makes them hopeful. 

While Mrs Milan shared several pieces of advice for parents of neurodivergent children, one truly stuck with me. “First things first, you are not just living for your child. Generally, parents start believing that they have to do everything for their child. They sacrifice a lot. No, you need to understand that even you have just one life.”

She opined that kids in the spectrum understand that their parents are upset because of them and might grow into depressed adults, or have anxiety. 

“This is not the end of the world. Your kid and you both can live a very happy life. It's a struggle in the initial years definitely because a lot of work needs to be done, but it's same with the neurotypicals,” she said, adding that it is only because she never let her child’s autism completely alter her lifestyle, her child now understands when she has to travel for work or otherwise. He is able to function without her. 

While Pranav and Samar do not communicate exactly how neurotypical people might, they have their own ways to express their emotions. Pranav loves to mimic Mr Bean, because he resonates with the fact that the character, just like him, does not know how to express himself. Meanwhile, as soon as it is 5 pm and Mrs Milan has not made her usual black coffee, Samar will peek twice into the room and by the third time ask his mother “black coffee?”, only to proceed to the kitchen and fix a cup for her.

Both these mothers proved how family support can drastically improve the development of children. Pranav, and Samar both had a difficult childhood where they would struggle in public places.

“People used to think I'm kidnapping a kid and taking him somewhere,” Mrs Milan said, while Mrs Anupama shared that they would call Pranav “Aurangazeb” when he was younger given how the moment they entered a party with him, they had to immediately leave, given his reaction. Cut to today, Samar himself indicates to his mother when he wants to watch a movie in a theatre and Pranav is a public figure.

However, both these mothers are on the same page when it comes to their perception of autism, they do not want their children to be defined by it. 

Batting for the need for family therapy, Mrs Milan believes that “It's very important because these people are there for a certain reason, they have expertise which we are not able to do ourselves. You go and ask questions and there shouldn't be any taboo in going to a psychiatrist or a psychologist.” 

As per India Autism Centre, every one in 68 children has autism, and boys are more prone to be affected by it than girls, with the male to female ratio being 3:1. While there is no “cure” per say for autism, early detection can prove to be a game changer for multiple reasons, one of the most important ones being brain plasticity of children, meaning, in early years kids can form new connections and adapt more effectively. 

Samar’s mother, who got his autism diagnosis when he was three, believes that it could have been better had she discovered it earlier, but 20 years back there was very little information around it. 

“Samar did not smile for the longest. Samar was very physically fit. He had teeth in four months, which generally doesn't happen in a lot of kids. Physically, he was pretty good, but he didn't start crawling. I spoke to my family and we thought ‘It's okay. Some kids do it later’,” Milan shared as she urged parents to notice their children more carefully and seek help if they see anything different. 

“If there's something off, you should definitely go to a doctor and do not delay it. I made that mistake at that time, because I didn't know anything about autism,” she said. 

Echoing similar views, Dr Gayathri shared ways in which parents can understand if their child is neurodivergent as early as 12 months. 

“If the child is not able to anticipate when the parents are coming to pick them up...when the parents or the caregivers smile at the baby, does a baby smile back each time? Is the child able to indicate things by pointing by themselves even if they are not able to verbalise…when parents or caregivers feed the baby they will show things and say ‘look at the car, look at the moon, look at the people going down’, so does the child look where they are pointing, and then do they circle back and look back to look at their face to see their expression?” 

An alarming statistic by the National Library of Medicine reveals that the rate of death by suicide has been estimated to be 7.5 times higher in autistic people than those without an autism diagnosis. Dr Gayathri said that while we have to consider the genetic aspect to this, we also have to understand an individual in the spectrum who has a high IQ knows that they do not fit in the society. 

“People on the autism spectrum with a high IQ feel that they are not fitting into the conventional expectations of a neurotypical world, leading to low self esteem that predisposes them more to mood disturbances like major depressive disorders that can also affect HPA axis (hypothalamic-pituitary-adrenal axis is a network of glands and hormones that work together to manage stress among other important functions) releasing excessive cortisol which basically underlines suicidal ideations, and urges.”

We sure have come a long way with respect to recognising autism but to make our society more inclusive for children and adults in the spectrum still seems like a far fetched dream to parents. While we suddenly find the need to make banners and hold sessions around Autism come April 2, we, myself included, are guilty of reducing the importance of understanding the spectrum to just one day. Before that, cruelty, more often than not, takes centre stage when children with autism face the world. Just last week, a 10-year-old boy with autism was allegedly physically assaulted by a special educator of a private school in Noida's Sector 55. But that was last week. Today is World Autism Day, so naturally we will wear our woke shoes, post stories, write articles (taking my share of the blame), and sleep with a do-gooder smile, until next year.