In the book I Have Autism and I Like to Play Good Bad Tennis, advertising and marketing executive Debashis Paul recounts his life with his son Noel, who was diagnosed as being on the autism spectrum at the age of 3. Paul invites us to step into Noel’s shoes and look around his universe—rich with passion for music, glittering car showrooms, unusual tennis and swimming tactics.
In this poignant memoir by a father, a family comes vividly alive. Noel, a boy with autism, his mother, sister and father navigate the experiences and challenges encountered when a loved one is neurodivergent. Coming from a father’s heart, this book explores the patience, understanding and love that caregivers must find within themselves through it all, as well as the joy and richness that life with a neurodivergent person brings.
In the first of these excerpts, Paul talks about Noel's first diagnosis and the family coming to grips with it, while in the second, he shares rare wisdom from a parent raising a child on the autism spectrum, about letting their individuality flourish, underlining the fact that parenting a neurodivergent child does not have to be one full of challenges and angst, and can be immensely fulfilling:
Noel was our first child. He was born close to Christmas Day, on 15 December. In my dreams, I saw my son foremost as a spreader of joy; as one who would embody the values of warm celebration, love, kindness and togetherness. So, I named him Noel.
He was simply an adorable toddler with golden curls and a smile that could light up a room. Like all first-time parents, we would often get excited or fretful over each milestone. All the conventional early milestones were on track for our baby, except for a delayed response when he was called by his name and his eyes would waver, making eye contact difficult. At first, Pia and I did not think about it too much. Back then, I was a manager in an advertising agency and Pia had started her career as a professor at the University of Calcutta.
An image from Noel’s toddler days that has remained etched in my mind was his unusual self-play of lining up toy cars. He would arrange them carefully; a small blue toy Honda in the front, then a replica of a farm truck; behind that, a beautiful white Mercedes, then a stylish black car that looked somewhat like a GM Optra, followed by a red Ferrari, a water tanker—a long line of about thirty tiny cars.
I used to be spellbound, not just by the flawless assembly that would curve artfully at several places, but by the incredible concentration that Noel displayed while giving shape to his fantasy. An otherwise hyperactive boy, he would sit quietly, surveying the line, absorbing every little detail of every single simulated vehicle for hours, unperturbed by the noise or loud chatter in the living room or even when people called out his name… With help from my readings on lateral thinking, I inferred that Noel clearly showed some unusual ways of observing things—what we call creative in regular parlance. There wasn’t anything really that could have been a cause for worry whatsoever at that stage. He was a beautiful child who had his quirks.
Noel started at one of the well-known Montessori schools in Kolkata at two-and-a-half years. It devastated him when I dropped him off at school that first day. He cried hopelessly, standing at the entrance veranda of the school, until he was picked up and carried inside the school by a staff member.
Other kids also suffered the proverbial bout of separation anxiety, but almost all of them glided into the school routine after saying goodbye to their parents within the first few days.
Noel cried heartbreakingly for over thirty days!
After about two months, the head of the school called me to observe Noel. An inexplicable fear gripped me. I watched Noel from a classroom window so that I was not visible to him. She said that he was ‘aloof’, that there was something odd about him—that he was happy to be on his own. He showed no interest in the kids around him. Noel stayed away from all the kids in class, even during group activities. During his singing class, he sat at a distance from the rest but smiled and clapped along with them. He was never distraught. He took part in everything, but from a distance and never in a group activity that involved standing close to each other or holding hands while singing or playing games.
That is when the alarm bells went off in our minds and hearts. But then we were reasonably sure it was some psychological issue; perhaps a condition of social withdrawal, as a continuing effect of separation anxiety. He would never harm any child if they came near him. He merely felt uncomfortable and would step away. We interpreted that (naively, in retrospect) as a strong need for personal space.
We visited various paediatricians and child psychologists in Kolkata but could not get a proper answer or direction. Those days were filled with anxiety and a sense of groping in the dark. Finally, we went to Mumbai to see a renowned neuropaediatrician.
I remember waiting in a hall in the hospital with others and Noel refusing to sit. He was all excited; he threw away his shoes and started to run from one end of the hall to another, chuckling away, creating a soft, melodic percussion with his barefoot padding down the hall. While all the noise and the unexpected behaviour of our child in the waiting room embarrassed us, I was loath to stop him. In the midst of a very tense situation, Noel’s sheer joy at that moment was an elixir for me.
The doctor explained that Noel showed some characteristics of classical autism with several Asperger Syndrome traits as well. He was three-and-a-half-years-old. Neither Pia nor I had heard these terms before. We were told that it was a neurobiological, developmental disorder, and a lifelong condition, which often resulted in a number of pervasive handicaps. Noel was a verbal child but would have to be taught how to express himself, as he would encounter difficulties with language learning and his speech was unlikely to be age appropriate.
We were shattered. Our world had turned upside down. The doctor recommended watching Rain Man, a 1988 Oscar-winning film starring Dustin Hoffman, and reading extensively on the subject of autism education techniques. These suggestions appeared to be standard operating procedures at that time, perhaps still prevalent, but they were lacking in sensitivity or consideration for what parents were going through.
In retrospect, my view is that asking people to watch that film to learn more about autism can be a misleading suggestion for those with low awareness of autism—not every child with the autism condition is a mathematical savant like the protagonist, Raymond, in the movie.
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By the time he reached seventeen, he (Noel) had overturned the common autistic traits of self-isolation—being uncomfortable with the physical presence of people around him. He was no more caught up with obsessive narrow interests. He had figured out how to deal with things and situations that caused stress and anxiety. On being nudged, he could restrain his stim in a public space. With my repeated mentions, Noel had grasped the concept of public space in outward behaviour.
It was after much inner conflict that I had resolved to tell him why those prompts were necessary. Taking him aside, I would say, ‘Noel, you are lovable and different from me and many others, so I need to remind you about public space’. His clear and empathic response always was along the lines of, ‘I have autism, Baba, I know.’ and ‘I will always be a gentleman in public.’ Those prompts from me in public zones were always with the same volume and tone. Thus, a structured solution was invented and, over time, got wired into Noel’s routine. He became conscious of the public and would apply himself to the best of his abilities.
Noel became a very interesting man to be around as he crossed twenty. He was confident, secure, kind, affectionate, empathetic and had genuine warmth for the people around him. He trusted them and believed in their goodness. He never withdrew or distanced himself from others. He wanted to reach out to others but struggled with the means of doing so. That struggle was ever present, but that did not frustrate him beyond reasonable levels.
I believe this was because of our consistent approach of giving him his personal space, letting him lead, encouraging him to teach us how to align with him, communicating with him gently while completely respecting his differences and, most of the time, enjoying them.
The cracking of structure-led solutions and the all-around adjustments were never easy. Though I strove valiantly to push back the frequent wave of despair (‘Why us?’) by the sound rationale of a dictum (‘It is not targeted at us and it really isn’t something that can destroy us’), I have to admit that the downers, many a time, were too forceful and the rush of despair very palpable.
The sooner that parents come to grips with the ‘You are not targeted’ aspect of their self-dialogue, the better it is for their sanity and self-confidence. It is also better for the team spirit within the family unit. As for neurotypical children, the importance of early childhood cannot be overemphasised; it determines their core sense of security and helps shape their social dimension. Psychologists always say that home is the seat of learning. Attitudes towards others take shape here, surprisingly early in life. The relations and experiences with members of the family sets a foundation for attitude formation.
The fundamentals of this phenomenon do not change in the raising of children with a disability. Trusting your spouse and close family members along with openly communicating the hardships and challenges is healthy and helpful. It keeps your energy up. This, admittedly, is easy to say and often difficult to accomplish. The reason I say this is to urge my readers to recognise that this force can be leveraged within the family unit and that this eventually helps everyone.
This is the force to latch onto forever. Sharing everyday struggles with each other helps normalise them. This takes some time, but does yield positive results. Being able to separate your ego from other people’s perceptions of your neurodivergent child provides a buffer against the jabs from the world around you. Sometimes, they come from people who are supposed to be close to the subject; expert counsellors meant to provide professional direction and help, child psychologists, doctors, educators and even close family members.
The neurodivergent mind comes with all the vulnerabilities of a neurotypical mind amplified many times over. Raising a child is hard enough, let alone one with a disability. Just as nobody is specifically trained to become a parent, nobody is specifically trained to become the parent of a child with a disability either. The path is full of challenges and no generalised method can help in the development of the child. The trial-and-error approach is then the norm to be followed.
Another perspective I wish to add (in the sphere of parenting a child with autism): just when you think your strenuous efforts have been wasted, the proverbial miracle strikes.
We have to allow the child to find their own path of seeing, feeling and perceiving the world through a lens that is extraordinary. Miracles often come out of that alignment, filling us invariably with the thrill of victory, laughter, beautiful sentiments and treasured moments of fun.
In parallel, one has to build up tons of resilience and openness and slog towards a joyful attitude of acceptance. Let the child lead the path as we walk by their side and aid their process of discovery and learning.
I have always reflected on the premise: should we not place our line of vision to go beyond acceptance? Why not find the hidden talents and nurture them gently and patiently without setting big expectations? Let the child succeed in small steps. Let the child feel secure and happy in their accomplishments.
Look for small wins so that you can take the stumble in your stride. Celebrate the minor successes and block any form of comparison with other children. The child should be shielded from an implicit consciousness of being less.
It is for the parents to first accomplish a whole-hearted acceptance and then achieve the freedom to glide beyond the bounds of acceptance by reinventing themselves anew.
