This is a personal essay written by the author, sharing their individual journey and experiences. The views, thoughts, and opinions expressed in this piece belong solely to the author and do not necessarily reflect those of MyndStories. This essay has not been professionally vetted or reviewed for clinical accuracy.

I have been sharing my experiences with autism through my son Krishna’s ongoing story, which is now six years old, post-diagnosis.

At the time of diagnosis, however, we knew almost nothing about autism. The word evoked vague memories of Dustin Hoffman in Rainman, obscure news stories, or perhaps greeting cards from the Spastics Society of India.

And then, our son was diagnosed as autistic. Let me tell you the story of how and why we took him to the doctor in the first place.

The first signs

When Krishna was four, he went to school for the first time. At home, he was happy, bubbly, mischievous, and energetic—all the things you’d expect from a four-year-old. Krishna was lagging in writing, but we thought, that’s what school is for; nothing to worry about. We had no clue that he wasn’t neurotypical. In fact, the words “neurotypical” and “neurodiverse” hadn’t even entered our world yet. 

And so, Krishna went to school, all dressed up and cute in his oversized uniform and schoolbag. He seemed happy enough to hold the Ayamma’s hand on the first day and walk off. We anxiously watched him till he disappeared into the maze of corridors and classrooms. I didn’t go back home, though. I had already talked to his teacher during the meet-and-greet and told her that I would wait in the reception till his classes were over. 

“Krishna has never been in a classroom environment before, Ma’am. We live in a rather secluded gated community. He isn’t used to large groups of people. In case there is an issue, please call me.”

“Don’t worry, Ma’am,” she had responded. “We are all here; we will take care!”

Little did I know the nature of that care.

The week went by seemingly well. Krishna didn’t talk much about what was happening in class. He seemed his usual energetic self, always happy to set off for school in the morning. On the last day of his first week at school,  Krishna came out of class, face swollen and stained with tears. He jumped into my arms and buried his face in my neck,  refusing to look up. 

I was shocked. 

His class teacher complained to me:

“Ma’am, this whole week, Krishna has been jumping in class.  He refuses to sit; he refuses to talk. Today,  he threw a tantrum because he wanted to leave the room. See, I took a video.”

I was numb. I held Krishna in my arms and stared at her. I stared at the video she brandished in my face. In the video, Krishna was crying, banging on the projector screen, trying to open it like a door. He looked straight into the camera, his eyes filled with frustration and fear. The teacher was laughing in the background. The rest of the class watched in pin-drop silence (out of camera view).

That was the beginning of six months of severe separation anxiety for Krishna. Six months where his father or I had to carry him every waking second. Six months where he screamed and screamed to avoid bathing or changing his clothes. Six months in which he completely lost toilet training and reverted to diapers 24×7. Six months in which he stopped communicating and responding to us and would only talk to himself at night when cuddled tightly in my arms.

After the school incident, we took him to NIMHANS for an evaluation, and he was diagnosed to be autistic.

What is autism?

“Doctor, what is autism?”

After five days of answering questionnaires about Krishna’s history, we finally asked the doctor this question. The doctor explained it to us in fairly simple terms:

“Autism is a developmental disorder, mainly impacting the person’s communication and social  interactions.”

We still didn’t understand the meaning and impact of “communication and social interactions.”

What communication issues mean in autism

What is communication? At the time, I thought communication simply meant talking, writing an email, or sending a message. But communication is so much more.

It’s the ability to understand your own emotions, needs, and desires and express them so that others understand.

It’s also the ability to interpret what others are saying—not just their words, but their body language, their facial expressions, the things left unsaid.

The foundation of every social interaction is communication, isn’t it? Do you like someone or not? How do you decide you like them and would like to interact with them? Whether it is a kindergarten friendship or mingling in an office party, telling your mom that you absolutely hate Riya Daniels because she twisted your arm, or evading curious relatives at a wedding party, what is this communication-driven social interaction based on?

Emotion. 

And the desire to be recognized for that emotion. The desire to recognize that emotion in others. Speech and writing are just tools for that recognition. 

At the time of Krishna’s diagnosis in 2018, I never thought about it this way. As far as I was concerned, communication was talking. Or perhaps writing an email or a phone message. 

So, when the doctor said that autism primarily impacts communication and social interaction, I didn’t grasp the full impact of what she was saying. I had no idea that, in practical terms, it meant that my four-year-old little boy would struggle to show or tell me what he was feeling. I had no idea, despite witnessing precisely this.

In school, Krishna had felt severe stress and anxiety. It was the first time he experienced this; how could he understand it and express it to me? Instead, he expressed it by jumping in the class, refusing to sit, and everything else the teacher accused him of. The doctor explained that while a neurotypical child may express by crying and refusing to go to school, neurodiverse children deal with it by stimming or meltdowns.

Children and adults on the autistic spectrum struggle to interpret emotions and feelings, often even their own. And yet, their emotions may not always appear the way neurotypical people expect.

When you see an autistic person laughing, they may not actually be happy. When they look blank or emotionless, they might be feeling something very intense.

These are just a few simplistic examples, but can you see how this screws up social interactions and communication for them?

I knew none of this; I learned it the hard way. To this day, almost seven years later, we feel the repercussions of Krishna’s life from that incident in school.

I’ll share more next week. Till then, I hope this is what you will take away:

• Autistic children and adults feel emotions as keenly as neurotypical children and adults. But they struggle to express themselves in a way that others understand.
• Autistic children and adults struggle to understand and interpret body language, subtext, and nuances in social interactions.
• The more they struggle, the heavier the burden of stress. And this sometimes leads to autistic burnout.

Note: All images in this article are purely representative.