As a first-person essay, this is not vetted by our team of reviewers.

I never truly thought about autism awareness until I lived through an experience that made it unavoidable. It was during my 10-year-old son’s recent hospital admission for what was a fairly simple procedure. Fairly simple for a neurotypical child. For us, it was anything but simple. Three days of sedation, countless explanations, and a struggle that pushed me and my son to the limits.

This is the reality of parenting a child with autism: even the simplest experiences are complex.

A brief history of my son Krishna’s diagnosis

Today, Krishna is 10 years old, non-verbal, cannot read or write, and has lost toilet training. He wasn’t always so. Till he was three and a half, Krishna was a bright, bubbly, talkative little fellow. Very curious, actively communicating, very neat, and fully toilet trained. One fine day, he began to pee all over the house, giggling all the while. We didn’t know it at the time, but that was the first sign of his first regression.

He slowly reduced communication but would talk to himself in great detail and perfect grammar. A year later, he was completely nonspeaking. 

Krishna has Childhood Disintegrative Disorder, which is classified as an Autism Spectrum Disorder. His diagnosis and regressions are another saga. His sensory issues are the most debilitating and the ones that directly impact his quality of life. He was hospitalized recently for constipation management.

Autism in a hospital setting: The reality

Our ordeal started with the admission process in the hospital’s Emergency department. By the way, this was a planned admission advised by Krishna’s doctor, but the hospital process dictates that we bring the child into Emergency for admission. The hospital staff had little understanding of what autism was. 

Why was this older child diving from his mother’s back into his father’s arms and back again so desperately? 

Why was he seeking every hard surface (of which there were plenty – tables, stands, instruments, cot frames) to hurt his hands and feet?

Why did he curl up into a ball on the hospital bed and proceed to hit his head against the headrest?

All the other children in Emergency, though uncomfortable and stressed, did not behave like this…

Alas. These were questions the staff did not ask.

My son needed admission for 3 days and heavy sedation, which he fought with every ounce of massive will in his little body. Each of those three days, beginning with the admission process till the time we were discharged, was hell. Simply because of the extreme ignorance of most of the staff as to how a child on the autistic spectrum processes experiences, especially stressful ones.

That’s often the way of things, isn’t it? Until you yourself undergo an experience, you don’t appreciate the full extent of its impact. 

For me, it was the struggle to explain my son’s situation in the hospital that made me realize that autism awareness is woefully inadequate, even in hospitals. It never occurred to me till then that just saying that he’s autistic and has sensory issues was insufficient. I must have explained it at least a hundred times each day to different nurses and doctors on duty.

“Sister, he will NOT accept a nasal tube without sedation.”

“No, Sister, I cannot hold him down. He’ll pull it out instantly”

“Doctor, I don’t WANT sedation. But without it, he will not tolerate a tube through his nose.”

It was enough to almost cause a mental breakdown for me and my husband.

Why share my story?

I am not an “autism expert.” I don’t hold degrees in the field. I’m not a doctor. 

But I am the mother of a little boy who has been regressing gradually for the past 7 years – since he was 4 years old – from a bright, talkative, seemingly neurotypical child to a withdrawn, silent boy wracked with pain. He has been called an “outlier” by doctors who have struggled to classify where he is on the autism spectrum. Because that’s what autism is: a spectrum of conditions and disorders. 

So, I’m doing my little bit about spreading autism awareness by sharing what I know about autistic children and the challenges they face every single day.

Autism awareness isn’t just about understanding the condition—it’s about creating spaces, like hospitals, where children like my son feel seen, understood, and supported.

Breaking the misconceptions, one story at a time

Autism is classified under neurodivergence, which includes autism, ADHD, dyslexia, dyspraxia, Tourette’s Syndrome, Down’s Syndrome, and a whole bunch of others.

“He doesn’t look autistic!” Many people have told me, both accusing and wondering.

Certain neurodivergent conditions have distinct physical features.

Autism doesn’t. 

There’s no “look” to autism. Many children and adults on the spectrum avoid eye contact, and perhaps that’s the “autistic look.” My pet theory is that a person on the spectrum looks too hard and feels too deeply. Looking directly into another’s eyes is perhaps like getting an instant overload of all that the other person is feeling or thinking at the time; perhaps it feels aggressive or challenging. On those rare occasions that my son holds my gaze, I’m the one who looks away first. It’s like being hit head-on by a truck. His therapists have independently shared a similar opinion, so perhaps there’s something to it! He does seem to project a load of feelings and intent.

The spectrum: Not one size fits all

No two children (or adults) with autism are the same. (“Normal” or neurotypical people aren’t, so why do we expect people on the spectrum to present the same way? Autism isn’t like having diabetes!)

One autistic child may ace his academics. Another could be a musical genius. Yet another, a chess champion. And still, they may turn hysteric at the feel of sticky rice or the sight of strangers. This is one end of the spectrum: high-functioning autism. (Of course, I’m simplifying!)

Then, there are children like my son.

He is nonspeaking. He faces sensory issues, gut issues, and sleep disturbances. A child who doesn’t fit into categories but still fights every single day.

And there are children in the middle of the spectrum between these two extremes. They struggle along, attending therapy after therapy, just to process the world they are in.

Processing the world differently

Autistic children and adults experience and process the world differently than neurotypical people. Sounds and scents, light and touch, taste, and emotion, everything is different for them. They face a spectrum of sensory issues – of either oversensitivity or undersensitivity.

One unifying factor across the spectrum (again, this is my personal opinion): 

A very strong will. Absolute steel. For example, my son fought 6 injections of strong sedatives; he still wasn’t asleep at the end of it. Just stunned for about 10 minutes, after which he again began to move to try to grab the hateful tube in his nose. It didn’t work when we tried to tell him that the tube was giving him medicines and would be removed in a while. 

There you go again, atypical behavior: autistic children aren’t wired to obey adults just because they are adults. They aren’t disobeying to be difficult either; the “what’s in it for me” must be strong and clear to them. If you manage to achieve this, their compliance is nothing short of amazing. And yet, explaining vague future benefits as the reason for current discomfort is very difficult. This is just the beginning of my story. My family’s journey continues, and so does my son’s.

Next week, I’ll share more. Until then, here’s what I hope you’ll take away:

Autistic children—and adults—aren’t difficult. They are different. Understanding this difference is not just kindness; it’s the first step toward true autism awareness. And it’s a step every one of us can take.