The Futures We Imagine

When I was seven years old, my father and I would wake at five-thirty in the morning and walk to Nehru Park in Delhi’s Chanakyapuri. The city would still be stretching itself awake, the air sharp with the cool scent of dawn.

Appa had decided it was time for me to begin reading literature. For reasons that seem both strange and perfectly natural now, he started with Thomas Gray’s Elegy Written in a Country Churchyard.

His first instruction was not to read it, but to copy it.

I wrote out the entire poem by hand with enormous seriousness. I drew the slanting lines carefully across the paper and made my handwriting as like calligraphy as I could. Every word mattered. Every line had to sit properly on the page.

Then we read it together. I would read aloud. Appa would explain. And then, I had the poem by heart.

At the far end of Nehru Park stood a rolling green mound. As dawn broke and the grass sparkled with dew, I would race up the slope shouting:

“Brushing with hasty steps the dews away, to meet the sun upon the upland lawn!”

Even now, decades later, I can still see the sunlight spreading across the grass. I can still feel the excitement of those mornings. I can still hear my own voice flung across the enormous park.

At the time, it was simply a walk with my father. Today, it is also an inheritance. A father sharing something he loved with his child. A memory being created without either of us realizing how long it would last.

When I was carrying Krishna, I imagined similar moments waiting somewhere ahead of us.

Not the same moments.

Our moments.

Perhaps early morning walks.

Not to be.

Perhaps books.

Not to be.

Perhaps endless conversations.

Not to be.

Perhaps answering a relentless stream of “why” questions that would begin at breakfast and continue until bedtime.

Not to be.

Perhaps standing in a doorway one evening and calling out, “Krishna, dinner is ready. Hurry up!”

Not to be.

Such ordinary things. The kind of moments nobody photographs because they seem too commonplace to preserve. The kind of talking no one records because they are so ordinary. Not knowing, perhaps, that one day they may simply cease to exist, like dew in the sun.

Little did I know then that the grief of futures imagined and futures relinquished was only one part of the story. There were other companions waiting further down the road: Chronic exhaustion. Hypervigilance. Guilt. Fear. Loneliness. The pressure of making decisions whose consequences nobody could predict. The burden of holding together a world that often seemed determined to come apart at the seams.

These are experiences familiar to many autism parents. They do not arrive all at once. They accumulate slowly, over years, until one day you realize they have become part of the landscape of everyday life.

This essay is about that journey. And about what might, perhaps, make it a little easier.

The grief that many parents of autistic children carry rarely begins with a diagnosis. The diagnosis simply gives a name to a reality that has already begun making itself known. The grief begins much earlier with fear, in the gradual realization that the future you once carried so effortlessly in your mind is changing shape before your eyes.

And through all of this, love remains entirely intact.

I have never had a single moment wishing for a different Krishna. If I could change anything, it would be the things that cause him pain. That trap him, alone, in the prison of his mind and mutiny of his body.

Yet, love does not prevent grief. A parent can love a child completely and still mourn futures that will never arrive.

Human beings are capable of carrying contradictory truths, and parents learn this early.

Then spend years practicing it.

The Diagnosis and the Grief That Follows

The diagnosis itself often arrives with a peculiar mixture of shock and recognition. Part of the parent already knows. Part of the parent refuses to know. There is disbelief, denial, secret hope that it is all a horrible mistake…

Research conducted late into the night. A search for alternative explanations. Perhaps the doctor is mistaken. Perhaps this is a temporary delay. Perhaps he will catch up. Perhaps we are overreacting.

For a while, life becomes organized around perhaps. Then the realization that this is not a brief detour but an entirely different road.

From that point onward, parenting becomes entangled with a constant stream of decisions that seem far too important for anyone to make with confidence.

Which therapies?

Which school?

Which interventions?

How much structure?

How much flexibility?

How much acceptance?

How much pressure?

How long should we wait?

What if we are missing something?

What if we are doing too much?

The uncertainty itself becomes exhausting.

Parents are expected to make decisions that carry enormous emotional weight while navigating a landscape where experts disagree, evidence evolves, outcomes remain unpredictable, and every child follows a path that appears uniquely their own.

Then comes guilt.

At first it asks whether what caused the autism is oneself.

Something missed.

Something overlooked.

Something done incorrectly.

Later it evolves.

Parents begin feeling guilty for being tired. Guilty for feeling overwhelmed. Guilty for wishing life were easier. Guilty for wanting a few uninterrupted hours of sleep. Guilty for wanting an afternoon that belongs only to themselves. Then guilty for feeling guilty. The cycle becomes self-sustaining.

What remains largely invisible from the outside is the sheer relentlessness of it all.

Autism rarely arrives alone.

It arrives carrying appointments, forms, assessments, therapies, school meetings, dietary decisions, medical investigations, sleep problems, behavioral challenges, financial pressures, and a thousand small calculations that must somehow be performed while the rest of life continues demanding attention.

And life never pauses to make room for autism; autism simply joins everything else already in progress, whether one is ready for it or not…

The Nights That Never End

Yesterday, Krishna’s gut did not let him sleep.

He was uncomfortable through the night. Sometimes pain, sometimes hyperactivity. His father and I took turns being with him while the other tried to steal an hour or two of rest. We soothed him, walked with him, helped him settle, waited for the discomfort to pass, and hoped that whatever was troubling him would resolve itself before morning.

Dawn eventually arrived, and Krishna’s sleep with it. But ours didn’t.

Both of us are also caregivers for our elderly and invalid parents. Breakfast still needed to be made. Medicines still needed to be sorted. Daily routines still needed attention. And my infamous house help Manjamma decided to take an extended break.

So we got up.

The morning disappeared into the ordinary work of keeping a household running. Afternoon arrived.

By the time we finally sat down to take a breath, Krishna woke up.

And there went all thoughts of sleep.

Like a pipe dream.

Exhaustion accumulates in this way. Through interrupted nights and postponed rest. Through plans that are cancelled before they begin. Through the simple fact that life continues making demands regardless of how tired you are.

The bills still need paying.

Parents still age.

Bodies still fall ill.

Meals still need cooking.

The world continues moving at its usual pace.

For many parents, exhaustion eventually stops being temporary and becomes the climate. You function inside it.

Living on Alert

There is a particular kind of vigilance that develops over years of caregiving. More than once, I have woken abruptly in the middle of the night and discovered that Krishna was no longer in his bed.

The transition from sleep to alertness is instantaneous.

One moment you are dreaming. The next you are running.

Sometimes I have found him hiding underneath a sofa. Sometimes attempting to squeeze himself into places no reasonable person would think of occupying – the fridge.

The relief arrives first; the shaking, later.

When Krishna was around six years old, he slipped out of the house one afternoon and wandered off. His father was speaking to his grandfather and I was preparing Krishna’s evening snack. And then, the house felt too still.

Where was Krishna?

We searched every room.

Then the garden.

Then the street.

Then neighboring roads.

Then farther.

Minutes passed.

Five.

Ten.

Fifteen.

Twenty.

Twenty-five.

It is difficult to describe the terror and panic contained within twenty-five minutes when your child is missing. Eventually a local auto driver brought Krishna home. He had seen him before and knew where Krishna lived. That day ended safely, thankfully. Many do.

Yet experiences like these leave traces behind.

Years later, a parent may still wake at the smallest disturbance. Or wake because there is no disturbance. They may scan rooms automatically when entering unfamiliar places. They may locate exits before noticing the décor.

Hypervigilance is learned.

Built one frightening experience at a time.

The Slow Erosion of Self

There is another loss that receives far less attention: the gradual disappearance of parts of oneself.

Last year, Krishna underwent a five-hour surgery under general anesthesia for a full mouth rehabilitation. He required a prolonged course of antibiotics. As a side effect, for the first time in his life, he lost awareness of signals from his bowels.

The sofa became a poop space.

The bed became a poop space.

Eleven o’clock at night became poop time.

Early mornings sometimes began with finding him covered from head to toe in dried feces.

One night, my husband and I were washing soiled sheets for the nth time. We were exhausted beyond exhaustion. As we stood there, my husband looked at me and said:

“At least I get to go to office.”

The sentence stopped me. There was a time when I played the veena. There was a time when I made Tanjore paintings. There was a time when I came home from work and complained about that one team member who could irritate the life out of me in thirty seconds flat. There was a time when my husband and I walked for hours in driving rain and wild wind, laughing like loons.

I still held poopy sheets in my hands. And I got on with it.

Nobody wakes up one morning and discovers that entire parts of themselves have vanished. It happens gradually… A hobby postponed. A social engagement cancelled. A passion set aside until life becomes easier.

Later.

Later.

Later.

Years pass.

Many parents eventually discover that they have become experts in therapies, medications, sleep patterns, bowel movements, sensory triggers, educational accommodations, and medical paperwork while struggling to remember the last time they pursued something purely because it brought them joy.

The Grief of Ordinary Things

One evening my husband was travelling home from work in a cab with colleagues. The conversation drifted toward school board examinations. Nobody likes board examinations. Students complain about them. Parents complain about them. Entire households revolve around them for months and then celebrate when they are over.

When he came home, he told me,, “I can never tell Krishna that I don’t care about his board exam results. I can never tell him that his marks don’t matter to me. He can be at the top or the bottom of his class…”

Most parents eventually find themselves reassuring anxious teenagers that a single examination will not determine their future. Most parents get to have that conversation. Most parents take it entirely for granted.

The grief was never about board examinations.

It was about inheritance.

The ordinary rituals that pass between generations so routinely that nobody notices them while they are happening. The conversations. The arguments. The reassurances. The things we assume will one day be ours to give because they were once given to us.

This is how grief often appears in autism families. Not as a single overwhelming event, but a series of small recognitions. A conversation in a cab. A child ordering food independently. A teenager arguing about homework.

The grief arrives. Stays awhile. Then recedes again into the background.

Until the next ordinary moment calls it back.

When the Parent Becomes the Entire System

At some point, many parents discover that they are no longer simply parenting.

They are coordinating, researching, advocating, interpreting, planning, tracking, negotiating, remembering…

Every professional sees one part of the child.

The parent sees the whole child.

And so the parent becomes the place where all the information converges.

The speech therapist sees speech. The occupational therapist sees sensory challenges. The gastroenterologist sees the gut. The teacher sees the classroom. The parent sees the child who moves through all of these worlds at once.

The parent becomes the historian. The keeper of patterns. The keeper of the map.

The one who notices what others cannot because they are present across every context, every transition, every triumph, every setback.

Over time, the parent becomes indispensable. They know which routines matter. They know what a particular gesture means. They know what a certain silence means. They know the map.

And because they know the map, everyone else eventually depends on them as well.

This level of indispensability is rarely discussed.

Yet it may be one of the most exhausting aspects of all.

The Question That Waits in the Background

Eventually a question arrives.

What happens when I am gone?

Who will understand my child?

Who will know what calms him when he is distressed?

Who will recognize pain when he cannot explain it?

Who will understand the countless details that currently exist only inside my head?

What happens to the map when the people carrying it are gone?

The fear is not simply about caregiving.

It is about continuity.

The Myth of Respite

When conversations turn toward parental burnout, the proposed solution is often respite care.

Parents are exhausted. Therefore they need a break. And they do. The problem is that reality is more complicated than the solution suggests. Many parents are not actually asking for freedom from their child. They are asking for freedom from being indispensable. Those are very different things.

Most parents would gladly spend every available hour with their children if they knew there were several other capable people who could step in tomorrow. The exhaustion comes from being the only person holding the map. The only person who understands the routines. The only person who recognizes distress. The only person carrying the accumulated knowledge of a lifetime.

A trained caregiver may be highly competent and deeply compassionate, but the child may still experience them as a stranger. The parent may spend days preparing, and then spend the entire respite period worrying.

Because trust cannot be scheduled from two to five o’clock on a Saturday afternoon. Trust is built. Slowly. Through familiarity. Through relationship.

Building the Village

What many families need is something more fundamental. Not another therapy. Not another intervention.

An ecosystem.

Imagine receiving an autism diagnosis and, alongside referrals and assessments, being introduced to a community space.

A place your child can visit every week. A place where the same adults remain present year after year. A place where children play, create, learn life skills, explore outdoors, celebrate festivals, and simply spend time together. A place where parents can step away for a few hours knowing their child is not merely supervised but known.

The goal is not babysitting. The goal is not intervention. The goal is community, the village needed to raise the child.

But what is a village? Is it merely a collection of services gathered under one roof?

Or is it something larger?

Isn’t a village a way of ensuring that knowledge, trust, affection, experience, and responsibility can be shared across many shoulders rather than resting entirely on one or two? Isn’t a village something that allows the understanding accumulated over years of caregiving to spread beyond the parent who carries it today? Something that transforms private knowledge into shared knowledge? Something that ensures that a child is known, not just managed? That a family is supported, not just serviced? That continuity survives even when circumstances change?

After all, a village is not defined by proximity; it is defined by relationship.

A child who spends years within such an environment is building something alongside skills and independence.

Trust.

And parents are gradually discovering that they are no longer carrying the entire burden alone.

Respite and “What After Us”

Are respite and “what after us” actually separate problems? Or…not?

Perhaps they are the same problem viewed from different points in time.

The ideal future support network should not appear suddenly when parents become elderly. It should begin much earlier. At diagnosis. A child who grows up surrounded by trusted people, familiar environments, and enduring relationships is already building part of the answer.

The people who may one day support that child as an adult should not be strangers encountered during a crisis. They should be familiar faces. People who know the child. People the child knows. People who have been part of the story all along.

In that sense, meaningful respite is not separate from the question of what happens after we are gone. It may be the beginning of the answer.

No Parent Should Have to Be a Village Alone

As autism parents, we spend a great deal of time talking about therapies, interventions, schools, diets, medications, accommodations, services, and outcomes.

These conversations matter. But alongside the question of how to support the child sits another question.

How do we support the people who support the child?

With community. With relationships that endure.

I think back often to those mornings in Nehru Park. A little girl carefully copying out a poem because her father had asked her to. Drawing slanting lines with which to align her writing, with great seriousness. Taking pride in every word.

Then running through dew-covered grass toward the rising sun.

At the time, I believed those mornings were about poetry. Years later, I realized they were about relationship. A father sharing a piece of himself with his child. A memory passed from one generation to the next. An inheritance carried through ordinary moments.

When I was pregnant with Krishna, I imagined creating similar memories.

Some never arrived. Others arrived in forms I could never have anticipated, because life does not always unfold according to the stories we write for it. Love finds new languages. Connection finds new forms. Joy appears in unexpected places.

Grief remains part of the landscape too.

Yet one truth has become clearer with every passing year.

Families cannot thrive in isolation. Human beings were never meant to build entire worlds by themselves. The answer to parental exhaustion is not asking parents to become stronger. The answer to fear about the future is not asking parents to worry less. The answer is building the structures that should have existed all along.

Communities.

Relationships.

Support systems.

Places where children are known.

Places where families belong.

Places where trust can grow over years.

The village of previous generations may be gone, and we cannot simply wish it back into existence. Plus, that village may not actually be ideal for an autistic child.

But we can build new villages. Deliberately. Thoughtfully. Patiently. Because perhaps that is what all of us are trying to create: Lives that can be shared. Responsibilities that can be shared. Knowledge that can be shared. Futures that can be shared.

A village, in the deepest sense of the word.

Because no parent should have to become an entire village by themselves.