Buildings and trees whizz past. 110 kmph. I’m skimming the speed limit on the expressway. The concrete hypnotizes with mirages that gleam when the sun appears. And then dull clouds hide the brightness. The car’s motor hums, smoothly powerful. The climate control—aka AC in humbler times—is a subtle addition to the hum.

Krishna plays in the backseat.

Tookle tookle…

I accelerate slightly. The road is empty.

THUMP.

Krishna hits his head.

The next instant he is between me and the steering wheel.

Silently desperate, teeth and nails digging into my arms, my lap. Pain and terror, his and mine. I cannot see. I scream. Weave wildly. Somehow slam on the hazard lights. Cars and trucks screech past. Blindly, trying to hold Krishna away with one hand, I somehow make it to the side of the expressway.

It’s an overbridge in this section. No lay-by lane.

Krishna is wild with pain. I cannot even step out of the car to retrieve his painkiller. He’s screaming now, hitting, trying to get onto my lap, punching the steering wheel.

Fifteen awful minutes pass.

An eternity and more.

I do not know how we weren’t hit by a passing truck or car. Perhaps there is a Providence after all.

Another two such episodes later, I dropped Krishna off at therapy. By then, he was calm and recovered.

This wasn’t the first time Krishna’s gut pain had suddenly spiked in the car. On previous occasions, I had been able to pull over safely, give him his medication, carry him out of the car and walk with him for a while until the pain subsided. Then we would get back in and continue our journey.

But this was the first time he had vaulted into the driver’s seat.

This rather close dance near the gates of eternity—or Yama’s halls, or call it what you will—gave fresh life to some very old fears.

How do I keep Krishna safer?

How do I prepare him for a world I cannot predict?

And how do we secure for him a safe, happy, meaningful life when we are no longer around to do the securing?

Let me ask you: As a parent, when do you stop being afraid for your child’s future?

The answer is: you don’t.

Parents of neurotypical children worry too. Will their children be happy? Will they find work? Friends? Love? Will they marry, if they want to? Have children of their own? Will they make enough money? Will they be safe? Will they find their place in the world?

Autism doesn’t create the fear of the future. Parenthood does.

Autism can, however, change its dimensions.

For some parents the questions become: Will my child have friends? Find love? Hold a paying job? Live independently? Be financially secure? Be safe travelling alone? Find people who understand them?

And if your child is profoundly autistic, as Krishna is, it is an entirely different ballgame.

The sheer immensity of the task can overwhelm me sometimes.

Will there be someone to brush his teeth if he cannot do it himself? To help him bathe and use the toilet? To make sure he eats? To recognise that a sudden change in his behaviour might mean that he is in terrible pain? Will they be patient with him? Kind to him? Will they know him well enough to notice when something isn’t right?

And will somebody make sure that he doesn’t merely survive?

That he has things to do that interest him. People he enjoys. Places to go. Things to look forward to. Laughter. Choice. Affection. A life.

Because profoundly autistic people are not vegetables.

Far from it.

So perhaps the answer to How do I stop being afraid of my autistic child’s future? is disappointingly simple.

You don’t.

You cannot.

And sometimes, perhaps, you shouldn’t.

Fear is not always the enemy. Sometimes fear points to something that needs our attention. The problem is when a hundred unnamed fears merge into one enormous cloud called the future and follow us everywhere.

So perhaps the more useful question is not, How do I get rid of the fear?

It is:

What, exactly, am I afraid of?

And then:

What can I do about it today?

Parenting, after all, has two people in it.

The child.

And the parent.

If we are preparing for an uncertain future, we have to prepare both.

Preparing the Child

We cannot know exactly what our child’s adult life will look like. What we can do is prepare the child of today as well as we can and begin building some of the supports they may need around them.

What that preparation looks like will vary enormously from one autistic person to another. The goal is not to push every child towards the same version of independence. It is to ask, honestly and repeatedly: What could help this particular child live as safely and fully, with as much choice and agency as possible?

Health

Health comes first.

Autism does not exempt a child from having a human body.

There may be medical conditions that coexist with autism. But there are also all the completely ordinary maladies of childhood and adulthood—the stomach bug, toothache, infection, injury, constipation, migraine, fever, hormonal changes—that still need to be recognised and treated.

The difficulty is that autistic children, particularly those who communicate differently or have intellectual disability, may not express illness or pain in ways we immediately recognise.

Pain may arrive as behaviour. Sleeplessness. Agitation. Food refusal. Withdrawal. Hitting. Self-injury. A child suddenly seeming inexplicably different.

In Krishna’s case, it can apparently arrive as a terrified boy—who will become a young man tomorrow—vaulting into the driver’s seat of a moving car.

So we watch.

We investigate.

We treat what can be treated.

We resist assuming that every sudden change is simply “the autism.”

Over time, parents often become remarkably good observers of their children. We learn their patterns, their bodies, their particular ways of saying that something isn’t right. And wherever possible, we help them develop ways of telling other people too.

Which takes us to communication.

Communication

However much or little. In whatever form is possible.

Speech. Typing. AAC. Signs. Gestures. Pictures. Behaviour.

Communication gives us connection: conversations, jokes, choices, stories, disagreement, affection.

But for a vulnerable person, communication is also power and protection.

I hurt.

No.

Stop.

I don’t want this.

That person hurt me.

I need help.

I want this.

I don’t want that.

It does not have to resemble conventional conversation to matter.

The more effectively a person can communicate something about their own experience, the less completely dependent they are on somebody else guessing what that experience might be.

For parents worrying about the day when we may no longer be standing beside our children interpreting them for the world, that matters enormously.

Education and Life Skills

Then we teach.

Not because every autistic child must be pushed towards some predetermined definition of success, but because skills enlarge possibilities.

And the range is enormous.

Education may mean knowing one’s name and address. Personal and sexual safety. Recognising signs. Basic literacy and numeracy. School qualifications. University. Doctoral studies.

Whatever that particular person is capable of learning.

Life skills range just as widely.

For one person, it may be brushing their own teeth.

For another, making a sandwich.

Dressing.

Shopping.

Handling money.

Using public transport.

Cooking.

Holding a job.

Navigating a noisy office.

Living independently.

There is no single finish line called independence against which every autistic person needs to be measured.

For someone with profound autism, a skill that looks small on a developmental checklist can make an enormous difference to daily life. Participating in dressing. Completing one part of personal care. Communicating a need. Tolerating a medical examination. Following an additional safety instruction.

These things matter.

The useful question is not, How do we make this child look independent?

It is: What can this person learn that gives them more safety, competence, participation, autonomy, dignity or pleasure?

And then we keep teaching.

Financial Security

Then comes the deeply unromantic business of money.

The degree of financial planning required will be different for every family because the possible futures are different.

Some autistic adults may earn well and become completely financially independent. Others may need varying degrees of assistance. Some people with profound autism may require lifelong financial support.

And lifelong support can be extraordinarily expensive.

Housing costs money. Healthcare costs money. Transport costs money. Support workers cost money. Therapies and services cost money.

But for someone who remains highly dependent, money eventually buys something even more precious.

Human time.

Someone to help with personal care.

Someone to accompany them into the community.

Someone to supervise them safely.

Someone to notice when something is wrong.

Someone to engage them in things they enjoy.

Someone to be there.

So financial planning is not somehow separate from caring for an autistic child. It can become part of protecting their future.

And there are questions worth beginning much earlier.

If our child cannot support themselves fully, where will they live?

What will their life cost?

Where might that money come from?

Who will manage it if they cannot?

How do we protect it?

And are we budgeting simply for food, shelter and survival—or for a human life that includes support, participation and pleasure?

None of this guarantees the future.

But the absence of guarantees does not make preparation useless.

People, Safety and a Life

Money isn’t enough either.

Who knows the child?

Who understands how they communicate?

Who knows their routines, vulnerabilities and ways of expressing distress?

Who notices the difference between this is typical for this person and something is wrong?

Who knows what makes them laugh? What they love? What frightens them? What they cannot tolerate?

Who will advocate when something isn’t right?

For parents whose children may require lifelong support, one part of future planning may be ensuring that the child’s life does not depend entirely on knowledge stored inside one or two parents’ heads.

That may mean family. Friends. Siblings, without automatically converting siblings into lifelong caregivers. Trusted professionals. Support workers. Communities. Future living arrangements.

It means gradually building a circle wider than ourselves.

And there is something else we should not lose while talking about safety.

Safety and personal care are not the whole of a human life.

Food, clean clothes, medication, bathing and toileting may keep a person alive.

They do not, by themselves, make a life.

People with profound autism still need things that interest them. People they enjoy. Places to go. Movement. Music. Food they love. Things to anticipate. Choice. Pleasure. Affection. The freedom to be ridiculous. Opportunities to participate in the world in whatever ways are meaningful to them.

Profound disability does not abolish the need for purpose and joy.

So when we look towards our child’s future, perhaps these are some of the things we can work on today.

Health.

Communication.

Learning and life skills.

Financial security.

People and community.

Safety.

And a life worth living.

But parenting has two people in it.

The child is only one of them.

Preparing the Parent

If the future frightens us, we cannot concentrate only on preparing our children.

We have to prepare ourselves too.

We talk a great deal about preparing autistic children for adulthood. We talk much less about preparing parents for the decades of physically, mentally and emotionally demanding parenting that may lie ahead.

For some families, intensive caregiving will lessen as their child grows.

For others, it may continue for decades.

And if the parent is a central part of the child’s support system, then the sustainability of that parent matters.

Regulation

Parents need emotional regulation.

Not because a good autism parent should float serenely through meltdowns, medical crises, aggression, sleepless nights and frightening behaviour.

That person does not exist.

Regulation matters because there will be moments when our children need our nervous systems functioning well enough to make the next decision.

At 110 kmph, my terror was entirely appropriate.

What mattered was whether some part of me could continue steering.

Regulation is not the absence of fear, anger, grief or panic.

It is not emotional suppression.

It is being sufficiently able, when it matters, to respond to the reality in front of us.

And sometimes regulation comes later.

After everyone is safe.

Permission to Break Down

Because parents also need permission to break down.

There will be days when none of this can be held gracefully.

Fear. Anger. Exhaustion. Tears.

Nights when nobody sleeps.

Days when the logistics become absurd.

Times when the future feels so enormous that we have absolutely no interest in reframing it into something uplifting.

Regulation cannot become one more standard autism parents fail at.

Sometimes capacity means recognising: I am not okay.

Get everyone safe.

Ask for help if it is available.

Fall apart for a while.

Eventually get up again.

Building Capacity

And then we build capacity. Because this is not a sprint. For some families, it may be a marathon of lifelong caregiving.

Our health matters.

Sleep matters.

Money matters.

Relationships matter.

Having people we can call matters.

Having parts of life that are not autism matters.

Rest matters.

Not because autism parents deserve a bubble bath for being heroic, but because depleted people have fewer options.

Capacity gives us room to respond.

And this is where wonderfully simple advice tends to collide rather hard with actual family life.

After what happened in the car, the obvious solution is:

Don’t drive alone with Krishna.

Fine.

Then who comes?

His father comes whenever he can work from home. But he cannot work from home every day. He has a job. He has to keep the job. How else do we pay for therapies and an increasingly expensive future?

There aren’t conveniently unoccupied family members lurking around waiting to accompany me on a two-plus-hour round trip.

So I am now figuring out another adult to travel with me.

Which means paying someone.

One form of protecting Krishna can interfere with another form of protecting Krishna.

Perhaps we should move closer to therapy.

Fine.

Where?

A new home has to accommodate Krishna, who sometimes needs to run around yelling and throwing things. Last night, for example, he was a super-hyperactive insomniac.

It also has to accommodate my bedridden elderly parents and their caregivers. My parents absolutely require their medicated sleep. The house needs enough space for these very different lives not merely to fit inside the same walls, but to coexist.

I cannot afford the exorbitant cost of an enormous house or apartment in the city.

And when we built the home we live in, Krishna hadn’t even been born.

Being an autism family—more specifically, a profound-autism family—did not figure in our dreams.

Or our nightmares.

We didn’t fail to plan for this life; this life did not yet exist.

And Then Life Changes the Plan

Perhaps that is the trouble with our desperate desire to secure the future.

We imagine that somewhere there is a sufficiently comprehensive plan.

If only we research enough, earn enough, teach enough skills, make the right financial arrangements, find the right people, choose the right house and anticipate enough possibilities, perhaps we can finally relax. But the best of plans and the best of intentions can be taken apart by life in a microsecond.

A child is born. A diagnosis arrives. Parents age. Someone becomes bedridden. A job changes. Money gets tighter. A child’s needs change. Abilities emerge that nobody expected. Difficulties appear that nobody predicted.

A gut-pain episode that previously meant pulling over, giving medication and walking for ten minutes suddenly means your child vaulting into the driver’s seat at 110 kmph.

Tomorrow may make a fool of today’s plan.

The future keeps tearing its whiskers off and saying, Ha! I’m not what you thought I was.

So what do we do?

We look at what is true now.

Name it.

Face it.

Act.

Adjust.

Prepare again.

There is no final plan.

We make the best plan available with the reality we know. Then reality changes, and we change with it.

Eventually, this becomes less a strategy and more a way of life.

Perhaps the capacity autism families most need to build is not the capacity to create a flawless future, but rather, the capacity to adapt.

Sometimes the adaptation will be the child’s.

Sometimes the parent’s.

Sometimes the house.

Sometimes the car.

Sometimes the finances.

Sometimes the expectations.

Sometimes the plan itself.

The future plan made for a five-year-old cannot simply be enlarged for the fifteen-year-old and handed over to the thirty-five-year-old. And agency does not mean believing we can prevent everything. It means being willing to respond to what reality teaches us.

Yesterday reality taught me something frightening about travelling with Krishna. Today I am looking for another adult to accompany us. I don’t yet know whether that is the sustainable answer. Perhaps we’ll discover a better safety arrangement. Perhaps we will eventually move. Perhaps something else will change and the whole problem will need to be thought through again.

I cannot create Krishna’s entire safe future today.

But I can make the next journey safer.

And perhaps that is how we live with fear of the future.

We don’t get rid of it.

Sometimes we need to feel it. Because sometimes fear makes us look properly at something we would rather not look at. Then we make the fear smaller and more specific.

What exactly am I afraid of?

What is true today?

What can be acted upon now?

What can this child learn?

What can we put in place for tomorrow?

What capacity does the parent need so that, when the plan changes—and it will—they can respond?

We name it. We face it. We act. We adjust. We prepare again.

And we accept that tomorrow may make a fool of today’s plan.

Then tomorrow, we begin again.

Because uncertainty does not make preparation pointless.

It makes adaptation necessary.