Facing Time, Part One: Aging Together

We talk about aging out as what happens when our children leave school. We do not talk enough about how parent and child age out together.

In May of 2014, I wrote a short post on Autism Day by Day called “Mother and Son: Roommates in Assisted Living Facility.”

It was barely a post. A picture. A few sentences. A laugh.

The image showed an older woman on a mobility scooter moving down the street with purpose, pulling an older man behind her on a little rocking horse with wheels. They were connected by a bar. She looked like she knew exactly where they were going. He looked unbothered by the logistics. Perfectly content to be pulled along for the ride.

I captioned it:

Come on Nick… Let’s go home.

Then I wrote the truth underneath the joke.

I was a single mother. I was afraid. Very afraid. I worried about a world where Nick was on his own. I worried about his safety when he was away from me. I knew I was best when he was near and I knew he was okay.

So I came up with a plan. Nick and I would be roommates in an assisted living facility. I would keep an eye on him for as long as I could.

And I laughed. Because in 2014, that future still felt far enough away to be funny.

Nick was young. I was younger. The picture felt ridiculous enough to let me stand near a fear I could not solve.

The mother in the scooter. The son behind her. Still together. Still moving. Still going home.

Then time did what time does.

Nick got older. I got older. And recently, I noticed a small thinning spot beginning at the top of his head. A paunch in his belly. Rising blood pressure.

That is when the picture changed.

It did not stop being funny completely. Humor is one of the ways I survive. But it became something else. A preview. A warning. A question I had not been asking clearly enough.

What happens if we grow old together?

Because the parent is part of the care system. And the parent is aging too. Those two facts belong in the same sentence.

We talk about aging out as if it is one event. The day school ends. The last IEP. The last bus ride. The last familiar classroom. The last year the system still calls your child a student.

And that day matters. It is a cliff.

But there is another part no one talks about enough. What happens after the cliff?

Because once school ends, the milestones get quieter. There is no next grade. No back-to-school night. No annual classroom photo. No school calendar organizing the year. No teacher sending home a note. No transition meeting where everyone pretends there is a next step already waiting.

There are birthdays. Doctor appointments. Program schedules. Staff changes. Medication refills. Transportation forms. New authorizations. New denials. New people who need to be trained. New people who leave as soon as they understand how much the job requires.

Life continues. But the markers change. And if you are not careful, adulthood can become a long stretch of maintenance instead of a life that keeps unfolding.

That is one of the hidden griefs of autism adulthood. The child grows up. The parent gets older. And the world stops naming the milestones.

Autism parents learn to hear one clock early. What happens when I am gone?

That clock is loud. It follows us through the diagnosis, the IEP meetings, the safety plans, the transition years, the housing questions, the sibling conversations, and the paperwork we keep meaning to organize before something happens.

But there is another clock. Quieter. Slower. Harder to look at.

What happens while we are both still here, but both getting older?

Because autism is lifelong. But so is aging.

The child you were told would need help forever does not remain a child. They become a teenager. Then an adult. Then, if everyone lives long enough, a middle-aged adult. And one day, the separation we depend on begins to blur.

Parent and child. Caregiver and dependent. Older mother and adult son. Two aging bodies inside the same lifelong diagnosis.

At some point, the question is no longer only: What happens when I die?

It becomes: What does care look like when I am old too?

What happens when my back hurts? When my memory is not as sharp? When I cannot lift, drive, organize, argue, call, fight, or recover as quickly as I once did?

What happens when the person I still call my child is no longer young either?

What does old look like for him? What does old look like for me? What does old look like for us?

That is the slow-crawling truth inside lifelong autism. You are not only planning for after you. You are planning for the years when you are still here, but no longer able to be the whole structure.

In autism, we talk about aging out all the time. But we usually mean what happens when our children leave school. The bus stops coming. The IEP ends. The classroom disappears. The child becomes an adult in the eyes of the system, whether the support is ready or not.

That aging out is real. It is brutal.

But there is another kind of aging out. The parent ages out too.

We age out of being able to carry everything alone. We age out of emergency-mode parenting that requires endless physical energy. We age out of being the person who can drive across town at night, sit through the meeting, argue with the agency, fill out the forms, train the staff, manage the medication, work the job, cook the dinner, and still sleep lightly enough to hear movement in another room.

We age out of the illusion that love can keep the body young.

Love is powerful. Love is not cartilage. Love is not memory. Love is not a working back. Love is not a transportation plan, a housing plan, a staffing plan, or a care-continuity plan.

At some point, the parent’s aging becomes part of the autism plan. Not someday. Now.

Nick is twenty-eight years old. He volunteers at the Los Angeles Zoo three days a week. He works in an office. He hikes. He takes piano. He takes art. He completes household responsibilities. He laughs with his whole body.

He still has profound autism. He still requires full-time support.

Both things are true.

But he is not standing still. His body is changing. His stamina will change. His medical needs will change. His routines may change. His tolerance may change. His communication needs may change. The world will keep seeing him differently as he gets older, just as it began seeing him differently when he grew from a small autistic boy into a Black autistic man.

And I have to be honest about something that lives beneath all of this.

I still see him as my child. Of course I do. He is my son. I remember the toddler. The little boy. The child whose hand I held through offices, parking lots, classrooms, evaluations, dentists, doctors, and too many rooms where people thought they understood him because they had a report in front of them.

But the person in front of me is not a child. He is a grown man. And one day, if we are blessed and challenged enough to get there, he will be an older man.

That changes the question. Not because he becomes less mine. Because he becomes more fully himself across a longer life than the systems ever taught me to imagine.

That old joke about Nick and me as roommates in assisted living does not feel like just a joke anymore. It feels like a planning question.

Not simply: Where will Nick live when I am gone?

But: Where might we both live while I am still here?

What if the next stage is not parent at home, adult child somewhere else, and a crisis waiting to decide the timing?

What if some families need a different model? A supported living community. A campus. A building. A complex. A place where disabled adults can have their own homes, routines, supports, staff, transportation, and community — and where aging parents can live nearby without remaining the whole system.

Not the same apartment. Not the parent still doing everything. Not independence as abandonment. Not closeness as control.

Something more honest. Proximity without dependence. Distance without disappearance. Support without pretending the parent’s body can keep doing what it did at forty.

I do not know exactly what that looks like yet. That is part of the point. So much of autism parenting is building toward answers we cannot fully see when we begin.

But I know this much. We need models that recognize lifelong disability and lifelong aging at the same time. We need housing that does not wait for parental collapse. We need support systems that do not treat the aging parent as an invisible, unlimited resource. We need adult programs that understand family systems do not end when the school bus stops.

We need to stop pretending the only question is: Where will my child live when I die?

Sometimes the question is: Where can we both live while I am still here, but no longer able to be everything?

For years, I did what parents do. I kept going. I figured out the next problem. Then the next one. Then the next one.

Diagnosis. Early intervention. IEP. Behavior. Speech. Sensory needs. Safety. Puberty. Public misunderstanding. Police. Employment. Transportation. Adulthood. Housing.

Every stage came with its own language, its own system, its own rules, its own crisis.

I became good at finding the next step. That is useful. It is also dangerous. Because competence can become a hiding place. People see that you keep solving things and assume you can keep solving things forever. Sometimes you assume it too.

Until your own body starts entering the room.

The knee. The back. The blood pressure. The slower recovery. The calendar with your appointments sitting beside your child’s appointments. The quiet realization that the plan cannot depend on you being the same age forever.

No one says this clearly enough. The parent is part of the care system. And the parent is aging. Those two facts belong in the same sentence.

I am not writing this from despair. I am writing it from recognition. There is a difference.

Recognition gives you a place to begin. Despair says nothing can be done.

Recognition says: This is real. So what do we build?

I have spent most of Nick’s life trying to make sure he had more than survival. I wanted him to have work. Community. Purpose. Movement. People who know him. Places where he belongs. A life.

That does not stop because I am getting older. But it does have to mature because I am getting older.

The plan has to become less dependent on my body. Less dependent on my memory. Less dependent on my ability to stand in the middle of every system.

That is not giving up. That is telling the truth soon enough to do something with it.

I still think about that picture. Not the way I did in 2014.

Back then, I saw the comedy first. The woman in the scooter. The man on the little rocking horse behind her. Connected by a bar. Her pulling him along as if this was simply how errands worked now. Him looking perfectly content to go wherever she was taking him.

I laughed because I recognized something in it. The mother leading. The son following. The strange tenderness of it. The absurdity. The love. The fear hiding underneath the joke.

Back then, I saw a funny possibility. Mother and son. Assisted living roommates. Me still keeping an eye on him. Me still saying:

Come on Nick… let’s go home.

Now I see something else inside it.

A mother trying to imagine a future where her son is safe. A woman using humor to stand near a fear she could not solve yet. A question that was always waiting underneath the laugh.

Maybe one day Nick and I will both be old. Maybe we will both move more slowly. Maybe I will still be trying to tell him to wait while he is already ten feet ahead of me. Maybe he will still laugh at something only he understands. Maybe I will still be watching his hands, his face, his direction, his safety, his joy. Maybe we will both need more help than I once wanted to imagine.

That is not the end of the story. But it is part of the story.

And if the diagnosis is lifelong, the plan has to be honest enough to include old age.

His. Mine. Ours.

If adulthood is starting to feel less like a future stage and more like the room you are already standing in, start with Chapter 10: Aging Out — Adulthood & Transition: The Cliff No One Tells You About.

It was written for the moment when school structure ends, but the deeper question keeps growing: What kind of life are we building now, and will it still hold later?

Use the planning tools. Write down the names. Ask about housing before crisis chooses for you. Look at the support structure around your child. Then look honestly at the support structure around you.

Because sometimes aging out is not only what happens to our children. Sometimes we are aging out together.

[Read Chapter 10: Aging Out — Adulthood & Transition]

This is the guide I needed when I was you.

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