I Am Not Less Autistic Because I Learned How to Live

When my four-year-old brother came inside bleeding from his head, my mother fainted.

I was nine.

So I patched him up and called for help.

I did not know anything about nervous systems, sensory processing, trauma responses, or the way some people’s brains go quiet in a crisis. I only knew my brother was bleeding, my mother was on the floor, and somebody had to stay useful.

That has been true for most of my life.

In a crisis, I do not usually fall apart first. I detach. I assess. I figure out what needs done, and then I do it.

People misunderstand that.

They think detached means disconnected. They think calm means careless. They think logical means cold.

But the feelings come. They just do not always come first.

Sometimes panic can wait.

It has to.

For me, emotion is not just a feeling. It often comes with a physical cost. A migraine. A flare. A need for extra sleep or rest. A body that pays later for what the mind had to hold together in the moment.

That is one reason detachment matters.

If I let the full emotional weight of a crisis hit me while the crisis is still happening, I may lose the ability to function when functioning matters most.

That does not mean I am unfeeling. It means my brain has learned how to keep the situation from getting worse. In an emergency, my first instinct is not to narrate the fear. It is to find the next useful step.

Check the wound.

Find the pulse.

Call for help.

Protect the children.

Do the thing that keeps everyone alive long enough for the emotions to catch up.

That way of functioning has helped me in some of the hardest moments of my life. It has also caused people to misread me.

I have been called defensive when I was trying to explain. Argumentative when I was trying to clarify. Cruel when I was being direct, even when I was working hard to be diplomatic.

There is a particular kind of frustration in being misunderstood by people who think they have already figured you out.

Once, a psych doctor who saw me one time decided I was hedonistic.

The word stayed with me because it was so wrong.

Owning my choices does not mean I am reckless. Wanting to live fully does not mean I am careless. Taking responsibility for my life does not mean I am chasing pleasure with no regard for consequences.

Sometimes people mistake ownership for recklessness when they do not understand your logic.

But I know myself.

I have lived enough life to know the difference between a real crisis and social noise. I know when something requires my full attention and when it is just someone else’s discomfort trying to become my emergency.

That did not happen overnight.

It came from experience.

You live. You take things in. You think about what happened. You analyze. You improve your reaction the next time.

That is how I have always learned.

And that is part of what helped me understand autism differently once it entered our family’s shared language.

My daughter’s journey to diagnosis was a major turning point in our lives. I started by trying to understand her. I saw her overwhelm first. I watched what happened when the world asked too much of her. I paid attention to what helped, what hurt, what made things worse, and what gave her room to breathe.

I remember hearing Rae scream during a meltdown and realizing she had no control over herself in that moment.

And I remembered that feeling.

Not as an idea. Not as a theory. As a memory in my own body.

I remembered being a child and hearing myself scream, but feeling like I could not stop. Almost like it was not my voice anymore. Like the sound was coming out of me, but I was not the one driving it.

That was the moment something shifted.

I was trying to understand my daughter, and somewhere in the middle of learning her, I started recognizing myself.

It did not change my character. I was already who I was.

It changed my understanding.

Suddenly, pieces of my life made more sense.

The sensory overwhelm. The need for silence. The way I could handle emergencies but struggle with constant noise. The way I could be deeply empathetic and still detached in the moment. The way I could explain something with precision and still be accused of arguing. The way I could seem fine until I very much was not.

I was not becoming a different person.

I was getting a better map.

That matters because people often have a narrow idea of what autism is supposed to look like.

Sometimes they picture a child melting down in public. Sometimes they picture someone socially helpless. Sometimes they picture a person who cannot understand tone, emotion, or relationships.

Sometimes they picture their five-year-old nephew.

I am not dismissing that child. I understand sensory overwhelm. I understand what happens when a nervous system hits capacity and does not have one more inch of room.

But I am not five.

I am 45 years old.

I have had decades to learn myself.

That does not make me less autistic. It means I have more practice.

I still deal with sensory overwhelm like any other autistic person. I still have a body and brain that can get overloaded by noise, texture, pain, lights, expectations, interruptions, appointments, people, input, and not enough recovery time.

But I have also learned how to accommodate myself.

My hair down can become overwhelming, so I keep a hair tie with me. I do not wear necklaces or tight necklines because they give me a claustrophobic, nauseous feeling. I keep headphones and earplugs either on me or in my purse. I try not to schedule too many appointments in one day because chronic illness and sensory overwhelm do not care how ambitious my calendar looks.

I take downtime. I take space. I step away when I need to regulate. I build recovery days into my life because pretending I do not need them does not make me stronger. It just makes the crash worse.

That is not helplessness.

That is maintenance.

There were years when I did not understand that.

There were years when I thought being able to survive something meant it was not damaging me.

I could push through, so I pushed. I could function, so I functioned. I could keep going, so I kept going.

And because I could keep going, I assumed I was fine.

I was not fine.

By the time burnout fully caught up with me, my body had been warning me for years.

Migraines.

Stomach issues.

Getting frustrated too fast when things did not work.

Needing more and more time alone just to function.

Losing my ability to recover at the speed life demanded from me.

Those were not random symptoms. They were warning lights.

I just did not know how to read them yet.

Looking back, I can see the cumulative cost more clearly. Childhood trauma took a toll. Divorce took a toll. Loss took a toll. Survival years took a toll. So did living in high-stress environments and never having enough peace.

And sometimes the toll was not dramatic from the outside.

Sometimes it was just sound.

There were years when silence was almost impossible to find. My former husband would work on beats in the studio, and I would hear the same piece of sound over and over and over for hours. Not even a full song sometimes. Just a fragment. A loop. A piece of a beat being built and rebuilt until it felt like it was scraping the inside of my skull.

Now I often drive in silence.

I do not always need music.

I need room to think.

I need my own mind without someone else’s sound pressing against it.

That is one thing burnout taught me. The body keeps the score even when the mind thinks it has everything handled.

I had assumed my mind could drag my body through almost anything.

For a long time, it did.

Until it could not.

Burnout changed my life.

I am on disability now. I am not pursuing the physical therapy degree and career I once thought would be my way forward. It was not just a job idea. It was my plan. A career that paid well enough to support me and my kids the way I wanted to. A clear road. Graduate. Work. Earn enough. Build something better.

It felt like the straightforward way out.

Losing that hurt. I do not need to pretend it did not. Disability changed what I could count on from my body. It changed my options, my pace, and my relationship with ambition.

But it did not take my life.

That distinction matters to me.

Burnout did not get to define the whole story. It became part of the story. A major part. A life-altering part. But not the ending.

I had to recalibrate.

That word sounds clean, but the process was not always clean. It was grief and frustration and stubbornness and slow rebuilding. It was accepting that sleep, food, pain, movement, stress, sensory processing, and emotional capacity all affect each other.

Common sense, maybe.

But common sense is not always easy to apply when you are living inside a body that hurts, a life that needs things from you, and a nervous system that does not have much margin.

Pain affects sleep. Sleep affects pain. Food, movement, stress, and sensory processing all pull on each other. I know that sounds obvious, but I resisted it for a long time because I was used to treating my mind like the strongest thing in the room.

If I could understand the problem, I thought I should be able to override it.

Burnout taught me that insight is not the same thing as capacity.

So now I pay attention.

I am not perfect at it. I still overdo it sometimes. I still get frustrated. I still misjudge my capacity. I still want to do more than my body can always handle.

But I am learning to work with the truth instead of fighting it every day.

That is part of what adult autistic life looks like for me.

Not becoming less autistic.

Not becoming magically calm.

Not becoming immune to overwhelm.

Just learning the cost of things before I spend more than I have.

It also means learning what does not require a reaction.

I do not have to engage every misunderstanding. I do not have to attend every argument I am invited to. I do not have to absorb every mood in the room. I do not have to prove myself to people committed to misreading me.

I can remain detached when the situation does not require connection.

That sounds harsh to some people, but it is not.

It is discernment.

There is a difference between caring and letting other people’s chaos move into your body rent-free.

There is a difference between explaining yourself and begging to be understood by someone who has already decided not to understand you.

I have learned not to make every misunderstanding my emergency.

That is not because I do not care about people.

It is because I care about my life.

I care about my family.

I care about the work I am building.

I care about not burning down the life I am trying so hard to create.

Life after survival looks different than the life I once planned.

It looks like family. Writing. Gardening in containers and getting excited over sugar snap peas. Art spread across my desk in the middle of real life. Midwest Mimi.

It looks like turning everything I have lived, learned, survived, studied, and questioned into something useful.

Midwest Mimi gave me purpose again.

Purpose gave me hope.

And hope gave me room to dream of a better life and future again.

That is not a small thing.

When you have lived in survival mode for a long time, dreaming can feel irresponsible. It can feel foolish to imagine something better when you are still trying to get through the day in front of you.

But purpose has a way of opening a window.

Not all at once.

Just enough.

Enough to say, maybe there is still more.

Enough to say, maybe the life I build from here can still be good.

Enough to say, maybe losing one road does not mean there are no roads left.

I am not saying autism is a superpower.

Autism is not a magical gift that makes everything secretly wonderful. It is also not a tragedy that makes life hopeless. It is part of how I process the world. Part of how I think. Part of how I struggle. Part of how I notice patterns. Part of how I get overwhelmed. Part of how I solve problems.

It is not all of me.

But it is not separate from me either.

I am autistic.

I am also grown.

I am a mother. A wife. A writer. A disabled woman. A person who has made choices, lived with consequences, learned from them, and kept going.

I own my choices.

That does not make me hedonistic.

It makes me honest.

I have made choices that cost me. I have lived through things I would not recommend as a life plan. I have also gained wisdom, perspective, courage, and a deep understanding of people that I do not think I could have gotten any other way.

I would not trade all of it away.

Because those experiences are part of who I am.

And I like who I am.

That does not mean I romanticize the damage.

It means I refuse to throw away the woman who came through it.

I used to think strength meant being able to keep going no matter what.

Now I think strength means learning when the cost is too high.

I used to think surviving proved I was fine.

Now I know surviving and being well are not the same thing.

I used to think I had to make my way through whatever life handed me.

Now I am learning to build a life that does not require me to survive every room I enter.

That is the work now.

Not curing myself.

Not proving myself.

Not performing a version of autism other people recognize.

Not apologizing because my regulation looks different from someone else’s.

I am not less autistic because I have learned how to manage myself.

I am not less autistic because I can stay calm in a crisis.

I am not less autistic because I understand social patterns, read people well, or know when to keep my mouth shut most of the time.

I am not less autistic because I have learned to step away before I break down.

I am not less autistic because I have built a life around recovery days, hair ties, silence, boundaries, and purpose.

I have just been paying attention.

2 responses to “I Am Not Less Autistic Because I Learned How to Live”

  1. This is amazing and I feel so much of it. Thank you for writing it. I am 45 also and was diagnosed just a few weeks before my 45th birthday. I have been learning myself my whole life, 20+ years of working with kids on the spectrum and then perimenopause hit and suddenly everything made sense! This part of your post “The sensory overwhelm. The need for silence. The way I could handle emergencies but struggle with constant noise. The way I could be deeply empathetic and still detached in the moment. The way I could explain something with precision and still be accused of arguing. The way I could seem fine until I very much was not.

    I was not becoming a different person.

    I was getting a better map.” Brought tears to my eyes because it felt like I could have been the one to write it. I am a wife, a mother, a writer and an educator that just happens to also be autistic 💕

    Liked by 1 person

    1. Thank you so much for this. This is exactly why I wrote it. So many of us have spent our whole lives learning ourselves without ever having the right map. I’m so glad this found you at the right time. Being a wife, mother, writer, educator, and autistic person are not contradictions. They are all part of the whole person. I’m honored my words made you feel seen. 💕

      Liked by 1 person

Leave a comment