The Complicated Companion

We didn’t start on good terms, autism and me.

When Jordan was diagnosed at five, autism felt like an enemy that was stealing the future I had imagined. I hated it. I hated the confusion, the exhaustion, and the uncertainty of it all.

In those early years, I was fighting against something I didn’t understand. Autism felt like the thief that had taken my little boy and replaced him with someone I didn’t know how to reach. I was terrified of what it meant, of what his life—and our life—would look like.

I remember the heaviness of those days. The constant appointments, the acronyms, the wondering if I was doing enough, being enough. Most of the time I couldn’t see past the word autism long enough to just see Jordan. Some days, many days if I’m being honest, it felt like too much and I didn’t know how I was going to do it. 

But here’s the thing — over time, autism became tangled into every part of who he is, and of who I was. And while I’ll never say it’s easy, I also can’t separate my love for him from the autism that shapes him.

Somewhere along the way, it stopped being the enemy.

I heard someone say once that she carries her anxiety around like a purse, and it made so much sense to me, and I immediately thought of Jordan’s autism.
It isn’t something you can put on a shelf and come back to later.
It’s always with him. With us.

It comes along for every moment — the good ones, the hard ones, the ones that leave you laughing and crying at the same time. It sits beside us at the dinner table, joins us on road trips, shows up uninvited in the middle of a peaceful day — and not to mention it’s with us in so many sleepless nights.

Autism is woven into every part of our lives, and even though I once wanted to fight it, I’ve learned to live alongside it.

When Jordan turned eighteen and we sat in that courtroom for guardianship, I felt the full weight of what this parenting journey had become. He sat across the room with his court-appointed lawyer, and I remember thinking, How did we get here?
There was sadness and gratitude all mixed together in that moment.

Jordan is twenty-nine now. He still needs help in ways other people his age don’t, but he’s also incredibly smart, stubborn, rigid, and routine-driven. He’s uniquely him. He has an incredible memory that, as I get older, I am realizing is becoming very useful — LOL!

So, no — autism isn’t the enemy anymore. But it isn’t a friend either.
It’s something else entirely.
A complicated companion.

It’s the thing that taught me patience when I had none left.
It’s the reason I notice small moments most people miss.
It’s the mirror that’s shown me the strength I didn’t know I had.

And while I still have days where I cry for the boy I thought might have been, I smile every single day for the man he has become.

Autism may have changed the map, but it didn’t take away where we were always meant to go — right here, side by side.

For everything it’s taken, it’s given something too — perspective, patience, and a love that runs deeper than words.

If this resonated with you, I want you to know — you’re not alone.
I’ve walked this road for nearly three decades now, and I know how heavy it can feel when your motherhood looks nothing like you imagined.

And if you haven’t heard yet, I’m writing a book — Loving Through the Unexpected: Finding Strength, Surrender, and Acceptance Parenting Autistic Children.
It’s honest, hopeful, and filled with stories just like this one — real life, real love, and everything in between.  I can’t wait for it to be in your hands in 2026.

This was written by Shannon Urquiola at Not Your Average Autism Mom.

Thank you for being part of our journey.