What Is Autism, Really? Our Unscripted Journey with Jayden

What is autism, really? I’m not going to feed you the formal definition lifted from a medical school. Or the polite versions wrapped in pastel ribbons during Autism Awareness Month. Autism is a spectrum — sure. But let’s talk about what that actually means.

For us, autism is Jayden refusing to eat anything else besides chicken simply because he doesn’t like the textures of other food, or how he refuses to let me cut or anyone, for that matter, to cut his hair because he just doesn’t like it. It’s Sisca and me staring at each other at 3 a.m. exhausted while Jayden thrashes in bed, unable to sleep because his brain won’t let him shut out the world. It’s me choking back rage at strangers who stare in disgust when my son has a meltdown in a mall because he lost his tiny “comfort and safe” toy he brought along from the house.

 It’s silence. Deafening silence. Because my boy can’t say “Daddy” or “Mommy,” and maybe never will. And there are so many professionals and experts who give recommendations on what works for Jayden, but yes, we are often clueless about what really works or helps. Sometimes it feels like it does, and other times, it doesn’t.

It’s loving a child with every cell in your body — while mourning the life you thought you’d have. And feeling like a monster for admitting that grief exists at all. It’s the future creeping in at night, whispering dark questions: What happens when I die? Who will take care of Jayden? Who will understand him the way we do? Will he ever be safe? Will anyone ever love him the way we love him?

Autism is a thief sometimes. It steals time. It steals ease. It steals the simple, taken-for-granted moments other families have — like spontaneous outings or conversations over dinner. But autism also gives. It gives me the ability to celebrate things I never even noticed before — like Jayden making eye contact for two seconds, or holding my hand willingly, or sitting through a meal without bolting from the table.

It gives me a love so fierce it feels like it could break my ribs. A love that has no conditions, no rules, no need for words. It gives me Sisca, my partner in every battle. The person who sees the same shadows and still chooses to find the light.

But let’s be brutally honest: autism changes. It’s not a static diagnosis. When Jayden was a toddler, autism was delayed and missed milestones. Other kids talked; Jayden didn’t. Other kids played pretend, Jayden lined animals on the floor for hours. As he grew, autism became bigger. Louder. The meltdowns hit like hurricanes. The therapies multiplied. The gap between Jayden and his peers widened into a canyon.

Now that Jayden is older, autism is heavy. He’s stronger. Harder to restrain when he’s overwhelmed. Puberty is on the horizon, with hormones ready to wreak havoc on a brain already wired differently. And the fear grows. Because people tolerate a cute autistic child. They do not tolerate a grown man flapping his hands, yelling in public.

Autism doesn’t fade. It evolves. The world grows less patient. The stares get sharper. The judgment cuts deeper. But so does our love. I’m writing this because I’m tired of the “special needs parent warrior” memes that paint us as saints. We’re not saints and definitely no Angel either.  We’re just parents, fighting for our kids in a world that doesn’t make space for them.

Autism is messy. It’s relentless. It’s beautiful. It’s brutal. It’s all of it, tangled together in ways I’m still trying to understand. That’s what autism really is. 

And this is Autism Raw.

Welcome to my Unscripted Journey