You Get What You Need: Navigating Autism as a Family

I’ve been struggling to write a blog lately. I’ve started at least ten on my phone, but none felt quite right.

I guess that’s how writers feel sometimes.

And then today happened—Sunday, my favorite day. The day Dylan visits, when I get him all to myself with no caregivers. But today wasn’t the Sunday I wanted. Today took me back to the trenches, to the days when it was so bad that I was often scared of my own son. Today was a day that reminded me how much I hate autism and everything that comes with it.

To understand, let me explain our Sunday routine. Dylan comes over, we go to Chipotle where he gets to go inside and order, then we stop at the gas station next door so he can pick out a drink. When we get home, he pulls out a huge bin full of chips from our pantry and places it beside him on the couch. He never eats the chips—ever. He just loves that bin and talks about it the entire drive home.

Dylan is also obsessed with those little packages of cheese and crackers with the red plastic stick to spread the cheese. You know the ones. Especially the pretzel version. They’ve been in the chip bin forever—never once eaten, but always checked for. Today, after an already agitated and ornery trip to Chipotle, Dylan did something different. He dug into the pretzels and cheese and started eating them.

We quickly realized they had expired two years ago.

(Don’t come at me—I never thought to throw them out since he never ate them, just liked knowing they were there.)

Dylan, not understanding what "expired" meant, was devastated when we took them away. His distress escalated fast. He hit me—hard. It wasn’t just the pain of a blow from a 230-pound man who doesn’t know his own strength. It was the look on Anderson’s face. The accusatory glance from Kevin, silently asking why I hadn’t checked the expiration dates. The awkward discomfort of Anderson’s boyfriend. The entire dynamic in the room shifted in an instant.

Dylan didn’t stop at one strike. He fought to get the pretzels back, his frustration spiraling. He dug his nails into my arm, threw me, hit Kevin. And then, in the midst of all the chaos, he said, "I know why I’m sad."

My heart shattered.

Because I know. I know Dylan can’t control these reactions. I know he doesn’t understand his own strength. I know he loves us and doesn’t want to hurt us.

Just like I know autism isn’t understood. Not really. No matter how many times someone says, "Oh, I get it—my coworker’s son has autism," or "My neighbor down the street has autism."

Do they really know?

Do they know what it’s like to be slightly afraid of your own child in moments of aggression? Do they know what it’s like to hold a marriage together while navigating this life? Do they understand the constant planning, the relentless effort to predict and prevent every possible meltdown over the smallest things?

Who would have thought that some expired cheese and pretzels could unravel an entire Sunday visit?

The thing about autism is, you can’t plan for everything. You try—I try. I was so happy, so excited for today. I thought I had done everything to set Dylan up for a smooth visit. These Sundays are such a small window of my life, sometimes even resembling a typical family day.

Dylan recovered. Even though he was sad, I calmed him down in the "big bed" he loves to lay in. I patted his back and told him how much I loved him. Anderson recovered—this has been her life. Kevin recovered. But my sadness lingered long after Dylan left.

I didn’t want this to be my life. I didn’t want every aspect of my family’s life to be dictated by autism. But today was a stark reminder that the smallest detail missed can derail everything. I felt sad for Dylan long after he left. I felt sad for myself. I slipped into a brief moment of self-pity: Why me?

Dylan has a bunch of favorite sayings. One of them is, "You don’t always get what you want, buddy."

Dylan, you are the smartest. You don’t always get what you want, but I tell myself that you get what you need.