Unpredictability

The One Word Answer to so Many Feelings and Barriers of Autism Parenting

Last week, I was watching my friend’s two boys along with my three kids so she and her husband could go on a date.

I was glad to do it. Truly.

And at the same time, I feel the familiar ache of wishing someone would offer the same for my husband and I.

Although, if I’m honest, I’m not sure I’d say yes.

That’s the part I wrestle with.

I want the opportunity.
I want the ask.
I really really want to trust someone else with our kids, well…mainly our autistic kid, so my husband and I can step out for a few hours without carrying the weight of everything with us.

But I know myself.
I know I would worry the entire time we were gone.

And the more I think about why, the more I realize it comes down to one word:

Unpredictability.

Autism is unpredictable.

Especially when you’re parenting a nonverbal or semi-speaking child whose quirks and traits don’t follow a script.

Things can shift in a second. A millisecond.

What was fine yesterday might not be fine today. What looks small on the outside can feel enormous on the inside.

Other people just don’t know how to manage that.

Not because they don’t care.
Not because they don’t want to help.
But because it isn’t their norm.

It is our norm.

Every single day. Every single hour. Every single second.

When you live inside it long enough, you adjust. You learn patterns. You anticipate triggers. You develop instincts that aren’t written down anywhere. Over time, unpredictability becomes familiar. Not easy—but familiar.

But I’m realizing more and more that this unpredictability is the barrier behind so many of the hardships families like mine face.

Unpredictability scares people. It causes them to step back and draw boundary lines on what they can and can’t do.

And unpredictability creates anxiety for the ones who need predictability in order to feel safe. It’s in the same family as fear.

Here’s what unpredictability can look like in our house:

• Eloping—fast and without warning.

• Random high-pitched squeals and screams that make people freeze because they don’t know what comes next.

• Something thrown across the room before anyone realizes what’s happening.

• Running out of a room. Running without clothes. Running without fear. Running, lots of running.

• Meltdowns on the floor that don’t respond to logic, timelines, or bargaining.

• A “no-no” word spoken casually that only our family knows to avoid (like that movie watched months ago that still sends him into a spiral when mentioned).

None of these things mean that someone else besides my husband and I are incapable of managing and helping out for an hour or two.

But they do require a level of awareness and responsiveness that most people have never had to develop.

And that’s where the tension lives.

Because even when help is offered, I’m not just thinking,...

Can they keep my child safe?

I’m thinking,...
Can they read the room the way I do?
Can they pivot without panic?
Can they handle something they didn’t plan for?

And if I don’t know the answer to those questions, rest doesn’t feel restful. Even if we do get away, we are still mentally at home.

It feels like anxiety in disguise.

So we learn to live with unpredictability because we have to.
It becomes normal.
It becomes familiar.
Our rhythms aren’t built on certainty, but on readiness for the approaching, unexplainable, inevitable unpredictability of life.

But it also becomes the invisible wall that keeps help at arm’s length—even when we desperately want it.

And maybe naming that doesn’t solve everything.
But it does tell the truth.

And sometimes, that’s the first kind of relief we get.

Here’s what I know to be true amidst the above vulnerable observation of the life that God has given me:

He is predictable. Though trials are unpredictable. He will never change.

“Jesus Christ is the same yesterday, today, and forever.” - Hebrews 13:8

That’s my anchor in the unpredictability of every second of every day.