I Was Wrong Again

Shared anonymously by a member of the OasisForAutism community

From The Heart is a space for unfiltered, real stories from autistic caregivers. To protect privacy, all contributors remain anonymous. The experiences here belong to specific people. The truth in them belongs to all of us.

Let me paint you a picture you’ve probably lived.

There’s a particular collection of items on a shelf, a windowsill, or a corner of the bedroom that has no obvious logic to anyone on the outside. Old bottle caps. Three specific rocks. A paperclip, a rubber band, and a torn piece of cardboard that was the packaging from something purchased two Christmases ago. You have no idea why these items are significant. You only know that moving any of them, even one inch, will produce a reaction that takes the rest of the afternoon to resolve.

Or maybe it’s the schedule. Not a loose preference for routine. A hard-coded, non-negotiable, the-world-ends-if-it-shifts schedule. Breakfast at the same time, in the same bowl, the same food in the same position on the plate. The television program that starts at 3:00 starts at 3:00, not 3:02, and certainly not a different program entirely. Transitions between activities happen in a specific order, and that order is not open to revision no matter how reasonable the alternative seems from where you’re standing.

Or it’s the route. Every trip to the same grocery store, the same park, the same doctor’s office takes the exact same path. Not because it’s the fastest or the most practical, but because it’s the path. The deviation you attempted last spring, the one that seemed like it would save four minutes, is the reason you still take three extra turns to this day. You learned. You don’t try that one anymore.

If you’re nodding at any of these, welcome. You’re exactly where this is going.

These behaviors, what researchers formally call restricted and repetitive behaviors, are among the most well-documented features of autism. They’re not quirks. They’re not stubbornness in the way most people mean that word. Neurological research consistently describes them as the brain’s response to a world that is, at a sensory and cognitive level, genuinely overwhelming. Sameness is safety. Predictability is survival. When that predictability is disrupted, the distress is not theatrical. It’s real, it’s physiological, and it makes complete sense from the inside even when it looks completely irrational from the outside.

Which brings me to the part I’m not proud of.

The Blue and White Package

My loved one had been using the same brand of adult pull-ups for nearly a decade. The same package. Same colors. Same familiar weight in the hand when you pulled one from the shelf. A staple, not just of our routine, but of the visual landscape of our home the way furniture is. It was just there, always there, so reliably there that I stopped consciously registering it.

Then the medical supply company switched brands. No warning. No transition period. No consideration whatsoever for the cascading effect that decision would have on a household like ours. (Shocking, I know.) The new packages showed up, different in every way that to my loved one would register as significant: different colors, different texture on the packaging, different logo, different weight.

I did what any experienced caregiver does in that moment. I stacked the new ones next to the old ones and waited. I was buying time while I braced for impact. Because I knew, with the absolute certainty of someone who has been doing this for years, exactly what was coming when the last familiar package was gone.

I knew it so completely that I had already scripted the week in my head. The refusal. The escalation. The hours of distress. The grinding work of re-regulation. I had begun grieving the week before it even arrived.

The last blue and white package came off the shelf on a Thursday. Friday morning, I opened the new brand for the first time.

And nothing happened.

I mean that in the most deflating, wonderful, humbling way possible. Not a flicker. Not a protest. The morning moved forward like any other morning. By the following week, the new brand was simply the brand. The crisis I had pre-lived in my own head with such detail and certainty never materialized at all.

I stood there feeling two things simultaneously: profound relief, and a specific kind of shame that only caregivers know. The shame of realizing, again, that you had sold someone short. That the catastrophe you had prepared for said more about your accumulated history of hard days than it said about the person standing in front of you.

Why We Do This (And Why It Doesn’t Make Us Bad)

Here’s the part where I could soften this for you, and I’m not going to do that. But I’m also not going to let you turn it into a reason to punish yourself, because the truth is more complicated than either comfort or guilt.

When you anticipate the worst, you’re not being dismissive of your loved one. You’re doing something that is psychologically quite rational: you’re pattern-matching. Every caregiver brain becomes, over time, a remarkably detailed archive of what has gone wrong before and under what conditions. That archive is not a character flaw. It is the direct result of paying close attention for years. It is expertise, expressed as bracing for impact.

The problem is that the archive is always slightly behind the person. Autistic individuals are not static. Research on restricted and repetitive behaviors consistently shows that they shift across time, changing in type, intensity, and significance as people grow, age, and accumulate their own experiences. What triggered a three-hour crisis at thirty-two may be a non-event at thirty-four. What was completely immovable last year may have quietly loosened without either of you consciously noticing. The person you are caring for is not the same person who lived through every difficult transition you’ve catalogued. Neither, for that matter, are you.

A 2007 study examining restricted and repetitive behaviors across development found that different categories of these behaviors peak and shift at different points in a person’s life. Circumscribed interests, for instance, tend to increase through adolescence and early adulthood, while some other rigidities can soften with age and familiarity. The behaviors aren’t a fixed ceiling. They’re a moving landscape. Which means your mental map of that landscape, no matter how carefully drawn, is always working from information that is at least slightly out of date.

I talked to my loved one after the transition. Not a lecture, not an explanation delivered at arm’s length to fill the silence. A real conversation, spoken directly, without dumbing it down and without assuming it wasn’t landing. I explained what changed and why. I didn’t know how much of it registered. I never fully know. But I’ve learned that talking to someone and talking at someone are two completely different acts, and the difference lives entirely in the intention you bring to the room.

I do this every time there’s a change I can anticipate. I explain it as clearly as I can, then I let go of my certainty about how it will be received. Because I have been wrong so many times, in both directions, that certainty is a luxury I’ve mostly stopped affording myself.

The catastrophe I had pre-lived in my own head with such detail and certainty never materialized at all.

Misjudging your loved one’s reaction to change is not a failure of love or attention. It is the predictable result of being a human being who has been trained by experience to expect difficulty, caring for another human being who is more than their most difficult moments. Every caregiver reading this has been wrong in both directions: certain of a crisis that didn’t come, and blindsided by a reaction they never saw coming. Both are normal. Both are humbling. Neither one defines how well you know or love the person in your care.

What matters is what you do with being wrong. If you use it to update your archive, to hold your predictions a little more loosely next time, to remember that the person in front of you is still capable of surprising you, then being wrong is doing exactly what it should.

The blue and white package is in the trash. The new brand sits on the shelf like it’s always been there. And I’m still learning, after all this time, to leave a little more room between what I expect and what actually happens.

That room is where you find out who they actually are. It’s worth protecting.

If this one made you wince a little in recognition, good. That means you’re paying attention. Submissions to From The Heart are always anonymous. If you have a story worth telling, this space exists for exactly that.