For Autism Awareness Month: unexpected changes

A special episode of Carl the Collector for adults and children

When someone asks me whether they or someone they love could be autistic, after the caveats that I can’t give a diagnosis, I usually get around to asking how they react to unexpected changes.

This is usually a moment of revelation. If they get a flash of how much they overreact to curve balls, it often sends them on a journey to learn more about their autism because they want to know why it’s so hard for them.

There’s a special episode of Carl the Collector that nearly every autistic person can identify with where Carl plans a sleepover for all of his friends. (Click here and watch the second episode in the pair.) The sleepover is to occur in the tree fort on the night of the Super Blue Moon, which happens at precisely 9:37 pm. Before that, Carl has planned 7 activities that all occur at a certain time, which he has laid out in a checklist on his clipboard and presents to his mother via PowerPoint.

Despite his mother trying to prepare him for the fact that things might not go precisely according to his plan, he charges ahead. As expected, things don’t go quite right: someone is late, the pizza arrives early, not everyone wants to sing the moon karaoke songs he has picked out, and pretty soon, Carl is in bed with the covers over his head. Of course, it being a show for young children, his very understanding friends figure out how to put the pieces back together, and everyone is happy watching the Super Blue Moon in the tree fort by 9:37. (For children with greater impairment than Carl has, this happy ending might not be achievable.)

I really identify with Carl on this one. His compulsion comes from a very sincere place of wanting his friends to have fun. The effort that he put into making the plan allowed him to make a connection with them (even if they didn’t know it), because he spent a lot of time thinking about what they might want. He doesn’t want anyone to miss out on doing something they wanted to do (at least as he imagined it) because they didn’t stick to the schedule. But his friends logically think initially that he is just being selfish and dogmatic by insisting that everyone stay on the schedule.

I have a home in Orlando, FL. We get a lot of visitors who want to go to the Disney parks with their kids or grandkids (or, let’s face it, them). Because of the way Disney has changed the system, you need to pay to reserve times to go on the big rides if you don’t want to spend all day waiting in line. (It also causes greater financial burden on people who want to go who can’t afford it.) This means the old days of just going over and going on what you want are pretty much out the window.

These changes are a playground for my autistic mind because you have to know where every bathroom is, how far apart the rides are, and what the likelihoods are of getting a time reserved, which unfortunately, you can figure out by looking at the rabbit holes of data on the internet. So, I can absolutely write you an optimal plan that will get you on everything you want to go on that is supported by hard evidence.

When I go over with people, I get pretty anxious if they don’t stick to the schedule. It’s not for me, I’m usually not going on the rides. I just hate the idea of getting to the end of the day and having someone say they were sad they missed something that they could have gotten on if we’d stuck to the schedule. Just like Carl, I watch things throw people off the plan. They get hungry, they realize they don’t like a certain kind of ride, they get too tired. My head says that they’re going to have a good time anyway, but that is so hard for me to fight through. They do always seem to have had a great time and realize that the planning really mattered in terms of what they got to do (again, Disney has given them relatively no choice about that).

The versions of Carl’s story that take place in work environments don’t always end so well. Autistic employees often want plans like Carl’s, even if we didn’t make them. Tight plans lower unpredictability and allow us to be sure we’re going to accomplish what we’re responsible for. In my case, this usually just leads to unnecessary drama, but for many autistic people, it makes it hard for them to keep a job.

Lots of autistic people who contact me now share these same stories. I’ll be writing much more about this in Leading with Autism, which will hopefully be out for autism awareness month in 2027.

In the meantime, thanks to everyone who is bringing awareness to autism in April and all other months!

And take a look at Carl. He’s got something to teach us all.