Autism and a Question

Who makes the rules? I know that seems like an odd question for a Christmas post, but really, I do want to know. Who makes the rules? The rules that decide why behaviors with autism aren’t “right”? Who decides?

I took Casey and Rob to see the Wild Lights at a zoo last night. Casey was so excited that she giggled the whole drive (about an hour and a half). Rob reminded me the whole way where we were going and he was going to see “boo” (blue) lights and a lake.

Our first stop is almost always a train ride that loops around a small part of the zoo. We got in line and Rob was so excited that the line was along the tracks and he could watch the train coming and going as we waited to buy our tickets. They both had huge smiles on their faces. Rob was humming and bouncing, but not moving out of one spot. Casey was smiling and rocking slowly back and forth. Both were obviously excited.

In front of us was a man, woman and five kids, ranging in age from maybe 1 to 6 or7. All of the kids, except the baby who was being held) were dancing around and squealing – just being kids, until the oldest decided to climb over the rope barrier and pull at the strands of lights covering the bushes. Then the other ones followed suit. Casey and Rob just watched, but really, couldn’t have cared less what the kids were doing. The parents, meanwhile, are completely ignoring the fact their kids are pulling lights off of the bushes.

Finally, the mom yelled at them and made them come to her. Casey giggled at the kids getting into trouble, but it wasn’t obvious. So the little angels are standing in a group whining for everything under the sun and the mom glared at Rob. He was standing well out of their way (he hates getting too close to anyone!), but he was humming and rocking a little louder and faster and apparently, she didn’t approve of the noise.

I’ll be honest, if he was loud, I would have asked him to use a quieter voice, but we were in a line of people all talking and laughing and beside a set of tracks with a train coming and going every few minutes. I barely heard him – and I was standing right beside him. So, I watched her and decided since I was wearing a Grinch hat, I might as well act like one. She whispered something to her husband and pulled the kids farther away from us (cause, you know, autism is as contagious as COVID) and glared again. And the kids yelled louder.

We stepped up as the line moved. She turned to me and asked me not to crowd them. At this point, we were probably three feet from them – in a line. I smiled and said we wouldn’t crowd since her kids needed plenty of room to move. (not being sarcastic – we all know how kids are in line!) She popped back with “at least they aren’t making that annoying humming noise” Without even thinking I said, “yep, you are right – yours are destroying the hard work of the zoo workers.”

By then, her husband had their tickets and they moved on (and thankfully, were the last passengers on that train!) and the sales guy was laughing when I stepped up. “Good for you!” was all he said before “Merry Christmas.”

Casey and Rob enjoyed the train ride and seeing the lights in a tunnel, but I was wondering – who decides it’s ok for kids to cross barriers and pull at lights, but not to hum and rock in place?

When they needed to use the restroom, we ran into another “rule-maker.” The zoo has family bathrooms that just have one toilet, but it’s a bigger area if you need to change an adult. No one was using it, so I sent Casey in and when she was done, Rob used the bathroom. Meanwhile, another lady was sitting on a bench watching. As I waited for Rob to come out, she decided to tell me how family restrooms were to be used – and it wasn’t for people “like” us.

I thought maybe she didn’t realize they had autism, so I tried to explain. She cut me off and said they didn’t need to use the family restroom, as they were capable of going into the restrooms. I tried again to explain that it wasn’t safe for Rob to go in alone and neither could be trusted to wait outside while I helped the other. She declared again that they weren’t little, weren’t handicapped and that I just didn’t want to wait in the line like I should.

It’s Christmas, so I smiled and told her she was certainly entitled to her useless and unwanted opinion and to have a Merry Christmas. But, really – who decides the rules for the family restroom? Who decides that autism isn’t a disability? Who decides what’s best for my kids? (I can answer that one – me! It was just rhetorical.)

Casey and Rob were completely unaware of her, as they were distracted by the light show on the lake, but as we sat and watched, I wondered again. Who makes the rules? And what gives perfect strangers the confidence to believe they need to share their opinions with me? I didn’t tell the mom by the train her kids were brats and she needed to stop them. What gives her the right to tell me? (Besides just bad manners)

And now I’ll give you the answer to my question – who makes the rules? Society. But the thing is, the rules change and need to be changed. So don’t avoid taking your child anywhere! Only by taking our families to the zoo and to the park and to restaurants and to stores will society begin to know us. And once they know us, and autism, they won’t be as concerned about it. We’ll be just another family waiting in line for a Christmas train.

Don’t be scared to go out. Prepare yourself and enjoy. Maybe you’ll have to make short trips, at first – only you know what your child can handle. I’ll be honest – there are places I don’t take Casey and Rob, but it’s not because I’m concerned what others will think. I know what they can handle and what they will enjoy. I wouldn’t drag a typical child to something they wouldn’t like – why would I take a person with autism?

Perfect your glare. Stiffen your back and remember – you and your family have every right to enjoy and experience the same things every one else does. Remind yourself this quote by Dr. Seuss “Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.”