We Don’t Need Special Treatment for Autism, Just Necessary Treatment

Yes, that’s what I meant: we don’t need special treatment for autism, just necessary treatment.

A movie experience a few weeks ago.

Movie starts at 2pm. Guests arrive at 1:30pm, but the previous showing just ended so the theater staff is still cleaning up the theater. You know, to make it so we all have no popcorn in our seats, empty cups in our armrests and other things that detract from the experience.

Staff asks guests to wait outside the theater door, in the hallway, to wait until it’s clean.

No biggie.

Except one lady was really unhappy. “My son has autism.”

Okay?

Now, as a mom with many years of dealing with a child with autism, I get that taking a child on the spectrum to the movies can be challenging. We have to learn to deal with those challenges or autistic kids with no real-world experience become adults with no real-world experience.

It’s a double-edged sword. If we take our kids out into public, people stare. They don’t like their experiences tainted with tic sounds, crying, or other unpleasantness. (That’s sarcasm.) Yet, if we don’t teach them how to act in public — something ALL kids have to learn — people will be staring at them for the next 20, 30, and 40+ years. It’s up to us to push them out of their comfort zone while still protecting them from ignorant people.

We can’t win, so we try to teach them how to behave as soon as they’re mentally and physically able. The age is different for all kids, and we try to teach them in small doses. One day, it might be running into Target to get lemonade at snack bar. Next time, picking up one item all the way in the store and standing in the checkout line.

Each time, we try something more. It’s not fun though — and if you’re bothered by a kid freaking out because the lights make a buzzing sound or because they’re out of lemonade, I will say that you’re more of a problem than the child is at that point. It’s hard seeing our kids upset, but we have to keep the end goal in mind. And, there’s the reality that if we have other kids, we can’t keep them home just because our other child can’t go out.

Autism is badly misunderstood. It’s not willful misbehavior. Usually. Kids are kids and even kids with autism will attempt to manipulate or be sneaky. Most autistic behavior is communicating to us that the child is in physical pain or simply just can’t handle the overstimulation of their sense. It’s tough to explain to others, because it looks like we’re making excuses for our kids when we’re simply picking our battles, but don’t all parents do that anyway, to some extent?

So before we take a child with autism to the movies, we practice. We use social stories, which are basically dress rehearsals at home for what to expect. We use some verbal preparation like this, going through a ‘script,’ per se, of what we’ll do.

“We get in the car and we put on our seat belt. We arrive, walk through the parking lot holding mom’s hand or walking right next to dad, and we head to the door. (We buy tickets online to eliminate that one step; we’ll work on line waiting later, because it’s baby steps.) We show our digital tickets and head to the theater. We may have to wait to get in. We may not get the seat we want. We may have someone sitting next to us, whose arm may touch us. They may talk during the movie, which is rude, but we won’t talk because we’ll follow rules. If we have to use the restroom, we quietly signal mom or dad and we step out as quietly and gently as possible.” And so forth…

This, my friends, is life with autism.

Social stories give the kids a chance to envision what might happen, so they can be mentally prepared. Problem is, autism frequently includes OCD-ish behavior, where the kids have specific plans in mind. If we deviate, they can get upset, so we have to prepare them for possible deviation. It isn’t always possible, but we do our best, and our kids do their best.

I had to remind myself to not look at people who stared at us. Sometimes I did, I couldn’t help it. Sometimes I reacted when someone made a nasty comment or worse, made fun of my child. I know it’s ignorance, and some people are just jerks, but that doesn’t always help when I’m trying to quiet my child so he can enjoy a movie like every other kid out there gets to do. We love our kids just as much as you do.

As we worked to teach and grow, we tried oh so hard to not use autism as an excuse. Having a child with autism may get us early boarding on an airline, it may get us an easier way to wait for rides at an amusement park, but it’s not an excuse to use just because we can. It’s our duty, as parents of autistic kids, to teach them that the world won’t always work around us. We can expect reasonable accommodations, but we can’t demand everything be changed to fit us. We aren’t doing our kids any favors if we teach them that we say one magic word, “autism” and suddenly, doors open early, we’re allowed to take drinks into a museum that doesn’t allow food/liquids, or that we can just basically rewrite rules.

Life doesn’t work that way and special treatment for autism isn’t going to happen in the rest of the world.

Autism is just one part of life. I don’t use the word in every Facebook status or tweet or story or conversation. I can’t. It’s just one part of life, and just one part of my child. I have a permanent facial nerve disorder called Trigeminal Neuralgia, or TN for short. It doesn’t define me though, and most people don’t even know. It’s not an excuse or a way for me to skip the rules, and autism shouldn’t be either. I’m not out there to get pity, get special attention or anything else that saying “autism” in every sentence may get.

In keeping with that, I’m strongly against throwing the word out there to get early admission to the movies. So, when a mom insists on sitting down as the crew is cleaning around her — effectively getting in their way — I’m not going to take her side simply because she says “my son has autism.”

“Ma’am, I’m sorry, but no one’s allowed in while we’re cleaning.”
“My son has autism, and we need to be the first in here.”

“Ma’am, we understand, so you can be the first to be seated, we’ll give you the first admission, but we need you to leave until we’re done cleaning.”
“My son has autism, and we need to stay.”

Meanwhile, her older child is starting to get embarrassed. He sees what’s happening and doesn’t like how mom is a) embarrassing him, b) trying to circumvent rules rudely to the staff, who aren’t in charge of the rules, and c) manipulating the system when it’s not entirely necessary, as the staff IS trying to provide accommodations.

“Mom, it isn’t going to work this time.”
Mom makes a stink and walks out.

The staff did all they could. They offered her reasonable accommodations. She didn’t communicate to them why it wasn’t enough. What exactly did her son need that wasn’t being met by being first in line?

Does this mom do this everywhere? Church, the grocery store, the pediatrician’s waiting room? Or does her child not go anywhere?

Maybe the kid was having a bad day, but maybe that wasn’t the day to go to the movies. Maybe he just needed a 30-second head start away from people, but he passed people and crowds getting this far….

We work hard not to judge other parents, because we don’t want to be judged, but a disability isn’t a reason to walk around with a chip on your shoulder. I know how that feels, I’ve had my days where I was really bothered that others could just get into the car, run into Target, grab what they needed, then stop off for ice cream without flying shoes, stares and a meltdown on the ground because of those pesky buzzing lights. That isn’t everyone else’s problem though, and I had to examine my own motives. If they weren’t valid, I had to get myself in a better frame of mind. Autism isn’t a gift, but it’s a part of life we have to learn to deal with.

Autism requires education on others’ parts — understand that it’s not a choice to not tolerate those lights, to hate the sound of rain and not want someone in the chair next to you — and compassion is huge. Be thankful it’s not you and mind your business. Don’t be that person who starts to talk about the family, or worse yet, the kid. (Bad behavior is the parents’ fault, not the kid’s anyway, especially a kid with a disability.)

Being “that” mom for no real reason other than you don’t want to get up and lose your favorite seats…no, just no. Necessary treatment for autism, yes, of course. Special treatment for autism? No.

I’ve seen a lot of people through the years say “My son/daughter has autism” and expect Disney to open early, for the hair salon to take your child before anyone else that’s been waiting even though you just walked through the door, or for a restaurant to empty a specific table because that’s the only place your child will happily eat.

Life doesn’t work that way, and as much as we want to protect our children and give them some sense of normalcy, that’s not how the world works. We can’t fix every part of the environment, so let’s focus on what we can control.

We can be grateful for the opportunity to enter the theater first. We can call ahead and talk to the restaurant to ask if they can reserve a specific table or time. We can be kind when the waitress says that no, there are no round chicken nuggets on the menu. We can pick the first movie showing of the day so our child’s less overwhelmed. We can prepare them ahead of time, and remind them that if they don’t behave properly, they get two chances and we leave.

And when their behavior can’t be corrected and stay corrected to the point where it doesn’t disrupt others, we really leave.

It’s hard. We have to teach our kids how to behave, and we can’t do that at home. But we also have to remember that others are paying for their experiences, too, and they don’t need to put up with your child climbing over the back of the booth and kicking our heads, repeatedly, because your child doesn’t know how to sit. We don’t have to deal with your kid picking food off our plates while you giggle that they love every round food. “Sorry” doesn’t cut it when your little girl takes my son’s dessert OUT OF HIS HAND because she was having a rough day and she loves cupcakes.

Life works both ways, and eventually, our kids will be older. Some will always be with us, but even then, the world won’t empty  the theaters or a restaurant won’t run to the store to make round nuggets. They won’t turn down the music in a skating rink because your son can’t handle the noise. They won’t always give you the front row “because your son can’t stand having people in front of him.”

All true stories I have witnessed.

I’ve got stories, too, where I’ve had to apologize to people because my child turned off the lights in an office. (I quickly turned them back on.) He lined up empty seats in a therapist’s office and for some unknown reason, it bothered someone whose chair he didn’t touch. He asked a mom to ask her toddler to stop banging blocks; I quickly apologized and when she proceeded to berate my child about babies, I handed her a card about autism. My intention was not to embarrass her, but as I was standing there, apologizing, and my son was six, she should have talked to me, not my child. Her baby’s needs do not trump mine, AND we’re in a doctor’s waiting room, soo….

Life’s not easy for those with autism, but it’s also not a free pass to get what we want. We don’t want, or need, special treatment for autism. Our kids aren’t just “kids with autism” but “kids.” Plain kids. Life’s not fair to our kids, and I still get mad and sad and outraged over that, but I also know that I can’t go around boring everyone with autism talk and expecting everything to be changed just for my child.

Autism is a definition, not a person. Don’t let it define your child OR your life, or you’ll be missing out on valuable experiences for everyone. Love is sometimes saying “no,” even to kids with autism. Live, learn/educate, and grow.