Having a child with a disability is difficult. They do things differently. They are in a world that is not built for them. It’s heartbreaking having to constantly adjust E’s behavior. I feel like I am telling him that what he is, is not okay. It’s a constant struggle. When people react unkindly it’s also hard watching A witness this. She’s so protective of her brother. Especially seeing it coming from an adult. It’s scary for her.

Living this on the daily, I try to be above it and move on. Sometimes though, it just makes me mad.

I’m going to share a story of something that happened recently. I write this, yes, to vent, but mostly to educate. I choose to believe that the interactions that we have with people are due to ignorance versus just being a bad person.

Travel brings out the very worst and the very best in people. I have had people who I want to saint after my trip because they were so amazing. Then, there are the others. The ones that make things miserable for you.

We very recently travelled to Spain. E has flown a lot, and many of those flights are 5-6 hours. I was not too worried about him being on the plane for this trip. He gets grumpy but, for the most part, he is manageable.

Our second flight was 6.5 hours long. Pretty quickly after boarding, a baby started to cry. Then another. Then another. I usually put Ethan’s headphones on and he is able to tune it out and be okay. This time, he was feeling a little more stressed, and he was not able to tune it out. He is very sensitive to sound and has a very hard time with that frequency.

We have certain things that we do to help calm him down, but it’s not perfect. He will still scream out. For the first two hours of the flight, there was a baby crying almost the whole time. It was very stressful to E, but I was proud of him. He was able be redirected and calm himself. Every once in awhile though, he would still break and cry and I would talk with him and get him calmed.

Because speech does not come as easily to him, in times of stress or strong emotions, sounds come first. Grunting, crying, etc. Sounds more typical of a baby or small toddler.

Every time he would cry out, a few people around us would turn and stare. I tried to ignore it and just keep on helping him. After awhile, he was able to fall asleep for a few hours.

When he woke up he was very happy. He was giggling and making noises. Clapping his hands and just in general really happy. I was surprised that those same people were turning around and staring once more. I chose to once again ignore them, and did not try to muffle Ethan’s behavior. There were a few times he got too loud and I told him he needed to keep his voice down. I tell him it’s okay to be happy, but we have to be a little quieter with people.

Side note: I am a firm believer of not taking E places where he cannot reasonably exercise the behavior needed and follow the rules. Like a movie. He cannot sit still and he would get up and run around and that would disrupt the people. Not every activity is one that E can do. So with that said, E was making noises, but he was no louder than anybody else on the plane. People were talking about the same volume, animated in conversation, the babies were crying louder. Back to my story.

When the plane started its descent, the different babies on the plane started up again. Landing is hard on their ears and it’s pretty typical. All of the babies crying at once set Ethan off and he started to cry too and cover his ears. Once in awhile he would shout out louder, and I would tell him to calm down. It was not continuous crying non stop, but he was clearly having a hard time. About 10 minutes into the descent, before the flight attendants had to sit down, one of them came over to me.

‘You need to keep him quiet’, she told me. ‘He is disrupting everyone on this flight.’ ‘He’s autistic,’ I said, ‘he doesn’t understand.’

She rolled her eyes and moved on. A cross between embarrassed and annoyed.

I would understand her being frustrated if E was out of control the entire time. If I were ignoring him while he was screaming. If he was excessively louder than the others. None of these were the case.

Autism is often called a silent disability because it’s not as obvious from the outside. If the same behavior were coming from a child with Downs Syndrome, there would be more tolerance because his difference would be more obvious.

On the flight when E was sleeping, I was watching the movie, ‘ I am Sam’. A popular movie. A heartwarming movie. I saw so much of E in Sam. So many of the behaviors that Sam exhibited when he was excited, E had on the plane. People love to see these movies, but when they see somebody like Sam or E out in the real world, there is no tolerance. There are just so many assumptions. Even when people know he is autistic. ‘I still must be spoiling him, or not properly disciplining him. I am not dealing with his behavior correctly.’ Because he can literally understand the words coming out of my mouth, he must just be pulling one over on me and not listening. All of those assumptions are untrue. E’s whine might come off as the sound of a child who is angry or spoiled and wants their own way, but it’s not. He cannot express himself properly and that is his first go to. He lives in a world where he is constantly overstimulated. His brain works differently than the typical functioning person.

I don’t expect everyone to understand autism. I don’t even expect everyone to be comfortable with it. But I do expect tolerance. I do expect that you stick to your own business and don’t criticize what you can’t understand. It is hard enough without all of this input.

I don’t understand how people think that they can discipline the autism out of my son. Like them telling him to listen, will magically make all of his struggles go away. Like I have never told him to listen.

When you see someone acting strangely, spoiled, or whatever, do not assume that you know the whole story. Even if you do know some of the story, unless you are living it, you can’t understand it. This is true of so many things, not just autism.

Autism is not what you see on tv only. It’s not just quirky with savant like skills. It is a very real disability that affects so many other things. For E this includes, basic motor skills, drooling and spitting, aversions to clothing, inability to regulate emotions or basic executive functions. Anxiety, ocd, adhd. He also has seizures, very common with autism. Partials. When he comes out of them, often times he’s scared. He just was stuck in this seizure unable to move so he’ll cry out. He’s not just being bratty.

I love my son fiercely and will protect him at all costs. Spread awareness. If you’re with someone who is making judgements, speak up. If you find yourself making assumptions, remember there’s always more to the story. The child might seem bratty but maybe just maybe, there’s more you don’t understand.