The Vital Parts of Autism Awareness Month

I often wonder how many people actually care about these awareness campaigns. I don’t mean that pessimistically. There are many wonderful people that try to educate others on many topics.

However, as realists, most people don’t care unless they are somehow connected to the illness or disability, and there are so many of them. October is breast cancer awareness month. February is wear red for heart disease in women. June is Alzheimer’s and Brain Awareness Month. Literally, every time I’m driving I see a bumper sticker for some kind of awareness.

I think there have been great strides in all of this! People are certainly aware of Autism because of all the great campaigns that get the word out there. I think I can assume that most people have heard of autism by now.

April is Autism Awareness Month. 1 in 68 children have Autism and in New Jersey, where I live, the ratio is higher, 1 in 41. If I was a betting man (like my husband) the odds of you knowing someone with autism is pretty high.

Truth be told, I only knew about autism because I’m a nurse, and by no means was I an expert. My husband on the other hand knew nothing about it. Why would he? He didn’t know anyone with autism, and I don’t think in his spare time he would have just researched autism. He has heard of autism, but I don’t think he could have given a definition to you 5 years ago. I don’t think he was ignorant either, but that’s just my point: Do you really care unless you are affected?

Now, we are engulfed in it. As a family we need to educate ourselves to better care for our son Zachary and so we can educate others.

I often still get asked what is autism. I think sometimes it often appears more complicated.

Here is a really simple definition: Autism is a neurodevelopmental disability that affects how a person communicates with, and relates to other people. It also affects how they make sense of the world around them. Also, combined with rigid, repetitive behaviors. It is a spectrum condition. This means that while all people with autism share certain difficulties, their condition will affect them in different ways.

So, now that you are aware of autism, will you accept autism? Awareness and acceptance need to go hand in hand. Just because you are aware doesn’t mean you accept.

Even though lots of people know that Zachary has autism I certainly shouldn’t feel like I need to tell random people at the grocery store that he has autism, and is nonverbal when he doesn’t answer how old he is to strangers. Then I feel shamed into apologizing. If you were aware, then you would know that Zachary, and others with autism sometimes can’t communicate the way other neurotypical people do.

Zachary isn’t ignoring you, being rude, or playing shy (which we get often because he still so young) If there was acceptance I wouldn’t feel the need to apologize to everyone all the time.

In all this autism awareness, do accept that some kids and adults on the spectrum stim and that neurotypical people can stim too? That hand flapping that Zachary does, or rocking back and forth that another child with autism does, is the same as you and I tapping our leg or twirling our hair. Stimming stands for self stimulatory behavior. It can have positive functions like sensory stimulations and expression of emotions.

Are you ever so bored during a meeting and excuse yourself to the bathroom not because you need to use the bathroom but because you need to get up and walk. Your body is craving sensory input and it’s like breathing sometimes for Zachary. He needs that input like he needs air. If everyone does it, and everyone does it differently, then why are there so many puzzling onlookers when my son is flapping?

Again, my constant need to explain and apologize to the world because of the lack of acceptance

We have spent countless hours teaching my son about high fives and how to give a high five. This is one of the first social interactions that all children learn. At least once a day, Zachary has been asked to give a high five by someone, a stranger, a family member, or from another child at school. If you really break down all the steps of a high five you can see how complicated it may be.

First you verbalize to Zachary, “Give me a high five!” Now, my son has to figure out what you just said. Then you usually put your hand up in front of their face. This is a non-verbal gesture, and you have come into my son’s personal space. Zachary may have to walk a little a closer to you now, and coordinate his hand to touch your hand. Its a process that I think most people take for granted.

My son is learning every day simple skills that may come easily to other kids. He works really hard between school, therapies, and doctor appointments. I don’t think I would even be capable of doing half of his schedule at his age. My husband and I don’t place these demands on him to make him “normal.” We want Zachary to thrive in a world that says it will adapt to him, but doesn’t.

I want the world to see that there is so much more to Zachary than autism. I can’t stress enough that autism is neurologically based, which means he just thinks differently than the typical person. If you can’t get passed the autism then you are going to miss out on the greatness in this child. He is so much more than just autism, and capable of so much as well.

I want people to see Zachary the way my neurotypical 2 year old, Landon, sees him. Landon loves to look through my phone and look at pictures and videos of himself and Zachary. He especially loves the videos of the two of them playing together, which we don’t have many of. Not because I don’t take any videos of them, but because it is rare that Zachary wants to play and interact with his brother. Landon will study those videos and try to do the same play that he did last time with Zachary, thinking that maybe Zachary will engage again with him. Sometimes it works, and sometimes it doesn’t. All I know is that I’m grateful for Landon’s persistence.

Everyday, Landon waits for Zachary to come home from school. The bus stops in front of our house and I walk out my front door to get him. I turn around with Zachary in hand, and Landon is waiting at the door, jumping up down, smiling. He does this regardless if Zachary doesn’t reciprocate that same joy all the time.

Landon is always patiently waiting and learning about Zachary. He knows how fun Zachary is, and what his favorite toys are. Landon loves Zachary’s laugh as much as my husband and I do. He just sees Zachary as his brother. He doesn’t see autism, hand flapping, or lack of verbal communication. Landon just sees Zachary as another boy he wants to play dinosaurs with.

Our family knows that we don’t need verbal communication to know if you are loved, and most people know when someone is happy or sad without ever saying a word. Our family is really no different than others. The world needs a little more patience, empathy, and acceptance.

It is a vital part of autism awareness and it needs to start now.

Written by, Melissa Owsiany 

Melissa is a nurse, wife and mom to two wonderful boys Zachary, who has autism, and Landon.

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