Today, I meticulously worked with a needle dipped in paint to try to turn a regular Lego minifigure into Two Face. You know, from Batman. I worked on that dumb thing all day. I proudly presented my finished work to my son, sure he would be overwhelmed with my genius artwork. He stared at it blankly for a full 5 seconds then very slowly began to scrunch his cute little nose and then furrowed his brow. “Well it’s not good but I’ll play with it. Thanks, Momma!” Really, kid? Did he really just say that? A little part of me died. I wish I could say I was kidding but it felt just like it did in middle school when someone made fun of my shoes. You see, my son has no filter. It’s kind of his thing. When our realtor (who is also a dear friend that drove all the way from Indiana to Texas for us) was at our house, my son entered the room and broadcasted in his most polite voice, “You said he was coming over to talk about the house. You never said he would be here for 4 hours. Is he about to leave?” He’s a straight shooter. He tells it like it is without regard to your feelings because in his mind, he is just pointing out facts. This is something that we will obviously have to work on. The boy does not have a future in customer service…or with the public (bless his heart).
We are desperately trying to learn more about autism so we can meet him where he is and give grace when we can. But along this road, I have learned that there are a lot of misconceptions about what autism really is. There are tons of great books out there on the subject. In short, it is a huge steaming pile of frustration with a side of guilt for not having all the answers. Maybe it would be easier if I tell you what autism isn’t….
- A terminal illness. For the love of sweet baby Jesus in a manger. I can’t even count how may people have responded to finding out my son had autism with a look of utter anguish, followed by, “oh my goodness, I am so sorry” (looks slowly into distance with head slightly shaking at the injustice). He’s not dying. He is actually very healthy. His reality is just a little different than yours. Not bad, just different.
- A bad word. Even his occupational therapist whispers the word like it’s the f bomb. Dudes! We are never going to foster acceptance if we continue treating this like a bad word. Autism is not bad, just different.
- In need of a cure. Friends!! I do not want to change my son. I just want what the rest of you want for your children, to be happy. His brain is inspiring. He can do things with his autistic brain that leaves my neurotypical brain in the dust. It takes all kinds to run this world. I’m a nurse. It’s my passion. My son? He said he wants to make video games and be a paleontologist and an astronaut that lives in space. I believe he can. Not bad, just different.
- Always fair. I get it. Life’s not fair. Autism and OCD often times go hand in hand. Please hear me when I say this is definitely not the case for all children. The most common phrase I’ve heard since this diagnosis is, “If you’ve met one person with autism, you’ve met one person with autism.” But for my little one, he has had to endure more fears and anxieties than any 6 year old should have to endure. The constant need (not desire) to have things a certain way, are overwhelming for me, but gut wrenching for him. Despite his distress, he is brave. He describes his brain in terms of shakiness. He says sometimes it shakes violently out of control and sometimes it just sways. But it always “feels like it’s on a roller coaster and there are lots of sharp turns and I’m always moving.” He says things like, “this world isn’t made for me, momma. Other people understand what’s going on and I don’t. People get mad at things or laugh at things and I don’t know why. Sometimes I say things but you hear something else.” In some ways he is far beyond his years. Not bad, just different.
- A stereotype. My husband has been in school since I met him 15 years ago. That is only a slight exaggeration. He has also changed his major a minimum of 1,205 times (truth). Right now he is trying to finish an english degree. Because that helps you as a financial advisor (????). But I digress. In one of his classes, he wrote a poem about his two sons. Everyone in the class had to respond. One lady said, “Oh your son has autism? Those are some of the sweetest kids in the world.” Nope. That’s not really their method of operation. If in doubt, see first paragraph……
All I want is acceptance. Just.The.Way.He.Is. Some of you may see the world clearly, others through rose colored glasses. My son’s glasses are more like drunk goggles (google it, it’s a thing). But being that awesome despite his diagnosis is hard to do. And he does so beautifully.