The “A” Word

On my 13th birthday, my family was hit with life-altering news.

My three year old brother was diagnosed with autism.

At the time (and, in some regards, still today), no one really understood what autism meant. It was this…sickness, this seeming disease that had suddenly begun being diagnosed all over the Western world. Still, no one really knew what it meant. Your average person may have gathered their best information about autism from the movie Rain Man. A person cowering in a corner refusing to be touched – ah, that’s autism.

I remember my parents buying up every single book on autism they could find. They read for hours on end gathering up information on what was wrong with their son, my brother.

We realized there had been signs, of course.

My brother had started speaking both Mongolian and English at a very young age, but at a certain point, he just stopped speaking altogether. He started using sounds and motions instead. We thought it was odd, but didn’t worry too much. Kids are weird, right?

Then he began being fixated on things. He used to line up our VHS tapes on the floor of the living room. They would be side by side to each other, perfectly aligned. If his older brother or I ever accidentally (or purposefully) kicked one out of the line, we would have a screaming toddler on our hands.

He didn’t really make eye contact. You would hold him in your lap and he would make eye contact for a brief moment, but then break it off. This went hand-in-hand with his hyperactivity. As soon as he could walk, he could run. One of his favorite things to do was head-butt you in the face. My mum just called him our little billy goat.

But here was the part that threw us off:

He could love. He could show affection. He could hug you and kiss you and love you. He was absolutely adorable. Once you got to really know him, you couldn’t help but love him.

When he was diagnosed with autism, our family was stunned.

The diagnosis came during the world’s height of confusion surrounding autism. It was being diagnosed left and right, but there were no answers to everyone’s questions.

Is my kid going to be alright? Are vaccinations doing this to my child? Is it biological? Is it my fault? Did I do something wrong? Should I have held my baby more? Endless questions with no answers.

Because there were no answers, that meant there had to be great change.

My family made the huge move from Mongolia to Seattle, Washington where my brother could be put in intervention. This intervention would give him the speech therapy he needed as well as help him with his social behavior. We had been told that this was the ideal scenario because we had caught the autism when he was young.

“Caught it.” Sounds a little like catching cancer in the early stages, doesn’t it?

I never once blamed my brother for this move. I felt so incredibly protective of him. I wanted him to get the best help he could. I wished he could comprehend how happy I was that we could do something for him.

A year or so later, it was confirmed that he was considered “high-functioning” on the autism scale. This meant, he would probably be perfectly normal except for a few quirks here and there. With a sigh of relief, our family pressed on.

Over time, we began to understand autism a little more. We began to realize it wasn’t a disease. It wasn’t something that required fear. It was just a unique part of my brother that had a name. The ways people used autism started to drive me nuts. It bothered me so much that people thought there was something actually wrong with him.

People would say, “I’m so sorry your brother is sick,” or “I hope your brother gets better!”

They didn’t understand. The world simply cannot understand or respond to autism the way it should. My brother was never sick. He wasn’t going to “get better”. He was already perfect. Autism was never this horrible handicap from which he would never recover. It was something he was going to have his whole life long that would make him more interesting than I would ever be. It would make him be able to focus on things and truly learn them far more than I ever would. He wasn’t sick. He was just who he was.

My brother is now almost 14 years old. He’s brilliant and witty. He’s funny. He loves to play computer games, watch TV, annoy his siblings, and tell you something amusing that happened to him recently. I might be biased, but he is an amazing kid. And doesn’t he sound pretty normal?

Sure, he’s quirky. Sure, he has more difficulty making friends. But, he has a million other things he is great at doing. Autism doesn’t make diseased children. Autism, and Aspergers, make unique children who grow up to be interesting, and wonderful adults.

I know not every child with autism turns out to be high-functioning, like my brother. However, I would be willing to bet that every parent of an autistic child just wants their child to be accepted and loved by the world. I am incredibly sure that they want the world to see their child for the gifted, unique person that they are.

We still don’t really know what causes autism. We don’t know if it can be prevented. And yet, people keep searching for ways to avoid it. In fear of this “horrible monster” they try all sorts of things. No vaccinations. Restricted diets. But, why? Why do we keep searching, breaking our backs, for a way to avoid autism? To avoid this big, hulking, terrible “monster”? This “disease”?

We don’t need to live in fear of the “monster.” We don’t. You’re fearing something that is just a part of what may make someone who they are. We are creating this idea that autism is ugly. That autism must, at all costs, be avoided. We are creating people who believe that people with autism are flawed. It is this thinking that is causing children and people to not accept those who are different from them.

I understand you want the best for your child. Truly, I do. But, please stop fearing something that can be beautiful. Stop spreading a fear of a “disease” that simply isn’t a “disease.” I want my brother growing up in this world knowing he is special – not weird and unwanted.

The fact is my brother thinks of autism as his superpower. And, honestly, I do, too.

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