Wednesday, May 12, 2010

Every single day of my life people ask me what autism is.

And that shocks me.

1 in 110 kids in the United States alone are being diagnosed with autism. If you don't know what it means...hang on to your hat. Because autism is about to become "the new norm."

Whatever "the norm" means.

Here's what our friends at Wikipedia have to say about it.

"Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old.[1] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.[2] The two other autism spectrum disorders (ASD) are Asperger syndrome, which lacks delays in cognitive development and language, and PDD-NOS, diagnosed when full criteria for the other two disorders are not met."

Autism Society of America says, "Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today."

And here's what Autism Speaks says about it. "Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – NotOtherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders."

OK phew. Here's my definition. I mean, I live with it every day of my life, so I get to throw in my 2 cents, right? I mean, I'm going to anyway so just agree.

I'm one of "those parents" who falls into the "referring to autism as a spectrum disorder." What does that mean? Well, I can give you a long definition but here's how I visualize it in my mind.

Maybe it will help you.

To say that autism is a SPECTRUM disorder is to say that there's this "band" if you shown above. No two cases of autism look alike. Period. Just as every single human being is different, every single human being with autism looks different. This band starts at one and probably goes to 10 billion.... and every single number in between.

If you're at a 1 or maybe even somewhere between 1 and 1,000, you have what some people want to call Asperger's. Now my humble opinion is this: Asperger's is autism. Some people aren't going to like me saying that. It's ok. Some people don't care for the word, "autism" and they want to call it something else. That's fine...rock it out. I'm of the opinion that Asperger's Syndrome is a high functioning form of autism. I'm not the only one who thinks so, either. My friend Temple Grandin agrees, too. But I digress. My point is, that whether or not you call it autism or Aspergers or anything else, you're on the "high functioning" end of the band.

"High functioning" means just that. You function at a high level. You're doing pretty well. You may have some quirks. You may have some transitioning issues. More than likely you've got some sensory stuff going on.


I think I just described half of the people in the world? Or maybe all?
As Temple Grandin so aptly put it, "silicone valley wouldn't exists without Asperger's."

But I'm getting ahead of myself. What is a "sensory issue?" Well, you know what your senses are, right? Well if you have "sensory processing disorder" or "sensory issues" one, more, or ALL of your senses don't function.... typically. For example....if you have issues with your sense of sound, a very small noise may actually be PAINFUL for you. When Luke was younger, sometimes his therapist would break out the game ELEFUN. The sound of the fan that makes the butterflies come out would send Luke into hyperspace. I had NO IDEA that sound was probably causing him pain. And if your sense of sight is not "typical" it's possible that fluorescent lighting causes you PAIN or gives you headaches or simply bugs the crap out of you! Let's say you're trying to do a simple activity like getting a haircut. And the sound of the scissors opening and closing are literally causing you pain. Those are just a few simple get the idea.

Now, if you're a little deeper into that band, say maybe 1,001-5,000 you have everything you had between 1 and 1,000 and then some. Maybe you have the same set of issues but they are more pronounced. They are STRONGER...they are a deeper shade of blue. They are more ingrained. The pain is that much more severe. Your issues are that much more severe. I'm guessing that if you fall somewhere in that range, you've got some communication stuff going on too.

Now let me digress here for a moment. Those of us who are "typical" and in relationships like say.... a marriage may be able to feel me on this. Not only am I a "typically" developing adult (ha ha) but I actually MAJORED in communication in college. I have a DEGREE in the subject. My husband, pretty smart guy. And yet, after 13 years of being together... half of the time, our communication with each other SUCKS.

So can you IMAGINE, can you even WRAP YOUR MIND around NOT being a "typical" communicator? How in the SAM HELL are you EVER supposed to work through 1-1,000 if you can't communicate. Did you hear me? CAN'T. As in, it's not possible. As in... words do not exist. Period. It's not like being deaf. Deaf people can communicate. Autistic people, they CAN'T. Please feel free to take a moment here to google why not. If you find the answer, let me know.

So now, you're getting a haircut, and you have NO WAY of communicating that the sound of the scissors is causing you pain. NO WAY. You don't know how. The words aren't there. The signs aren't there. But the pain is. How do you break through?

Everyone still with me?

So now let's take ourselves to 5,001-10,000. It can be a pretty dark and scary place. Keep everything you've got from 1-1,000. And everything from 1,001 to 5,000. Now intensify it. A LOT.

I've yet to talk about the social aspect of autism. Sometimes, even now, it can be the hardest part for me to wrap my mind around. Here's the thing. When you have autism, at any part of the band, you may not be able to have social relationships.

You know, the things that as humans we crave more than anything else in the whole world?

I mean of course you have impaired social interactions. How can you have or even want social interactions if you can't communicate? I mean, I know sometimes I'm talking to people and thinking to myself, "WHY CAN'T YOU JUST UNDERSTAND ME?" But I can do things to make people understand me. I can explain it in a different way. I can use hand gestures, I can draw pictures, I can use my vocabulary to change the way I'm describing something. But if you have autism, you can't do any of those things.

Can you IMAGINE the frustration?

You know what? I think I'd just want to be left alone too.

The thing I think that is hard for people to understand or perhaps really grasp is the communication piece. How do you potty train someone who can't communicate? You can't. How do you teach someone how to speak? How do you teach someone to eat? How do you teach someone to self regulate? How do you teach someone to WANT social interaction? If you can't communicate, how do you even teach someone that passing a ball back and forth is fun? How do you console a child in pain if there's no way to communicate? How do you explain to someone, "The scissors aren't going to hurt you. Don't be afraid."

So think about this spectrum. Think about the RANGE that is on this spectrum. Think about 1 to 10,000. Think about the fact, that in 1991, the number of diagnosed cases of autism WAS 1 IN 10,000. AND NOW,

it's 1 in 110.

Welcome to the new norm.