I'm so glad to see this thread. My oldest has autism, and I wrote this for my blog for Autism Awareness Day:
Alright, time to get real with you guys.
So, most of you may know (but some probably don't) that my oldest, Skyler, has Autism. Autism Spectrum Disorder has become more and more common in today's society, with a staggering 1 in 68 people on the spectrum. Whether these kids are on the lighter side of the spectrum (i.e. Aspergers) or more severe (like my little boy), it's likely that you know someone who has been affected by ASD.
Autism manifests itself differently for everyone with some common symptoms. People with autism may view the world differently than others. They may become fixated on certain subjects in school. They may become easily overstimulated in loud environments, bright lights or changes to their routine. They may deal with stress, happiness, anger, irritation, sadness though stimming (adding physical pressure to distract themselves). This is why you might see kids with autism flap their hands, hold their hands up to their ears and hum, or tiptoe to put their entire weight on one concentrated place.
It was these stimming behaviors that first brought to our minds that something might be different about our little boy. At a year and a half, he wasnt communicating at the same level as his cousin of the same age. He spent more time on his toes than flat on his feet. He would get excited and flap away. My wife and I were in denial that anything was wrong, but eventually we couldnt ignore it any more. I will never forget that phone call form my wife after the appointment. I was in a training for work and couldnt be there, but my heart immediately dropped.
Scenes from Rain Man came to mind in a whole different light, and I was scared. Scared for the future of my little boy. Scared for the struggles that he would have. Scared that I am not good enough to be everything that he needs. My wife and I would pray for understanding in tears, for some modicum of comfort. Nearly 5 years later, so much has changed for our family. While times can still be tough, every day our little boy is teaching us new things.
Skyler has so many struggles every day. Skyler is only semi-verbal and has a rough time communicating a lot of the time. Most of what he says is echolalia: repetition of things that he has heard from other sources. Imagine Bumblebee from the Transformers who uses radio stations, sound bytes, and songs to convey what he feels. My little Skyler is the same way. He will quote tv shows, movies, or my wife and I in order to get his points across.
Everyday things can be tough for Sky. He has a very limited diet that can change simply based on the look or texture of something. A simple change like the discontinuation of his favorite chicken nuggets becomes a life altering event. Meal time can often become stressful, leading to frustration for both Skyler and my wife and I. We can see that he wants to tell us whats wrong with that piece of pizza that he ate just fine a week before, but he cant, and we cant let him go hungry.
Imagine for yourself what it must feel like to be him: at times trapped in your own mind. Its a harrowing thought, and I know that I would not be able to personally go through what he deals with on a daily basis. Luckily Skyler is stronger than I am. Despite his communication issues, he taught himself how to read at 3. No, seriously, 3! He reads much more quickly than kids twice his age and wows us every day with his amazing memory skills. This is one smart little guy.
As my wife and I look at each day, we know that there will be struggles. We know that we wont be able to understand everything that is happening with our little boy, but we are learning little by little. Slowly we feel more of that comfort that we prayed for so long ago. Slowly his future comes into play, and we see his mind developing more and more.
Heres the thing about Autism: you cant rush to understand everything all at once. You have to get down to their level to try to see the world from their point of view. Which means that sometimes you dont run. You tiptoe.
