Real Autism Awareness: My Experience

Last week, I shared why I felt it was important for me to talk about the topic of Autism. This week, I’d like to give you a little background as to why this topic is near and dear to my heart. It’s personal for me because my son is on the spectrum and because I was entirely clueless for the first 17 years of his life!

My inability to understand him caused him great frustration and I wish I had known earlier so that I could have helped him. When I told him that this topic was on my heart to write about, I asked him if he would be okay with me sharing a bit of his story. Not only did he agree, but he was quite insistent that I share details so that other moms would have more information. With that in mind, I pray this series will help other moms who may not have any idea that their child is dealing with this.

So, a little background:

My son, Chris, was always an incredibly bright boy. He taught himself to read by using Jump Start Third Grade on the computer when he was only three years old. He spent six hours a day on that computer standing up so he could reach the keyboard. I had told him that this computer game was too advanced for him and that I didn’t have time right now to answer all his questions. So, he figured it all out on his own.

One day, I came downstairs to find he had the English subtitles on the TV. Thinking he had messed it up, I “fixed” it only to find them on again later. This went on for about two weeks until I finally asked him if he was doing this on purpose. He said he was learning to read. A while later, I came downstairs to find the Spanish subtitles on. I never again told him he couldn’t do something because it was too advanced!

Chris was always impressing adults. He played chess with adults when he was about 9. Once, at a party, I had a series of moms seek me out to tell me how articulate he was on a variety of topics. He had mastered just about every hand held and computer game he got his hands on.

On the flip side, there were things that he did or didn’t do that had us scratching our heads. While he was able to hyper focus on the details of a game, he was completely unaware of a big truck headed right for him in a parking lot. He could recite Sponge Bob episodes word for word having only heard them ONCE, but he couldn’t remember to bring down the book I asked him to get from his room. He’d go up to his room, immediately see something that he wondered about and I’d find him up there playing with the carpet fibers.

At two, Chris hated the feel of grass on his feet, loud noises, long pants, buttons on his shirts, and would only eat one food for breakfast, lunch, and dinner…until that food was replaced by another food. At three or four, he stopped speaking for eight months resorting to grunts and pointing. I was just about to consult his doctor when I turned the corner and found him talking to himself and looking at me as if the jig was up! At five or six, I still had to sit beside him when he was eating to remind him to chew and swallow so he didn’t get distracted by the fly on the wall and choke when he took a breath to ask me how it could stick on the wall like that. At about 10 or 12, he had no idea how to answer certain questions that seemed to be fairly obvious.

“What grade are you in?” was met with a long blank stare. Later, we found out it was because he had no idea how that was meant. The grade he was supposed to be in if he were in public school? The grade assigned to most of his homeschool courses? The grade of his highest course? He was in higher math and science courses in junior high.

While his oral communication skills were quite advanced, he wrote essays as if he were a first grader. His handwriting was awful. This didn’t seem consistent with other things I knew about him so I had a thought. I asked him to type his essay over. Same topic. Same prompt. Night and day difference! Not only was his sentence structure and grammar better, but his thoughts flowed and it was quite a persuasive essay! More on this at a later time.

By the time Chris was 17, we realized he was having trouble in two of his courses. At the time, I didn’t understand why he didn’t just tell me he was having trouble. I didn’t understand how to help him. He could memorize a ton of information, but couldn’t figure out how to organize his notes or focus or be able to pick out which items where important to study and which parts of the book were less likely to be on the test. Also he couldn’t manage to focus if the test was much longer than an hour.

This time my internet search found much more than just Sensory Integration Dysfunction. I began to suspect that he might have Autism. That lead me on a race against time to try to find someone, anyone, who would take on a child of 17! Most therapists took kids from four to about 12. I must have called every number I found in a tri state area who might help until I finally found someone who got him to a doctor who finally diagnosed him with what most people would know as Asberger’s.

The reason it was a race against time was that I was told that in order to qualify for accommodations for the SATs and at a university, he had to be diagnosed by the time he was 18. It usually takes 1.5 years to get in to a doctor who could do the diagnosis, but we were rushed through and he ended up being diagnosed just a few days shy of his 18th birthday.

This is, of course, not his whole story. I just wanted to give you some background so you know where I’m coming from. Had I known that he was on the spectrum when he was young, he wouldn’t have spent all those years finding work-arounds for his focusing and organizational issues where he blamed himself and thought it was all his fault. If I had only known earlier, I could have saved him the frustration of trying to figure out what people meant by the seemingly easy questions he was asked instead of feeling alone, like nobody understood him.

I’ll share some more about him in later posts, but for now, I’d like to say how incredible my son is that he was able to figure out how to do so well for so long with such struggles only he knew about at the time.

If you have a child you are desperately trying to figure out, please stay tuned to this blog for more on Autism. And please forward this blog post to all your social media accounts. I’d love some help getting the word out!

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