Jesse James and His Adventure with Autism

Back in the early 80's not a lot of information was available on autism. When my son, Jesse, was born in 1984 there wasn't anything unusual about the birth other than he had a higher than normal bilirubin count. Nothing appeared out of the usual until the age of 2 when we noticed that he wasn't trying to communicate or make any audible sounds. He was an absolute charmer who smiled at everything.

We observed him daily as he became obsessed with "collecting" different objects. At first it was the orange metal lids from individual bottles of Tropicana orange juice and then it was empty brown plastic medicine bottles with childproof lids.

When he started preschool and those obsessions slowly phased out I thought maybe he liked to collect them to count. I quickly ruled that out when his teacher and I tried working with him on numbers and sorting concepts. Numbers had no concrete meaning to him nor did he have the desire to learn them. In fact I noticed that just seeing them on paper appeared only to confuse him more. There was always a question mark above his head. It was as if they had no value to him in his everyday scheme of things.

Daily life seemed to be a struggle for even at a young age and there had to be some kind of order to the chaos when it came to simple tasks. I couldn't just say: "You need to clean your room." He would become completely overwhelmed and go into overload. It had to be all laid out in steps that were easily comprehended. I went as far as creating a checklist and pinning it on the wall. I labeled bins to make things easier in sorting. The checklist went something like this:

1. Pick up clothes and put into clothes basket (most times this would be clean AND dirty clothes as he didn't have the skills to differentiate clean from dirty)
2. Put comic books in the Comic Book bin.
3. Put trash (anything you don't want to keep) in the wastebasket. This also was a hard concept for him to understand because he wanted to save everything.
4. Put shoes in the closet.

Jesse had a short attention span when it came to the "organized sorting" of his room. I had to always make sure that the list wasn't a long one or else nothing would get done. Life to Jesse WAS a "To Do" list.

Jesse is and never was a screamer nor does he get violently aggressive when things don't go his way. He is always passive, quiet, and deep in thought with his mind constantly in motion. He lives for his music and can tell you where an artist was 10 years ago and where they are now. Jesse's retention of info on subjects he is passionate about is amazing. He writes plays and stories so vivid they could keep you reading for hours. His sense of adventure is as if he has traveled the world through another's eyes.

You can view my page here about Jesse: SuperMom's Foggy Rock

With an estimated 425,000 autistic children in the United States the rise of autism is being referred to as "explosive". According to health statistics, Ohio has the most cases of autism at 23, 910% with cases in California worsening in 2004. These are the detailed facts in the U.S. alone:

• A new case of autism is diagnosed nearly EVERY 20 minutes.
• There are 24, 000 new cases diagnosed in the U.S. per year.
• The economic impact of autism is more than $90 billion and expected to more than double in the next decade.
• Autism receives LESS than 5% of the research funding of many less prevalent childhood diseases.
• There is no medical detection treatment or cure for autism.

There is no one answer to the increase. Genetics, childhood vaccines that contained thermosol and now the mitochondrial theory is being studied. Some say it's the increase in awareness and earlier diagnosis. Epidemiologists continue to research and hopefully before Jesse reaches 40 an answer will be found. We are hoping for some form of preventative measure to be studied more closely. We are hoping for more research. One thing is for certain. Autism is not going into hiding anymore and neither is this parent's fight to find a cure.