JOHN'S WORLD OF AUTISM

I guess in order to understand what it really means to be autistic, you have to be a parent or caregiver to an autistic person, or so it seems. These days it seems that everyone with an opinion professes to be an expert in the field of autism. The medical community certainly has no empathy towards autism. They expend enormous resources to refute any credible and reasonable explanation. That's about 10% political pressure from drug and insurance companies, and the other 90% is they don't have the first clue. It's not hard to be overtaken with the political pressures when you don't know nor care to begin with.

Well I'm not an autism expert, and I would never wish autism on anyone, nor wish it on their children and loved one. But I wish it were possible that those who try so hard to ignore us, had to deal with our problems, say for a month. Let's examine what those problems are, where do we begin? Oh, I know, your dual income family is now a single income family. One of you is staying home with that child because you don't drop these kids at the day care, no sir! I guess IF you're rich enough to afford a full time nurse, then maybe both parents can work.

What else? They require constant attention. Most autistics cannot talk, and their means to communicate is rudimentary at best. Few autistics are high functioning like RainMan; you have to learn how to communicate with your autistic child by understanding what they want or need. Yes, exactly.

Then there are the rituals. The bed wetting, the stomping, the stimming, the obsession with certain foods, the clothes changing, and the head banging. And oh did I mention the constant worry of not knowing when they have to go to the bathroom. Oh they know, but do you? And when they do you better get to a facility, and fast. They don't know the saying "hold it". So on those long trips, or even short trips in the vehicle, or in the mall, or where ever you go, you have to have a plan in case your autistic person has a wardrobe malfunction.

As for the stimming, my son, John, likes to stim on strings. So he'll take the shoe laces, not extras we may have laying around, but remove them out of our shoes.

And did I mention the wreck they'll make of your house? Autistics have a high pain threshold. When they become angry, they are difficult to contain, especially as they go through the teen years and into adulthood. I hope you like repairing drywall, floors, and doors. Your house better be solid in every detail, because autistics will find it's weakness and break it. My 200lb son jumps with his full weight and stomps. I've had to reinforce my single layer plywood floors with an additional layer and add hardwood floors. The walls, well, they're in a constant state of flux.

Not to mention the bathrooms, he's broken the bottom of the shower unit in both bathrooms. He's broken the sinks. He's broken the toilet seat and toilets.

He dented the side of my vehicle - with his head. A vehicle we used to have he broke the seats. He's broken the school bus windows. Fortunately, he's never broken them in my vehicles, but he's tried.

I can't count the number of times we awoke to find he has cleaned out the cupboards, refrigerator, and freezer, thrown it all away. And the all nighters, and I don't mean partying, I mean staying up all night because John is up all night, because he goes into his rituals, like throwing everything away, or changing his clothes, or wetting the bed, or God knows what else.

There's the monetary costs, for everything. Yes, John gets SSI, but it's but a fraction of the real costs to care for him. It's not just the daily costs, it's the recovery of what he's done, it's the lost value to my home and other property. John has graduated, but my wife or I (usually my wife) was constantly going back and forth to John's school. Even in Maryland, in a Level 5 setting, they weren't equipped to handle all the problems.

The clothes changing ritual is exacerbated with wetting the clothes first, so the clothes have to be washed. Laundry, for a family, is a losing battle always. It's not unusual for John to dirty all of his clothes in a day or two. I'm not going into how we've tried to stop him. The cost for electricity and water, and the time to do it is immeasurable. Are you feeling the pain yet?

The cost of my wife not being able to work all these years. The cost to my career, for having to leave on a moments notice. I was in the military, I did not take the hard assignments, I did not take the unaccompanied tours because I felt it was important to keep the family together, and it was important for me to be there. The stress alone caused me physical problem which only compound themselves in the military. Over time it cost me promotions, and eventually I wound up getting much less in my retirement pay. It costs me at every job I have,  because there are constant needs and ever changing circumstances.

While I don't expect the average person or even our families to personally know the burdens, I do expect those eating my tax dollars to have a firm grasp of the true realities of autism, and act in my best interest. The fact that parents are taking matters into their own hands by not vaccinating their children is a tell-tale sign they have lost confidence in the system. Those eating my tax dollars skipped class the day they taught the Constitution, the part on "Promote the General Welfare".

There's much more that could be said, but is too private or personal. Here's the thing, John wasn't born like that. He grew up normal until he was about 2 years old, and he slowly drifted away from us. My son used to answer the phone. He could speak. So maybe the reality is that he's not autistic, but suffering from mercury poisoning. The reality is the American Academy of Pediatrics (AAP), the Centers for Disease Control, and the American Medical Association (AMA) cannot acknowledge, even the slightest connection between autism and vaccines. The insurance and drug companies would go bankrupt from the lawsuits. It is precisely why a last minute provision was attached to the Patriot Act protecting the pharmaceutical companies from being sued by the families of kids with Autism.  And while President Bush enacted the Combating Autism Act , the fact the provision was added to the Patriot Act speaks volumes. Chiefly, it says the government knows that vaccines cause autism, but that's just tough, and we're not gonna get any money out of the sorry (people) that caused it. That's a reality check for ya!

About the Author