Autism Watch: 2007

The beginning of awareness..

Posted on: September 19, 2007

For me, that officially started almost three years ago. My son’s pediatrician said he thought our son was PDD, or “somewhere on the autism spectrum, but I wouldn’t call it outright autism.” He sent us to a neurologist, where I went alone  — a lot of husbands aren’t on-board initially — where the neurologist did a long exam and sent me home with a piece of paper that said “childhood autism.” PDD wasn’t mentioned. The neuro pointed out some things I hadn’t even really thought about, like his lack of eye contact. Denial? Maybe, but autism had honestly never entered my mind until the pediatrician mentioned it. I was thinking sensory integration disorder at most. Autism threw me for a loop. He referred us to the Regional Center and the local school district. The school district was able to see us first, and they came to our home for an in-depth assessment. “Autistic tendencies,” across the board. He was placed in a special day class and given numerous other therapies to get him started. Then came the Regional Center intake process. Lots of papers and several appointments, observations, exams and tests later, “childhood autism.” Our doctor had initially said our son was considered “high functioning,” but that term never came up again. We’ve since learned it’s a real misnomer anyway, and we don’t use it anymore. Autism is autism — some children are more severely affected than others, but in the end, help for all of them is critical. A “high functioning” child can have a tantrum as bad as a severely functioning child and hurt himself just as badly, and scream bad words at people in the process, so the treatments should be as available. But they’re not. Lesson one in my autism awareness journey.

Getting help for your autistic child is difficult because no one really wants to be responsible. Medical providers need to be paid, but insurance doesn’t want to pay for things not medically proven. Schools only have so much stuff and so much time, so they want to focus on things that hinder the educational process. That leaves the parent with a whole lot of ‘in between’ requirements — social skills, behavioral help, physical therapies, etc. The list of available options is endless, but if your money supply ISN’T endless, the list of things you can actually do is pretty short.

Over a period of months, my husband and I worked together to get our son’s plan in place. Behavioral therapy eventually started at home, and insurance covered occupational therapy twice a week. Add that to the numerous school services we were given, and we were on our way. Little did we know that just because your son is diagnosed doesn’t mean that people who work with your child are going to be knowledgeable or even compassionate towards autism. We learned in an all too harsh (and expensive) way that ignorant people still abound, and if someone wants to view your child as an uncontrolled brat because their view of autism means sitting in a corner, banging their head and repeating a word over and over, you can’t necessarily make them aware of the actual reality of autism.

Autism’s a spectrum. If you meet one autistic person, you’ve met one autistic person. You’ll hear that all over the net in regards to autism. Every person with autism is different. They all display their ‘symptoms’ in varying degrees and in varying ways. Each day for each child is different, and you never quite know what that day will bring. Once you get that in your head, true awareness can take place. And with awareness, you see your child, not a diagnosis. You see a screaming child in the store and you don’t automatically assume “what a brat,” but instead give the mom her space and want to tell the staring people walking by to mind their business, and you start handing out the autism awareness cards. Until autism’s a thing of the past, acceptance and tolerance has got to pervade the world of the judgmental, and it won’t happen if we all shake our heads at the insanity of it and walk away. It’s up to us, those dealing with it daily. It’s not fair, and we have the least amount of time to do it, out of anyone, but someone’s got to do it. I’ve been doing it all along this last two years and nine months, and often without realizing it. My child deserves it, and it’s just part of making his world a better place, almost as important as helping him to learn how to function comfortably and happily. I’m not out to change him, but to help him get along, and to enjoy life instead of getting so mad, and protecting him from others who can control themselves but don’t is all a part of the process.

What have you done for autism awareness today?

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