Autism Watch: 2007

Autism Awareness Begins At…

Posted on: March 31, 2011

Home?

Yes, but it needs to really kick some butt at school.

What a week. The next time someone tells me “you’re so lucky your child is verbal,” I may have to say “yes, I’ll remember that next time I’m in the office dealing with yet another punishment for his verbal behavior.”

Folks, high-functioning autism, mild autism, Asperger’s, whatever you want to call it, is no picnic. It’s not a party. Not a cakewalk. Definitely not easy street. De-de-definitely not. (Sorry, the Rainman movie came to mind.) It’s autism, but on a level where they’re given enough independence to get in trouble and where their words can be used against. It’s autism, with its meltdowns, self-injurious behavior, lack of friends and social skills, obsessions, repetitive behaviors, lack of proper communication, sensory processing disorder, and other behavior issues. Just because he speaks and can attend a regular class doesn’t mean the autism is any less ‘real’ than any other severity of autism. He still struggles daily to handle himself and get through the day. He isn’t being controlling to be sneaky or be a brat, but instead, it’s to have his environment be comfortable and the restricted, routine way that makes him most comfortable.

Despite all that, daily, our kids are lost. They fall through the cracks but there’s those with ‘real’ disabilities to deal with. They appear normal, whatever that word means, to those who aren’t educated specifically in the autism spectrum, with focus on the word spectrum. Their ‘normal’ appearance is so misleading that others forget and try to fit them in the same mold as the neurotypical kids are in, and then they complain because the results aren’t what they think they should be.

Try to put a square peg in a round hole, and you may be able to hammer it in, but it will look awkward. It won’t all fit and it will stand out. It may crack and there will be gaps. So just because you get it in there doesn’t mean you were successful in anything other than forcing something that wasn’t supposed to happen. That’s my son, forced into the role of a round peg when he’s definitely a square peg. Is a square peg wrong? Not at all, but if you continually tell someone they need to behave differently than they are, they start to wonder why, and they start to feel badly about themselves. Then you can add self-esteem and confidence issues to the list of pre-existing problems caused by the autism — but these issues are caused by ignorance and not the autism directly.

My goal now is to increase autism awareness so that my son is happy. I want every child with autism to be happy, but I need to start with my own. Awareness month here is a big deal. We are putting out 12 blue light bulbs tonight so our yard is rimmed in blue. I’m dying some of my hair blue tonight — really, a bright dark metallic blue. Awareness ribbons, magnets and pins will be visible and I’ll be continuing to ask random businesses, and strangers, what they’re doing to further awareness, while explaining autism to everyone I can. But I am focusing on high-functioning autism, the children that don’t fit the mold, those that are misunderstood, and those that are falling in the cracks because few know what to do. My goal is to decrease the number of people who don’t know what to do with my son.

My son is my light, my joy, and a blessing to our lives. He is funny, smart, wise beyond his years, and thinks outside of the box. He has a mind for computers and logic that amaze me, and a memory that puts most to shame. His stories are so entertaining, and his lack of a verbal filter means he keeps us on our toes and gets adults thinking outside of the box too. Not a single person who has given him the chance to talk can say that he didn’t impact them. I hear throughout the years, from everyone who has worked with him or talked to him more than a minute or two (which isn’t nearly enough, because if you are uncomfortable around different people, you tend to not give him the chance he deserves, which is seriously your loss) that they love him and they want more time with him. People get him, if they open their minds and allow it to happen. Stop putting kids in a mold, see them for what they are, and accept them. Your lives will improve, you will learn more, and my son will face less discrimination. Win-win.

I’m off to go get the light bulbs ready and see if there’s a blue snack I can send to my son’s class tomorrow. He won’t know the significance of it, but adults might and if nothing else, how many snacks are blue? It’ll be yet another different exposure, and that’s never bad.

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1 Response to "Autism Awareness Begins At…"

Thank you that was well said!! You have described my experience with my son and 2 daughters who all have high functioning autism!!

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