Monday, April 18, 2011

Autism and the Celebrity Factor


An article on Age of Autism was recently recycled for Autism Awareness Month. It was originally written for the Huffington Post in honor of President Obama’s inauguration. Entitled, “If the First Child Had Autism,” author Kim Stagliano* explores an imaginary inauguration ceremony from the perspective of the First Lady, who also happens to be the mother of a child with autism. Here is an excerpt from her article:
The First Lady is holding her child's hand tightly as they walk toward their seats, her smile tempered by the interference from her autismometer, the scanning system she uses at all times to gauge her child's mood, temperment, ability to manage the input and to anticipate a meltdown. In her other hand she holds a metal ring on which hang dozens of plastic cards with simple pictures and words. It's an odd accessory.

The boy is wearing a pair of bulky, Bose noise canceling headphones to help him tune out the roar of the crowd. His eyes are cast down to the floorboards.

The lines laid out before him capture his attention. He stops. He sits down.

A brief look of panic crosses his mother's face. She erases it. Then gently, lovingly signs, "stand up."

He lies down.

Kim’s article got me thinking about a lot of things. Can you imagine what it would be like to actually have a President who had a child with autism? Autism would finally get the attention and funding it deserves! Families like mine are struggling every day. I know people who have sold their homes and cars, cashed in their 401(k)’s, had their cars repossessed, and their homes foreclosed. Parents willingly put themselves into financial ruin all for the sake of caring for their child. It shouldn’t have to be this hard.
For a lot of us, there is little or no help. In my home state of Washington, autism families are discriminated against with their insurance benefits. A diagnosis code of 299.0 (autism spectrum disorder) is an automatic denial. How is that for fair? When I was new to autism and struggling to understand what I could do to help my kids get the medical care they needed, I made countless phone calls. At one point I even contacted a state-level insurance office to discuss my options. I was told that the best thing for me to do was either: 1) divorce my husband and apply for welfare (say what?!), or 2) go work for Microsoft (the only private employer in our state at the time offering insurance benefits for autism). I was flabbergasted. That was the grand solution to my problem of trying to care for my boys without being forced into bankruptcy.
Even though there is no child with autism currently living in the White House, I love that Kim gave us a chance to imagine the impact of it, if only for a moment. Autism is in the spotlight from the efforts of a few celebrities, like Jenny McCarthy and Holly Robinson Peete. I appreciate and welcome the attention they bring to the subject, because America hasn’t truly woken up yet to the autism epidemic. Even if you don’t agree with everything the celebrities say or represent, they have cultural popularity and media connections that make their voices much louder than mine and others like me.
There are certainly LOTS of us autism moms out there now, especially as the incidence rate of autism continues to balloon out of control. All we can do is keep writing and talking about our experiences, in the hope that people will take notice, listen, and help us effect some change for the benefit of the entire autism community. We need all the help we can get because there is a new generation of children with autism that will be adults soon enough.  

All I Can Handle: I'm No Mother Teresa: A Life Raising Three Daughters with Autism*Kim Stagliano is an amazing warrior mom of 3 girls with autism. She is an editor at Age of Autism and wrote the book, “All I Can Handle: I’m No Mother Teresa.” I have a copy of her book and I thoroughly enjoyed reading it! Full of wit and poignant moments, it will also make you laugh out loud. I recommend you pick up a copy! You can take a look by clicking on the picture.

April is Autism Awareness Month! A group of mommy bloggers have joined together to help spread the word about autism. Please visit these wonderful blogs!
Join us, won’t you?

2 comments:

Mother Baby Child said...

Yes, it does make one think ... doesn't it. ASD are not ignored, though do not get the funding nor the understanding needed to give all children the advantages they need.

Caffeinated Autism Mom said...

And, the parents are left to fend for themselves in many cases, hoping they can help their kids without losing everything. I don't think people realize the magnitude of impact this generation of kids with autism will have on the economy down the line. We should be helping them when they are young to give them a much better chance for success as they become adults. Turning a blind eye with policy and funding is not helping. But, unfortunately, it seems that the government cannot hear the alarm bells blaring. I will continue to work toward changing that. And, I will maintain hope for my kids and others like them.

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