Monday, December 17, 2012

Dear Media, You Owe an Apology

Dear Media, 

The tragedy in Connecticut is utterly unfathomable and one where all the answers may never come. We understand the drive to “get to the bottom of it”, but in doing so, many of you are creating another class of victims. People who are already stigmatized. People who fight on a regular basis to be accepted and understood for who they are, but will live most of their lives being misunderstood much of the time. These people eat, sleep – and even have dreams and ambition – just like you and me. And they hurt when others speak wrongly of them – just like you and me. 

And you did the same thing back in July, rushing to use the same label on that suspect, and I still can’t find any definitive proof that he has what you claim this new shooter to have.

But you’ve hurt a certain class of people – again.

These fellow human beings are those who just happen to have an Autism Spectrum Disorder. Most of these individuals will never harm anyone. Ever. And they have diverse personalities just like everyone else.

As a speaker and author on Asperger’s Syndrome, I am utterly disgusted that “autism” or “autistic” is one of the very first words many of you have chosen to use to describe who the shooter was. And that diagnosis is not even known at this point to be fact, am I right? And even if it becomes fact that he is on the autism spectrum, it does not mean that autism is the cause of his act. Not. One. Bit. 

Let’s set one myth straight; that those with autism cannot empathize. In most circles it is better stated that many of these individuals appear to lack empathy. Leaving out the words “appear to” is irresponsible reporting. Ask any mom of a child with Asperger’s if they’ve ever cried or felt sad, and they’ll answer you. The fact that they may not communicate empathy in a way that you or I do does not mean they lack that very same capability. But many of your peers are wielding that sword to “prove” autism coupled with that purported autistic trait is part of a suspected motive for such atrocious behavior, no? 

Look at empathy from another angle. The famous photo of a young woman in what has to be one of the most personal, gut wrenching, life altering moments of her life has now become emblematic of the ghastly event. Did you ask her permission to invade her privacy like that? Did you or your peers display an ounce of empathy in blasting that photo all over the world? If she gave permission, that is one thing, but my studies in Communications in college leave to believe you didn’t. That you hunted down an image of raw emotion to represent and induce the same in the reader. 

And you were anything but empathetic in doing so.

Please, let these hurting families have space and time to grieve and attempt to heal.

But regarding linking autism and violence, the damage is done. “The horse is out of the barn.” And I had the unpleasant experience of watching my daughter suddenly melt into a million tears yesterday afternoon, worried that “they” will be coming after everyone with Asperger’s, now. And, no, we did not plant that idea in her. Hardly. How dare you even think such an atrocious thought! We have barely discussed with her this incident and the media’s reckless connection to autism. All we did was mention to her that you were linking the two, and that she needed to be aware of what others will be saying as a result. Nothing more, nothing less. She is old enough to search out and read your news anytime she wishes.

Still, her emotions are raw and she’s rather unsettled. And she does hurt for those children, those educators, and their families. She’s a smart kid, and nominated for one of the most prestigious summer schools in the country. She didn’t get the nomination just by being highly intelligent. She received it because of that intelligence coupled with who she is as a person. 

And she will make such a positive impact on the world that we will all be better off.

And so will countless other individuals on the Autism Spectrum.

And so have countless individuals on the Autism Spectrum.

Dear Media, you owe the Autism Community an apology. We’re a diverse bunch, and we are forgiving, yet we refuse to be the new scapegoat.

It’s up to you.


Julie Clark
Published Author, Speaker and mom of a daughter with Asperger's

For those who are reporting responsibly - thank you from the bottom of our hearts.

Friday, October 19, 2012

Katy’s Firework and a Little Girl Named Jodi Impelled Me to See How Far My Aspie Has Come

Oddly enough, I've had this song in my head for the past few days. Then my sister shared this link with me. Maybe you've seen it? We don't have cable. Really. So this was new to me. Not much brings me to tears. ASD moms can be like that. We're tough. Not much rocks us. But seeing this did it. I took the time to Google and read the lyrics to Katy Perry’s song, “Firework”, and will never hear that song the same again.

Watch and listen.

And believe in your child, and yourself.

It is imperative that those view those who happen to have autism, be it “classic”, “Aspergian”, or anywhere in between to truly believe these individuals are capable of extreme growth. And making a positive mark on the world.

Jodi is living proof that autism is not only a spectrum, but so is the concept of growth for all who are on it. Listen to her story. Consider my daughter, Kristina, too. When she was diagnosed with Asperger’s, had we considered her linear position on that fluid line concrete, she would never have attended Driver’s Ed classes. We would not be taking trips to visit college campuses miles from home. We would be living life “content” with the fact we bought a home that would allow her to spend her adult life living with us, never acquiring the executive functioning and social skills needed for life on her own.

And she would wither.

And the world would miss out on her spirit and spunk.

Both Jodi and Kristina, along with Temple, Jennifer, and so many others prove that those with Autism Spectrum Disorders have so very much to give to all of us.

Be it via watching a YouTube video, raising my own Aspie, watching one of these amazing ladies speak, or doing a simple coffee together, all of these women have enriched my life, and hopefully yours, as well.

Like so many pop songs, I “wrote it off” as another trendy, generational aural fad. But I took the time to read the lyrics, and recall all the struggles my own daughter has faced. Now our family is standing at the door – her door – watching the glow appear from the other side as it starts to open. It is nothing short of breathtaking.

And it brings this stoic, hardened, battle weary mom to tears.

It’s been a long time. It’s been a long road that isn’t over yet. And almost losing my husband this past winter due to a Subarachnoid Hemorrhage (bleeding on the brain) has had us working our way to a “new normal,” too. In brief, life has swallowed us up, making getting from one day to the next the priority, finding me on the cusp of losing the greater perspective when it comes to my daughter.

Watching the story about Jodi and listening to Katy’s lyrics are what it took to get this mom’s perspective back in order. Sometimes, we do need to stop and breathe, choosing to look at the bigger picture.

This is our picture.

My daughter was born with autism (Asperger’s). My daughter’s preschool teacher didn’t have her finishing high school, due to her lack of social ability. Her executive functioning skills as a youngster had us all questioning if she’d go away to college, let alone live on her own someday. Thankfully, neither my husband nor I believed any of this was her fate. We pushed. We taught. We role played - without dungeons, dragons, or funky RenFair outfits. We spent time and money on therapies and books as opposed to yearly vacations and summer camp. Or cable. We simply could not afford them. Yes, it was hard. It was darn hard at times. But we held a firm vision of the future and stood firm. Today, we are seeing the result of all those years of sacrificing time and finances – even my own career.

My daughter is a firework. (This is ironic if you’ve read my book, “Asperger’s in Pink”.) Her door is starting to open. And when it’s her time to shine – all on her own - she will, indeed, light up the night sky, making the world a better place.

So can yours. So can you.

Wednesday, October 17, 2012

Tagless for Comfort

The other day, I did something I haven’t done in a few years. I took myself shopping. Like many Americans, although our jobs have remained the same, our income has not kept up with soaring insurance costs, rising food costs and more. But jeans wear out and shoes wear thin and eventually need replacing.

One trend I noticed while shopping is largely neglected by most. It isn’t the Color of the Year (Pantone, anyone?), or faux fur vs fleece. It’s all about the tags.

Yes, this is on its side. No, I can't get Blogger to fix the orientation. *sigh*
When Kristina was little, like most kids on the autism spectrum, she detested tags. And this included those on her stuffed animals, which she promptly whacked off the first moment she gained access to a pair of scissors. For most families with sensory sensitive kids, tags are a bane. They scratch, they itch, they do anything but lie flat. In short, they are a literal pain in the neck.

Or side.

Or waist.

Which brings me back to my new shirt. I took the plunge and bought one with a pattern to it. Olive green with swirls of lighter green and sage. A pattern that will be quite dated by season’s end, ensuring a built-in excuse to buy another. On the tag, I read something that caught my eye. It said, “tagless for comfort.” It made me think of so many families who’ve clipped these bits for longer than my daughter has been alive. Sure, the decision to make these is likely the result of cutting costs instead of outcry, but what a (literal) relief, just the same.

Now, that claim was only partly true. There was some sort of white plasticky- thing sticking out from the neck, along with regulated care information sewed in the side seam.

But it had me thinking deeper. Tagless for comfort. How many people use “tags” for themselves out of necessity for access to services, for greater understanding and acceptance, but who would rather go tagless, and be accepted for who they are, no label needed?

I know my daughter does.

The truth is tags are often uncomfortable. They can draw unwanted attention. Just as a scratchy tag can make a beautiful dress unbearable to wear, focusing too much on the tag can distract from the person wearing it.

Yes, labels and such are needed and useful, just like the one sewn into the side seams that tells the wearer how to care for that particular piece of clothing. It is very important that proper diagnoses are made and the sooner the better. But once that is done, it’s time to move on and grow. And as your child grows, her sensitivities and skill sets will likely grow and change as well.

This post isn’t about getting rid of tags, per se. It’s about choosing to look at the person for who they are, not what they are wearing.

But you already do that, right?