Dear Subscribers: The writer of this particular editorial asked that the name be withheld. While we struggled for a long time with whether or not we should send it out, in the end, we feel that the voices of the parents should be heard.
I’m just as excited as the next guy about all of the recent media attention that’s being given to autism. The View, Larry King, and dare I say, even media mogul Oprah Winfrey herself. We need the media attention to enlighten the thousands of people walking this planet who still have no idea what the word autism means. Still, to this day, when I mention the word autism, I get blank stares and the word that makes me cringe — “Rainman.” You would think that 19 years after the release of that movie we would evolve into a better understanding of the disorder that now affects 1 in 150 children.
Yet, many still have no idea what autism is, how it manifests in a child, or how incredibly prevalent the rate of diagnosis is today. A recent statistic heard on the Today Show from Dr. Goldstein from Kennedy Krieger made my hair stand on end. He said “1% of boys today will be diagnosed with autism.” (Or something to that effect.) And yet, so many other moms and dads of neurotypical children don’t know what it is or care for that matter, because they’re wrapped up in their own soccer leagues and T-ball schedules and their perfect lives with their perfect children.
If I sound bitter, in the words of the late, great Johnny Cash……. “maybe I am.”
I’m bitter for several reasons. Actually, I think the proper description of how I feel might be “bittersweet.” While we’re getting all of this media attention and everyone is jumping on the autism bandwagon, I can’t help but feel that the autism community is being hijacked by those who have appointed themselves as the poster children for autism. Those of us who have been working so hard all of these years to bring autism to the forefront, fighting at the state and Federal levels, and trying to ensure that ! our children have what they need now feel alienated by the big guns who came in with their big wallets and Hollywood starpower and took over the entire autism world as we know it. The grassroots organizations are being, well, weeded out.
Don’t get me wrong. I think they’ve done a fabulous job of bringing autism to the forefront. I’ve seen characters with autism on shows such as 24, Law & Order, House — the list goes on and on. And the often disjointed autism community seems to have now come under one happy umbrella. Instead of having 100 different groups with different agendas, we’ve come together. Or have we?
As a member of several grassroots organizations, I get a little concerned when I hear statements like “we do it all.” Yes, you do a lot, and for that we are grateful, but without the help from thousands of parents, aunts, uncles, grandparents and other family members who have been fighting this fight for years. Parents who are marching around cities raising money for research ___ (code in copy, not sure what this was) hoping that some of those precious research dollars will go toward investigating the role of mercury toxicity in its relationship to autism.
Parents who have started organizations, support groups, and resource networks all across the country are the heart and soul of the autism community.
I beg to differ — *WE* do it all.
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