Autism Speaks Just Jumped the Shark

...and pretty much told most of the autism community to take a hike!

I've made no secret of my issues with the organization, which have included launching an Autism Speaks U chapter at SUNY Potsdam that I now thank God that it never really got off the ground.

This past week, Autism Speaks finally jumped the shark. Suzanne Wright posted a note on the Autism Speaks website about their autism action summit, and put it in harsh words, like "We will demand a national response" and "These families are not living" and, quoting both the not and a Fortune article, our families are living "… moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future." And it's true. I believe that Autism Speaks has a bias slant towards non-verbal autistics and their families, the stereotypical "hand flappers". Autism Speaks ignores the fact that individuals on the spectrum make HUGE contributions to their communities. Chris Tuttle is a perfect example of one of these individuals, although how severe his Asperger's is I'm wondering, but I don't know him, so I can't tell, but if people are in an uproar that a customer insulted a really nice person for being a little slow, well, he has a great group of supporters. It's people like Chris who help make up the fabric of our society.

How bad were things? John Elder Robison, one of my heroes, decided that it was time for him to leave his advisory position. He's a true role model, not Bob and Suzanne Wright. So does this mean I can't go on MSNBC now? (Bob Wright was the head of NBC Universal for a while). Robsion has made his move (which I agree was a good one), so I expect our good friend Alexis of Cut Bank (Wineman) to make the same move and speak out on the harsh words said by Suzanne Wright. Some of us might not be able to speak and others not able to speak much, but we can hear every single word you have to say (and I had to restrain myself from using the f-word in that sentence). Autism for me has not been complete misery, just a significant inconvenience. (Also, I really need to learn to spell "inconvenience" without spell check, I really do!). Being on the spectrum has instead given me a drive to show the world that there's not much we can't do. If Autism Speaks was trying to make progress, they went back not several steps, but several miles. The people who lead Autism Speaks truly have their head in the clouds.

And how about this one: "This is a national emergency. We need a national autism plan – NOW". Relax Mrs. Wright! It's not an emergency. People dying mysteriously, now that's an emergency. With any disorder, I take one day at a time, even if I don't take my overall life one day at a time. I find it easier to take one day at a time when I don't have a job. And just like what John said, I embrace the gifts I have with autism: a gift for politics and my ability to solve political issues (well, need to put that into practice!) through compromise and careful analysis. Let's help everyone on the spectrum, and not judge someone who might be on the spectrum just because they might not appear to be. They might be fighting a tougher battle than you are. And that's another thing: autism comes in all shapes and sizes.

And Autism Speaks has given voice to people whose positions can be seriously questioned, the best example being Jenny McCarthy. There's going to be a good chance that a serious epidemic will be the result of a few parents watching her on television discuss how autism is caused primarily by vaccines.

And finally, also recently, with my own bout of stomach issues, I wonder if I might have fallen susceptible to the stomach issues that us on the autism spectrum deal with day in and day out. But a connection with anxiety? My ears are open.

I'm going to partly quote Karl Marx's famous "Workers of the world, unite!" slogan with my own: AUTISTICS OF THE WORLD, UNITE!!! And let us stay classy while uniting! :P

UPDATE: January 15, 2014: 

Yet, we seem to have forgotten our children - and our children are our future.
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.

When I read the thing closer, I realized how much more nauseating the op-ed was. Of course, this IS MY OWN OPINION, and I stress this. So apparently us autistics stress out marriages and make families not thrive? I call malarkey. My mom, stepdad and other relatives have enjoyed seeing me blossom into the person I am today. Yes, I had my share of meltdowns. But the quality of life improves, at least it has for me. (The same can't be said about my dating life and relationships!)