My response to Autism Speaks

Autism Speaks.  Just saying that name kind of turns my stomach a little.  They do some good things but mostly they just take money away from organizations that actually do something worthwhile.  Maybe I’m being a little harsh.  I accept that and take responsibility for it.  It just might be a bit unfair.

But then they say things like this and it just reaffirms my distaste for them.  Go ahead.  Read it now. I’ll wait.  (I can’t tell you how much it pains me just to send traffic to them to read the blog posting but those damned copyright laws are pesky.)  When you get back, if you haven’t read all the comments, I’ll have my comment pasted below.

So?  Were you pissed, too?  Here was my response:

No. It’s not time to change the conversation. I guess you think you have things all figured out. Your novel studies happen to be telling us what we already know, thank you very much. We’ve known early intervention is the key many years before you existed and just about every parent here can tell you we knew something was wrong by 6 months to a year or the day something changed, usually right after a vaccine or illness when it’s a sudden change. Behavioral therapy has also been the go to therapy since well before AS. So thanks for trying to take credit for all of that. I guess Lovaas doesn’t exist in your world. We also know a lot already about how to help our kids’ medical issues – what we need is mainstream acceptance and support to continue that area of study. So while you’re spending your money trying to figure out what we already know, the rest of us will keep discussion going that actually is useful – like what is happening to our children?

I’m also quite tired of hearing each individual person say how vaccines had nothing to do with their child’s autism. Sure, it may be true. I don’t claim to have the answer. And if it is true – that’s great. There are plenty of typical kids that aren’t affected by vaccines, either – it’s unrealistic to expect that ASD kids aren’t in that mix, too. But what about those of us that did? Do we not get a voice because you feel it had nothing to do with your child? Or what about your children’s children? Wouldn’t you want to know if they have a risk of vaccine damage?
The mentality of medicine as a science hasn’t changed much in the hundreds of year of its existence. It takes too long to get the medical community to wake up. If they don’t understand something, it must not exist. There was a time they gave women with PMS lobotomies, too. If you think that mentality has changed and we’ve somehow evolved beyond that, you’d be wrong. We make the same mistakes, only now we have shiny new technology with which to make those mistakes and be bullheaded stubborn in our desire to be right. The focus should be on the truth, not who’s right or wrong and we aren’t going to get there by letting Big Pharma do their own studies to show how their products are perfectly safe.
Drugs are put out all the time that aren’t safe – and they know it, both the companies and the FDA. Thank you, Vioxx, a shining example of how the more things change, the more they stay the same.
There are too many cases of “it didn’t happen to me so it must not be true” going around and it doesn’t do anyone any good. It doesn’t help get an answer. The same is true for those raising their hands saying, “I had my kid when I was 20 so it’s not age.” Stop dismissing things simply because it didn’t happen to you because there’s still time.
AS might be satisfied with the so-called studies that say vaccines are safe, but I’m not and neither are many other parents of children so obviously affected by them.
Occam’s Razor, people. It’s not that difficult of a concept.
I’m not one of those people that think vaccines are the smoking gun. With so many different kids with such unique issues, causation is not going to be the same for everyone. Treatments on my viral kid don’t work as well with a PANDAS kid or a gut kid or a metals kid or combination kids. I’m one of those people that believe there’s a fully-automatic machine gun shooting many different bullets and I don’t think trying to find them is as much of a waste of time as you apparently do. Yeah. Thanks for that, too. Thanks for caring about our kids so much that the getting a *real* answer just isn’t that important to you. My grandkids thank you, too.
I don’t deny that AS has made an impact. Some of it is even good, sort of. If you think you got insurance to cover ABA, well, I guess you sorta did but it’s funny how parents are still being denied by insurance in states that supposedly now have insurance coverage. But I guess you can still pat yourself on the back for that. But don’t you wonder why you have so many autism families that refuse to give you a dime? And doesn’t that matter to you?
If this sounds like I’m angry, it’s because I am. You start your blog by saying, “We still need answers to too many questions regarding causes and treatments…” and then dismiss any such conversation on just that. Wonderful work. Keep up the good job. It’s doing wonders for you, really.

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