4/13/2010

When Rampant Emotionalism, Threats, and Lawsuits are What Greet the Media and Professionals who Speak About Autism, WTF Did you Expect?

"I found it interesting that most news reports didn't include a doctor explaining the disorder and what was being done.  Has the medical community just gotten tired of interviews where all they can say is that they have no answers?" Anne Dachel, in her coverage of the press coverage of Autism Awareness.

Dachel kvetches that the coverage is bleh. Since there isn't enough emotionalism in the press reports, she provides it:

"None of the stories I presented said a word about preventing autism but as these kids age into adulthood, we will grow desperate to stop autism from affecting more children because it has the potential to bankrupt our country.  I can't think of another situation in history where a disease or disorder struck a generation of children and they became dependent on the taxpayers for their support and care for life.  The last famous epidemic was polio in the 1950s.  One in 3,000 Americans were affected but most recovered and went on to lead productive lives.  I had an aunt and a cousin who got polio.  Both women got married and held jobs.  The same won't be said about the hundreds of thousands of American children with autism.  I think it's time to change WAAD to SAND...Stop Autism Now Day."

The irony of one of the organizations that has worked tirelessly to scare the shit out of society regarding vaccines bringing up the polio epidemic is rich, is it not? And especially the way she manages to downplay the damage that polio did. Nice work.

I know, I know, she's pissed because the vaccine crap didn't get the play she thought it should and that's what she really means by prevention of autism. It got no media play because it's wrong, and they've wizened up enough that unless they parrot what this extreme group wants to hear, they will be subjected to rampant emotionalism, threats, and lawsuits. It's no longer worth the cost. So thanks, Age of Autism, Gen Res, TACA, and other organizations that have managed to put a lid on autism awareness in such a way that there is little discussion of autism, and completely inadequate discussion of vocational training, support, and assistance for those autistic individuals who are in their early adulthood. Your focus on vaccines and woo have done far more to hurt the autistics in our midst than an unaware society. You certainly haven't promoted awareness of the challenges autistics face. Your focus has been all about the parents and the vaccines and your inability to adjust when the evidence shows you being wrong makes people view your organizations as less credible. Nice.

4 comments:

Nightstorm said...

Cue generic response of indignity...

I really can't help but nod and agree, your more or less preaching to the choir here Kim.

The emotionalism isn't helping either side really. It continued to create a massive schism that is going to be eroding the very fragile support we have.

I understand parents don't want their autistic child to be autistic adults. Because they know once their little darling becomes 18, all those lovely little safety belts that kept their baby secure...turn to ash.

What is terrifying me the most is that many of these pro-cure anti-rights parents are keeping their children shackled in igorance. How many of these children passed the age of 8 are aware of their diagnosis? How many of these parents lie to their children when they are given unproven drugs and treatments?

Why are these parents continuing enslave their children by their own ignorance? You're given their enemies power to control them for their lives.

Parents need to start encouraging their children's self-deterimination start respecting their personhood and start teaching them the basics of self-advocacy and they need to do it early.

Parents of autistic children need to start handling their children tools. Because the world will continue to opress them and they need to learn to communicate and rise up.

-cue Hugo Chavez banner in the background and Muse's Uprising playing someplace.-

kathleen said...

yeah...loved that she brought up polio as well..hmmm...she didn't mention why the decrease in polio though...there is so much to be done...sigh..maybe now that the media isn't giving so much attention to the myth of vaccine causation-maybe now we can get people to think about services and supports..

KWombles said...

Well said, Nightstorm. I think that I don't get nearly as frustrated when I read AoA because they are not getting the media play they used to, so hopefully less parents will buy into their empty, angry rhetoric.

I am disturbed, though, that not enough attention is focused on resources for the adult disabled community.

You raise good questions; what exactly are these parents communicating to their children? Their information on autism and mediation for the more disabling aspects is incredibly skewed. It cannot lend itself to adaptability for their children as they grow up.

I wish that we could connect to these parents, get their attention focused on the really important and pressing issues, take their minds off of the garbage they've bought into and centered on helping their children make the best possible lives for themselves.

I suspect that parents who do not think of their children as commodities are less likely to go the direction that the AoAers go.

Nightstorm said...

I am disturbed, though, that not enough attention is focused on resources for the adult disabled community.

Which should be the top concern once their kids reach adolescence (as well as being ready to educate them once they reach sexual awareness, but Sexual Education and Autism is another topic) because it won't belong before their kid won't be having their supports any longer.

The thing is that many parents assuming working autistic adults that are really passing for normal aren't actually autistic but 'recovered'. They want their child to be 'recovered' so with bit of Machiavellian sort of mindset, they will do what ever is necessary so their child will be recovered...read passing for normal.

Let me tell you something. I can pass for normal easily. My mask is secure and tight. But I am not normal. I do have meltdowns and shutdowns. I have moments of echolicia, communication flubs and I can't process verbal cues and instructions.

Parents seem to miss that crucial point. I look normal. And let me tell you. It's hard fucking work. I hate it, but it keeps me employed.

Hence the need for supports and tools for adult autists to ustilize when are struggling to be normal. Because the parents are missing the crucial idea that just because their are verbal autists with jobs and money, that they don't need supports. Is honestly damning their child who will probably one day be in the same spot.

Lets not even mention that some parents put us in the same spot as unicorns.

I wish that we could connect to these parents, get their attention focused on the really important and pressing issues, take their minds off of the garbage they've bought into and centered on helping their children make the best possible lives for themselves.

As much as I want to knock some sense into them I would be discredited as a "aspie kid" and that their precious baby is poor suffering non-verbal LFA and I am not like him. Wah wah wah piss and moan.

I personally don't feel like dealing with white 30-40 somethings in suburbia and their defensiveness. I don't feel like breaking down the idea that Anti-vaxx is not only ableist but also classist as well to them. I don't have the energy because the discourse becomes oroboric. Put it simply Kim, I don't talk about anti-vaxx because there is nothing for me to talk about. You will probably reach them better than I would.

Their information on autism and mediation for the more disabling aspects is incredibly skewed. It cannot lend itself to adaptability for their children as they grow up.

The deal is for some is that we had no choice. We had to adapt or die. We didn't have "Emma Hunts" coddling us every time we freak out. We had to think and evolve sometimes in weird ways but for us it worked. Parents need to realize that they have to let us freak out and figure stuff out. We can do it...have little faith in us.

We're not that hopeless...c'mon.