9/26/2009

It's Not an Entity that steals your children. I am Autism propaganda

http://community.livejournal.com/asperger/2415706.html Thanks to Codeman38 for providing the transcript of the I am Autism video.

I haven't gotten less irritated by this distortion of ASDs as the week has progressed, and the comments by two people over at http://leftbrainrightbrain.co.uk/?p=3226 have only strengthened my frustration. Of course, comments by anti-vaxxers at http://leftbrainrightbrain.co.uk/?p=3226 don't serve to lessen it either. Convuluted and tortuous logic abounds in these two in a misguided attempt to support the use of often dangerous and completely uneccesary treatments for autistic children. The argument that it reflects the depth of the mother's love for the child is poorly served considering that mothers who engage in exorcisms for their children undoubtedly love them, too. There is NO good reason to put a nicotine patch on a child. No good reason to think that lupron, IV chelation (round after round), HBOT or IVIG are effective, beneficial treatments. There are in fact clear evidences that none of these should be used on autistic children.

But, hey, once you watch the I am Autism video and pick apart the offensive narration, you begin to get an idea of why a subset of parents will go to such lengths. They've decided that autism is a monstrous entity out to frak with them and destroy their lives. Not the kid's life. Their lives. Got it?


"I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late."

What the hell does this mean? Too late for what? I'm visible in your kids but invisible to you? WTH, who is it visible to, then?


 "I know where you live, and guess what? I live there too."

Okay, considering that autism is neurological difference/disorder, it is a function of the neurological wiring of the person who has it. This menacing I am a thief in the night crap is annoying. First off, since the child is autistic, and they've presented autism as foreign entity invading, it tends to render the child a bit like Damien, doesn't it?

"I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language."

Again with the menacing. What the frak does this mean, I speak your language but I steal it, and I get a new one. Do these people think there is some amorphous entity moving from child to child and sucking the humanity from the child?

"I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined."

Bullshit. Since in all likelihood autism was set by birth and is a neurological difference, it didn't "work" quickly. Wow, way to get horribly wrong and seriously offend parents whose children have AIDS, cancer or juvenile diabetes.

 "And if you are happily married, I will make sure that your marriage fails."

Not the child's fault. Narcissists. And not all marriages fail. My husband and I will celebrate 21 years this December, and our autistic (and never leaving home to live an independent life) son will turn 20.

Oh, and that's not simply a testimonial masquerading as evidence. Here's an article linking to a survey that shows the divorce rate for parents of children with ASDs at 30%, well below the national average.
http://www.opposingviews.com/articles/opinion-what-are-the-divorce-rates-among-autism-families


"Your money will fall into my hands, and I will bankrupt you for my own self-gain."

I won't pretend that many families don't go deeply into debt for their children. We have not. And not because we had the cash to pay for the therapies ourselves. What the school system didn't provide, I did. I busted my ass for, well, damnit, nearly two decades. Thousands of hours spent providing one-on-one intervention. It was time well spent.

If you go bankrupt because you chose to go down the woo-trail or to pay 50 grand a year on ABA, I'm going to think there might have been a better use of your money and your time.

"I don't sleep, so I make sure you don't either."

I've written about fractured nights and splintered days. I had more than a decade of them. I walked around exhausted for literally years. I get it. You find ways around it. And it gets better.

"I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain."

First off, get over yourself. Embarassment is a choice. What the heck is the pain? Again, narcissistic. Struggle, well, that's possible. So, you learn what your kids' triggers are and what their currency is. You prep well in advance of an event and you bribe them. It's called operant conditioning. And if a stranger is an ass to you, you call the person on it. Seriously. How are you going to create a kickass kumbaya world for your kids if you aren't advocating for them? My children are beautiful children who, when we prepare them adequately, are generally well-behaved children. They have limits, so if I push them past those limits and they have a meltdown, who's fault is that? Mine.

 "You have no cure for me. Your scientists don't have the resources, and I relish their desperation."

Bleck. So much wrong here.

"Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism."

Mostly, it's a lack of understanding, which AS certainly didn't help. Yeah, like the neighbors are going to want to have anything to do with the family as a whole after seeing this announcement. Way to help, AS.


"I have no interest in right or wrong."

I don't even know what to say.

"I derive great pleasure out of your loneliness. I will fight to take away your hope."

Not about the autistic's perspective. All about that yuppy-ass, whiney ass narcissistic, pity-partying parent again.

"I will plot to rob you of your children and your dreams."

Totally know who they are appealing to: the anti-vaxxers who believe their children have been stolen.

"I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?'"

Really? Are you friggin kidding me? Not about the autistic. Not about how to make society more adaptive for the autistic. Not about making the autistic's life better. All about the parent.

I admit that I think about what will happen to my son when his dad and I are gone. That's why we have a special needs trust in place for him. We aren't made of money, but we will do what we can to make sure he has a home to live in and a guardian to take care of the things he cannot. I do not think his sisters will need the same thing in place, but we will be ready if they do.

 "And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake."

Who ignored autism? And what the hell is autism winning? There aren't any more autistic children than there are autistic adults (new survey showing 1 in 100 adults is autistic. Oh, and kids are autistic at the same rate, according to another study). It isn't an epidemic. It isn't caused by vaccines. No one ignored autism. Decades of research and efforts to make the public aware of autism. Better and earlier diagnosis. Early intervention.


This public announcement is garbage. It should have been offensive to almost all people. I submit, again, that if you agreed with it, it says a great deal about you and how you view your child. Autism isn't about the parent (unless the parent is autistic, then it's about the parent). Parenting any child shouldn't be about the parent. It should be about the child's best interests.


I do not support Autism Speaks when it puts out offensive videos like this.

7 comments:

NightStorm The Aspiewolf said...

http://prismsong.livejournal.com/6740.html

Here is the link to the story I sent Suzanne and her typist Dee,

Back on topic, I hanged around Left-Brain Right Brain, and kinda scrolling the TL;DR of parents being butthurt and the autie's indignant responses. When I noticed that Syntheisite or however you spell her name. Mentioned "With the Light" and I grinned.

I use to think that most parental POV autism stories are nothing more than monolouges of self-pity and scapegoating. Then I read the graphic novel of With the Light which is set in Japan with a mother and her diagnosed son Hikaru. It's a writen of course in the parent's POV but it's wonderfully postivite and such a refresher from the "Warrior Mom" shit. Keiko Tobe is the one who wrote it and I reconmend parents and autist give a shot. I have some dislikes with how stereotypical Hikaru is, but it's definity a good read for anyone.

Roger Kulp said...

Just to correct you Kim,most known causes of autism,other than Fragile X,require both a genetic predisposition and an environmental trigger.It's like the song says "You can't have one without the other.

I hope this flame war continues.It's getting fun.

Chromesthesia said...

Yeah, that would be me! Man, I love With The Light, because they are trying so hard to keep Hikaru in the community and educate people about autism.
And they had this nice buddy system.
And that lovely teacher. *sigh* He was so nice, working hard to understand the kids instead of moaning, "oh, how hopeless!"
Definitely one of the best things I've read about autism besides blogs.

NightStorm The Aspiewolf said...

The think I like the most with "With the Light" was the optimism that Sachiko, his mother had. She used a "newsletter" to edcuate people and found ways to keep Hikaru engaged, Aoki-Sensei was a great character the kind that wants kids to paricipate with the rest of society. I need to get the third volume of it.

KWombles said...

Correct me where, Roger? Hmmm? I have long said that no scientist worth his/her salt dismisses the interaction of environment and genetics on each other. And where I directly refer to my children's autism I note that it appears to be the interplay of genetics and problems in the pregnancies.

And since the anti-vaxxers don't acknowledge any genetic role and ascribe it to bad vaccines, one could argue they don't acknowledge the complex interaction of genetics and environment.

Clay said...
This comment has been removed by the author.
Chromesthesia said...

*ahem*

One of these days when I get some dough, raise up some BREAD i'm buying that whole series.

Then it will make my eyes all drippy and folks at the bookstore won't see and I won't have to give it back to the library.
Sachiko is awesome. Trying to make a good life for her kids. And her husband became a better character too because before he was a jerk.