9/05/2009

Proving that AoA is all fluff, lightness, and kumbaya. Not.

"Can you hear the dedicated pharma and genetics and behavioral commenters stampeding to HuffPo? How many harcore ND bloggers just vomited a little in their mouths?"

How does this not read as an attempt to stifle debate and an immediate dismissal of anyone who doesn't see the world their way. Wow. KS, you managed to offend so many people there in just one sentence. Good work. They probably didn't, at least not until they read your comment. Probably.  How many of your loyal readers just read your words, though, and thought, wow, a little much perhaps? I wonder, does it chap you that AoA's stuff was not promoted and was buried last month, but Hyman's getting big bylines for his stuff?

WTF? Most people with a scientific penchant who peruse Huff saw Hyman's stuff over the last month or so and probably went, huh, more woo, big surprise. Functional medicine. Gotcha. Hidden inflammation that can't be tested for. Gotcha. The whole post selling Hyman's cure and hyperlinking back to his website and his products. Gotcha. Absolutely gotcha. Dude's got all the answers on autism and only he can save your child. And make your child totally normal. Alrighty then.

Functional medicine = quackery. And once again it ain't about the kids.

Kumbaya.

Gotcha.

13 comments:

Thelma said...

Ain't that somethin? Them age of fools over there are calling people who disagree with them sheeple. Sheeple! Yup, it ain't about solidarity buildin or winnin folks over, neither, not when ya are callin em sheeple and then goin on about how babies are exposed to chemicals from conception.

Sure enough, we is chemicals, ain't we?

Gotta say they is hitting some consistently low notes

Mom26children said...

Kim,
Kim Stagliano is a very sad and unhappy person.
Her little "yuppy world" fell apart when she had children who took up too much of her precious time.
The only time I ever "throw up a little in my mouth" is when Kim Stagliano makes stupid little remarks about the "ND" and what she doesn't know about.
Last night, my 12 year old looked at me...I said, WHAT ?
She said, "I want to thank you for not wanting to "fix" me.".
I said, "Thanks...you understand that I think you are perfect, right?"
She said, "Yep"....
'Nuff said !!!

cawill said...
This comment has been removed by the author.
KWombles said...

Sigh. I'm going to let Jeanette deal with most of response to her.

Craig,

I think you're so angry right now that you're reading more into that statement than is there.

It does not sound like things are well for you and yours and my heart breaks for you, sincerely. I know your family has had a very difficult year and the stress has to be so tremendously straining. I would do anything to ease that for you, to be a supportive friend to you, so that your load is lightened.

I hope that, angry as you are, that you are not missing the point in what I write and placing me within the content of that rant.

NightStorm The Aspiewolf said...

If you don't want to "fix" your high functioning child, fine. I have no problems with that. But quit saying that children like mine shouldn't be "fixed." I don't care who you are, but NO ONE should have to live like that.

I hate this assumption that AS and HFA have no problems it's fucking asinine.

But stop telling me that I need to love my son for who he is and not try to "fix" his autism.

Because turing your child into a symbol of martyrism and your own self-pity is totally healthy and acceptable. I mean! You can use it like Jenny and turn your kid into a marketing tool! YAY EXPLOTAION =D

If you think Aspergers is all light and roses and sunshine coming out of your butt, then fine. Split it up. Take Aspergers out of the spectrum. Split up the various ASD's.

I have gut wretching cramps, I wake up screaming from night terrors. I stim for hours at a time (Funny enough I got some ankelts with bells on them so when I stim I jingle) I had to keep my hair short because I use to eat it. But you know what? I don't sit and stew in self-pity and grief. I take melatoin to ease sleep, I do yoga and breathing exerises to deal with social anxienty (so I can stay employed) I take ginger and tums for stomach issues.

I treat what needs to be treated. They are called comorbids they are not part of autism and I could go one but it's going to be going through one ear at out the other.
.And, worst of all, I must be Satan incarnate because I would like for my son to look me in the eye and say ANYTHING.

Why the hell is that so fucking important? Fucking american culture. Eye contact=/=communication. I use give "eye-contact" to people growing up. But I was really looking behind them.

Wow I forgot how shallow people are.


And yes. I am an unapologetic asshole. And no it's not because I lack empathy. It's because I'm an asshole.

People like you are the reason I don't go to AoA.

Mom26children said...

Thank Kim,
I can respond to Craig myself...

Craig,
My 12 year old was at one time, the worst case of Autism that her pediatric neurologist has ever seen. She does not have a diagnosis of Asperger's, but Autism.
She is now 12 years old and fully inclusioned. She attends regular 7th grade classes and is in the SCORES program for support. She continues to need OT and Speech therapies for her speech and sensory needs.
Our 12-year old has worked very hard for her 12 years of life to overcome a lot of her issues. She still works very hard. When she could not read in kindergarten, they were going to hold her back. She worked hard all summer to reach 1st grade level. She surpassed that level. Today, she reads 2 grades above her level. When she could not ride a bike without training wheels, she practiced on the grass for days, until she perfected her bike riding.
She does not give up, and I am so very proud of her for her perseverance in everything.
Our oldest and youngest children are still severely autistic. Everyone who works with my children, including me and my husband, work very hard. NO less harder than those who practice biomedical interventions...that is what PISSES me off.
The managing editor over at AoA makes it seem hunky-dory to bash the "ND" parent by saying that we sit and do nothing for our children. We work our asses off to make sure our children with autism are accepted into the community through inclusion (and that includes inclusion everywhere). We fought very hard to make sure our children are allowed to receive the same education as a child who is "normal". We have made sure our children are able to play baseball, ballet, gymnastics (this was not easy to do 16 years ago, when our oldest was 1 in 10,000. She was not welcome at any extracurricular facilities).
We do not use the excuse that they have autism to excuse their behaviors. We never slapped a tee-shirt on them to excuse their behaviors as autism. We removed them from the situation that made them uncomfortable.
Our oldest had horrible bowel troubles as a child. We treated the bowel problems by a legitimate doctor. She has not had any problems since she was 9 years old. The bowel problems were not her autism, but GI problems.
Our youngest also has GI issues. We deal with them.
I get the anger...I really do. I have been there. I had to make a decision to let go of the anger. My kids are much happier because of it, believe me.
I did not call Autism a "Gift"....I do call my children a "GIFT"...and that is what they are.
I did not let autism make them any less than who they are. I do not let them use autism as an excuse to be less than who they are.
Please do me a favor. Do not diagnose my children, which by the way, you have never met.
We have had a wonderful set of doctors, through the years, diagnose my children.

For the past 4 years, I have been blogging. My blog is about how children with Autism can get better without the need for biomedical interventions. We have a house full of children who have improved dramatically. You don't hear that over at AoA, because it would not sell their pills, Hbot, chelation, OSR, or other supplements.
What I do get is "your children aren't really autistic".."you don't know what autism is"..
What I do have is Autistic children who are thriving in our community with the help of dedicated therapists and educators who would not let them be any less than who they were born to be.

KWombles said...

Nightstorm,

Well communicated; I'm still chuckling about the unapologetic asshole remark. As I've read Thelma write, sometimes an ass is just an ass. :-)

Craig,

I know you're angry, and I understand it. I hope you'll be able to find your way out of it to something approaching peace. I believe, though, that as long as you surround yourself with angry people that you will not move beyond anger. And that this anger and bitterness will consume you.

Jeanette, I knew you would; it just got me chompin at the bit, though. :-)

NightStorm The Aspiewolf said...

Well communicated; I'm still chuckling about the unapologetic asshole remark.

Well it's true. Sometimes I am an asshole, and I am person enough to admit that I do come across rude without using my AS as an excuse.

I just got so irriated with the assumtion that HFAs and AS autists have it easy. No. We don't. Just because we can communuicate clearer doesn't mean we have "quirky but other normal problems" I still have hard time sleeping, I don't get enough sleep. I still forget to eat. I took me over two years to find work. We struggle and most frustrating part of it all. When we do have something to say. No body listens.

I wonder if Non-verbals "get it" more so then us verbal autists. They already realized that once they start talking nobody would care. =/

kathleen said...

Nightstorm..it is one of my biggest goals to teach people to listen..Jeanette-well said-I think and feel and do in much if not all the same ways..How tiring this argument gets..this"you don't know what it is like" shit. I find it all very disconcerting.
My kids are going to be adults one day-how can I ask them to be in a world that doesn't accept them, sees them as less, lost, broken or some such nonsense as that?
I would never diminish anyones pain or struggle..I will however question their logic when that is all they ever see or focus on. It appears to me at times that AoA perseverates only on the tough times. What good can come of that?
I would love for a study done on the real cost of all the therapies that they push. I constantly hear about the cost of chelation and Hbot to the families. How people have spent tens of thousands of dollars on these things..and in the same breath they scream about the monetary focus of big pharma..it just doesn't make any sense.

NightStorm The Aspiewolf said...

I would love for a study done on the real cost of all the therapies that they push. I constantly hear about the cost of chelation and Hbot to the families. How people have spent tens of thousands of dollars on these things..and in the same breath they scream about the monetary focus of big pharma..it just doesn't make any sense.

Which is the biggest hypocracy of it all Kathleen.

Chromesthesia said...

I have really bad IBS and trouble falling asleep at a "normal" time, ect. But focusing only on the negative makes things like that worse...
Like reading really frustrating political stuff is just going to make my stomach hurt MORE.
No one is saying don't help folks with autism deal with things like head banging and stomach problems and the like. What folks are saying is that autistic people need to be accepted and treated with respect and compassion.
I do think anti-Neurodiversity people are misunderstanding neurodiversity a lot and not looking beyond total anger and rage to see it clearly.
I think it's mostly about respect and compassion and acceptance. Which are good things that are needed for everyone, but some anti-neurodiversity people are twisting it.
Which is very annoying. Stop doing that, please.

Corina Becker said...

I'm assuming that cawill is Craig, given by the responses directed to him. If I am wrong, please excuse me. Also please excuse while I refer to him by his first name.

Now, Mr. Craig, you seem to be misinterpreting things about neurodiversity, please allow me to go through your comments.

I guess I am a horrible father for wanting my son to feel better.
I'm sorry, but no one has said that you're a horrible father. You do seem eager to receive
and look for criticism though, and I suppose it is easy to take offense when maintaining a negative outlook.

I'm horrible because I don't want him to bend over things, pressing against his belly because his cramps are so painful. I must be the worst father in the world for not wanting him to bang his head against the wall because he is in so much pain. I'm a terrible person because I won't let him bite his arms until they are a mass of black and blue.
Okay, lemme just point out something: no, you are not a horrible father for wanting to ease your son's pain. Cramps are horrible; take it from one of the human population who has cramps for a week once a month as a natural part of the reproduction system. It's a LOT of pain.
However, GI problems are just as much a part of autism as menstrual cramps.

As for the biting and head banging, well, no one has said that these aren't problems. However, many of us recognize that these are behaviours and attempts to communicate, express or cope, and being able to understand the reasons behind them is a major step in providing alternative ways and stop the self-harming behaviour. This isn't curing autism, this is providing help and support.


And, worst of all, I must be Satan incarnate because I would like for my son to look me in the eye and say ANYTHING.
Just like NightStorm, I'm still wondering why this is such a big goal for many parents. I would think that communication in any form would be sufficient as a method of expressing a child's love to his parents. Surely a typed out "I love you" is just as valuable as a spoken "I love you", isn't it? Why is speech such a valued method of communication?

I don't question your love for your son. I do question your perception of what is autism though, since GI issues are not common with autism and are no where near being on the diagnostic criteria. How do you know what it's like to be autistic when you, as far as I know based on what I've read, are not autistic? If you are not autistic, then how can you even make judgments on what it is like?

Autism is not rosy. It is not a "special gift." And your comment is one of the main reasons that people like me get so pissed off at what we call ND's.

You would call me ND then. And believe me, it's not rosy. It ain't easy. But then, I've taken the time to recognise that life in general isn't easy. No one ever said that it was.
What we are saying is that we refuse to be negative and live obsessing over misery. Instead of being so, we are focusing on the positives and what we CAN do in order to lessen what we CAN'T do. That's what Neurodiversity is about, as well as asking that we be accepted as people, people with different abilities and disabilities than the norm, but people nevertheless, and be treated with respect and compassion.
When you say that Neurodiversity is not this, you are not paying attention to what we are saying and making up your own version, which is a lie. Stop it.

If you think Aspergers is all light and roses and sunshine coming out of your butt, then fine. Split it up. Take Aspergers out of the spectrum. Split up the various ASD's.

Sorry, not going to happen. In latest studies, it has been shown that the only real difference between autism and asperger's is the quality of skills and the fact that most of us with asperger's don't have speech delays. Otherwise, we have the same problems and the same difficulties and exactly the same thing as Autism Disorder. So, no.
Not that it was really up to us to begin with.

KWombles said...

Corina,

An excellent response.

Cawill is Craig, yes.