12/31/2009

Not Even a Goal: When You Want Something That's Impossible

"THE YEAR WAS 2081, and everybody was finally equal. They weren't only equal before God and the law. They were equal every which way. Nobody was smarter than anybody else. Nobody was better looking than anybody else. Nobody was stronger or quicker than anybody else. All this equality was due to the 211th, 212th, and 213th Amendments to the Constitution, and to the unceasing vigilance of agents of the United States Handicapper General." from Vonnegut's "Harrison Bergeron"


Collectively, the ladies of RFID talk alot about respecting people in their infinite diversity on our various blogs. We also write about folks going down the woo trail and we spend a fair amount of time debunking the snake oil salesemen who would take advantage of those desperate enough to go down that woo trail. To these things, Kathleen and I write about our children and Thelma and Louise write about their family and community, where we celebrate how that diversity is exemplified in our lives. We don't put a rosy glow on it; we don't pretend that things are easier than they are, nor do we suggest that having children on the spectrum is any easy road. We darn sure point out that it's not easy being a parent, period, and that there are no guarantees, regardless your child's perceived perfection.

We like to kvetch about things, but it's usually about how others are kvetching unreasonably or doing things that are flat out foolish. Over at the latest RFID post, we've seen lots of interaction with two of the autism community's more dispeptic individuals (three of them have shown up and commented, but of course someone couldn't keep from hurling insults regarding people's sexuality--to our way of thinking there are only three other folks out there who are on the top 6 list, and to my knowledge, two of them don't read us).

One of these dispeptic individuals is well known for his flyby postings and inability to actually comment to anything actually written. The other does the same thing comment-wise; he just keeps coming back. Lurker wants a utopia where everyone is the same, no one with gifts, talents, abilities that everyone else doesn't have. Vonnegut's story concerning that world more than covers how I feel about that idea of making people literally equal: the same. Lurker is the only person I know of in the internet autism community who espouses such a truly bad idea. Whether he believes the rhetoric he puts forth or if he's just in it to get a rise out of people, I can't say. If you've missed his rhetoric, the latest RFID post has a more than  adequate demonstration of it.

I've, of course, covered this ground with him before, as with Roger, and here is that post, all the way back from July:

 Restatement of my Position regarding Autism


Lurker and I have been having a nice exchange in one of my blog posts comment section. I'm going to rework one of my responses so that brand new readers inclined to think incorrectly about my positions can have a simple position statement. I thought I'd been fairly clear, but hey, I can add to it for those who have questions.

So, to my previous post, http://counteringageofautism.blogspot.com/2009/07/and-yet-again-i-am-twisted-thank-you.html, readers can add the following:

I believe in OT, PT, speech, sensory integration therapy, play therapy, ABA/cognitive behavioral therapy and other evidence based therapies, although my children have not used all of them. (Or at least, that if done correctly, they may be helpful while having no chance of harm to the child.)

I support parents who choose to use medications to treat symptoms (having been there and done that; it at least has decades of clinical evidence behind it as well as some double-blind studies-- I would not choose it at this time with my children and their particular behaviors), vitamin suppliments (but not megadoses), and specialized diets for children with additional food allergies.

Since I do not believe that autism is heavy metal toxicity, I do not condone chelation. I do not condone lupron. I do not condone HBOT.

Reaching out to adults on the spectrum, to other parents, whatever their beliefs on the cause of autism is the right thing to do. Calling folks on their BS is also the right thing to do. Ideally it can be done tactfully and some consensus or at least an agreement to disagree can be reached. And we can all still gather and sing kumbaya.

Not wanting a cure, at least not in the way you (Lurker) appears to mean, since it appears obvious where your beliefs lie, doesn't mean I don't want my children and other children with autism to receive every effort to help them achieve independence and satisfying, fulfulling lives.

It means that I acknowledge that autism is a neurological condition, not vaccine injury, that is primarily genetic and set by birth (and in many cases caused by in utero trauma) and that the effects of autism in and on the brain are systemic.

So, no, I won't trade a cure for who my children are. We are our neural network. I'll bust my ass to give them the tools they need to do well in this world while working to make this world a safer, softer place for them.

I don't particularly care if that means I get lumped into some fictional movement that exists only in the minds of some truly angry and emotionally disturbed individuals.

I've said what I stand for, and I've been consistent, minus the one typo in a comment where I said I wasn't for therapy (obvious to anyone who read the comment that it was a typo).

That doesn't mean I have the same ideological stance as everyone I talk to and choose to publicly admit to reading and following. After all, I apparently spend a great deal of time reading AoA.

And this particular blog would never have existed if they would have engaged in dialogue. They choose to moderate heavily, in essence, censoring.

Anyone is welcome here at this blog and posts without moderation.

So you tell me who's more inclusive? Who's willing to engage in discourse?

And to respond to Lurker's comment about equality -- "I mean equality in how much mental capability to learn and in amount of ability." -- I'm sorry, but that doesn't exist in neurotypicals. We are all different, born with varying degrees of ability. That kind of equality isn't possible, nor should you want everyone to be evenly matched as you seem to be defining equality. Read "Harrison Bergeron" and tell me you'd be for that.

Two Absolute Must Reads

3laine's post "But you LOOK "normal"!!" is an excellent post  (when are they not?), so I hope folks will take the time, if you haven't read her blog before, to take the time to read it.

Life as the Mother of 4's latest blog, "The Great Divide: Trying to Figure out the Neurodiversity Movement" is an insightful post, looking at neurodiversity from an outsider's perspective, and also well worth the time. I enjoy reading her posts; she's funny, heartwarming, and someone I look forward to getting to know better over time.

As this day ends, and the last day of the year begins, let me say that I hope everyone's year ends well, that you can all look back and see progress has been made in your lives, in your children's, in the change you wish to see happen (well, unless the change is woo, but I still respect you and wish you well!).

12/29/2009

Mulberry Bush: Explaining Neurodiversity Again (Because Roger Won't Grasp It)

Today, Thelma wrote a piece at RFID where she provided our position on neurodiversity:
Neurodiversity Accordin to the Ladies of Respect for Infinite Diversity:


1. People, all people, are valuable and deserve to be respected. Now, that don't mean we don't call a dumbass a dumbass, but godamighty, we do it with respect for the innate value of the dumbass at hand.

                   Don't mean we tolerate abusers, though, or think folks got the right to do    whatever  pleases em. Ain't about that kind of thing. Ain't about toleratin folks who spread hate. Who hurt others. Who victimize others.

2. People, all people, should have equal rights and equal protection by law.

3. People, all people, should have equal access to society, to all public places.

4. People, all people, should have access to the treatments and services that will help them participate as fully accepted members of society.

5. People, all people, should not be discriminated against, nor belittled, begrudged, abused, tormented because they are different. Ya can, however, tell a dumbass he's a dumbass as long as ya provide evidence.

6. People, all people, deserve to have their humanity recognized, acknowledged, and appreciated.

That's what neurodiversity means to the ladies of RFID. It means we care, it means we accept, it means we bust our bodacious bosoms and ample arses ta make the world a better place. We widen our circle of friends and we offer moral support and love an appreciation ta those out there who want a soft place to be.

 
Thelma was even kind enough to note that this included Mitchell, Roger, and Best. Roger, of course, had to weigh in and prove that he's still got some tremendous problems actually arguing the points at hand and still prefers his magical mystical and completely made-up neurodiversity. So, I tried explaining again, to no avail, and it occurred to me that I've been there done that with Roger time and time again. I got to looking through my posts over here and found a piece I wrote in response back in August, and it still weathers well. It also shows clearly that in nearly five months of frequently visiting this site, Roger isn't comprehending what I write or he wouldn't rehash the same old, tired, incorrect and utterly offensive arguments with me.
 


Roger Kulp raised some very interesting points and questions in a comment on my magical, mythical neurodiversity movement blog, and I'd like to take the time to answer it in detail.


Roger writes:

"I gotta say you are one of the saner ND bloggers I have read, you and John Elder Robinson, although I have no idea what a "woo fighter" is."

I appreciate that Roger, but I wish that people wouldn't put a label on what kind of blogger I am unless they are using ND the way I would: equal rights for all, acceptance and appreciation for all. That's not how most folks who label themselves as anti-ND are using the term (I'm not placing that label on you, just noting how those who do label themselves that are using it). So, if you meant ND in the way I and many pro ND define it, then that's fine.


A woo fighter is someone who fights against woo, which I will provide several definitions for:

n.(or adj), the way a person is when they uncritically believe unsubstantiated or unfounded ideas. Short for "woo woo." http://www.urbandictionary.com/define.php?term=woo

Skeptico also has a good definition here: http://skeptico.blogs.com/skeptico/woo-woo.html.

And I have defined it in the HBOT blog below: Woo, for those who don't know, is any treatment, therapy, belief, in something that has no scientific evidence to back it up. None. Like crystals for healing. Acupuncture. Homeopathy. Some woo is harmless. Some is not.

"I saw a post today over at "Thelma and Louise's" "dumbass" blog,that said those who don't support neurodiversity just "have too many problems", which pretty much sums it up."

That's a complicated one. Isn't one of the greater problems that folks who are against it are using a different definition than the one I provided, saying it means doing nothing for people who have disabilities to help them improve, to do better, to have the support they need. You cannot hold that people are of equal value and human dignity and then not help them. At least, I don't think you should.

"I can assume your own children just had plain old garden variety autism, and never had to deal with regression, intellectual disability,autoimmune,or mitochondrial disease in addition to the usual addons like seizures,developmental delay, and sensory disorder ?"

Roger, if you've read my blog posts, then you'd see just how wrong that assumption is. I would direct you to Detritus, http://www.kwombles.blogspot.com/, to read some of my personal pieces. Developmental delay is what autism is: it is a pervasive developmental delay. My son does have an intellectual disability, and all of my children have sensory issues. My son has a blood clotting disorder as well, and had a stroke at the age of 9 and is at risk of additional blood clots which could result in DVTs, pulmonary embolisms, and strokes.

Epilepsy is present in about 1/3 of autistics, so while more common than in the general population, it is not an inherent feature nor what I would call a usual add-on. Auto immune and mito disorders in relation to autism are still fairly new concepts, despite what those at AoA would like to argue. Mito disorder estimates are at 7% in autistics. I think I would need to wait and see the studies over the next several years before reaching an opinion. So, again, I would not at this point be willing to say they are usual add-ons. Since I have not had my children tested for mito disorders, I can't speak to that. They are healthy children, though, and show no signs of autoimmune disorders, although autoimmune disorders run in my family.

"Would you still believe in neurodiversity if your children had all of this stuff in addition to autism ?"

Would I still believe in equal value, equal human dignity, respect, acceptance? Yes, I would. Would I still believe in doing everything I could to help my children achieve their potentials, to be successful in their lives, whatever that definition of success would be? Yes. Do you see how incredibly offensive it can be when someone accuses you of believing, following, advocating a position you do not? Where have I ever written that I believe that particular distortion of neurodiversity that proponents of anti-ND are putting forth. I never gave myself a ND label. I never labeled myself. And I've argued that anti-ND/ND and vaccination/anti-vaccination are artificial divides constructed by those who want to see the world in black and white.

"IVIG is a good example of something that is overused. It should only be used for those who have both autism,and demonstrated autoimmune symptoms. Most mainstream doctors will require an ironclad textbook diagnosis of a specific autoimmune disease,before they will give you IVIG. If I am any indication, autoimmune disease in autism is a patchwork of random autoimmune stuff from various syndromes,but nothing specific. You would have a hard time finding a non-DAN! doctor giving you IVIG for this,but a DAN! would. The pattern is that the autism symptoms always are worse in between febrile flares,and disappear when a fever comes on, like I have now. So IVIG in some cases, yes, chelation no."

There is a study showing that autism behaviors lessen during fevers. I'm sure there is also a plethora of anecdotal evidence noting that children with autism have less behaviors when they are sick. It doesn't mean I want to make my children sick so they are easier to handle. In fact, with my son, sudden stillness and quietness was always a huge warning signal that something was wrong.

Here is why I wrote I am against IVIG for autism:

http://jcn.sagepub.com/cgi/content/abstract/13/2/79

Audrius V. Plioplys Intravenous Immunoglobulin Treatment of Children With Autism J Child Neurol, February 1998; 13: 79 - 82.

"Given a positive response rate of only 10% in this study, along with the high economic costs of the immunologic evaluations and the intravenous immunoglobulin treatments, the use of intravenous immunoglobulin to treat autistic children should be undertaken only with great caution, and only under formal research protocols."

"After spending a few weeks in one of their Yahoo! groups, I can say. The chelation people are the most fanatical of all."

I stay away from the yahoo groups and forums, other than the yahoo group I created --woohoo, member of one! -- it's dormant, as I shifted attention to sciencerocks.proboards.com, the countering facebook group, and Raising Autism. I've heard plenty negative about various forums. It's why my friends and I created the Countering facebook group and Raising Autism forum for parents with ASD children and people with ASDs to get together and be supportive, accepting, and share. You're welcome at both.

"I wouldn't be so hasty to knock HBOT. Look into it for other neurological conditions if you don't think it works for autism.Get your information from a nonautism source."

Please see my HBOT blog below. If I weigh in on a particular treatment or therapy in relation to autism, it means I have actually read the scientific literature on it and based my decision on the studies that have been done.

"I can see biomed for conditions like mitochondrial or weird autoimmune diseases,where the medical issues contribute directly to the severity of the autism, but what gets me are these fanatical parents who do biomed for simple mild Asperger's. I met a man online in his early 30s, a few months ago,whose autism was strikingly similar to mine. He even had some of the same immune,and regression issues that I do.His autism was triggered by Lyme Disease when he was eight months old, the way mine was triggered by meningitis when I was five months old, so it can happen."

Roger,

I don't believe I've said I'm against biomed. In fact, I've stated I'm for treating underlying medical conditions with evidence-based medicine and nutrition. I recognize that medicine is part art and part science, so there's some latitude there. I'm against those extreme parents co-opting the biomed label and arguing that IVIG, HBOT, chelation and unproven quackeries are biomed.

By choosing to label parents as either biomed or ND, the "biomed" parents are creating a false divide and making themselves the stars of their own plays. It's no longer about their children. It's about them arguing they are the better parents because they would go to any extreme to "recover" their child. That's frakking offensive in so many ways. I don't have to recover my children, I don't think I lost them. And I think it's offensive to children on the spectrum to think that they have been lost, that they "died," that it would have been better if the child had cancer.

The closest I've come to labeling is when I use the label someone has already applied to her/himself and when I've called the parents who believe mercury caused the autism the mercury brigade. I can't claim originality there, as it is a label that has been applied to them by others. Or when I flat out call them a name. But then, I am being specific to the individual and I'm backing up why the person was called that name.

I hope that this answers some of your questions, Roger, as to how I have formed my opinions on this matter. As science advances, my opinions will absorb the new information and alter to fit the accepted science. To do otherwise, well, to borrow Thelma and Louise's apparently favorite word, would make me a dumbass.
 
** Some updating is necessary. I no longer stay away from many of the yahoo groups. If it's an open archived group, as is the autism-mercury group, then I have been looking in on them in the last month. It's just amazing the things you can learn in those places. Not necessarily good, but I am at least no longer naive in that arena.**

The Ladies of RFID Define Neurodiversity

Thelma's posted over at RFID on what neurodiversity means to the ladies of RFID. I hope you'll give it a look and chime in with your definition.

An Anti-Vaxxer Maven: Tenpenny really wants your pennies. And your dollars.

Dr. Sherri Tenpenny bills herself as "The Voice of Reason about Vaccines" on her Facebook fan page.

Her latest entry is more than mind-boggling:

"Study these numbers. We've had SARS, Bird flu and Swine flu. On average, approx. 190 children/year die from the flu. Considering there are about 62M kids under the 14 years of age in the US, this is NOT "statistically signficant" and should not even make the radar screen. See how they manipulate parents into vaccinations?
Next year, PLEASE do not be afraid of the flu. Ever person here should pass this on to at least 25 people! Please pass this to at least 25 friends."



She links to the CDC's latest weekly update with this statement, which is more than a little jarring since the report, which I will detail, has nothing to do with what she's written. In fact, I would argue any rational person reading the two would conclude she didn't really read it before connecting it to her asinine comment. Of course, we reasonable people wouldn't also be selling woo on our website, either, would we?
The CDC weekly update doesn't deal with SARS, doesn't deal with bird flu; it deals with the number of confirmed deaths in one week, with the total deaths so far. 285 children have died (confirmed deaths) since April 26, 2009, from influenza according to this report. We are, in week 50, still above the epidemic threshold. The good news from the CDC is that deaths and hospitalizations for the influenza in week 50 are significantly less than in previous weeks.

 Contrast the CDC data to her remark. Can you find any commonality there? In addition, the idea that 190 average pediatric deaths per year is so insignificant that they don't bear preventing through a simple vaccination that carries very little risk (and certainly not the risk that the flu itself does) is barbaric. And it has little to do with the reality. The 285 deaths are confirmed, but the estimates for actual deaths are much higher. As of November 14, the CDC estimates pediatric deaths may be as high as 1550, and total death as high as 13,930. But Tenpenny doesn't want you to immunize. She's the voice of reason concerning vaccines, after all.

Orac took on Tenpenny back in August of this year, writing: "In case you don't know who these "luminaries" are, Sherri Tenpenny is an infamous anti-vaccine activist whose website, book (Saying No To Vaccines), book blog, and blog are chock full of vaccine pseudoscience. Heck, she even has her own page on Whale.to and has appeared on über-crank Alex Jones' show (he of Prison Planet) to lay down some fine conspiracy mongering about the swine flu. Yes, if I were looking for reliable information about vaccines, Dr. Tenpenny is someone I'd go to...not."

Science-Based Parenting also addressed quite ably Tenpenny's nonsense in August, noting her whopper of a disclaimer on her site.

Amazingly enough, Tenpenny has 7075 fans (adding 6 overnight!) on her facebook page. She's twice as popular as Age of Autism, folks! And at her store, you can buy cds, books, dvds, supplements, a $200 wellness kit,  neurotransmitter supplements that will only be sold with a doctor's recommendation (instantly making the cure-hungry, woo-hungry even more desirous of having the products!), and t-shirts so that you can walk around advertising that you're a dumbass. She also accepts donations, of course. :-) She's not a non-profit, though, so I wonder how those donations get included in the tax returns? Hmmm.

And lest you think that Age of Autism's writers have the clear advantage of being the only ones off the deep end, all you have to do is peruse some of Tenpenny's writings to realize she's so far out in left field that she's not even in the ballpark.

From November 3:

"It continually breaks my heart that people have to take a bullet to the head before they find out bullets can be deadly...and they wish they had listened when they were warned not to play with loaded guns."

For heaven's sake, getting vaccinated is not taking a bullet to the head.

"I have a little person in my office who had 10 rounds of antibiotics and 17 vaccines by 20 months of age. Yes, now autistic. That should be assault with deadly weapons and the doctor should be in jail."
Little person? Hmmm. I'm going to translate that as child instead of dwarf. 10 rounds of antibiotics before 2 years old. Sounds like a child who had a lot of infections, was sick a lot. 17 vaccines. For 17 different diseases, or 17 different boosters? I love the implied: antibiotics and vaccines made the kid autistic. It's the only reason to include the antibiotics in the sentence: they get the blame, too. And then to go from the bullet in the head in the first paragraph to the "assault with deadly weapons and the doctor should be in jail"? That's so over the top, it's damn near priceless.

You do enough digging on the site, you realize that the only way to get those neurotransmitter supplements is if you are a patient of Tenpenny's. But don't worry, she gives a free 15 minute phone consult for potential new patients.

Selling patients supplements and other non-prescription health care products from their offices is not illegal in many states. It probably ought to be, and it certainly explains all these practioners who are making big businesses from doing so. Here's my personal opinion on this: any doctor to whom I've gone to for assistance in managing my health who tries to sell me something and directly profit off of recommending something is not a doctor I will go back to. Once the doctor has a financial stake in trying to get me to use a product, he is not an objective health care manager.

Tenpenny, and others like her, are profitting off of desperate parents. She goes beyond the autism angle, and it may be why she has double AoA's following. She appears to be aiming towards Mercola heights.

12/28/2009

A Sexy Voice Only Gets You So Far When it's Used to Express Self-Righteous Stupidity, Deepak Chopra

So, in his latest Huff-n-Puff piece, Deepak Chopra admits to being full of the woo woo and thinks it is a step ahead of Shermer's bad science. Le sigh. I tried to get a comment on, but oddly enough, it didn't get through. I can't imagine why. All I wrote was something to the effect that Deepak appeared to be mighty bitter in some of his latest pieces and how odd that was for someone on the path to enlightenment.

I'm going to run an informal experiment here based on Chopra's piece "The Perils of Skepticism," where Deepak writes: "If you've ever used Google Alert, you know the jolts it can deliver. Whenever anyone in the blogosphere decides to blow a poison dart your way, Google is happy to deliver the news, along with the more positive mentions, of course." I tried this on my wordpress blog, Ionization Energy, after signing up for google alerts for Deepak Chopra and it never showed up. Maybe this blog will? I mean, I'd hate for Deepak to miss out on my post.

Now, let me tell you, after a week of getting Deepak Chopra google alerts in my email box and wading through them, a lot of people write about this guy and way more of it is positive than negative. First off, it makes his bitching and whining all the more odd. Secondly, he's rolling in the dough, which I can only assume was his goal, so his being mortally offended that scientists and skeptics aren't impressed with his woo seems more than a tad bitter considering what he's selling.

I happened on this youtube video of Dawkins and Chopra yesterday (thanks to this blog); thank the cosmos that Deepak admits he's not really using quantum physics, but his own metaphorical idea of quantum theory. He sounds almost reasonable until he accuses scientists of "hijacking" his idea of quantum theory, never mind that quantum mechanics predates him.

In his latest drivel, Chopra writes: "For those who aren't familiar with the term, "woo woo" is a derogatory reference to almost any form of unconventional thinking, aimed by professional skeptics who are self-appointed vigilantes dedicated to the suppression of curiosity."

No, woo woo is not a "reference to almost any form of unconventional thinking." It is, acording to The Skeptic's Dictionary, "ideas considered irrational or based on extremely flimsy evidence or that appeal to mysterious occult forces or powers." I'll grant that it may be derogatory, considering this site continues its definition: "When used by skeptics, woo-woo is a derogatory and dismissive term used to refer to beliefs one considers nonsense or to a person who holds such beliefs."

Chopra on Shermer: "The latest barrage of name-calling occurred after the two of us had a spirited exchange on Larry King Live last week. . Maybe you saw it. I was the one rolling my eyes as Shermer spoke. Sorry about that, a spontaneous reflex of the involuntary nervous system."

Really? You're going to excuse your eye-rolling as a "spontaneous reflex of the involuntary nervous system"? I don't think so.


There is so much bitchy and whiny with Deepak's post that it's hard to know where to dig in. Take this, for instance:

"All are deemed irrational by the skeptical crowd. You would think that skeptics as a class have made significant contributions to science or the quality of life in their own right. Uh oh. No, they haven't. Their principal job is to reinforce the great ideas of yesterday while suppressing the great ideas of tomorrow."

The first sentence is referring back to the Pope and others who believe in God. Okay. What's his point? His second sentence has been shown to be false by many people many times, although I suppose his lumping skeptics into a class is a way around this? What is he designating a skeptic, by the way, and why does he hate them so?

From his Perils piece, he defines skeptics as "ill-tempered guardians of scientific truth can't abide speculative thinking." Are you kidding me? Scientists are the ultimate speculative thinkers; they come up with novel hypotheses and test them, then refine their ideas and retest. They are full of curiosity about the world and how it works. They are grand bullshitters, but unlike Chopra, they are show-me people. They want to prove it, hold it, touch it, figure it out. They are rationalists. Chopra loves to call them mechanistic (see the youtube video or his response to Dawkins). Mechanistic. That's his criticism of those who think his quantum theory co-option is the bullshit that it is. And what is Chopra if not materialistic? How can he defend himself against that accusation? Has he not grown rich off of feeding into people's need for woo? 75 grand per speaking engagement? Are you kidding me? Seems to me he's quite mechanistic in his selling of the transcendent.


Chopra continues: "For we have reached the state where Shermer's tired, out-of-date, utterly mediocre science is far in arrears of the best, most open scientific thinkers -- actually, we reached that point 60 years ago when eminent physicists like Einstein, Wolfgang Pauli, Werner Heisenberg and Erwin Schrodinger applied quantum theory to deep spiritual questions." WTF? Where is his support for this? Ack. Which is it, did they co-opt your whole quantum theory before you were around to hawk it or are they the true originators of quantum spirituality?


It doesn't get better, unfortunately, and I at least reach the point of where a sexy, exotic voice no longer outweighs the bitchy woo-diocy that Chopra is selling: "Skeptics feel that they have won the high ground in matters concerning consciousness, mind, the origins of life, evolutionary theory, and brain science. This is far from the case. What they cling to is 19th Century materialism, packaged with a screeching hysteria about God and religion that is so passé it has become quaint."

Chopra, you need to breathe and decide why, when you're still raking in the bucks from folks buying into your special brand of mysticism, you're so frakking bitter over this. Scientists follow the scientific evidence available. Responsible scientists don't deal in absolutes. They are interested in the evidence. Do they "believe" based on the evidence at hand that science better understands some things than do the proponents of woo? Hell yes, they do. They have empirical evidence to back it up. Where there is none, they admit that it's theory and bullshitting at its finest. Scientists can be an arrogant lot, but they tend to have some real hard data to back up that arrogance. What is your excuse exactly?

Chopra came back to the newest post at Huff and added a new paragraph:
"What I am really addressing here is the brand of professional skepticism that Shermer stands for that borders on cynicism and which leads to a rigid attachment to materialist science. It is the cynicism and prejudice that refuses to explore the new frontiers of neuroscience, genomics, epigenetics, information theory and the understanding of consciousness that I am speaking to."


Anybody else notice how close "professional skepticism" is to the anti-vaxxer's pharma shill bit? Also, really? What scientists aren't willing to examine "the new frontiers"?  All those fields of science are a far cry from Chopra's quantum theory of consciousness and his embracing of biocentrism.

For an excellent deconstruction of the latest Chopra piece, see Veritas Nihilum Vincet.

And if this doesn't return a google alert for Chopra, what the hell will? I used Chopra's name as much as Thelma uses dumbass. :-)

12/27/2009

Marriage and Autism: Whatever happened to Journalists Actually Fact-Checking? Updated


Most of this is an older article I wrote on the inaccuracy of the oft-repeated 80% divorce rate.
A new study out of Kennedy Krieger Institute today shows that this statistic is emphatically not correct: “64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.” According to the website, researchers came up with these figures from “ data from the 2007 National Survey of Children’s Health[1] , they examined a nationally representative sample of 77,911 children, ages 3 to 17.”
This a myth that is prevalent on the internet and was even repeated by an Autism Speaks presenter at a conference I attended this spring.
One place this myth is presented is at The News on “The Faces of Autism” by Adam Richardson. Granted this is a fairly old piece, dated May 2008, but it’s still relevant, considering the tendency of many writing on autism to engage in quasi-journalism and quoting (and it could be argued the making up of statistics to suit one’s purpose). Richardson writes of a mother with an autistic child: ”Lindblad says more than 80 per cent of marriages with an autistic child end in divorce. She’s living proof.”
Does Richardson ascertain the accuracy of the statistic? Nope. He presents it again at the end of the piece and makes no distinction as to its accuracy:
“FACTS AND MYTHS ABOUT AUTISM
• The divorce rate for autistic parents is over 80 per cent.
• Not all autistic individuals possess special skills and genius abilities. Movies like Rainman created a stigma around the disorder. Less than 10 percent possess “savant” abilities shown in the popular Hollywood movie.
• Not all autistic individuals are withdrawn, avoid eye contact and engage in self-injurious behavior. Many are outgoing and work well within groups of children.”
So, is this 80% a fact or a myth, Mr. Richardson? Do you know or care? Garbage reporting like this seems to be, gasp, epidemic.
Of course, the whole autism ruins marriages and just about everything it touches isn’t new. Kristina Chew wrote more than once on the myth of high divorce rates for parents of autistic children back in 2007.
Lisa  Jo Rudy at Autism.about.com has also touched on it in the past, writing:
“In short, while I don’t honestly believe that 80% of parents with autistic children divorce (because there’s no basis for that figure), I certainly DO believe that 80% (or more) are often under extra stress.” Rudy covers today’s study, noting that Disability Scoop has reported on the study’s findings.
Why do people rely on what research shows for one set of numbers and then pull out another set of numbers with no backing? And the comments are even more illuminating and proof that people rely far too often on the availability heuristic. If it’s easy to recall, then they believe it is true and representative. It’s sort of like the global warming thing: it can’t be real because it’s colder than usual where I live. Folks, there’s a reason scientific evidence trumps anecdote.
*This 80% figure is all over the internet. Susan Leiby throws it out there in an effort to get families assistance by appealing to pity: “80-90% of marriages fail when a child with autism is involved.” Another newspaper uncritically runs with the figure, as well: Denise Ryan in The Age writes with no substantiation: “As well, up to 80% of marriages fail in households where a child has an ASD.”
It keeps going, though. At TACA, Mary Romaniec writes: “The divorce rate in couples who have a child on the spectrum has been suggested to run as high as 80%.”
There seems to be a never-ending parade of folks who like to say statistics say blah blah. I completely get where the Freakonomics authors were coming from as they pointed out the pedophile numbers. Here a minister’s wife passes along the bad information: “Statistics estimate that 80 percent of marriages that have a child with autism fail.” No statistics don’t say that. Another urban legend is born.
This alone ought to make it clear why scientifically-minded folks tend not to rely on Joe Blow saying something. It’s usually bullshit.
And sometimes it’s bullshit that reaches all the way to governmental bodies, like Australia’s Parliament, where Don Randall uses the made-up statistic : “Parents of children with autism face immense challenges. Aside from the care of their child, the resulting stress is enormous, and studies show that up to 80 per cent of
marriages where there is an autistic child fail.” Come on, people! Studies say. Statistics show. Where’s the actual studies, the real statistics? You heard it and it sounds good. It makes the folks who stay married appear all the more heroic and it makes it so much clearer that autism is a burden that ruins lives, right, if 80% of marriages collapse under the weight of autism?
Oh, look what I found: National Autism Association spreading the bull: “The divorce rate in the autism community is estimated at 80%. In an effort to help keep families together, NAA is developing a new program that will provide marriage counseling to parents of children with autism.” I thought they were going to confirm the number before using it?: “NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.” And this was all the way back in June 2007. It’s been 2.5 years; haven’t they figured it out yet? Well, as of this December, they decided to hedge it some and write: “Divorce rates are disproportionately high within the autism community. Government aide is needed for these struggling families.” They are, of course, soliciting donations.
Now, interestingly enough, in the NAA’s letter to Obama, those divorce rates: “Then again, skyrocketing divorce rates in the autism community really need our attention along with the fact that “autism” is just a word some guy came up with 70 years ago to describe a new, rare mental condition that we’re finding is actually more environmental.”
Again, high divorce rates make it so much worse, right? What does all this do? Prove that it’s about the blame-game, victimhood, everything and anything but about the autistic individuals.
Age of Autism’s loyalists buy into the whole thing kit and kaboodle; some of themeven elevating it to 85%.*
What are some realistic estimates of divorce rates?
According to the National Autistic Society, “Siegal (2001) suggests that the divorce rate for couples with a child with autism is the same as that for the rest of the population.”
Kevin Leitch weighed in on the subject this past March, and it’s well worth the read. Leitch discusses the Easter Seals’ survey and its findings that showed that divorce occurred less in parents of children on the spectrum. Leitch also covers the new studyat Left Brain Right Brain.
Sobsey’s (2004) conclusion regarding divorce and parenting disabled children is worth repeating in full:
“In short, evidence for increased marital discord and divorce rates among parents of children with disabilities is weak and inconsistent. Many more parents of children with disabilities report positive effects on their marriages than report negative effects, and many others recognize that having a child with a disability has little to do with the quality or durability of their marriage relationship.
There may be a very small increase in the incidence of divorce among parents of children with disabilities as compared to the general population, or there may be no increase at all. Findings are weak and inconsistent. Even if a small increase in the incidence of divorce exists, it is probably more likely that this increase is attributable to differences in parents’ attitudes and behaviour rather than any effect of children with disabilities on their parents. Whatever the causal factors, many families with children, including many families of children with disabilities, experience marital discord or divorce. Whether or not having a child with a disability is a contributing factor in some cases, marital discord and divorce are difficult for all family members. Researchers should focus future efforts on understanding how children with disabilities and their families experience divorce and what can be done to assist them during what is often a difficult time in their lives.” (p. 80)
I sincerely hope that autism organizations get it right from now on, and that this myth ends. It does a tremendous disservice to families.
(Journal) References:
Siegal, B. (2001). Quality of life: preventing mental separations and legal divorce. What we (don’t) know about the effect of autism on divorce, Advocate, 34(2), pp. 26-29. Available from the NAS Information Centre
Sobsey, D. (2004). Marital stability and marital satisfaction in families of children with disabilities: Chicken or egg?. Developmental Disabilities Bulletin, 32(1), 62-83. Full text available athttp://eric.ed.gov/ERICDocs/data/ericdocs2sql/content_storage_01/0000019b/80/44/c2/a5.pdf
Web sources have been hyperlinked in the text itself. Siegal’s article was not directly referenced, but the quote taken from the NAS’s page.
(updated to link to Rudy’s coverage of today’s study) May 19, 2010

12/24/2009

Happy Anniversary

Today is Rick's and my anniversary. I've posted at Detritus, with pictures and everything from two decades ago. :-)


Here we are this year.

Nightstorm the Aspiewolf's Art

Nightstorm the Aspiewolf, like Corina, like so many of the wonderful friends I've made on the internet this last year, many of whom are autistic, is creative and artistically talented. She writes about Tikaani and Rahmet from Avatar the Last Airbender universe at the beginning of most of her posts.


"Whole World



 My autistic boy Tikaani, mascot of Prismsong. Safely sleeping"
 
 


"Thorrin


One of my dragon people, the drakkhani."




"Shame:


Rahmet, Tikaani's cousin. Shame is what keeps us clothed sometimes. "


If you would like to have your work, fiction, or art showcased here (or on Respect for Infinite Diversity) and on permanent display to the right, please email me at wombles@sbcglobal.net. Let this blog stand as a countering to Age of Autism in as many ways as possible.

12/23/2009

Corina's Art and Interview






Corina Becker is featured in Living With Autism Winter 2009, put out by Kerry's Place Autism Services; she's provided her full answers to the questions and some of her incredible artwork

What is the most rewarding thing about creating your artwork?


The most rewarding thing about creating my artwork, I think, is the process. To stand back and look at a completed piece, and to have it complimented is a great feeling, but I think it's the process that makes it the most rewarding. To create artwork is both work and fun. There are difficulties in getting the mediums to do what you want them to do, and trying to convey what's in my head onto paper or the screen, but at the same time, I absolutely love it. I love to play with the mediums, to see what they can do, to use them to express myself, to bring out feelings and thoughts and express them in colours and shape. I really don't think there are words to describe the creative process; it's so much of the artwork itself that it might as well be the artwork. But it's also being able to freely experiment, express and think beyond words. That freedom is very rewarding.





Does you relate to any of the characters you create?

Do I relate to any of the character that I create? In a way, yes and no. Like all artists and writers, I create characters and art from what I know, so bits and pieces of myself and my own experiences go into everything I create. However, none of my characters are me. Sure, they might have traits similar to me, but I have never thought of them as being me in a different form. It's a lot like a mother, I think, and her children. I can emphasize and try to relate to what they're going through, but they're not me, so I can't possibly fully relate. I try to, though; that's part of the creative process, to make a character, bring them "to life" and then do your best to relate and express them.




What is your favourite art media?

My favorite art media? Well, I love painting and ink. I use acrylics and watercolour. I find that they're very expressive mediums. With watercolour and ink, there's a level of impulse and lack of control that I love, since I often will just let the paint and ink do what they want and work with what comes out of it. It gives me a lot of vivid bright colours that I love. With acrylics, I love using it to build up texture and using that to sort of make the work 3D and more expressive. For my comics though, digital. I love the blending effects and smooth colours, as well as the ease to correct mistakes.




Goals and dreams for the future?

I don't really have any ambition for my artwork. Sure, I'd like to be recognized and do a lot more art, but most of my dreams is in my writing. Like most writers, I have the dream of being published, even being a bestseller, but it isn't the reason why I write. I write to tell stories, which I hope to finish and to share. And then I hope that someone else likes reading them at least as much as I do.

What you like about KPAS?

I like the way that KPAS as always been welcoming and supportive. I like the vibrant, positive energy I feel from KPAS, that promises support, understanding and community. From the moment I approached KPAS, I have always been encouraged to try new things, provided me with new opportunities, and yet supported me when I reached my limits, never asking me to do things that I felt uncomfortable or unsafe doing. My needs and wants are always considered and I've been involved and participating with the process of my supports. I am included and my decisions respected. The staff that I met are consistently positive and have made me feel safe and secure. Each of them, I consider a friend. I consider each of my experiences with KPAS to be positive and rewarding.

Any upcoming events?

Unfortunately, I do not have any upcoming events. Given that my executive functioning is generally dysfunctional, I usually only plan for a couple events in the future at a time. Right now is a pretty busy family time for me, and for each event I attend, I consider transportation as well as how it could affect my coursework before agreeing to attend events. Right now, I don't have anything planned, but I'm hoping that may change soon.

Corina's blogs are at http://neko-no-baka.livejournal.com/ and http://nostereotypeshere.blogspot.com/.

Lanza Through The Looking Glass

Having advanced degrees, having devoted one's life to scientific pursuits: neither of these guarantee a person will be rational or able to avoid slipping deep into the woo. It also is no guarantee of humility, unfortunately. Robert Lanza is, according to his bio on Huff Post, "one of the leading scientists in the world." The problem with this claim should be immediately obvious. According to whom is this Lanza a leading scientist, not just in the US, but in the world? The world!


Lanza has what he believes to be an impressive pedigree and pushes that pedigree as an appeal to authority as a reason to pay attention to his theory of everything, biocentrism. The leading scientist in the world gambit is one used in his press kit, so it makes sense that it bleeds to Huff. It also makes a great deal of sense that he's flooding Huff Post with his posts, pushing his theory of woo that takes quantum mechanics (and its application as a sci-fi favorite trick to allow main characters the opportunity to play quantum alters who are not heroes) and butchers it into something so full of woo-waahhh that it makes me peeved at the least (warning: blog post linked to involves adult language and an admission that Chopra has a sexy voice). He even brings in Deepak Chopra to sell it (repeatedly), so deep into the woo has this leading scientist gone. He may be crazy, but he's crazy like a fox. Chopra is popular and his special brand of woo-mysticism sells big. Lanza latching on to Chopra's coat-tails makes good sense.

It could be argued that Lanza's self-annointed pedigreed biography, replete with name dropping of all the illustrious men he's had the fortune to have worked with, like Skinner, Salk and others, reflects a life-long attaching to the coat-tails of more powerful men who could launch him farther into the heady heights of power. I'm not sure how well that's worked out for him, though. I can tell you this, his biocentrism leap down the woo-hole will not and has not engendered warmth, support, or respect from the scientific community.

This appears to be a rabbithole that Lanza was going down as early as 1992, in an article entitled "The Wise Silence," and again in 2007,where he was immediately smacked for his failure to grasp simple (okay, maybe not simple) concepts. Vic Stenger was there in 1992 to smack Lanza's ideas down, and it may have kept him quiet for 15 years (may not, more digging may be needed). His recent groundbreaking (and sarcasm is dripping here) article that launched this spiral down, down, down, to where Chopra was waiting to meet and embrace him this year at Huff, was published in The American Scholar in 2007.

He's not gone completely silent on the quantum woo, though. Lanza was interviewed in The Lancet (2005), where he was asked "Do you believe there is an afterlife?" To which he responded:

"A full understanding of nature cannot be found by looking
up at the sky through a telescope, or by looking into the
atom through a matter microscope. Space and time are not
external objects, but rather forms of our animal sense
perception. In that sense, Spinoza was right “The human
mind cannot be absolutely destroyed with the human
body, but there is some part of it which remains eternal.” (1767)

Bad as the 2007 piece is, his interviews make his overpreening arrogance more than readily apparent. Rowe (2007) asks Lanza how he thinks scientists will view this theory of his, to which he responds:

"People are not going to be very happy with what this all means. This theory is going to invalidate their (some scientists) entire life's work. I will definitely get crucified."

This Q&A was more than adequately rebutted by Rogers the same day. Criticism doesn't seem to have any impact on Lanza, at all, as it merely reinforces his belief that he is a maverick, bucking the trends. Lanza was back at it after the 2007 article found him the acclaim he was predicting from the scientific community (negative, but any attention is better than no attention). In an interview with Weintraub (2008), Lanza makes clear that he sees himself as a trend-breaker, a renegade, a free spirit who has a better grasp on reality than those around him. As someone who has followed the mercury and vaccines side of the autism community with interest and irritation, he reminds me a great deal of the scientists like Wakefield, Haley, Deth, the Geiers, and Blaylock, all mavericky themselves, and all wrong, as well. Eck.

By 2009, Lanza had found someone to go along for the ride. Lanza and Berman (2009) write: "The farther we peer into space, the more we realize that the nature of the universe cannot be understood fully by inspecting spiral galaxies or watching distant supernovas. It lies deeper. It involves our very selves."

Even with a background in psychology and intense fascination with people and why they do what they do, I wouldn't be so, oh, biocentric, let's say, as to think that this is at all accurate. We may be the centers of our own universe, but we are in no way the center of the universe (or the multi-verse, for that matter). This is intense navel-gazing gone overkill, hyperdrive and beyond absurd.

It gets worse: "According to biocentrism, time does not exist independently of the life that notices it" (Lanza and Berman). Ack. Seriously?

I suppose that's okay, though. They are saying according to their theory of everything, time isn't real. And since they are talking out their rears, rather than promoting a scientific priniciple or hypothesis, this is nothing more than bullshitting around a couple of beers or a bong. The biggest problem with this nonsense is that Lanza is using his past experience of hobnobbing with the scientifically illustrious to give his nonsense beer-or-bong-induced "theory" a patina of credibility. Ick.

Works Cited

Lanza, Robert, and Bob Berman. "THE BIOCENTRIC UNIVERSE." Discover 30.5 (2009): 52-55. Academic Search Complete. EBSCO. Web. 22 Dec. 2009.

"Robert Lanza." Lancet 366.9499 (2005): 1767. Health Source: Nursing/Academic Edition. EBSCO. Web. 22 Dec. 2009.

Rogers, Adam. "Wired Science News for Your Neurons Robert Lanza doesn’t seem to be kidding." 8 Mar. 2007. Web. 23 Dec. 2009.

Rowe, Aaron. "Will Biology Solve the Universe?" 8 Mar. 2007. Web. 23 Dec. 2009.

Weintraub, Pamela. "THE DISCOVER INTERVIEW ROBERT LANZA." Discover 29.9 (2008): 48. MasterFILE Premier. EBSCO. Web. 22 Dec. 2009.

12/21/2009

Lisa Jo, Loopy, Lutz: What's it all got to do with Ari Ne'eman and Neurodiversity

Lisa Jo Rudy serves as the "About.com Guide to Autism" and does her best to straddle the fence and not offend anyone. Of course, the result seems to be more that she offends everyone. Some things it's just not possible to be Switzerland. This happens to be one of them.

Rudy writes of Ne'eman's nomination to an administration position on the Council on Disability:

"By selecting Mr. Ne'eman, the administration has made a statement that may be unpopular within the autism community. Not only has he selected an individual on the autism spectrum (rather than a parent, researcher, or other representative of the autism community), but he has selected and autistic man with very specific views on the issue of autism-related policies."

First off, Rudy is making a blanket statement regarding the autism community as a whole. With somewhere between 300K to 750K children under the age of 18 and over a million adults with autism in the US alone, depending on what prevalence rates you want to go with and what bad estimations you'd like to use, that's a pretty big community. Rudy's taken the few thousand to tens of thousands of cure-hungry, recover-my-child-at-all-costs folks and posited them as the autism community. And she betrays her parent-centered postion by making reference to the fact that Obama actually picked someone with a disability rather than someone who has to deal with the disabled. The horror!

Listen, disability rights ought to be about the disabled and their voices, their needs. Just like parents of the disabled ought to be focused on their children and the disabilities impact on the child rather than being focused on how the disability really screws with their pedicures and manicures. I'm not suggesting parents martyr themselves, just that they remember that autism is primarily about the person who has it, not you as the parent.

 *(I apologize for this paragraph; it is awkward as hell, but I'll leave it alone.)* The other problem with attempting to pander to all sides of the autism community (and it does come off as pandering at times) is that Rudy inflates the size and importance of the autism/vaccines community. If AoA's page hits per month (around 86K according to trafficestimate.com), facebook fans, and twitter followers and the collective memberships in various autism/vaccine related groups are any indication of the true size of the autism-vaccine side of things (who all also appear to be staunchly against the ideas of respect and acceptance of individuals with disabilities), their reach, considering the actual population of autistic individiduals, is insignificant at best. Losing their support, which I'm not sure anyone who doesn't agree with them lockstep has, would be no big deal. Why, even AoA today acknowledges their puniness. Obradovic writes:
"We have no money, no budget to fund the science our children so desperately deserve, and are probably among the most burdened group of activists out there. We operate from yahoo groups and a blog."

Although it's an aside for the purposes of this post, Obradovic also refuses any accountability in deaths that might result from people not getting vaccinated:
"I refuse to take responsibility for any assumed swine flu deaths by failure to vaccinate."

But back to the main course: Rudy's what-do-you-think post regarding Ari Ne'eman's nomination. Doherty chimed in, no surprise. Hates it! Anti-vaxxers weighed in. Hate it!

Someone named LoopyLoo weighs in and starts off what is sure to be attention that a writer named Amy Lutz and a doctor named Lee Wachtel were not expecting:

"I’m frustrated and worried. High-functioning, highly verbal people with autism have just about zero in common with my severely impaired, non-verbal child. I’m glad that things have worked out so well for him, but in the general population of people with autism only about five percent will ever be able to participate in a movement like neuro-diversity. Acceptance of/for people who aren’t NT is a fine and lovely goal, but I’d rather have a cure."
LoopyLoo eventually posts the doctor's name after prompting by ANB (Ken Reibel) but refuses to divulge the actual article it was from.

Ken and I did some digging and traced it back to this post by Amy Lutz at Babble and Ken took the time and effort to verify the quote with Lutz, Wachtel and the Institute's PR office and posted this information to the comments at Rudy's.

Autism News Beat (Ken Reibel) writes in response to Loopy's post:
"By all MEANS, contact the doctor and confirm that I’m not putting words and numbers into her mouth."


"Thanks, Loopy. I took you up on your advice, and received this reply from Kennedy Krieger’s PR office:

Regarding Dr. Wachtel’s quote, her comments were pulled from a conversation that she had with a parent. She wasn’t aware that they would appear on a large web site as was the result. Her comments were also made relative to the severely impaired patient population that she sees. The majority of these patients can be described as she did in her comments, but the full context of the discussion would include mention of the fact that advances are happening in the field of early intervention which may change outcomes for toddlers who are being newly diagnosed today at age two or earlier. Also – she does not have a citation or reference for the “less than 5 percent” reference. Again – it was a casual comment made to a parent, and within the context of her patient population.

Amy Lutz, who originally posted the comment on her blog, told me by email that she got the quote directly from Dr. Wachtel.
Hope this clears things up!"

Loopy may have opened, and certainly Lutz will have, a bigger can of worms than either was intending. Wachtel appears to be hampered in clarifying her position by needing her comments approved by the PR office first, making Lutz's quoting of her in the first place problematic at best.
 
Lutz writes:
 
"Dr. Wachtel estimates that "less than five percent" of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. "Most are not going to grow up to be Temple Grandin," she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder — which makes sense to me, given Jonah's level of functioning."
 
This article by Lutz appears on Babble.com, has the appearance of journalism, and quotes a doctor in support of Lutz's contention that neurodiversity is a bad thing, overall. It doesn't help that Lutz doesn't seems to understand what neurodiversity is (appearing to have taken that definition from someone like Doherty, Mitchell, or Kulp, or just as bad, Age of Autism) and further hammers home her lack of understanding by writing this horrendously inaccurate conclusion:
 
"This is where neurodiversity is most dangerous — in the idea that early intervention should be eschewed as a rejection of our children's differences."
She compounds that with confusing unconditional acceptance with doing nothing to intercede for the child, nothing to help the child function better. It only gets worse, though.  Lutz writes:

"Because if some autistic individuals and their families don't believe that autism is a disability, then why should anyone else? And if autism isn't a disability, then why should the public extend any more patience or flexibility or empathy towards those with autism than towards those without?"

Neurodiversity is about acceptance of people with disabilities into society as full, included members. If you're really neurodiverse, acceptance of all increases. Acceptance of those who are disabled increases. Treatment improves. How do you not get that? How does anyone miss that if people have more empathy, more understanding of neurological differences, if they get that some folks are wired differently and cannot help that some of their behaviors do not meet the current socially acceptable ones, acceptance and empathy for the individual as an equal member of society can happen. In fact, it's the only way it is going to happen. How can you be a parent of a child who faces such tremendous hurdles and not get that? Not bust your ass to change the world for greater acceptance and greater assistance for those who are different, who are disabled? What the hell is wrong with this picture?


Bad as all that is, and sad as all that is, she makes clear where she really stands with her closing salvo:
"I can only hope that, now, the vitriol directed against parents who express concerns about potential environmental triggers — yes, including vaccines — will cease, and people will begin to recognize that, as we fight against the rising tide of autism that, as Dr. Piccotto notes, "shows no sign of abating," there is no room for us versus them. There must be only us."

Having waded through Tim Welsh/Tannersdad's idea of unity in the autism community, seeing Lutz's complete misreading of neurodiversity, and Rudy's idea that appointing someone on the spectrum with actual frakking ideas on treatments is a shocker and sure to displease, I have to say I really hope the numbers of parents who feel this way about the disabled, which include their own children, are really in the minority. Look, if unity means agreeing with any of these folks, forget it.

As soon as they start putting their kids front and center and working to make the world a softer, easier place for them rather than a more inhospitable unwelcoming place, maybe we can talk. So far, I see no evidence that this about their children and helping their children find acceptance.


Ari Ne'eman's nomination is a good thing. He is a vocal advocate for those on the spectrum. No, he doesn't speak for everyone, anymore than I do. But he has a voice and he's using it to advocate for integration into society, for better resources, for acceptance of the disabled.

If you're really against that, then there can be no unity. You don't have to agree with Ne'eman down the line. You can even think he's awfully young, and he is. Good. It means he also has the energy needed for this job and the lifetime it will undoubtedly take when we have take on some of those who should be the disabled's greatest, staunchest supporters: their parents.

I wish Ari good luck. I'm glad he's willing to do this, and I'm glad he's able to. Is he not the very success story all these parents who want to recover their children are always clamoring on about? I wish my son, who is only a year younger, had that voice, had that intellect, had that ability to stand, to take on such adversity from the very people who should be cheering him on. My bright boy cannot advocate for himself, not like that, cannot live independently, cannot drive, and cannot work. He can lead a satisfying and happy life, though, with proper supports and acceptance. I will work tirelessly to make sure that the world out there, outside his sheltered world, grows more accomodating, more accepting, so that someday, there will be a place for him the wider world, maybe a job, a job where he can be protected, be supervised and assisted, and be of service. Until that day, I will be glad that Ari and others like him are out there, working to make it so.

David Brown's Continued Countering of Handley

David Brown has a new piece on Handley up:  Stupid Like a Fox: More amazing anti-vax math. I hope you'll take the time to check it out.

12/20/2009

Memory Like Wine: T and L's True Lies (a double down special)

Memory, like wine, gets better with time, right? It turns out that our brains are masters at fooling us. We think we’re running things. We think we’re in charge of what we do, who we are, what we think. We reside behind our eyes, and forgive me for going all power ranger on you, we are the power rangers in their zords or megazord, running the machine and fighting the bad guys. Perhaps not quite that far, but it’s not a bad analogy. We think we take in all of our surroundings, that we are attending to all the information around us, but like Psych shows us, we aren’t all Shawn Spencers. We miss most of the stuff going on around us and our brain fills in the rest for us as we go, giving us a seemingly seemless narrative existence that makes sense and satisfies our need for order and explanation.

Memory is, indeed, nothing like fine wine. Skinner and Fernandez (2009) note that faulty memories increase as we age and that the detail of a faulty memory can be quite vivid and detailed. Seriously, it seems real to us. We have all these details in our head; we know it viscerally to be true. How can it not be? How can we possibly be wrong?

The truth is how can we not be wrong?

Toglia, Neuschatz, and Goodwin (1999) note that “it is not uncommon for them to include
details that never happened” (234). In fact, these are “abundant in the eyewitness literature” (234). Man, are we ever screwed. We think we know things that it’s emphatically clear based on numerous studies that we do not in fact know at all. Every semester, every psychology class I teach I spend a class trying to hammer this into my students’ heads: we most emphatically do not remember things accurately. In fact, we change our memory of an event just by pulling it out of storage, dusting it off, and thinking about it. We tuck it away with the new spin all over it, forever altered. Toglia et al. found that the confidence level with which subjects held the false memories to be accurate and true was high and it would appear that true and false memories are encoded similarly. We believe the stories our brains tell us and it never occurs to us, unless we know the science behind it or have spent enough time with older folks, that we might not remember the truth.

It’s bad enough to learn that our hard-earned memories may be factually wrong, although it should help understand why people remember the same event so differently. To then find out that people who suffer from clinical depression are even more likely to remember things incorrectly really ices the cake (Zai-Ting & Mau-Sun, 2009). Do we have a glimpse here, not only of the dangers of group polarization when people join various forums and groups dealing with little-understood disorder like autism or a condition like mitochondrial dysfunction, but also a window into how these parents in their various autism groups end up altering their life histories and their child’s, as well? Need we look any further than the Cedillo’s and the video footage of their daughter before the supposed vaccines that caused her autism to see that people rewrite memories?

Hyman and Pentland (1996) refer to these false memories as “memory construction” and note that there are some decided advantages in people in a community coming together and hashing out an agreed upon memory of past events. Therapy, they note, involves the rewriting of memories so as to make the event less traumatic.

While there may be definite social advantages to rewriting memories (say, like for fitting into a particular group) and while it is undoubtedly unintentional in most, there are decided disadvantages to doing this, especially when the rewritten memories can cause parents to take a course of action that it is not merited based on the reality of the situation. Even worse, though, in today’s internet world where one’s word and one’s reality is placed potentially permanently for the world to see, is that when the rewrite is substantive and ongoing, it looks like lying.

References

Hyman, I. E. and Pentland, J. (1996). The role of mental imagery in the creation of false
childhood memories. Journal of Memory and Language, 35, 101±117.

Skinner, E.,& Fernandes, M. (2009). Illusory Recollection in Older Adults and Younger Adults Under Divided Attention. Psychology&Aging, 24(1), 211-216. doi:10.1037/a0014177.

Toglia, M., Neuschatz, J.,& Goodwin, K. (1999). Recall Accuracy and Illusory Memories: When More is Less. Memory, 7(2), 233-256. doi:10.1080/096582199388039.

Zai-Ting, Y., & Mau-Sun, H. (2009). Effects of depressive disorder on false memory for emotional information. Depression & Anxiety (1091-4269), 26(5), 456-463. doi:10.1002/da.20453.

 
True Lies: Folks Can Change Their Minds and Their Memories

Thelma:

Folks, it's a sad day in Stinky Creek for Louise an me as we have ta relate a tale we seen a long time comin of a friend of ours who's done gone down the rabbithole so far he come out the otherside an gone back in. It's a shame, one we been watching perpetuatin, all while a hopin he an his kin would somehow notice they was rewritin history. Ain't worked out that way, though, nosirree bob. They done rewrote it ta suit their ideas now and the group they took ta hangin with.

Now, I'm gonna share this story, and Louise's gonna weave in the tale of Jenny McCarthy of the fartin poopin and indigo child fame an mayhap we'll be able ta share somethin of value, a cautionary tale as it were.

Here in Stinky Creek, ain't none of us above average, no, I reckon we is an anti-Wobegon sort of place. We make do with what we got, but we all admit we got some real obstacles standin in our way. Used ta we'd pony up an get together in a time of need an be of assistance ta each other, help out however we could. Of course, that was for the interwebz and satellite cable came ta our parts of the woods. Shewey, it's been a mess ever since, I gotta tell ya.

Used ta be, folks who had themselves a child with a few extra issues could count on kin an friends ta stand for em, help em out, an ta look with love on tha child. Now ifn it were deemed that tha mom an dad were futzin the job, the preacher an the prinicipal would call on Louise an me ta go round an have a come ta T an L meetin. It's worse than a come ta Jesus meetin for sure is what I am sayin. Jus in case ya was a wonderin.

When the interwebz came around, all of a sudden them parents who mighta reached out ta the community for some ideas went inside and started joing them yahoo groups and doin what came ta be known as the google U degree plan. Tweren't a bad idea in an of itself, but it meant that along with some good info ya was open for some really bad stuff, too.

An that's just what happened ta this young couple that lives down the road some. They had themselves some kiddies, sweet babies, they sure were, but high maintenance an then some. The little girl, well she was high strung, best can be said, but their boy, well, his maintenance was on turbocharge and some of us old-timers knew they were in for a struggle. We felt right bad for the challenges facin this young couple, an we did what we could, but that interwebz was there an appealing. No one likes ta be told a child's got problems an that those problems ain't goin away. Nosirree.
It's a powerfully painful thing ta hear, no doubt. Damn shame. Some folks rally when they hear that an march ahead. Some despair. True enough. Used ta, ya could whoop some sense in ta them folks; they was out an about an ya could keep an eye on them ta whoop some sense in when they started over ta the dark side. Now, they hide in their cubbyholes an go down the interwebz rabbithole.

Louise an I had no choice but ta foller them in, for true. We'd conversate when we could with them ta keep an idea of how things were goin, an at first it seems like they coped okay. They got ta realizin the middle un had some issues that mounted up ta autism, and autism came ta Stinky Creek officially. Most of us looked around an saw autism had always been there; we jus called it strange an eccentric an moved on an around as needed. We believe in cuttin some slack here in Stinky Creek since ain't none of us above average, if ya ken me. We is an acceptin bunch.

Now this sweet young family weren't havin much of that. It struck em powerful hard an they had the new satellite cable ta get ta the interwebz an off they went a researchin. They heard about this diet, raved about it, bitched alot cuz good luck in Stinky Creek gettin nature food stuff. We are a meat and taters kinda people with a lot of biscuits an gravy, too. So,when they started sayin skip the biscuits an gravy for the little un, we all looked at em like they'd gone over the bend. An they started tellin us about somethin about wheat and dairy and gettin high. About these yahoo groups where ya could exchange info an stuff an find out where ta get the cardboard bread and the tater or rice milk. Done tried some of that stuff. Shewey. Ain't tasty is what I am sayin.

Louise an I had no choice but ta go to google U, too, ya know, as the unofficial matrons an asskickers of the community, it fell ta us ta keep up with what the young folks were doin. We were on all sorts of groups before we knew it. Groups for plushies. Groups for ultra fems. Groups for cardboard food. Groups of all sorts, just a readin away ta pass the time. Even passed some on over ta Mamma H ta keep her out of our booze an smokes.

It gave us lots ta talk about, helped us keep relatin, let us know what was goin on in our community behind closed doors. Wooo-ey, some of the groups our neighbors belong ta will cross your eyes an make ya smile. Uh-huh. See them in the check out stand at our market an jus grin a big one. Louise can tell ya all about it, enough ta fill volumes. Led ta her creatin her own yahoo support group for forlorn seniors lookin ta jazz up their love lives. Sure did.

We followed this nice young couple around, an at first it was just the mama out there, really, lookin for more cardboard recipes ta share with us. Learned ta smile an not try ta swallow, dry stuff. Really cardboard is better. We peaked in, thinkin if we could spruce up them recipes that baby'd be happy, an since Louise an I run the church nursery (church is about the community here, huns, an good atheists that we are, how can we not play with the babies while mom an dads visit), well, we could honor the wishes of the sweet family.

From there, though, the story got interestin, it did, as the years unfurled an the diet stayed cardboard an more stuff was added in. An the child stayed the child, sometimes better, sometimes not, as kids are wont ta do. The mama started ta hear about the vaccine thing, an her mad started ta get on as they had something ta hold onto. Mercury poisonin came up an they talked about a cure. They went from thinkin about their child one way, their past one way to a complete rewrite. Now, Louise an I aren't quiet, an at first we'd cock our eyebrows at em an ask em what the hell they were up to, but it didn't do no good. No, we knew that light in their eyes an there wasn't no turnin them aroun. Mama had an answer and daddy latched onto it tight an fierce and from there on out the reasonin with him was done an gone. He was a true believer.

The community here, an it's a good one, well, it fell down on the job as the world turned an changed an folks became tied ta their interwebz and satellite cable. Pretty soon we couldn't even talk about the same things, cuz we all had a hundred different channels an we could indulge ourselves. Gotta where we realized we didn't have ta put up with Tom, Dick and Harry's bullshit anymore just cuz we lived in close proximity, so it got ta where we weren't talkin about shit together any more, neither, nor makin allowances. We got ta where we could ignore each other like we didn't exist. Even got ta where we could watch our preachin on the tube an not have ta go to church where we could tune out the preacher an focus on who was schtoopin who an who wanted to.

We had ta get more clever ta keep up with that family, but we did it, we managed it. Mama got involved with her brood an let a lot of that anger wash right out, focused on tryin ta make her babies as happy an whole as she could. Sides, she couldn't get the computer away from daddy. Nosirree, he'd found a place ta get in word fights an have his say an folks who'd encourage his special brand of mad, and even better folks who'd egg it on. Ain't nothin like an opposition ta keep ya fired up an ready ta go, can I get an amen an a attaboy? An Louise an I sat on the sidelines and watched that man's story morph inta somethin we couldn't even begin ta recognize. That group he found fed him, rewarded his anger, an it got ta where we were catchin him in a lie damn near every week. Course the man was so mad by now, tellin him he was inconsistent as hell an changin his tune every which way didn't do any good except ta get us uninvited ta their home,

Hard ta whoop some sense into someone if ya cain't get near him. The thing is, we ain't sure either one of them really kens that the story they is livin now ain't the story they actually lived. We ain't sure they know he's lied at all, if they altered their memories ta suit their new way of thinkin the way we is all tempted ta do. Once we believe somethin, we cain't never undo it an remember, really remember what it was ta feel different. If ya ever been through a break up, ya know what I mean.

Here's what Thelma's gonna say, though, an it bears hearin an hearin well, about rewritin your history: best ta member that if ya are intentional in your rewritin, it would be smart ta bear in mind where ya do that rewritin where ya cain't undo it. Some places on the interwebz is forever an your words long outlive your belief system and can come back to roost, if ya ken me an ken me well. Ifn ya shifted unintentional, ya best ta be lookin over where ya been ta see where your story changed an ask yourself was that on purpose an how'd I get here where I am now from where I started an mayhap start eatin some crow ta get back ta the truth of it. Cuz, here be the truth, there are people out there, hons, who member what they seen, member where they seen it an know the truth of it as it all changed. An ifn we gets ta thinkin ya is lyin intentional, wooo-ey, is it ever a come to Thelma an Louise meetin of the purse.

If ya ken me, is what I'm sayin.

Louise:
Thelma my gal, ya done said it all. The rewritin a history is a dangerous thing in these here interwebz times. Why ya got folks sayin one thing and three months later ya got em sayin another. I'ma thinkin they all do it ta get themselves some "maximum attention". Reminds me a that bosom enhanced gal who made herself a livin a tootin on t.v. Now I don't reckin most folk remember back when she were callin herself an "Indigo mom", sayin her son was a "crystal child" an such. Y'all can read about it here

http://www.childrenofthenewearth.com/free.php?page=articles_free/mccarthy_jenny/article1

That's right...Ol Miss fussy bosoms was all about changin the schools and cleanin up the enviornment and what not. So what do y'all reckin happened? A whole lot a nothin! So she changed her story. Her son was no longer a prettty crystal, but a child with the autism. Well hell, lots a folks got autism, not much new there, so she changed her story agin! It's the vaccines, its tha mercury, it's tha big pharma companies hurtin our kids! Well that good folks, got her lots 'o attention. Got her on Larry King, got her bigger book deals, and speakin arrangements, an just like tha pied piper (cept she tootin from her behind) she's got lots a people a followin. Includin our neighbor folks. Funny iffen y'all look back on all they wrote in tha beginnin, y'all would think it was a different child tween then an now. It makes ya wonder why. Attention? Acceptance? Inclusion? Or just an excuse to be so dang angry all tha time.

I have ta tell y'all...I was mighty disappointed in our neighbors after readin their old posts an such. Me and my gal Thelma embraced 'em with kindness and understandin. I'm hopin it wasn't a mistake. I'm hopin they'll go back and look at all they have posted and realize that maybe, just maybe they got so caught up in tha anger, they lost tha facts. Cause I'd hate ta think they twisted tha truth on purpose. Me and Thelma, we like ta believe tha best a folks, we don't like bein lied to. It gives us heavy hearts, an even heavier pocketbooks iffen ya ken me.

Now I gotta get on over to tha senior center. I'm givin a speech tonight " Just cause ya wear "supp hose" don't mean your stocking shouldn't be stuffed" Y'all have a Merry Christmas, a Happy Hannakah, a wonderful Kwanza, or just a good week.