8/31/2009

Poll on AoA, just curious and a little bitchy, to be honest

The votes get me curious. So, if you mostly agree with AoA or you think that vaccines cause autism, do you read me to keep an eye on what I'm up to? Why do you agree with them mostly?

It'd be totally awesome if voters would elaborate on their vote. And more readers would take a sec to vote. I'm not looking to attack anyone, but I am interested in thought processes.


And as a side note, I am so sick of the 14 studies bullshit that I could scream. I'm beyond tired of it. In fact, it's an excellent barometer for me if you quote it like it's the gospel that you really don't in fact have a clue. It lets me know that you just buy whatever AoA is selling.

Download this and read it: http://www.nap.edu/catalog.php?record_id=10997.


Here's the description: "This eighth and final report of the Immunization Safety Review Committee examines the hypothesis that vaccines, specifically the measles-mumps-rubella (MMR) vaccine and thimerosal-containing vaccines, are causally associated with autism. The committee reviewed the extant published and unpublished epidemiological studies regarding causality and studies of potential biologic mechanisms by which these immunizations might cause autism. Immunization Safety Review: Vaccines and Autism finds that the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism. The book further finds that potential biological mechanisms for vaccine-induced autism that have been generated to date are only theoretical. It recommends a public health response that fully supports an array of vaccine safety activities and recommends that available funding for autism research be channeled to the most promising areas. The book makes additional recommendations regarding surveillance and epidemiological research, clinical studies, and communication related to these vaccine safety concerns."



Just thought I'd vent a minute and add the second rule of the day: don't peek at AoA in the middle of the day when you are pressed for time and have a million other things to do. I mean, it's theoretically possible they'd have a positive comment or story on, and I feel like I ought to occasionally check and all, but not this week, huh?

Brief Rant on the inappropriateness of some commenters at AoA

Okay, you don't get to justify death threats, B.S., against Offit. That's complete rubbish. And AoA, you shouldn't get to keep lying about the amount of money Offit earned. You get way more wrong than right over there. And you do it as martyrs. Kudos, K. S., for suggesting this weekend that anyone who calls one of you or all of you on your beyond-flawed science, incorrect assumptions, flat out craziness, self-righteousness, downright nastiness, etc, is first not being a good Christian and second being mean and not putting the children first because you are parents to severely disabled children.

Really?

Gah. I don't know who called you morons, but it was after a spectacular string of unbelievable posts. I can understand the person's frustration, even if I wouldn't go that far. But, you know what, I will squarely pass the blame for inflaming those readers who write that stuff squarely on the AoA editors and writers shoulders. No, AoA is NOT about the kids at all. Period. It's about the parents. Totally. Or what you write about would be more about the autistic experience and helping, actually helping not shoving your nutra pills and mb12 pops on the kids, but helping them. It would be about what their lives are like, not yours and how you suffer and what you were before autism.

Seriously.

New rule: don't read AoA first thing in the morning when you've got lots better to do. :-)

8/29/2009

I know, I said I'd give myself the weekend off from AoA

But this is funny and worth having looked.

Freudian slip by one of the commenters over there:

"Great article!! The super smart experts will never convince me that my perfectly developing child was thrown into autism from the products that they themselves recommend. Tragic."

Hah!

Who reads AoA? And just a bit of kick-ass kumbaya ranting

As a preface: no, I didn't wake up on the wrong side of the bed this morning. I did, however, read AoA. So, this is an unabashedly pissy post. It is kick-ass kumbaya. So, read it forewarned that I'm not censoring much here. Okay, I don't censor much anyway, although I do try to keep the cussing and name-calling to a minimum mostly.

Who reads AoA?

I know whose comments get through. I know who writes for AoA. But who are its readers? And what proportion of those readers are like me, reading to keep an eye on what they are up to? What proportion are die-hard loyalists who believe every word written on it?

If I assumed that the commenters were representative of the readers of AoA and their respective beliefs regarding everything autism, science, and vaccines, I would be extremely discouraged with humanity.

They've been having a field day over there with Wakefield appearing with Lauer and with Safeminds refusing to appear with Nancy Snyderman. Bitterness leeches out of some of the comments, and if my friend C who's done a couple comments over there the last couple days reads this, I really wish you'd email me and let me know how you are doing. Your comments there and at Huff have really been bitter and hostile lately, and that makes me worry about you and yours and wonder if ya'll are doing okay.

Okay, back to the subject at hand. I'm not inclined to specifically badmouth anyone whose commented over there right now. Ideologically, at best, we're diametrically opposed, as readers here know. There's one person in particular over there with her eugenics comments and her inability to decide what caused autism who gets under my skin. Fine, there's a fair number of regular commenters over there who perturb me.

Mostly, though, reading the articles and the comments makes me discouraged for the critical thinking skills of some of these people; I'm not saying I have all the answers. I don't at all, but if you read them, you can't miss their absolute complete and utter certitude that they have all the answers and everyone else is stupid, pharma hos or shills or worse. That level of certainty along with bitterness and hostility make me tired and hurt my heart. How AoA loyalists who might not be all the way down the woo trail miss this or dismiss this, I honestly don't know.

I don't think highly of the editors or many of the contributors to AoA. I think their objectives are not pure, not good, and the proliferating ads for quackery to cure your kid shows that they ain't in it out of the goodness of their hearts. I sure don't think much of their "science." I stand by the first comment and one of the few that was put on over there (and this was months after discussing with AoA readers the autism/vaccine link in the various threads at Huff) that I made that they really wouldn't know science if it walked up and smacked them in the face (I'm paraphrasing, but I'm too lazy to go to the first blog post on here to see what I actually said). Sure it was inflammatory and set the stage to let them know I didn't consider them to be particularly beneficent folks over there with all their brain cells rubbing together. I know, tacky, right? Well, tough. I've spent my limited free minutes this week reading some of their more incendiary comments and stewing on it because I didn't have the time to do a good old deconstruction on their flawed, offensive thinking. Seriously, KB, could you get any worse? Give it a week, and I'm sure you will.

Look, I do want to support parents of children on the spectrum, and bottom line, I've acknowledged that vaccine damage occurs (I don't think that's autism, and I really don't respect Wakefield, the Geiers, Deth, and any of the other shoddy and shady "scientists"). I don't know if a parent is telling the objective truth that their child sustained a vaccine injury and then got autism (within a week, none of this months after the fact your child gets diagnosed with autism, you hear Jenny McCarthy's less than stellar logic, and conclude that little Johnny's autism must have been caused by the vaccine, even though there was no reaction whatsoever at the time). I wasn't there. I'll take you at your word and we can move on to the here and now and focus on how to deal with the challenges of autism together in a positive way. If you are screaming to other parents out there about how awful vaccines are, we aren't going to be best buddies. I'm good with that and I'm sure you are, too. I think you're off your rocker, you think I'm "militantly uneducated" and we can have an adversarial relationship or you can ignore me. Whatever works for you.

I had a point to my rant, and that's for ya'll to look over to the right and vote in the poll I've set up.

Now, if this costs me some group members, well, that sucks, I guess. So let me restate it again; we don't have to agree down the line on autism, on treatments, on causes. We do have to have some core values in place, though: making the world a safer, softer place for our children and for adults on the spectrum and with other disabilities; offering positive encouragement to parents who are struggling, and frakking standing up to the bullies and the charlatans who would make this world a less accepting place for our children. I'm fine with the acknowledgment that vaccines can cause an adverse effect. Absolutely. I'm fine for more research into making vaccines that are as safe as possible, for looking into who might have adverse reactions so we can create screening tests. I'm fine with parents and doctors looking at each individual and deciding on the best course of action for vaccination. I don't think you should get your child vaccinated if he or she has ever had a serious adverse reaction to a previous vaccine. In fact, I think it is your job as a parent to know what is going on with your child and to use your critical thinking skills to make the most rational, non-emotional health care decision for your child. I think parents who let rampant emotionalism cloud their judgment or scaremongering keep them from thinking critically are not doing their job.

So, if you read me with any regularity, you already know where I stand. I think Age of Autism on balance does way more harm than good. I think their "science" is not, at all. And I think that overwhelmingly their intent is to foster maladaptive coping skills and dependence on magical thinking. Try our sponsored products is their unstated motto. Occasionally they run a positive piece, and I acknowledge it here when they do.

There you have it, my general bitchiness about Age of Autism and by extension a clear reminder of why this blog is called Countering Age of Autism. Don't figure that's going to change any time soon.

Vote in the poll and have yourself a good weekend. I'm going to make it an Age of Autism free weekend and that ought to fix it right up for me. :-)

8/26/2009

Reminding Readers that there's a positive place :-)

It's been a busy week here, but I wanted to pop in and chat for a minute.

We set up a forum over the summer, http://www.raisingautism.co.nr/, that I hope if you haven't had a chance to look at, you'll take the time to, and maybe join.

While it's take is a positive take on autism, in that we're about positive support of those on the spectrum and those who are family members to them, it doesn't mean it's not a place to share difficulties you might be having or to brainstorm with others on how to handle certain hurdles that come up.

It's been quieter there than I had hoped for, and I wonder if it's because positive support isn't as inherently salacious as mud-slinging. I suspect that's in part the reason for it, and I hope readers will take the time to join, to offer positive stories of their children, to support each other, to be there as active participants, and by doing so, prove that positive can be just as interesting as mud-slinging and name-calling.

Pretty please? :-)

8/23/2009

Disagreement without Hostility

I’m going to go out on a limb here (hah) and say that there are great many people who don’t get the concept of disagreement without hostility. I know, it’s so handy to be able to sort people into groups: the in-group and the out-group. There’s obviously an evolutionary advantage to quickly indentifying your tribe and we’re hardwired to do this.

It’s not a surprise then, that it gets quickly hostile in the autism community. Rigidity of thought and black-and-white thinking are the norm not just for people on the spectrum. It comes naturally to most people. Right is right and wrong is wrong and if I’m right and you don’t agree with me, you’re wrong. Easy, isn’t it?

It’s been one of those weekends. A mother who joined our facebook group and posted a nice link to it on her facebook page got a fair amount of grief over that link and lost some facebook friends over it. I also got some facebook mail over how the facebook group’s name and my blog are trashing AoA and that I ought to change the name:

“I see on your Countering Age of Autism group that you are considering changing the name. I highly suggest you do that! You are IMMEDIATELY turning people off that otherwise might find your group a safe place to fall. Why would anyone want to be part of a group that suggests in it's NAME that it will be a place to trash others? And that's what it suggests. Plain and simple. Divisive and derisive. Whether you think so or not.”

This was followed by an additional message:

“you say on your page: ‘Breathe and imagine that someone else was saying that to you.’ Well, breathe, and imagine someone set up a Countering Kim Wombles Facebook page. Actually, let's call it the Anti-Kim Wombles FB page. Whoa! How does that feel? Nice? Not at all. Can't you see my point? Would that be helpful, or would that be divisive? I'd really like to know what you'd think of that.”

I responded to the message with this:

If you read closely my wall comment on the facebook group page where I said I had been considering a name change, you'd realize you are the reason I will not change the name of my group. We are countering misinformation. We do not trash others, and if you feel that's what we are doing, you have not read us well. If you are turned off by the group, I'm sorry, but I'm not going to change it because it irks you.
And, since I have been resoundingly attacked by commenters on AoA and by **** (see list of names I've been called on my blog), I fail to see your point. No, it's not "nice"; I would not particularly consider your messages nice, for that matter. And yet, you would still be welcome at Raising Autism and the facebook group, which is completely counter to what AoA does, where I am not welcome.
That, ****, is what I think of that.

Please note that I have nothing to hide, and I will not consider these messages to be personal; they may be used in a blog or on the group. I will, however, not speak ill of you or trash you in any way.If you feel our group has nothing to offer you, I am sorry. I wish you well.

Kumbaya.

-end message-

I’m used to my words not really being read and understood by folks who come in with preconceived ideas. This response earned the following from a person I’m going to guess isn’t going to be friends with me anytime soon:

“I am the reason? You ARE trashing others by the nature of tha name of your group! Which is the ONLY point I've ever tried to make to you at all! If people like your group, I am happy for them, but you're name implies judgment of others. You not changing the name because of me is hilarious! And SO illogical! Good luck being so ugly kim. Really.”


I tried again, and perhaps made some progress:

No, I am not being ugly or trashing any one. You can disagree without trashing and without being ugly or strident. There's nothing illogical about standing firm in your convictions, especially when there's not one thing on the facebook group or Raising Autism that is ugly or trashing.

The only one approaching ugliness here would be you. If my group and forum have nothing to offer you, then I'm sorry, and again I wish you well.

Perhaps some deep cleansing breaths? Why do you feel Countering AoA is trashing? The name doesn't say Trashing, tearing down or destroying. It says countering. The definition of countering:
transitive verb, intransitive verb
1.to act, do, move, etc. counter to (a person or thing); oppose or check
2.to say or do (something) in reply, defense, or retaliation

You apparently have decided to look at it as retaliation, which is obviously not our mission. We oppose faulty science, anger and hostility towards parents who do not subscribe to AoA's set of beliefs, and maladaptive coping mechanisms. I can see that if you love AoA and agree with them down the line, that this would be a problem for you. That's fine; you've got a place where you're welcome: AoA. You also would be welcome at our group. Do you see the difference?

Kumbaya.

-end of message-

I received one more response, and I hope that it means we can agree to disagree on causation without the need to trash each other:

“You know what, I went about this is the wrong way. I see now what's going on here. I'm really happy for you. Happy that you have a job and a purpose. Good for you. Many like you won't fare so well. Good luck.”

Progress, I hope, in helping those who would be initially put off by the name perhaps look deeper. Maybe not, but it was at least a good exercise in defending my choice for a name for both my blog and the facebook group. I get that we’re not all going to agree on everything, and I don’t have a problem with that. Our forum Raising Autism is for parents of individuals on the spectrum and autistic adults to come together to learn from each other and be supportive. I hope the facebook group does the same, and perhaps we may want to open a Raising Autism facebook group at some point. While I share the admin duties with four other lovely ladies, and our facebook group has six officers, I did start it as an extension of this blog. I don’t think of myself as the leader, but as a co-founder, and I think that if we took a vote and decided to open another facebook page with Raising Autism with the name, I’d be happy with that.

I’m not sure we need to, though. Many of our members are NOT welcomed by AoA, Generation Rescue, etc. Our name makes sense, to me at least, as a counter to that exclusivity, to that certitude, and what ultimately comes down to a bullying arrogance by many AoAers. Not by all, and I think I make it as clear as I can to those who are willing to read me that I’m a fairly inclusive gal. I like people and I want to make the world a nicer place. Sometimes that means calling out folks on what Thelma and Louise would be quick to label dumbass behavior. I like their style and I appreciate their bluntness. Some folks are dumbasses.

I don’t believe most people are, though. Nor do I believe most to be dumb. And I think it would be arrogant to say I think they’re wrong. For the most part. Unless I’m pretty damn sure they are. But even then, 99% of the time, I can try to do it without overt or even hidden hostility. Sometimes, I don’t and I won’t pretend I’m a saint. Piss me off and I’m gonna go after you pretty fiercely, but it takes a lot to really piss me off. Stir me up, sure, no prob, most times I’m going to stop and remember you’ve got some issues, too and think on it before I take offense.
In other words, I’m saying most of the time, in many ways, I’m perfectly willing to entertain the idea that I might be wrong and you might be right. And even where I’m not, I’m still willing to consider that you are doing the best you can and cut some slack. And avoid feeling or reacting to you with hostility.

If I think you are a bully. Nope. I might feel bad for the situation that led to you being an ass, of course, but I’m not going to stand by and tolerate the bullying.

If I think you are trying to take advantage of people who are feeling desperate. Nope.

If I think you are intentionally spreading inaccurate and dangerous information around. I’m going to reflect for a minute, consider what your intentions are and decide carefully on an approach.

I closed my correspondence with this person, who struck me as neither a dumbass nor as dumb, but as a mother doing the best she can, with this:

I'm not certain I understand what you mean by others like me won't fare so well. Why will they not? We all have choices to make on how we handle what life has dealt us. I have a beautiful son, my bright boy, who is not leaving home to live an independent life, ever. He'll be 20 this year. I could be mad at the world and at other parents who think differently about autism's causes, or I can work to make the world a more accepting place for him and my two daughters, who are not as severely impaired. (see www.kwombles.blogspot.com for stories on my children).

AoA has no place for me or for others who disagree with them on ANYTHING. None. They have no room for anyone who does not agree on the vaccine/big pharma conspiracy. Doesn't matter where you are on that, what you're willing to consider; you either buy into their view completely or you aren't welcome. Some of the ugliest attacks I have ever dealt with have come from AoAers. Think about that. The ugliest attacks. Countering came into existence because of those attacks.

Countering offers a place for everyone. FOR everyone. I don't care what you think caused autism in your child, and I won't argue about it, either. What matter to me is how can I help others on this journey. If our name stands in the way, then the chances are those were the people who rejected me and some of our members in the first place. And that's why I won't change the name; your comment on ***'s was the first that really made me decide not to; others followed after you and made it even more clear that the name serves a purpose.

Again, we'd be happy to have you at the facebook group or our forum Raising Autism. You don't have to view the causes in the same way and no one will give you a hard time. We're there to support.

:-)

-end of message-

Names replaced with **** because this isn’t about who wrote it, and I don’t use the messages with malicious intent, but because I think they work to allow me the opportunity to reflect on why the blog is still Countering Age of Autism and the group is still Countering AoA, as well as why it’s going to stay that way for now. Until a counter isn’t needed.

Disagreement without hostility is possible on most issues. So why is there so much ugliness out there?

8/22/2009

Our Friend Anna Kennedy Shares her Story at AoA

I hope everyone will take the time to read Anna Kennedy's story over at AoA. It's highly inspiring what she's done. And it's a fine article! Kudos to AoA for running it.


http://www.ageofautism.com/2009/08/not-stupid-one-womans-fight-for-her-sons-special-education.html

8/21/2009

The Fight over Autism

Where does autism belong? Does it belong in the DSM? Should there only be a medical model of autism?

If you hate psychology because of what I would consider to be a popular and distorted view of what psychology presently is, you're probably going to rage and scream that it is covered by the DSM. Your anger, rage, and frustration are probably going to be even greater if you believe your child was damaged by vaccines. Undoubtedly, it's going to infuriate you to have what you believe to be vaccine-induced damage covered primarily by what you perceive to be a psychological/psychiatric/behavioral model.

I don't think anyone in mainstream psychology and psychiatry believes the DSM to be infallible. Quite the opposite in fact. It is a highly flawed, poorly constructed diagnostic manual that undergoes significant revision with each new edition. It is years out of date and often bears little resemblance to the clinical and research realities in the real world. As long as the psychologists and psychiatrists using the manual keep that in mind, and I think many, if not most, do, its flaws help to keep it in check.

The problem is not so much the DSM itself, but the process through which it is created. But the even bigger problem is the disconnect that occurs in the public. Most scientists, most research doctors, and many practicing doctors view disorders and diseases through the biopsychosocial framework. We're moving away from a model of mental disorders with stigma attached to a recognition that so much of what the DSM covers is in reality not so simple as saying it is a mental defect.

There is this intertwining of the biological, psychological and social that is implicated in almost all conditions of the human body and psyche.

It doesn't matter if the DSM keeps autism as it keeps so many other disorders, because it doesn't belong exclusively to the psychological domain and psychologists who know what they are doing don't believe it does. Psychology (if the public would keep separate the Freudian, neo-Freudians, Jungians and neo-Jungians from the science that psychology, as a discipline, has focused on being) works in tandem with neuroscience and biology. Psychology as a discipline is so vast, so multimodal, that the lay public has huge misconceptions about the field, and folks, ahem, who write with passion and a level of vitriol that is certainly undeserved, about autism being classified in the DSM, distort both what autism is and what psychology as a field defines it as.

There's an element of availability heuristic in play here as well. If your child has autism and is also a child with several illnesses, you want to say that this is the autism. I don't understand how people who can view autism as not integral to who their child is can then blame the autism for everything. It's like someone having multiple diagnoses and anytime something goes wrong wanting to put all the blame on the autism itself rather than the other diagnoses.

Not everybody with autism has multiple health issues. Blaming intestinal issues on the autism just because the child has both doesn't make autism responsible for the intestinal issues. It's be like saying my diabetes is responsible for my migraines.

Just because your child is physically ill and prone to more infections doesn't mean that represents autism. My three children are extremely healthy children; they get the occasional cold, but rarely had ear infections.

Autism is a neurological condition caused by what appear to be both multiple genetic differences and potential cellular changes caused by traumas sustained while in utero. What that means is that there are probably, and in fact most neurologists specializing in autism believe to be the case, several autisms (no matter how folks at AoA might hate that idea). Same basic pattern of behaviors, but multiple causes. It is entirely possible that there is a subset of children who do have a particular genetic difference which not only results in the neurological differences labeled autism and a susceptibility to different illnesses or diseases like epilepsy.

I don't see why most reasonable people, having reviewed the literature on autism across the disciplines researching it, would have a problem with the likelihood that like multiple congenital abnormalities and intellectual disabilities, there are hundreds to thousands of genes implicated in what we have decided to arbitrarily call autism. Or that environmental factors play a role.

You have to wonder what's motivating parents who engage in an all-out warfare with parents who don't see their child(ren)'s autism with the same rigid, all-inclusive lens of outside-induced, someone-else-is-to-blame-for-my-child's-autism? What's behind that need for certainty, that refusal to accept nebulousness? Is it possible that the autism divide is not fostered by differing interpretations of scientific evidence, but instead by different personalities and coping mechanisms?

I'm not saying parents who believe their child's autism is caused by vaccines falls in a maladaptively coping subset. There are plenty of such parents who aren't vitriolic, who aren't rigid and focused on making sure everyone agrees with them. There are plenty of parents who believe vaccine reactions caused or worsened their child's autism, but they aren't filled with anger, hatred, or the need to force their ideas on others. They're perfectly willing to consider and accept the idea of multiple causations. Nor do they need to or insist on seeing their children as damaged goods. They love their child, they celebrate their child, and they focus on the positives and on helping their child achieve his or her potential. They don't go down the woo trail to do it, either. They don't need to; they aren't desperate or mired in should-have-beens.

I think that the "divide" is not nearly as big nor as vicious as some would have us believe. I think those who would are loud, are angry, and shout a lot about their narrow view of the world. I think we let that loudness cloud our perception of the autism community.

The Countering Facebook group belies this picture of the divide. We're still small, yes, with a little over 250 members, but we're an inclusive group, I think. I know we have members who do believe their child's autism was caused by or worsened because of an adverse reaction. We aren't arguing about it, though. We don't, as a group, talk much on the group itself, but a third of my facebook friends are my friends through the group, and I enjoy reading their updates on their pages. At least through the private facebook friendships, the countering facebook group is rather chatty with each other. I'm honored when one of the members asks me to be a facebook friend because I know they are inviting me into their personal lives and asking for the same.

The divide is artificial and unnecessary. As parents of children on the spectrum, as individuals on the spectrum, what matters is not what caused autism. It's a done deal. What matters is support, acceptance, and appreciation for what makes us uniquely who we are. We want the best world for our children. We have different ways of getting there.

I don't think anger and bitterness are the ways to make the world a better place. I lost my need for certitude a long time ago. I'm bound to be wrong on a great many things. Letting go of the egoistic need to be right lets me focus on being compassionate in my own kick-ass kumbaya way. Because some things, I'm fairly sure I'm right on, and those are the things I need to be kick-ass about, and that's making damn sure the world out there is ready to accept and love my children as they are.

So, I don't care where autism is, the DSM or in a medical textbook. I care how you treat my kids. I care how you treat others with disabilities. I care if you are making the world better or worse. If I think you're making it worse for others, it's time for the kick-ass.

Kumbaya.

8/17/2009

Beautiful Way and Kick Ass Kumbaya

It’s been out there now for 14 months, but it recently has come back into play on some blogs of autistic adults who have no love for neurodiversity. When Kristina Chew and Ari Ne’eman were interviewed on Good Morning America in June of 2008, Diane Sawyer spoke with Deborah Roberts at the end of the segment. I’ll admit I’m not at all fond of news anchors and interviewers and their canned way of conveying emotions. The more you watch them interview people you get a sense of how formulaic and disingenuous their emotional displays are. You also can get a clear sense of where they are completely ignorant and ought to know better, like Anne Curry and her inability to keep psychotic and psychopaths separate. But I digress. Deborah Roberts talks about the new word, neurodiversity, and Diane, as one poster wrote, with her “screwed up face of pity“ (1) says “I mean you keep wondering is it in someways a beautiful way of justifying heartbreak.”(2)

The comment has garnered a fair amount of posts in the last year plus, and Mitchell, autism’s gadfly recently added it onto his main page as has Stephanie Keil, a talented young artist. (3, 4, 5)

Now, I’d wager, having read a fair amount of Mitchell’s blog, that he does not mean this in a nice way. He has a rather significant distaste for neurodiversity and has elevated it to a status that begins to take on mythical proportions, so he isn’t using this as a compliment, and I’m pretty sure he doesn’t view it as beautiful way to do anything, let alone “justify heartbreak.”

Lots of bloggers, including Kristina Chew (7), wrote on Sawyer’s comment. Neurodiversity is a beautiful idea. It is the idea that we are all equal in value and dignity, that we all have something worthwhile to contribute in our own ways, that we deserve to be treated with respect, that we are worthy of love and assistance. That is beautiful. It is accepting of the sanctity of human life, of the inherent value of life. So, yes, for all Sawyer’s seemingly falsely generated feelings of pity, neurodiversity is a beautiful way.

What about the idea that it is justifying heartbreak? First off, let’s look at what justify means. According to an online dictionary, it means the following:

1. to show (an act, claim, statement, etc.) to be just or right: The end does not always justify the means.

2. to defend or uphold as warranted or well-grounded: Don't try to justify his rudeness.

3.Theology. to declare innocent or guiltless; absolve; acquit. (6)

Justify heartbreak? Is neurodiversity showing heartbreak to be just or right? No. Is it defending it as warranted or well-grounded? No. Is it absolving heartbreak? Maybe. I don’t think that’s how Sawyer’s using it, though.

Heartbreak? Whose heartbreak? The parents’? The child’s?

The entire sentence, short of thinking of neurodiversity as a beautiful way, makes no sense. Heartbreak is a choice. It is an attitude made by individuals to cope maladaptively to a situation.
I’m well aware that having a child with a severe disability can hurt one’s heart, often on a daily basis. If your heart is hurting for the child’s hurdles and difficulties, I’d say that’s all well and good. And the right emotion, especially if it acts as a catalyst to get off your ass and make the world a better place for your child and other children like your child. If it’s hurting your heart because of what it cost you, well, you’re not high on my list of favorites. I get it, you were thrown a wrench in your plans. Put on your big girl panties and deal with it. If it gets rough, reach out and get some support going. Raising Autism and Countering are there for you. We will support you on your journey to help your child reach his or her potential and to help you cope adaptively. We’ll be compassionate, caring and respectful; it’s just that I personally have a limit on the depth of pity parties allowed as well as outright woo. Occasional forays into the depths of darkness are unavoidable as a parent. We’ll be here to give you a hug and an occasional constructive suggestion to get on up and over that bump. And I am well aware that some of those bumps are mountains. It’s why we’re all about the hugs.

I’ve decided my sign off should be Kumbaya since I use it as much as I do.

So, Kick-ass Kumbaya, mothers and fathers out there dealing with children with special needs as well as to my ASD readers. I’m happy to have you all here. There’s a place at the table for just about everyone.

Cue the tambourines.

Sources, all fancy like:
(1) http://www.blisstree.com/autismvox/on-good-morning-american-june-10/
(2) http://www.youtube.com/watch?v=oouMQG3Oh6c
(3) http://leftbrainrightbrain.co.uk/?p=1797
(4) http://autismgadfly.blogspot.com/
(5) http://stephanielynnkeil.blogspot.com/
(6) http://dictionary.reference.com/browse/justify
(7) http://autism.change.org/blog/view/judge_not_lest_ye_be_judged

8/15/2009

Catching up with autism related blogs

It's been an interesting week out there. Just wanted to share a few things I've run across that struck me as worth mentioning.

I read at least three people put forth the idea or back it that the rate of ASDs is 1 in 10. Huh.

Then I read that if autism was genetic, it would be 100 percent. Sigh.

I also keep reading folks who thoroughly distort what the idea of neurodiversity is. To be fair, perhaps there are those on the fringe who say what these anti-NDs contend. But to paint everyone who believes in the idea of neurodiversity and treating people with respect and dignity as these anti-NDs do is just beyond black and white thinking. They are rather rigid folks; apparently if you don't agree lockstep with them, you are polar opposite of them. Either-or kinds of people.

So, not folks I guess who will want to gather hands and sing kumbaya as the woo figting warrrior princesses play various musical instruments (perhaps some well, for sure some badly) and do a woo fighting warrior princess dance. Damn. We could have had popcorn, too.

Cookie, Jenny and, a really? Are you sure? to an AoA commenter

I'm trying to be a kindler, gentler me. A me that realizes that folks who say frakking outrageous things have feelings, too, and can be hurt when someone calls out their complete over-the-topness.

I'm trying hard.

But. Sometimes you read something and you just have to fish the flies out of your mouth. I just read a comment at AoA that I have to go back to read and make sure that I didn't take it out of context, that maybe it isn't as completely offensive as I think it is.

Hang on a sec while I do that. Ya'll go take a look, too. http://www.ageofautism.com/2009/08/jenny-mccarthy-in-cookie-magazine.html

Now, the kindler, gentler me isn't going to pull any quotes on this one. The kindler, gentler me isn't going to name names. There are two comments there that irritate me, but one of them just screams, really? Are you kidding me? You didn't just type that, did you? And the moderators let it on because you're a regular commenter, right? That has to be it.

What do ya'll think? Do you see two that are more irritating than the others, one of them in particular that just is mind-blowing, or is it just me?

And a side note for a special someone. How nice of you to come over and visit. :-)

Maybe Kirby slid from the living page for a reason

I really got into commenting on Huffington Post in March, while I was recovering from a surgery. I was bored, confined to the recliner and in pain, so I did some surfing. I had some tremendously interesting arguments and discussions on the various autism-vaccine related posts. I met some very interesting folks on both sides of the discussion. I'd wake up in the morning eager to see what was new over there.

In short, I had an energizing, completely absorbing time for several months. It was something. I thought, okay, gotta respond, gotta present facts to counter misinformation, gotta be in it so that folks coming into the comments section undecided would have something to counter the misinformation and often outright wacky woo that was there. I met several of the woo fighting warrior princesses there and members of Science Rocks, too. We put the science rocks forum together to put together vaccine and autism information so that we could pool our resources to more accurately and quickly rebut these woo-meisters.

We followed through for several months, but Huff kept running article after article and the same couple of really out there folks kept posting the same old nonsense. I'll be honest, I think it wore us out, some of us. There's no reaching some people. And we weren't trying to reach them anymore. Just to counter the crap. And then, I think most of us got the pointlessness in arguing with them. I wrote to one of them that we decided banging our head into brick walls would be more effective a use of our time. I think it would, honestly. Same old things being said over there, nothing new. Of course, Huff let this one slide right on off the living page and fast.

Some of us decided there were far more important uses of our time, and we set about creating the facebook group and Raising Autism, places for positive support. We've got big plans for the future and we hope to grow the two into vibrant communities. The fact that those interested in putting out the gross misinformation about vaccines stayed right on over there at Huffington says volumes, I think.

So, I haven't responded to the Kirby post. It's fully moderated, and for the most part, it's been the same few folks spouting the same old nonsense. If folks wander in and read it and don't see it for what it is, they probably can't be reached, either. I don't have time to try to post rebuttals on there and hope the moderator will actually do his job and what I want to say, I say here and on other's blogs, like left brain right brain. I have a place to let my voice be heard, several in fact, where moderators don't exist. And I think that by staying away, we provide better counterpoints. There are so many blogs, so many folks offering a counterpoint to misinformation and nonsense that in many ways, especially as long as Huff continues its apparently new policy of burying autism vaccine nonsense, we really don't have to go there to counter it. No one's reading it anyway, other than those who already buy into it and those of us who read AoA to know what they are up to so we can counter it in our own way on our own blogs.

Plus, if you go read the comments on the Kirby blog, well, what's there to say really?

You've got someone echoing the idea that the numbers for ASDs is 1 in 10. For Pete's sake. Really?

Sigh. Some things, the brick wall really would be more satisfying.

An addendum because it's been eating me all afternoon. Someone I respect and enjoy conversing with wrote on the Huff piece that, and I'm paraphrasing, only a few trolls had shown up (and he was discussing the autism-isn't-caused-by-vaccines commenters). I don't know if he meant me specifically, or was just referring to the other woo-fighters, and admittedly only one member of science rocks is commenting on the Kirby piece, a person that this poster regularly butts heads with. I'm seriously disappointed with that kind of rhetoric; I had considered posting over there, and in all honesty, his post decided me against it. As I said earlier in this blog, what's there to say?

The AoA believers have decided this is something to be won, rather than focusing on the work that needs to be done to make the world a safer place for our children. They've decided that drowning out others and raining down a series of angry, bitter rants is more important than helping parents and individuals on the spectrum cope effectively.

8/12/2009

Has Huff lost its interest in AoA writers? And shouldn't 1 in 100 garner more attention?

David Kirby, whether you agree or not with him, has written on the new numbers released here in the US on autism rates. Stagliano has written a letter to Senator Dodd on the 1st of August. Both are on Huffington Post, if you know how to go looking for the authors. However, neither post has been on the living page. Stagliano's post isn't even on the autism page. Update, when I checked a couple hours later, Kirby's finally made it to the living page. Not on the front page, though. And nearly a 24 hour delay in getting Kirby loaded onto the living page. Stagliano's is not on the living page, nor on the autism page. ***It's the 14th and Kirby is GONE from the Living Page. Have any of you ever seen that happen that fast?

What's going on here? Is Huffington Post tired of autism or tired of AoA? Has Huffington decided there's no real win here, that the controversy over vaccines ultimately hurts their bottom line? if that's the case, then let someone without the reputation Kirby has discuss the new numbers. Surely there's an autism expert out there who could speak to it with some credibility behind it. Although, I could certainly see the difficulties in getting legitimate researchers to want to be anywhere near Huffington as it goes down the woo trail.

Here's another problem: Huffington doesn't even hype positive pieces on disabilities. Lee Woodward's piece disappeared off the living page fairly quickly, as well. At least it made it there in the first place.

As to the 1 in 100, see Sullivan's post at Left Brain Right Brain, Moving Toward a New Consensus Prevalence of 1% or Higher, as to why the numbers aren't that big a surprise.

Moving Toward a New Consensus Prevalence of 1% or Higher Read more: http://leftbrainrightbrain.co.uk/?p=2740#ixzz0NyOn73Kg

Now, can someone explain to me how some of the responders, both at AoA and Huff, keep providing rates that are much higher? Many appear to be based on anecdotal evidence like a visit to a dental practice and the dentist saying the rate of autism at his practice (if my 7 year old with Asperger's, listening to me discuss this last night at the supper table can immediately, and I kid you not, say that doesn't mean the overall rate is the same).

The truth is that, yes rates appear to be increasing. This appears to be in part to better or more frequent identification, to a broadening of the spectrum and where we psychologically are labeling it as a disorder rather than a difference, and in part because the numbers are actually increasing.

Kirby's and others' argument that folks who think it is primarily a genetic disorder/difference must be crazy because the numbers are increasing are arguing from the false premise that scientists believed it to be genetic without environmental interaction. I haven't run across any scientists or researchers denying the interplay of environment and genetics.

It can also not go unnoticed that Kirby now thinks it's hep B vaccination shortly after birth that's doing it. Come on, man. At what point do you have the wisdom to just fess up that you don't have a clue as to what the possible environmental triggers are? I mean, you managed to keep the thimerosal question in there, certainly. But then, your argument falls apart, since more infants are getting the HepB than in the past, and if it is the version that has thimerosal, and you're right that rates are decreasing with the younger cohort, well, it would seem to mean that thimerosal in the HepB would actually be correlated with a reduction in autism rates. See, anybody can do this armchair bullshitting. It doesn't prove anything; it is speculation without science.

And a survey has to be taken with a grain of salt. As do medical record reviews, for that matter. How many parents went through multiple labels before getting an ASD label for their child(ren) and how many who have the child lose that label have the child's difficulty relabeled something else?

One last passing thought: people who scaremonger with increasing the rates of autism and speculating that soon everyone will have a child on the spectrum is like the argument that if we let gays marry, soon people will be marrying their animals or objects.

Absolutely, we need research into why autism rates appear to be on the rise. We need research into effective treatment modalities. And if there are in utero traumas (events, illnesses) that are contributing to more children being autistic, ways of prevention should be researched.

We need increased funding for effective, safe and reliable treatments. We need better education and training for parents, educators, therapists, and the public at large. We need better work training programs and residential living options for adults who need assistance.

We need to do a lot more for the disabled, in general. It starts with recognizing the inherent value of each person, and each person's right to a life with meaning and dignity, and to do work that has meaning and value to the person and to make his or her own decisions regarding the course of his or her life. It starts with making eye contact and acknowledging the disabled when we see them, as we would for any other person. It means reaching out with compassion and care when we see someone in need of assistance, whoever the person might be. That's a start. But just a start.

8/10/2009

More Mercury on the Brain. Literally.

I ran across an interesting study that looked at the use of vitamin C, Glutathione, and Lipoic Acid in rats exposed to mercury vapor and whether these in conjunction with DMPS or DMSA would remove the mercury from the kidneys and brains of said rats.

Turns out that none of these, not vitamin c, not glutathione, not lipoic acid, alone or in conjunction with the chelators could remove mercury from the brains of the rats. DMPS and DMSA did reduce mercury in the kidneys, though, although the vitamin C, glutathione and lipoic acid made not a bit of difference.

The researchers' conclusion: "One must conclude that the palliative effect, if any, of GSH, vitamin C, or lipoic acid for treatment of mercury toxicity due to mercury vapor exposure does not involve mercury mobilization from the brain and kidney."

Ain't it fascinating the things one can find with access to three different university/college databases when one has a little time on one's hands?

References:
Vasken Aposhian, H., Morgan, D., Sam Queen, H., Maiorino, R., & Aposhian, M. (2003, June). Vitamin C, Glutathione, Or Lipoic Acid Did Not Decrease Brain Or Kidney Mercury In Rats Exposed To Mercury Vapor†. Journal of Toxicology -- Clinical Toxicology, 41(4), 339. Retrieved August 10, 2009, from Academic Search Complete database.

Mercury Poisoning Looks Like Autism How?

Brodkin, E., Copes, R., Mattman, A., Kennedy, J., Kling, R., & Yassi, A. (2007, January 2). Lead and mercury exposures: interpretation and action.. CMAJ: Canadian Medical Association Journal Supplement, 176(1), 59-63. Retrieved August 10, 2009, doi:10.1503/cmaj.060790

So autism looks like this how?

"Signs and symptoms of mercury toxicity vary with the form of mercury and route of exposure but include gingivitis, stomatitis and excessive salivation. Sensory peripheral neuropathy is
common, and central nervous system effects include personality changes, irritability, fatigue, tremor (usually intention tremor), ataxia, difficulties with memory and concentration, sleep disturbances and a metallic taste. Renal effects include both tubular and glomerular damage. In the fetus, organic mercury disrupts the cytoarchitecture of the developing brain and has been associated with neuropsychological changes after birth" (Brodkin et al., 61).

Oh, I bet folks who think it's mercury poisoning will point to the last, except they aren't arguing it was fetal poisoning. They are arguing it's the 12.5 to 25 micrograms of thimerosal in certain vaccines that did, forget about the 11.5 or so micrograms of mercury in a can of tuna. My bad. Then, they'll point out absorption and excretion is completely different.

What about chelation?

"The first step in treating all cases of heavy metal toxicity is to reduce or remove the source of exposure. In most cases this is all that is required.3,16 Chelation therapy has historically been used to reduce the body burden of heavy metals in patients with se-vere symptoms and highly elevated circulating levels of heavy metals.26 It is a process in which heavy metals are removed
from the body with the use of a chelating agent, a charged molecule that binds metals in a stable complex known as a chelate. The chelate is subsequently excreted in the urine" (Brodkin et al., 61-62).

"Chelation therapy should be carried out only in a hospital setting by experienced physicians" (Brodkin et al., 62).

What about chelating and then doing a urine test?

"This procedure is more commonly known as the chelation challenge test or
provocation chelation. It entails measuring urine levels of heavy metals before and after a single loading dose of a known chelating agent. It has been used to determine whether chelation therapy is indicated but is also used by some alternative health care providers to diagnose heavy
metal poisoning. There is no good evidence supporting the use of the chelation challenge test for either purpose, and findings from some studies have suggested that it can lead to misleading diagnostic advice" (Brodkin et al., 62).

Okay, so most parents of kids with autism who think it is heavy metal toxicity don't IV chelate. Gotcha.

So what about oral chelating agents DMPS and DMPA?

Here's a study showing them ineffective in removing elemental mercury after a person intentionally injected himself with elemental mercury in a suicide attempt.

Eyer, F., Felgenhauer, N., Pfab, R., Drasch, G., & Zilker, T. (2006, July). Neither DMPS nor DMSA is Effective in Quantitative Elimination of Elemental Mercury After Intentional IV Injection.. Clinical Toxicology (15563650), 44(4), 395-397. Retrieved August 10, 2009, doi:10.1080/15563650600671795

"Although treatment with DMPS or DMSA was associated with marginally increased renal excretion of Hg in our patient, clinically relevant elimination did not occur and evidence of
benefit is doubtful" (Eyer et al., 397).

So, I'll have to do some more digging, but for now it appears that the oral chelating agents DMPS and DMSA are ineffective, at least when mercury is injected.

Update:

In case you think oral chelators are no big deal:

"Chelation agents like DMPS or DMSA are increasingly used and are available over the counter in some countries. These drugs are used in patients with complaints that are attributed to mercury-containing dental amalgams and in children with autism. Conclusion. The reported association suggests that SJS may be a potential complication of DMPS therapy, and this should be considered in the risk-benefit analysis of chelation. The reported association suggests that SJS may be a potential complication of DMPS therapy, and this should be considered in the risk-benefit analysis of chelation."

References
AA, V., S, P., GP, G., & JN, B. (2008, June). Stevens-Johnson syndrome in a child with chronic mercury exposure and 2,3-dimercaptopropane-1-sulfonate (DMPS) therapy. Clinical Toxicology (Philadelphia, Pa.), 46(5), 479-481. Retrieved August 10, 2009, from MEDLINE database.


Trying to make this not look like a study dump like some folks do at some places. :-)

The 14 study argument is hogwash. There. In case I hadn't made that plain enough in my other posts. I've said it clearly. Complete and utter balderdash. I've used the IOM review in previous postings. Here's a quote from an article in Nature Neuroscience referring to it as well:

"Unfortunately, epidemiological studies do not support this link. In May 2004, a review by the Institute of Medicine (IOM)3 of over 200 studies (available online at http://www.nap.edu/catalog/10997.html) concluded “that the evidence favors rejection of a causal relationship between thimerosalcontaining vaccines and autism,” a view held by most of the international scientific community. The World Health Organization also maintains that
“there is no evidence supporting a causal association between neurobehavioural disorders and thiomersal-containing vaccines.”"

Reference: A mercurial debate over autism. (2005, September). Nature Neuroscience, Retrieved August 10, 2009, from MEDLINE database.

8/09/2009

The futility of Anger Misdirected and still missing the point

AoA has ran its weekly parental rant. So, here is my weekly countering.


None of my children were typical babies or toddlers. They met the gross motor skills developmentally on time, and the girls did better with talking than their brother did, far better, but no, they weren't like "normal" babies. On many levels, the girls' development was so much smoother compared to their brother. But, even they didn't imitate and it wasn't until this last year, at ages 7 and 5 that doing patty cake finally seemed like something to do. I don't think I've ever been pissed I was denied the "normal" way of things, though. I was too busy loving them, delighting in them, and working my ass off to make them comfortable and happy, while working on the skills they weren't developing on their own.

My girls are smart, charming, funny, different, and as long as things are going as planned, and all is right, they are fine. It takes a lot of effort on my part and theirs to keep things at an even keel. My son has added difficulties, can go on about yugioh and gangland until you want to weep from an obsession that has lasted years and shows no sign of abating. He plays beautiful piano compositions with a phantom of the opera flair. He smiles from the depth of his soul. But he often is lost in his beautiful mind and need frequent direction to keep him on track. And my gosh, he can bitch up a storm that lasts as long as the yugioh discussions. I love them all completely and totally. And I have devoted so much of my life and my energy into working with them to give them the best chances. I homeschooled my son for a decade and before that was in the school system with him daily. We did the meds the docs recommended until he had a stroke at nine; we did the standard OT, PT, and speech for him and my youngest gets these services now. No ABA because ABA has never been offered. So, I work on discrete skill sets they need to master, and I incentivize and sometimes use the taking away of a favorite toy or watching a movie or a special dessert to get the child to do the particular task.

It's called parenting. No matter what it is I do with my children, whatever amount of effort, whatever particular skill I am using, it is parenting. To call it other things and bemoan my state, my lack of what others might have with their children, is pointless. It serves absolutely no point whatsoever. And it wastes my time, my effort, and my energy, and it demeans my children. Seriously, think about it, if someone talked about their relationship with you in those same terms, how that would make you feel? Why is it that no one over at AoA is considering things from the child's point of view?

Michele has an excellent blog up right now, http://www.adayinthelifemij.com/2009/08/im-not-autism-mom-im-not-autism-parent.html, as does Bard Child, http://prismsong.livejournal.com/2549.html (which I talked about last night). They ought to be required reading.

I don't get being angry at a fictionalized concept that other parents of children with autism would want you to ignore legitimate medical concerns (and I'm not defining what's legitimate here; that's between you, your doctor, and your child) and not treat them. Of course treating underlying medical conditions will make your child feel better and be happier. To suggest that anyone would want your child to be constipated and in pain is to be raging at something that exists in your mind alone.

You write: "AND YOU WANT TO TAKE THAT AWAY FROM ME?!?!?!? WHO IN THE HELL DO YOU THINK YOU ARE??!!" (author's caps) http://www.ageofautism.com/2009/08/dont-try-to-tell-me-how-to-love-my-children.html#more.

And I think as I read yet another pissed off parent raging at the world, who the hell are you yelling at? Who said they wanted you to feed your child a fast food, fatty processed diet? Why are you so angry? Nancy Snyderman reports on studies that show no particular benefit of a GFCF diet to children with autism; that covers children with autism without accompanying gluten and casein intolerances or celiac disease or lactose intolerance. As far as I know, no study has measured the effect of this diet in children with those accompanying difficulties. If your children have those problems, of course you treat that. Of course you do, and I highly doubt Dr. Snyderman would suggest differently.

I don't get it. I don't get running week after week of pissed off parents who rage at things that don't actually exist. And if they do; if there are folks out there on the various forums you frequent who engage in the kind of hostile behaviors that some in the mercury brigade do (ahem), then why not say, on this site, so and so said this and that's what I'm raging at.

It's a false dichotomy. Age of Autism has decided to ramp up the rhetoric, now essentially defining themselves as the "if you don't agree with me lockstep on autism causes and treatments, then you're saying I don't love my kids." I'm going to name our "side" the "what the fuck is your problem?" side. It seems fair. And way more accurate on our side.

I get that there are more than two divisions, that we all have varying positions on autism, treatments, how to deal with it all. I get it, my friends and members of the facebook group and Raising Autism get it. We agree that we don't have to agree on everything. We respect those differences and the right of parents and adults on the spectrum to make their own decisions. We're trying to provide the most accurate scientific evidence out there on treatments, so informed, rational decisions are made. We're trying to get the input of adults on the spectrum who've been through the various treatments and find out what helped them and more importantly what hurt them.

We're working for acceptance for those with disabilities and those who are different. We're working to befriend those who are friendless, to be a soft shoulder, a welcoming smile. We're working to make things better for everyone.

What are you doing, as you rage against the world because you were handed a life you didn't anticipate? How exactly is Age of Autism working to make the world a better place for people on the spectrum? I know, the products from your sponsors will help to "recover" your children; they'll be on the over the counter woo for as long as your readers can afford to pay for it or until they wise up and realize they might as well have flushed it down the toilet. That's your effort, isn't it, really? Scare the shit out of folks, demonize "big pharma" while letting big "nutra" fund your propaganda, make the folks think it was the thimerosal, the MMR, the DTaP, lyme disease, SV-40 (you let it post, you're endorsing it, because you are controlling what you let on), sticky blood, yeast, and a whole host of other causes. And yet, your loyalists pay no attention to the inconsistencies or how you leave behind charlatans that even you wise up to as being bad for your bottom line.


Love your children, work hard for your children, and do something better with what looks like an incredibly selfish, self-absorbed and misguided anger from what I can see.

8/08/2009

One of the fun things I get to do...

Blogging can certainly have its rough spots, but the bright spots more than make up for it. This week has brought two young women and their blogs to my attention. So, I get to push for readers to give them a read! :-)


I shared Corina's in an earlier post; she also has a live journal one at http://neko-no-baka.livejournal.com.

Now, Bard Child (Nightstorm) is another young woman with a very interesting blog, and her latest post is a must read, I think, for parents with children with an ASD: http://prismsong.livejournal.com/2549.html. I hope you'll give it a read and check back with Bard Child and Corina's blogs.

I've also "met" David Brown and had the chance to look at his website; I hope folks will give it a lookover: www.evilpossum.weebly.com.

The best part of blogging is making new friends and allies, learning from each other and creating a support group that branches both the family members and those with ASDs and other disabilities. :-)

8/07/2009

B12 patches. I'm just saying.

"Lastly, a vitamin B12 patch is available, but there is little evidence to suggest that this vitamin can be absorbed through the skin."

http://women.emedtv.com/vitamin-b12/vitamin-b12-dosage.html


So, if you use B12 patches and think you're getting revved off it, chances are what you're getting is a placebo effect. Why not chug an espresso and pop a sublingual B12 under your tongue. It's cheaper, probably more effective, and espresso tastes good.

Just saying there are probably better uses of one's money and time. If you really need B12, then prescription injectable and nasal spray forms are the way to go. Really.

And seriously, don't even start me on the MB12 lollipops.

8/06/2009

A blog I think readers should visit!

Corina Lynn Becker, one of our Countering Facebook group members, has a lovely blog I hope everyone will go read: http://nostereotypeshere.blogspot.com/. She's titled it No Stereotypes Here - Neurodiversity activist blog. Corina is eloquent, talented, and quite moving.

I'm glad to meet you, Corina, and I am looking forward to keeping up with your blog! :-)

Add paranoia to the mix

I know, what can you expect from people who also have their articles over at whale.to? I mean seriously, what's a little paranoia added to the mix?

AoA writes this and had me laughing my considerably ample derriere off: "How do bloggers appear on HuffPo within minutes of a post by David Kirby with comment after comment, fully engaged in the autism vaccine debate, and yet, they never appear on "parent" posts about other issues related to autism? Are they ghostbloggers?"

http://www.ageofautism.com/2009/08/studies-show-no-link-between-autism-and-vaccines-boo.html

Really?

First off, perhaps because you hype Kirby's posts over at AoA and a fair proportion of your readers appear to be folks like me, wanting to keep tabs on your next bit of spin, distortion, or hysteria?

Second, because controversy causes comments. So, those posts about controversy over autism and vaccines generates more interest and more bickering back and forth.

Third, the rare positive piece relating to autism gets buried by Huff and gets no attention from ya'll, so nobody is aware of it. I've commented on positive pieces that AoAers have completely ignored.

Fourth, some of the posts that do garner modest comments, say, Amanda Copeland's previous piece, discourage further dialogue because of Copeland's heavy handed approach to folks discussing the post.

Fifth, heavy moderation similar to but not nearly as bad as at AoA discourages even the attempt.

Sixth, as a personal example, one of the new posts over at Huff by Lee Woodward, I'd comment on, except I looked through the comments. Positive pieces on acceptance of diversity and disability attract a share of asses, for whatever reason.

I suspect that other folks who comment primarily on the autism vaccine controversy posts have similar reasons for not inundating other posts, other than to offer a kudos or right on. How many times can you say that?

But, hey, if you want to twist that, AoA and blame it on ghostwriters fighting Kirby, you go for it!

8/05/2009

Would it have been too hard to just report? Gotta twist it, too, and fib a bit?

I've been so busy it just dawned on me I'd neglected to check in on what AoA was up to. Well, there was the latest article, just screaming at me. Would it have been too hard just to put the information there? Hey, folks, look what the CDC has on their website? This draft for
Brief SWOT Analysis & Vaccine Safety Communication/Media Strategy, where it lays out some of the difficulties in communicating vaccine use. No instead, they have to twist it, put the draft on another website and make the claim they're presenting it to the public for the first time. I googled it, it comes right up on the CDC's website. So which is it, AoA? Who made it public for the first time? Are your readers that incurious that you don't think they'll even ask, really? and then go google it?

Age's twist:
http://www.ageofautism.com/2009/08/cdc-media-plan-shocker-we-dont-have-the-science-some-claims-against-vaccine-cannot-be-disproved-.html with their link to the article at http://www.rescuepost.com/files/jim-moody-post-swot-safety.pdf

CDC's draft, right the frak on their own website, almost like they weren't hiding anything:
http://www.cdc.gov/dhdsp/CDCynergy_training/Content/activeinformation/resources/SWOT.pdf

A dialogue between Roger Kulp and 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.

Why I have a problem with HBOT

Here's the pilot study that folks who say there's research into HBOT on autism are touting. Of course, it isn't proving the efficacy of HBOT in autism.

"The effects of hyperbaric oxygen therapy on oxidative stress, inflammation, and symptoms in children with autism: an open-label pilot study."

Authors: Daniel A Rossignol, Lanier W Rossignol, S Jill James, Stepan Melnyk, and Elizabeth Mumper

There are several problems with this study.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18005455

First problem: no control group. We don't know if children without autism are less likely to have oxidative stress; we don't really know that children with autism in general have it because the studies that have found it have been small studies with similar problems to this one.

Second problem: sample size. Too small to be statistisically significant, nor was there any attempt to have a representative sample. Therefore, you can't extrapolate out past these 18 kids.

Third problem: The parental evaluation of clinical outcomes. As the authors themselves note: "The use of parent-rated scales and the fact that parents were not blinded to the type of therapy given to their child might have introduced some bias. Furthermore, there was no placebo or control group. Therefore, the improvements found in this open-label study could be due merely to chance or to the natural development of the children. In addition, it is possible that any clinical improvements observed could have occurred as a result of the increased close interaction between the child and parent/caregiver, or motivation and/or enthusiasm that may have developed in the parent/caregiver during the course of the treatments. Because this was a pilot study, the sample sizes were small which makes it difficult to make adequate and meaningful comparisons between the 2 different pressures and oxygen concentrations used. Due to these issues, a larger double-blind, prospective study that includes a control group and more objective outcome measures is warranted."

On many levels, it would be wrong if this study was used as anything other than a preliminary study which basically says this: well, gee, the parents were going to do it anyway so let's see if it changes oxidative stress levels (the argument behind the HBOT therapy).

Huh, it didn't change the oxidative stress levels (one of the arguments people are making as to whyt HBOT would help with autism) but there was a change in the parents' perception that their children got better. Never mind they are psycholigcally invested in seeing improvement. 40 sessions at 30 minutes to 2 hours. 100 to 300 dollars a session. A keen desire to see the child improve and checklists filled out by parents rather than third party blind obersvers rating. Lots of holes in this study. And yet it will be touted as proof that it helps the children.


"Eighteen children with autism, ages 3–16 years, underwent 40 hyperbaric sessions of 45 minutes duration each at either 1.5 atmospheres (atm) and 100% oxygen, or at 1.3 atm and 24% oxygen."

That's what these scientists studied. Do parents understand the huge problems with this study, with the design, sample, sample size, measurement methods? Apparently those who want HBOT listen to the folks selling it, don't actually read studies, or don't understand what the results actually say.



One person wrote how she couldn't understand why anyone would have a problem with this. Not all HBOTs are big rooms. How many kids getting HBOT are in the single person chambers barely big enough to roll over in? So, you sedating these kids? Because if your autistic child can go in a chamber that size without freaking the hell out, then you should count yourself lucky.

My other personal problem with this is is the cost, the time, the charlatans trying to sell parents home HBOTS for 10 to 20 grand. Great, so parents can administer this "therapy" at home unsupervised.

Side effects folks for a therapy that has shown no efficacy (after all if it's oxidative stress, those numbers should have improved after the treatments and they didn't):

http://www.aurorahealthcare.org/services/hyperbaric/faq.asp

"What are the risks or possible side effects of HBOT?
Under proper supervision, the risks of HBOT are very minimal. The most common side effect is ear pain, and patients are monitored closely for this. Rarely, oxygen toxicity, pulmonary barotrauma and vision change can be experienced.


The following list of potential side effects is reviewed with each patient prior to beginning therapy.

Otic Barotrauma (pain in the ears or sinuses). Some patients may experience pain in their ears or sinuses. If they are not able to equalize their ears or sinuses, the pressurization will be slowed or halted and suitable remedies will be applied.

Serous Otitis. Fluid in the ears sometimes accumulates as a result of breathing high concentrations of oxygen. It may occasionally feel like having a “pillow over the ear.” This disappears after hyperbaric treatment ceases and often can be eased with decongestants.

Oxygen Toxicity. The risk of oxygen toxicity is minimized by never exposing patients to greater pressure or longer times than are known to be safe for the body and its organs. The risk is less than one in 10,000 treatments.

Visual Changes (blurring, worsening of near-sightedness [myopia], temporary improvement in far-sightedness [presbyopia]). After 20 or more treatments, especially for those over 40 years old, some patients may experience a change in vision. This is usually temporary and in the majority of patients, vision returns to its pre-treatment level about six weeks after the cessation of therapy. It is not advisable to get a new prescription for glasses or contacts until at least eight weeks after ending hyperbaric oxygen therapy.

Maturing or Ripening Cataracts. Individuals with cataracts have occasionally had a maturing or ripening of cataracts.

Cerebral Air Embolism and Pneumothorax. Whenever there is a rapid change in ambient pressure, there is the possibility of rupture of the lungs with escape of air into the arteries or into the chest cavity outside the lungs. This can only occur if the normal passage of air out of the lungs is blocked during decompression. Only slow decompressions are used in HBOT to obviate this possibility. It is important for patients to breathenormally during during treatment and not hold their breath.

Fatigue. Some people may subjectively feel fatigue following hyperbaric treatment, but this is not a consistent finding.

Risk of Fire. With the use of oxygen in any form there is always an increased risk of fire."


But, some will say, my child improved. Again, objective third party measurement of improvement in behaviors? Or you saying, gosh, my child sure is quieter and calmer coming out of there. Huh. What kind of chamber did you put him in? Did you sedate him? Give him decongestants? Incentivize good behavior while in the chamber so that the child gets a treat?

Short of a third party objective measurement, you can't honestly say your own psychological need for your child to improve isn't coloring your interpretation of your child's behavior. And that doesn't mean the child's teacher or therapist saying your child's always quiet the day after, either.

Listen, I get it. I really do, from personal experience. I did the GFCF diet for FOUR years. I took any and all improvement to mean that the diet was working. Now, if it were the diet, when all three children were taken off of it, there should have been regression, additional behaviors. Gosh, no, they're doing just fine. No regression. Continued improvement. Of course, you know what also continued? The same hours of work with the children to help them master new tasks. Huh. So which is more likely to cause improvement? One-on-one work with a child on specific skill sets or HBOT, chelation, or whatever woo you want to use?

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.

HBOT is not harmless to the autistic child or to the parents who shell out the fortune and the time that could have been more effectively used. And there is no evidence that it fixes the problem that folks promoting it say is behind the autism.

Don't believe me? Trade four of those sessions for one-on-one sessions with the child where someone who wants to do it engages in play therapy, cognitive behavioral therapy, or social skills and then compare the child's state of well-being to after the HBOT.