8/04/2009

Damn Fools and the Mythical, magical Neurodiversity Movement

The mythical, magical Neurodiversity Movement Law:

Any poster who argues against a mythical, magical neurodiversity movement that posits that parents of autistic children (children with autism) believe nothing should be done to help said children achieve their potential and that therefore the poster is the better parent/person/martyr/victim immediately loses any credibility and proves his/her priority is not the child but him/herself.

As a rebuttal of sorts to the artificially constructed ND movement that some folks seem to need to place anyone who disagrees with their conception of autism and cures and a reflection on what it means to love our children as they are while working with them to achieve their full potential:

It's been an interesting summer in the blogosphere, as readers know. I've written before about the different groups that folks in the autism community seem to want to split into. I think that I've done a fairly objective job of that, but as the summer has progressed, it's become even more apparent that this idea that parents broadly divide into vaccines caused the autism/no vaccines didn't cause the autism and anti neurodiversity/ neurodiversity autistic adults really doesn't even come close to covering the actual schisms, let alone the perceived ones. I have never argued that there were only four groups; in fact I argued that there was a continuum, a spectrum, if you will, of where parents of autistic children and autistic persons fell on causation of autism, treatment of behaviors, treatment of co-morbid medical disorders, etc.

In short, it is a quagmire, one that seems to be growing more pronounced on the internet by the day. Of course, that could certainly be a case of availability heuristic, but I restricted it to the internet, not to the real world where folks might be mingling in their daily lives. Maybe it isn't so divided there? Or maybe it is, folks gravitate to support groups that meet their particular philosophy and don't mingle?

I don't actually personally know any other parents here where I live who have children on the spectrum. I know of them, I know they exist, but I don't know them. I haven't decided if that's a good thing or not. I know plenty of my bright boy's friends at the center, and have met some parents, but that's not quite the same thing. It isn't autism related, or if it is, the autism isn't what's obvious. There is a support group here for parents and their children who have an ASD, but I haven't gone; the reasons for which are complicated at best. Mostly, though, because I'm not big into going into group settings (I know there's some ironies there considering I'm a college instructor and go into a group setting everytime I teach!).

So, I don't know how bad the divide is in the real world, and I'm not speaking to that. I don't read any of the online forums that many parents do, but some of my internet friends share with me their experiences. I felt sufficiently warned that if it was worse than some of what AoA does, I felt I was better off not reading them. Besides, there's plenty to be seen at Huff when they run an autism related post, at AoA, and at various blogs.

My woo-fighting friends and I felt strongly enough about creating safe places for parents and for individuals on the spectrum to interact that we created the Countering Facebook group and Raising Autism. We hope to grow them into vibrant, busy communities where tolerance and acceptance is at the forefront, along with a willingness to engage in critical thinking. We think we've got a good start, but we have definite opinions on what we would like to see happen in the years to come. And I hope that those who read us will help us create that vibrant community where all have a voice and all are respected and welcomed.

See, that for me, is what neurodiversity is: welcoming everyone to the table, treating everyone as equally valuable members of society with something to offer.

Apparently, that's not what it is for those who say they stand against ND. They've created, at least from what I can read out there on the internet, a fictional creation that bears no resemblance to what my friends and I are talking about as we go about our business of working to make the world a more accepting place for our children.

No, I don't think vaccines cause autism, and I've provided scientific evidence for that reasoning time and again, and often it's not been the 14 studies that Obradovic is still railing against. I do think that vaccine injuries occur, but that's a separate matter. I think vaccine injury and autism can co-exist. I think ASDs can be misdiagnosed, in both directions.

No, I don't think that autism is mercury poisoning. And I've provided evidence for why.

I sure don't think it's lyme disease or SV-40 or the combination of these two and mercury, as one individual at AoA seems to think.

I don't think IV chelation, HBOT, or by all that is reasonable and sane, IVIG injections are the way to treat autism.

I think if you want to use supplements on your child and call that chelation, well, alright, then. Fine by me. Heck, I'm even all right with it if you want to piss away thousands of dollars mixing your own supplements from a person who calls herself a doctor and promises you a cure in three years if only you and your child can keep up with her protocols. I might think your critical reasoning skills are incredibly rusty, but if you've got the cash... Fools and their money parting company and all..

Do I think it's right that you force down your child's throat dozens upon dozens of pills with no know efficacy nor any known safety? Honestly, no. But, maybe you'll wise up, maybe there will be a placebo effect for you or the child (as said child associated 50 plus pills a day with altering his or her behavior so that the parent doesn't think the pills are needed any longer), or maybe you'll run out of money, energy, time and decide it isn't worth it when you could be spending that time working with the child, loving the child, playing with the child, or I don't know, doing some self-care, self-pampering thing for yourself.

However, all that said, it doesn't mean if I disagree personally with your choices or beliefs that I'm impugning your love for your child. Maybe if you think that your willingness to go as far down the woo trail as your feet and your wallet will take you proves you love your child better than I love mine, since I'm not willing to put a toe on it, then it isn't about making your child better or loving your child more. It's about you. It's about keeping ahead of the Jones's. It's a yuppy one-upsmanship thing that makes you look like a damn fool to the rest of us who just want to help our kids achieve their potential, do the best they can, be as happy as they can while helping each other on our journey. You know, singing kumbaya, and all. Making sure that bullies know they can't attack our children, that folks who are different really aren't any different when it comes to human dignity and value.

But, hey, if a portion of the autism community wants to make up a mythical, magical neurodiversity movement and posit that the moms in this movement as well as the autistic adults aren't interested in helping others and aren't representing the more disabled, if it makes these people happy to cast themselves as the victims, martyrs and stars in their very own pity play, then by all means, they can keep engaging in their magical thinking. I'll keep reaching out to parents who want to stay grounded in reality while working to make the world a better place for our children.

Now, I'm going to keep thinking you folks who do that, who are so entrenched in your version of reality that you never leave your echo chambers, are damn fools, and I'll probably point it out when it irks me enough, like when you rise to the level of bullies and are a part of the problem my friends and I are working to solve for our children. But you can keep on keeping on. I'm sure you feel the better for it, even if your children may not. I'll keep wishing you well and hoping for the best for you and your children, and I'll keep a spot open for you if you're ever ready to sing kumbaya.

9 comments:

Mom26children said...

Heck Princess Kim,
I say we slap Dr. in front of our names and those fancy initials on the back of our names and go make a killing in the autism community....
Oh, I forgot one thing...
I could not do that to another person, I have a conscious.

Mom26children said...

Sorry,
Meant to sign it...

Dr. Jeanette O'Donnell N.D., Ph.D., NHD, AMD, HHP, FAAIM.

KWombles said...

Jeanette,

You're a hoot! :-)

Mom26children said...

That is Dr. Jeanette to you, Dr. Kim !!!

Mom26children said...

My question is:
How does a doctor in California..
http://www.nancymullanmd.com/
prescribe B12 patches for a child and mother
in Kentucky???

Mom26children said...

http://www.nancymullanmd.com/ASDpaperandbuttons.html

Never mind...she is a Yasko clone...

Roger Kulp said...

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 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.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 ?

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

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

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.

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.

KWombles said...

Roger, your comment merits a larger response, so I will post it as a new blog. I appreciate your comments.

kathleen said...

I just went and read the blog Roger mentions and I don't see it saying that at all. So I am a bit confused.
I just think that everyone deserves basic human rights. I too don't mingle much within the autistic parent community in my area. So I don't know the answer to that question. I don't understand why people get so angry when you talk about acceptance. N.D. as far as I can tell is an idea..I don't know of any movement..or I just didn't get the notice..What is so wrong in trying to create a better world for everyone..and why, when I say that, am I told-"your kids aren't severe" I ask...how do you know? I also ask-what does that have to do with anything? I want a more "user friendly" world for my kids.For everyone. What is wrong with that? I love the new green background! :)