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>Conversation goes a long way towards kick ass kumbaya

September 19, 2009

>It’s been an interesting week here at Countering; one of my posts (Sucked into the woo-vortex) has seen tremendous discussion and progress towards understanding where parents who appear to be locked in an unending war over vaccines and autism are actually coming from. If you read Huffington Post’s articles on autism and vaccines, then you know what I’m talking about. There is an us-them mentality that prevails. AoA, which crossposts a lot of stuff at Huff, does what it can to stoke those fires so that parents who believe their child’s autism was vaccine related don’t have the opportunity or even the desire to relate to parents whose children’s autism was not regressive, was not related causally or correlatively to vaccines. And Huff’s format ensures hostilities take the court every time.

I don’t know how long the war’s been afoot on the internet; I just came to the table in March of this year. I’d never heard of AoA until March, although I had visited several blogs and forums related to autism before (mostly those run by autistics for autistics, since it was the autistic culture I was interested in). I know, you’d think since I’ve been dealing with autism for nearly two decades (autism awareness came to our house when Bobby was four, but his dififculties began at birth) that I would have really known all about this internet world of blogs, forums, and sites relating to autism and vaccines. I didn’t. I knew about Wakefield when that came up in 98. I knew about secretin and every other woo idea that came along. I noticed, and I went on about my business of raising my son, teaching him, working with him, reading journals and scientifically based books about autism, and all the stuff on the internet passed me right on by.

As the vaccine controversy got louder, I began to pay a little more attention, but it was to get the articles on vaccines and study that, not to read what parents were throwing around. Anecdotes rarely move me. May make me cry, but do not move me. I’m interested in what we can know through science. We are such fallible creatures and believe all manner of woo, some of it harmless and frankly beneficial to our well-being and a great deal of it that is harmful. I may find a person’s story compelling, but I won’t make health-related decisions based on one person’s story. No one should. Testimonials work, though, even when we know they should not. Psychology is every bit as fascinating as people watching, if you were wondering. It is people watching, but on a scientific footing.

In March, I had three weeks where I was stuck in my recliner and with a laptop in my lap. And I explored to my heart’s content. Children in school, the bright boy settled into his life at the center, students being managed via email, and for the first time in my adult life, I had hours upon hours of time to fill. Oh my.

What a world I have found in these last six months! It has been life-changing, endlessly fascinating, and it beats video games or tv to pieces for entertainment and for creating a deep and abiding satisfaction. I love people and their stories; people watching is my favorite thing to do. The internet gives you the freedom to people watch more people than you could ever do in real life. And not only watch, but the opportunity to interact and form relationships that change your life and a depth to them you didn’t even know you were missing. Tapestries being woven, that is what I see as I write my blogs, read the comments, read others’ blogs, leave comments there, and watch relationships being built and grown over the passing months. Lovely stuff, even when it’s dealing with the division within the autism community; funny, I know, but true for me.

So, I’ve spent the last four months (has it really only been that long since I started Countering on a whim when AoA wouldn’t post my comments?) using this blog to deal with, well, countering AoA and other sites promoting woo. And I’ve developed the idea of kick ass kumbaya, a way of approaching this division in the autism community. It isn’t enough to just woo fight, or for that matter, dumbass hunt. Fun, yes, in and of themselves, but not great for community building unless you are building it on exclusionary criteria. AoA, Gen Res and the like already have the corner on exclusionary community building. I’m interested in trying something different.

The autism community is that. A community. So, let’s act like we’re all members of the same in-group and see where we can get. I know, that’s probably my love of  the ideases of Joseph Campbell and M. Scott Peck coming through, but, still, a community that accepts everyone to the table and holds them to be part of the ingroup. Sort of like family, you know. Gotta let them to the table and then deal with them. Find a way to live together. That begins with understanding where they are coming from. A little theory of mind in action (and no, I don’t think autistic people lack an awareness that other people have minds of their own– I think we all make that cognitive error at times, and assume that others know what we know, among other things).

Kick ass kumbaya works towards community building, says we take on the woo and those who would prey on others’ vulnerabilities and stand for those who can’t stand for themselves (and for those who want the company), but that we do it with real compassion for the people involved (okay I say that, but that’s what kick ass kumbaya means to me).

That means consensus building where possible. And it means recognizing an innate need to create in-groups and out-groups. Once you know why you do some of the things you’re doing, you have the ability to stop doing that when it is no longer advantageous.

We have a generation of autistic individuals coming of age. My son turns 20 this year. My daughters, who will be 6 and 8, are in the next cohort that will become adults at the end of the next decade. We have ten years or so to work to make the world a better place and a more accepting place for this current cohort of autistic children. Their autism isn’t going to magically disappear; no amount of supplements and MB-12 pops is going to make their brain be wired differently. They see the world differently; they have more challenges to face and overcome. We need to focus on effective therapies to ease their challenges and help them be successful and we need to redefine what success is. Success should not have to be a square peg fitting into a round hole.

My goal is to make the world a softer place for my children and the hundreds of thousands of children in this country who are like them (and I’m not just talking about autism). Part of that fight to make the world more accepting of them and easier to navigate for them is fighting woo.

This woo says that my children need to be recovered and if I only through enough money at it, go down every possible avenue of quackery, I will have recovered my children. This woo denigrates who my children are; it dehumanizes autistic adults. It says they are damaged, defective and need to be fixed and made whole. It terrorizes parents and makes them hate the medical establishment all while promising expensive cures that medical insurance will not pay for. It’s medicine, but it’s maverick medicine. And we all know that the lone holdout has the courage of his convictions, and if he has the courage of his convictions he must be right. Need I remind anyone that courage of one’s convictions manages to get a fair amount of people killed? It isn’t courageous to be a lone voice when that lone voice profits off of parents’ desperation. It’s incentive to profit. It’s hero-casting at its best. It is ego and pride. And desperate parents not listening to their woo radar.
 
We want our children to be healthy, happy, successful, to have every advantage, and to do better than we have. Autism, especially the way so many out there are trying to cast it, robs parents of their desires for their children. Except that it doesn’t. That’s bullshit and a decision that everyone makes for themselves. You can be autistic, you can be disabled, and be happy and be healthy. Successful? Yes, if you decide to define success on whether a person is a good person who tries to be of service to others to the degree of one’s capacity to do so. On those measures, even on a bad day for my son, he has achieved what I wanted for him: he is happy, he is healthy and he is successful (he is who he can be and there is value and worth in his existence). Does he have every advantage? No. Will he do better than I have? Hmm. Depends on how we define it, doesn’t it?
 
Too much of what’s going on in the autism community isn’t about the autistic individuals. It’s about the disappointment that parents have faced upon realizing that their hopes and dreams have been dashed, that life isn’t going to go quite the way they thought it would. It’s about quick fixes and easy blames. It’s about ego and id.
 
Many of the challenges our children face are daunting.  I don’t make light of those challenges, nor how these challenges serve to challenge us as parents. I don’t belittle the struggles that we all face to find a way to cope with caregiving beyond what we were planning for. Nor our fear for the future.
 
But you know what, what AoA’s doing isn’t doing anything to make that future any brighter. It’s not. It’s not building a strong, positive supportive community. It’s not dispassionately examining the science, nor the gaps in the science. It keeps trotting out junk science disguised as the lone heroes finding proof of a vast conspiracy to keep us all dumb and down. It’s dopamine and hero journeys.
 
 
Let’s decide on a different quest. Let’s decide to find the humanity and the commonalities between those who would appear to be on different sides. Let’s show that actual deep, meaningful conversation in which the other’s humanity is never forgotten is actually more satisfying and rewarding than knocking fake dragons off of fake castles. Seriously, let’s find the dopamine in kick ass kumbaya.

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24 Comments
  1. September 19, 2009 1:47 am

    >BRAVO!!!

  2. September 19, 2009 2:39 am

    >So true… So true…It seems to me even if these folks kids didn't have autism they'd find something in their children to be frustrated with instead of accepting them and understanding them the way they are…Society needs more compassion.

  3. September 19, 2009 6:14 am

    >Whoa, Mama, I'm scared of you! Um, what that bit of vernacular means is that your speech there packs one helluva wallop, and commands the respect of all sides. And it should have the intended effect of bringing the sides together. I'm going to link to it on my Lists, and would encourage others to do the same. This is powerful, and should be read by all concerned. Kickass and Kumbaya!

  4. September 19, 2009 1:24 pm

    >:-)More compassion, more acceptance, and more critical thinking. Gonna do my part to promote all three.Thanks, Clay. 🙂 See all of you at Thelma and Louise's internet party tonight?

  5. September 19, 2009 10:32 pm

    >Well said-well done-now lets get to work!

  6. September 20, 2009 3:28 am

    >Actually the Age of Autism website started as early as 2004 when Dan Olmstead was writing his articles. (I was almost going to call him Donald). And then the blog started last year.

  7. September 20, 2009 5:28 am

    >Kick ass indeed =D thank you for being a great role model Kim

  8. September 20, 2009 9:33 am

    >KW,I'm in complete agreement. Having spent sometime researching Polly Tommey's band of Warrior Mothers, I can't help but notice there are acres of common ground…It's just here's a great big pile of steaming horse poo-woo that's stopping us uniting and collectively kicking ass.Ps. flower pics – 10/10

  9. September 20, 2009 11:22 am

    >Adelaide, 🙂 I was aware that AoA went back formally to June of 07; it just wasn't on my radar.Socrates, thanks; flowers are my love; it's been a tug this past summer: tend the garden or blog. It got away from me, some, and is wildly overgrown with sunflowers right now, but they are so pretty.Nightstorm, Thanks. 🙂

  10. September 21, 2009 5:53 pm

    >This brings up a number of points that need to be addressed.There are a lot of things NTs (God I hate using that term.),including parents can never understand.A big one is that there can never be any sense of community as far as autism is concerned.One point that most people overlook,is that those of us who had more severe forms of autism as children,and have recovered to the point where can form any real opinions,don't like people with Asperger's at all.Some of us harbor outright hatred towards them.The differences are just too many and too strong.I commend Johnathan Mitchell for showing as much tact as he does when talking about neurodiversity and Asperger's,because I could never do that.AoA only gets is part right.Autism is a medical disease,and only partially genetic.The role genetics plays probably varies greatly from person to person.Treating the medical conditions that so often a big part of the overall picture will improve the autism itself. AoA is about the only blog that does talk about this,much as Harold Doherty is the only one willing to discuss self-mutilation (How about living with both like I have.See why I don't like aspies .)My problem with AoA is they do this as sort of an afterthought,and spend most of the time on vaccines.The sentimentality and all the comments about how this or that makes the poster want to cry all the time drives me batty.no amount of supplements and MB-12 pops is going to make their brain be wired differently.Chelation is one thing,but if you could give your child supplements,that would allow them to talk better,control their stimming (I know Michelle Dawson,and her ilk say stimming and self-mutilation are a big part of who they are,but some of us see it as as big of a problem,and an annoyance as having epileptic seizures.),or control your child's meltdowns,would you do it ?Don't knock it until you've tried it.You won't be normal,you will just be an autistic who doesn't do this stuff.Some of us see this as an improvement.You rarely fully recover from autism,you just manage it,like diabetes or epilepsy.That does not come from psychiatric drugs,or from the neurodiversity belief of accepting these things as "differences". Mainstream science doesn't have all the answers.As far as autism is concerned,they are a mostly a flat earth society,and I don't mean the guys who cut Waleeco,The sad part is that far too many neurodiversity parents end up sticking their kids in institutions when they turn nineteen or twenty,and what treatment they get is all psychiatry-based.

  11. September 21, 2009 7:35 pm

    >Roger.."There can never be any community" I beg to differ..actually I don't. If you were standing in the middle of a community-dead center..you would still insist that it did not exist.What medical conditions? Yours?? I'm not even going to cite studies because with you it is not worth it-you come on to a blog-state your position and then run away..I've been down this dialogue with you before-as have numerous other people..it is a waste of time. So I am going to say just this. You have your experience-you have shared it all over the internet. I would NEVER detract from it,invalidate it, or look at you as somehow less because of it. It would be nice for a change if you gave others the same respect. You know what you are Roger?..in a very bizarre fashion-you are an "autism snob" .You base everyones statements on your own experience-and you consider your experience to be the most valid.

  12. September 22, 2009 5:57 pm

    >kathleen, since when do you favor marginalizing the experiences of adults on the spectrum?

  13. September 22, 2009 11:28 pm

    >And just how am I marginalizing Lurker? I asked Roger a valid question-why does his experience ALWAYS trump anyone elses?

  14. September 22, 2009 11:49 pm

    >kathleen, look at the way you attacked his reputation and made an exaggerated accusation.

  15. September 23, 2009 12:07 am

    >Thelma's tipped enough tonight, don't rightly feel like goin through all them damn pages ta sign in an hope ta member ta come give Lurker his share of the whoopass. Likes ta make trouble, this Lurker. I like troublemaking with a purpose. Don't sense no purpose ta what Lurker lurks around doin. Kathleen did no such thing, ya little dumbass. Ain't no exaggeratin ta it, neither. Now listen here, Lurker, that Roger got him a heap of problems a mile wide. One of em is not knowin how ta conversate. Comes around ta blogs, leaves his comments and runs on. Talks about elopin and such, makes Thelma wonder if the man remembers what he writes, when he writes, and where. I expect not. Mayhaps that's why he never comes on back.You, though, Lurker, ya smart enough an aware enough, I reckon ya knows what ya is doin.Ya are not interested in anythin more substantive than Roger is; reckon ya do this ta get ya jollies.

  16. September 23, 2009 12:12 am

    >Thats right Thelma! Lurker is flaming..guess he couldn't READ the part where I wrote"I would never detract from it (Rogers experience)invalidate it or look at you as somehow less because of it" I shouldn't say couldn't -I should say chose not to.

  17. September 23, 2009 12:15 am

    >Boy howdy Miss Kim! I done kicked Lurkers behind to tha curb over at our spot! Yee Ha and a side'o dumbass! Told him ta let tha door smack him in tha ass on tha way out too! Boy needs a whup to tha head-thats fer true!

  18. September 23, 2009 1:12 am

    >kathleen, I don't strongly believe that lip service, as the other things you said belied that.

  19. September 23, 2009 1:25 am

    >Roger pretty much describes the mainstream options for people with autism as being almost exclusively psychiatric medications.In this, he is severely out of date, as are his comments implying that the mainstream does not consider dietary changes or supplements for people with autism.He also states that AoA is the only blog to talk about co-morbids, and their inherent effect on the lifes of people with autism. He is incorrect about this, (and has even berated ND bloggers for talking about co-morbids) as he is about claiming that Harold is the only blogger to talk about self-harm. Some bloggers have even posted pictures of such from time to time.During pointing out that there are problems with Rogers view, kathleen is quite justified in pointing out that Rogers arguements exhibit egocentric tendancies. These tendancies are not unknown amongst people with autism.Questioning someones point of view is not marginilisation, nor is it discrimination on the basis of their status. By accusing kathleen of marginilisation you are trying to argue that her counterpoints are not valid, yet you have made no effort to provide any sort of arguement for why her counterpoints should be seen as invalid.Your next post will provide an arguement for why her counterpoints are invalid. If it does not do so, all of your accusatory posts will be reported.-Dedj

  20. September 23, 2009 1:30 am

    >Also, your initial accusation implied that she marginalised Roger because he is a person on the spectrum, rather than any legitimate concerms with his arguement. Roger has no right to be protected from legitimate criticism just because he alledges that he is on the spectrum.You effectively accused her of disability discrimination purely on the basis of her opponent being disabled.

  21. September 23, 2009 2:01 am

    >Lurker,You're pushing it here. Keep acting like an ass and all comments of yours will be deleted as soon I see they've posted. We've been nothing but respectful of Roger, despite his insults to our integrity.

  22. September 23, 2009 2:12 am

    >Lurker,You are a complete ass. There's no point in arguing with you; it assumes you are willing to engage in reasoned dialogue, which those of us familiar with your garbage know you are not. Your last post is being deleted.

  23. September 24, 2009 3:13 am

    >Want me to make a .pdf of the latest evaluation I had for my autism from this guy ?http://hsc.unm.edu/SOM/psychiatry/faculty/campbell.html If you want to send him an email,and ask him if I'm autistic,go right ahead.Oh I got one more to add to of all of my heap o' trouble.My DAN! doctor.I could post a link to his site too,has been doing blood tests like crazy.I just got word yesterday,I have severe megaloblastic anemia,as a direct result of years of malabsorption,from my bowel disease people with autism aren't supposed to have.

  24. September 24, 2009 11:27 pm

    >Roger, there's nothing stopping people with autism from having bowel diseases. I have no idea where you got that idea. There's certianly nothing in the mainstream that says people with autism cannot have bowel diseases.Certainly not from Kev Leitch and the like over at lb/rb, they even provided you with the correct clinical term.You really do come up with the most curious nonsense from time to time.-Dedj

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