8/12/2010

Still Good Work? Finding the Way to Balance and Community Building

There are so very many fractures in the online autism community that I often think it's a wonder any of us can talk to anyone else! I can't help but wonder if this is unique to this community because of, well, indelicate as it may be, the BAPpiness that is readily obvious in the parents of autistic children. 
        I own my BAPpiness, and I work very hard to not be overly literal, to try to see things from other people's points of view, to let people be when I can, even if I don't agree, as long as the point of view being forced on others isn't dangerous. And even when I post on the angry place, I take pains to note when the folks there do something right. I try to see them as the multidimensional people they are. They don't often post positive things at the angry place, and yesterday was a double heap of crap they should be ashamed of, but I'm just not going to dwell in that today.
      Instead I want to focus on folks who buy into some of the woo, but who I think also do some good work. Just two days ago, I wrote in my post, Late Night Ruminations, about some books I've been reading to review for Lisa Rudy's About.com site. I wrote, in that late night post (slightly edited for this post), about Rodney Peete's book (review can be found here): The Peetes are doing some good work. Their tremendous love for their children shines through, and Peete demonstrates on page after page that he gets the important stuff: the need to love and accept the child for who he is while you bust your ass to help that child reach his potential. That matters way more to me than the belief that their son is autistic because of vaccines. After all, Jay Gordon's their pediatrician. I enjoyed reading Peete's book and I think it's worth the time, especially if you're looking for a dad's voice. It has practical tips, too (and I can say this while declaring I am not paid for these reviews, not even in scooby snacks; I am however provided with the book -- in other words, I remain with no conflicts of interest to declare).
       Peete's book adds another dimensionality, another layer to the community, to understanding where parents are coming from. It was well worth my time. If you're looking for tips and are new to the autism world, it's worth it for you, too. It's worth it if you're just looking to understand folks better, too, if you want a bit of the larger picture.
       Despite having my attention drawn to the fact that the Peetes will be front and center at woo fest every bit as robust as Autism One, I stand by my review of the book. Reviews of books, if one is being as fair as possible, should be about the words in the book itself, as if the potential reader has no other knowledge of the author. Reviews of books should be about the books, with as little possible bleed over of preconceived notions. If I'd known that the Peetes were going to be appearing at the National Autism Association convention in November with such, ummm, paragons as Wakefield, Olmsted, Blaxill, Bradstreet, and Soma(!), it would have colored my reading. I can't deny that. 
       It's such a frakking mess. That's not grand company to keep, is it? Ick is my overriding feeling at seeing that line up. Really, it is a massive woo fest. So, what do you do? Do you dismiss, reject, cast out, refuse to work with folks who appear at overwhelmingly woo venues? Do you look specifically at what the individual is saying, what they are after, what they're trying to sell?
      I don't know. I think one has to look beyond the surface and refuse to make snap judgments.
      So, what non-woo is the conference having?
      Well, the first day there is a session on income taxes and disability and one on autism and marriage. Doesn't sounds too woo-ey to me.
       There are sessions on sensory processing disorder and teaching nonverbal children to speak. Could be woo-ey, could not. 
       Of course, you've got Soma speaking. Woo. 
       Olmsted and Blaxill. Holy woo! 
       Bradstreet. Yup, more woo.
       Wakefield! Ding, ding, ding. Woo-winner
       Chantal Sicile-Kira. Hmmmm. Well, you be the judge. She's a big fan of Soma and buys into what AoA sells. 
       On balance, this convention is focused towards biomed parents who choose to pursue all options regardless of the research or lack thereof.
       It's not a convention I'd go to. It's not one I'd want to go to. It's one that's sufficiently steeped in the woo that I'd question those who are speaking there. It bothers me that the Peetes are keynote speakers there.
      When I read this statement on the main page for the conference, I admit I rolled my eyes: "NAA is the leading autism membership organization for breaking through the myths of autism as a mysterious and incurable disorder. Recognizing that the future of those with an autism diagnosis cannot rely on raising awareness alone, we are committed to empowering parents and caregivers with the most up-to-date resources available to enable all affected individuals to reach their full potential."
       NAA promotes actively lots of myths regarding autism, so I don't buy this declaration. But, I have to repeat, the whole conference doesn't appear to be woo. There may be valuable and reality-based information that the parents attending might not get elsewhere, and the NAA isn't excessively gouging them on the conference fee (I've seen the Michelle Garcia Winner charge a lot more for her sessions than the NAA is charging for the full conference for two people to attend). On the balance, though, it will send vulnerable parents into woo, and it will line the pockets of woo-sellers.
       So, what do the Peetes get  out of being speakers there? Are they aware of all the woo, do they actively buy into all of it, are they promoting it? Honestly, I don't know.
      That the NAA's sponsor on that conference page is a company pushing HBOT chambers? Well, geez, not good, is it?
       No, it's not good at all. So, what do you do? How do you decide?  Do you boycott the Peetes' books, their foundation out of principle? I guess everyone will make his or her own mind up on that.
       Here's how I'm going to keep on working to build community. If your focus is on improving the lives of autistic individuals, being supportive and respectful of their individuality, if your focus is on being a positive support to other families, then I'm going to work with you, be friendly with you, and agree to disagree on things like vaccine-injury as a cause of autism. I am facebook friends with people who do facilitated communication, rpm, and others who do some woo that if I think on it, well, you know. As long as you aren't pulling an AoA, pushing the woo, selling the woo, profiting on the woo, I don't have a problem.
       And I'm gonna keep checking into outfits like NAA and other nonprofits to look at what they do with their money, who their sponsors are, what information they provide to the public and how accurate it is.
      But, and this is important, I believe, I'm gonna reserve judgment on folks who support the organizations. And here's why. Most folks don't go digging through tax forms to see how organizations spend their money. Most folks look at the outer shell, see that the organization has stated goals of being helpful, and they support the organization, volunteer for it, heck, even walk for it. They're trying to help. They're trying to make a difference, and they don't deserve to be judged negatively for trying to do good, even if you aren't thrilled with the actual organization.
      So, I'm not thrilled with Autism Speaks on a lot of things. I don't like what they do with most of their money. I think it's obscene for someone to make more than half a million dollars a year from a nonprofit organization. So, I judge the organization and the person taking the bucks. I don't judge the person donating. Even if they know. Why? Because in a lot of communities, the only thing going autism-wise is the Walk. The only thing going.
      We need to work in our local communities to give folks other options, but until we've got that, we're going to have to be pragmatic and work within the structures and organizations that already exist.
       We can stick to tightly described principles and accomplish nothing, connect with no one, because no one is going to see the world in the exact same way we do. Or we can branch out and focus on big goals like building a supportive, respectful community and let some things go, or at least not be directly adversarial while we're working on common goals. And maybe by working on those common goals we'll find a way to bridge divides, respect each other, and care, care enough to find a way to talk about the differences calmly.

12 comments:

Pia said...

Excellent article. I am struggling with dealing with the woo-community. I have tried to attend a few support groups locally, but all I hear is woo-related advice, and I get so frustrated because I don't think the answer to my concerns is in woo. So I don't get to have a community as a result. Make me feel rather lonely in it all.

Socrates said...

By 'eck, Chuck, don't they have astons in Texas?

I've got a gross over from WWII (donated by the NYT)- I can air-mail them.

I'm writing to Autism Speaks to ask them to offer you a post - something like Head of Community Moms or something.

This post should be on their blog.

KWombles said...

Pia,

I understand. I also know that setting up your own support group with a non-woo platform can result in a group with a membership of one. hee. :-) I don't know what the answer is, other than doing what we're doing online, looking for a community of like-minded folks.

KWombles said...

Socrates,

The link to astons takes me to a log in page, so I don't know what those are!

:-)

lifewithasperger said...

I love this post, but I think part of the problem is that, regardless of who or what they were before Autism affected their lives, many of the folks who support entities like AoA are no longer multi-dimensional. They've closed themselves to alternate points of view for so long that their sole focus seems to be vaccines or what-have-you.

Also, I don't ever hear them say things like "help auties reach their fullest potential". Not over at the Angry Place. I mean, that's why you call it the Angry Place right? Nor do they speak of love or acceptance, unless it's to use those terms in derision of those with whom they disagree.

It's really good that you're rational and open minded, and I believe there are more like you out there than there are like the folks at AoA. But I am now very cynical about the possibility of joining forces with the woo folks.

lifewithasperger said...

Wouldn't you know as soon as I say I don't ever hear them talking about love and fullest potential. That's what's up on their site today.

Maybe it's not as hopeless as I thought!

KWombles said...

Hee, that post today is just to lull you into a false sense of complacency. Notice that it is a guest poster. Also pay close attention to the comments. Either there will be very few, or they'll more than likely be the same old negative comments.

I don't know that the editors over there can be worked with. Pretty sure there's no way to work with their regular commenters, but most bloggers out there, even if they do a little woo, are decent folks who get it, who love and honor their children and just want to help them achieve their potential. Those folks, how can we not work with them?

Olmsted, Blaxill, Wakefield? Nope. Stagliano? Yeah, no. Probably not. None of that, though, is because I'm not willing to cross the aisles; they aren't. They aren't about respecting individuals on the spectrum and working to make the world a better place.

And even some of those who say they're working on making the world a better place you gotta watch, because when you look, you see they're working with Wakefield. Hmmmm.

If they were, the crap they pulled yesterday wouldn't have happened.

Attila The Mom said...

Little Guy's girlfriend's parents are all into woo. They even take her to be "healed" at her church.

Since the two of them are still "into" each other after 4 years, I just refrain from commenting, and even eye-ball rolling. These people might be my in-laws some day. LOL

Your word verification is "therval". Sounds like something that might cause autism. LOL

kathleen said...

Good post..:) Yes..most people don't dig through everything..It is a double edged sword..I've seen some people say that they join certain groups so that they can be the voice of reason-or sometimes just because it is easier to join than to fight..sigh. But I agree-many people I talk to believe in vax damage etc.etc.-but at the same time think their kids are the greatest. Finding common ground-and finding people willing to stand on it...together-that is the challange..

Roger Kulp said...

I think it may be based on some naive or misguided hope you can talk some sense into these people.

How are The Peetes anydifferent from mainstream doctors,like Tim Buie,or Susan Swedo,who have spent years trying to reach out to the antivaxers?This is a mistake.Like any plague upon humanity,you need to isolate and ignore the likes of Wakefield,and Olmstead,and maybe they will eventually go away.

Clay said...

An AoAer named "Maryann" posted to my blog the other day. There was a technical glitch in publishing it, but I didn't delete it. I was able to publish it the next day, and tried to point her here. That seems to be the best I can do, in bridging the gap. Myself, I just don't have the patience anymore, but I salute your efforts.

Alexander Cheezem said...

Let's not forget the contents of the speeches... which sort of highlights Granpeesheh's ("The Child as a Whole: Why behavioral and biomedical interventions are both critical to growth and recovery."). Frankly, I'm more than a little upset with the NAA as the last NAC was not only within walking distance of my house but also featured a major government corruption issue.